October 25, 2010 at 8:22 pm #40320
Welcome to the Topamax Forum
January 8, 2011 at 10:45 pm #41292
I used Topamax for about three years. Initially, it seemed to work. It made me feel a little tingly in my legs at first, but eventually that went away. I lost a lot of weight, about forty-five pounds by the time I stopped taking it.
Side effects started to become noticeable about a year after I began taking it. I could not concentrate in school and my grades in some subjects dropped from ‘A’s to ‘B’s and ‘C’s. My migraines were coming back more and more frequently, and with greater force. I was forced to quit sports and other extra-curricular activities.
It was difficult to quit taking Topamax because I got withdrawal symptoms. For the next two years, my grades have improved to straight ‘A’s and I am able to do much more. I currently take Feverfew herbal suppliments, which seem to help a little more. So far, none of my medications have been effective in preventing or treating my headaches.
February 24, 2015 at 7:49 pm #61171
I recently gave up on Atenlol as a preventative (have also failed before with low dose anti-depressant). We are trying Topamax this week after the worst week of my migraine life. I am on the very gradual intro to Topamax (15 mg once daily for week 1). I have tolerated it very well. I have noticed none of the horrible symptoms described here, but perhaps that is due to my very small dose. My question pertains to the future. My neuro wants me to increase 1 15 mg pill weekly until we get to 100 mg a day or I stop tolerating it. But I have had no pain all week, and the stories on here (esp the kidney stones) scare me to death. I am tempted to see how little Topamax I can use and get a benefit. Is this a strategy anyone has followed? Is there a problem with that logic? Does the benefit diminish at such a low dose? thanks
February 27, 2015 at 1:01 pm #61248
The plan your doc has you on to increase Topamax by 15mg every week is pretty common. It sounds like it’s helping you at a low dose! However, it could just be that you’re body has finally calmed down after your last horrible attack. It’s so hard to know. I would stick with your doc’s instructions, but if you get between 50mg and 100mg and find great relief, let your doc know and maybe you can just stay at a smaller level.
February 27, 2015 at 2:12 pm #61252
Katie, thanks for the feedback. I think you were right–I think I was in the calm after the storm. I had another storm hit yesterday (maybe because of a delayed meal and marathon day at work?). Regardless, 15 mg of Topomax didn’t cut it. I will start increasing the dosage as the doc ordered.
One other question– folks on this forum talk about using a split dose, but my doc ordered a 6 week incremental raise to 100 mg with each pill being added at night. My migraines have been hitting at lunch lately, making me wonder if a split dose of Topomax might be smarter as long as I am not experiencing symptoms I would rather sleep through. thanks
March 2, 2015 at 3:29 pm #61318
I’m not sure about splitting the dose and taking half at night and half during the day when you’re Migraines seem to be the worst. Topamax can make you sleepy so a mid-day dose may not be a good idea. If you can, send a message to your doctor to ask. Also, once you’ve gotten to a tolerable level, you may want to switch to an extended release form. It’s sometimes referred to as Trokendi instead of Topamax and it releases throughout the night and day, which may help your midday attacks.
January 9, 2011 at 2:54 am #41293
Topamax for me was like evil in the form of a pill. I became a totally different person and not a nice one. I couldn’t sleep, had crazy thoughts, couldn’t concentrate or focus on anything, started losing my hair and really began to think I was going to lose my mind. The day I got up from the couch to get something only to forget not only what I got up to do but also my name and who I was was the day I flushed my Topamax down the toilet. Now, I know that’s not the proper disposal of medication nor the appropriate means to wean off. I was having a melt down after all. I called the doctor’s office shortly after the flush and here’s what I said. “Yes, this is (me), date of birth (yadda yadda). I just flushed my Topamax down the toilet because it’s making me crazy.” This is what I heard on the line…”………….” silence! ha! So then I said, “Can you call me in something else?” Yep, had to be seen by the doc for that one. No more Topamax for me. Within 2 weeks of going off I was back to being sane once again. Bummer is, I never even experienced the weight loss side effect. All that and still jiggly thighs!
January 9, 2011 at 5:57 am #41294
Topiramate (Topamax) is a wonder drug to many patients, helping them get a foothold on their Migraine attacks, sometimes for the first time in their lives. Each person is different, and how they react to any medication will be different too. Furthermore, that reaction can change over a period of time.
I too had some fairly serious problems with topiramate, including pH issues and staghorn kidney stones. The tingly buzzing sensation in hands and feet, and cognition difficulties etc were nothing compared to those two life altering events. At the time kidney stones were considered a rare side effect, but now we know that isn’t exactly the case.
The topiramate did help my Migraine issues though – not a great deal, but some. I wish it hadn’t made me so terribly sick.
Vital to note: Topiramate is a medicine that should never be stopped cold-turkey. This can have disastrous results. If you feel you must stop the medicine, contact your doctor first for instructions how to titrate down (slowly lower the dosage over a period of time) safely.
Additionally, many people who have initial side effects are often titrating up too quickly. Often backing back down a smidge, then upping the dosage much more slowly will yield better results with fewer problems. As always, you shouldn’t make any changes in your treatment without consulting your doctor first.
January 9, 2011 at 6:30 pm #41295
I’ve been giving topamamx a second go. I’ve been back on it for over a month now.
It hasn’t went so well. I had been up to 100mg in a split dose but I woke with double vision and determined that I would reduce the dose.
I’ve been sitting at 50mg and am not sure what to do.
Can I see any results with 50mg?
I won’t be able to go any higher, as this is where I got stuck last time as well. Should I keep on it a while longer or just taper off? I’m rather not sure what to do at this point.
January 10, 2011 at 2:25 am #41296
The very first and most important thing is to talk to your doctor about the double vision to make sure that it really is a side-effect of the medication and doesn’t need to be dealt with as a separate issue. Also, because you seem to be having trouble with the topiramate. This is vital information for him/her to help you. Topiramate can occasionally unmask other health problems that might not have been noticeable before treatment.
You ask, “Can I see any results with 50mg?” There is no simple answer to that. Some may, some will not. Usually the therapeutic dose that results in the very best outcome is 100 to 200 mgs per day, but that won’t necessarily be what everyone can tolerate. This is very individualized and all Migraineurs are different. Have you seen any results yet? Are you taking 50mgs split throughout the day, or just once?
Since increasing the dosage too quickly can cause increased side effects, you might want to ask your doctor about increasing it more slowly. Unfortunately, some do not recognize that certain patients are more sensitive to these changes and will not want to let you do this. If that is the case you can always try asking him/her “will it hurt me to increase it slower?” If their answer is “no” then you might consider asking them to try taking things much slower to see if it will help you.
For instance – consider the fact that you were asked to increase the dosage from 50 to 100. That is a 100% increase – very steep! In an interview with Migraine.com’s Teri Robert mentioned here http://bit.ly/f2ZFti Dr Stephen Silberstein noted that success is achieved best by very slow titration. Starting at 15 mgs once daily, then slowly going upward from there, splitting the dose. Perhaps you might want to ask your doctor to try adding 15 mgs to the 50 you are currently taking and see if you are better able to tolerate that. Give yourself a chance to sit at that level a while (perhaps weeks even) before considering whether it is a failure or a success and determining where to go from there.
I know Migraine attacks are horrible to consider enduring for weeks longer, but patience is the key to finding a good preventative, and worth the investment of time and yes, even the pain. Yes, it may take several or even many weeks to try something, but if it is successful then it is a very good investment. If it fails, it was still a very good investment because you know what won’t work now, and that is something you didn’t know before. You have made progress.
Another thing to take into consideration is the action of topiramate on the rest of the body. It may deplete or otherwise affect things like vitamins needed by our bodies for health. If we are deficient in these things, our health can suffer terribly. Some examples of vitamins the University of Michigan Health System http://bit.ly/hLPYuo says topiramate depletes include: Vitamins A, B6, B7, B12, D, E, K, and L-Carnatine. Depletions of these vitamins are why some of us have side effects to topiramate. As a result, some of the best doctors will monitor for your vitamin status throughout treatment, especially if you are having side-effects that may be attributable to depletions. Some will simply encourage patients to take a good multi-vitamin. For some of us this is not a good idea, as taking certain vitamins (like Folic Acid) can mask other deficiencies (such as B12) which can cause its own set of serious neurological problems. This is one of the problems I dealt with and one of the reasons I find it so terribly important to tell Migraine patients.
Off hand, I don’t know of any vitamin depletions that would expect to cause double vision, but I encourage you to talk to your doctor about your questions and research for yourself. The link I’ve provided here is a fabulous place to start…
January 20, 2011 at 8:16 pm #41297
Has anyone heard about Topamax affecting the thickness of the uterine wall? I was told by a nurse (when I went in for my stimulator implant-trial) that I should be cautious with using Topamax, and that my doctor should order a sonogram after I’ve been on it for 6 months to make sure it’s not thickening the wall of my uterus. I’m in my mid-20’s, so she said it’s really important to keep an eye on it. However, I haven’t found anything related to this online. Has anyone else?
January 20, 2011 at 11:05 pm #41298
Nobody has ever told me this personally, nor have I heard it elsewhere – might be a great question for one of our physician experts! At any rate, I will add that I did have marked and fairly severe uterine lining thickening. It was around the time I was taking Topiramate, but I’m not sure that was the cause. In fact, I already had many reproductive issues well before I ever tried the drug. It’s a very interesting thought though. Something well worth looking into I think…
January 20, 2011 at 11:48 pm #41300
If you don’t mind me asking, how did you know/find out that you had uterine lining thickening? It’s frustrating not knowing what really to look for or who to ask. How would I go about asking one of the physician experts?
January 24, 2011 at 3:28 am #41301
I had an ultrasound done that diagnosed the thickened lining. I had other problems for many years, and many ultrasounds etc. There is a specific type of ultrasound done to Dx this type of problem. It’s a little more difficult than a normal ultrasound, but it’s not bad.
Here is the link to ask one of our experts a question: http://bit.ly/fZjuv6 You can also find the link by going to the tabs at the top of the page and hovering over Community and Blog. A button will appear for Ask The Expert you can click. Read the instructions, then ask away!
February 24, 2011 at 12:51 am #41302
Topamax is evil, plain and simple. I’ve had migraines for 22 years, and was prescribed Topamax about 6 years ago. After being on it for 2 years and experiencing the typical side effects i.e. numbness/tingling, having a hard time thinking of the right words to use, weight loss, etc., I developed kidney stones. If I had been told that kidney stones were a potential side effect I would NEVER have started Topamax. For 4 years I dealt with kidney stones, passing one 6mm, and other, smaller stones. All resulted in excrutiating pain, the likes of which I had never experienced. The final straw was in February 2010, I had such a god-awful attack of a stone. It was 8 mm! For those who have never had kidney stones, that is very, very large. Probably the size of a BB, but when you think about where it needs to come out of, it is big. That attack took me to the ER, where they first pumped me full of Dilaudid (migraines have made me immune to morphine) and then sent me home. Since I couldn’t stop vomiting or keep any food or liquid down at home, back to the ER I went. The next day I called my urologist who immediately set me up for surgery THAT day to have the stone removed. Not fun. For 5 days afterwards you have a tube in your ureter to keep the area “open” for any fragments of stone to leave. I sat on the couch for 5 days until the day the stent was removed. At that point, I was convinced the stones were caused by Topamax, as I NEVER had a problem with them before I started that drug. I promised myself to immediately get off Topamax, which is what I did. Fast forward 6 months later to my checkup at the urologist’s office…..NO MORE STONES!!! Not only had I not formed any new ones, but the remaining stones that WERE in my kidney were GONE! Poof, disappeared without a trace. If that doesn’t make you a believer, nothing will. I changed nothing as far as medications, vitamins, the amount of water I was drinking, etc. The ONLY thing I did was come off Topamax. My doctor was actually stunned, he did not know what to say. I told him my thoughts and that I had done some research on the matter and he asked me to send him the information I found, which I did. I will never take Topamax again.
February 27, 2011 at 9:46 pm #41303
I along with many of you will never take Topamax again. It all started at 5am on my 45th birthday. I sat straight up in bed with the energy of a 16 year old. It was the most amazing energy I had ever felt. After doing everything but painting the house I finally made myself go to bed well after midnight that day. That was the good now for the bad…..when I woke up after that energy spurt I had the most horrible migraine I had ever experienced and I’ve had them for probably 20 years or so. After about 10 days of this and emergency visits to my primary doctor she sent me to a migraine specialist who put me on Topamaz. My migraines went from horrible to just cut my head off I can’t handle it any more! I really figured it would get better after a while. The specialist even doubled my medicine assuming it was just the cycle of the migraine. I was sent for an MRI which showed 4 lesons. The doctor told me that wasn’t unusual considering my history of migraines. My doctor also told me that the increased energy is not unusual and often preceeds a major migraine episode. My brother who had been given Topamax for headaches told me they made his worse like his head was going to explode. Finally at 6 weeks of taking the Topamax I cold turkey quit. I just figured I had nothing to loose! I called my doctor to tell him what I had done and I thought there was a connection between the increased severity and the medicine. He agreed that I was probably having an adverse reaction to the medicine especially since my brother had had the same reaction. For me Topamax took a horrible migraine and turned it into a life or death situation because I seriously just wanted to die! In about 24 hours or so it was over just a normal headache. No migraine at all. I wish I had quit earlier it would have saved me alot of pain and suffering. I have wanted to tell this story for almost 2 years and I’m happy to finally have the opportunity to do just that!
July 3, 2011 at 7:07 pm #41304
I had a bad reaction to Topamax as well. I started off at 50mg and slowly ramped up to 150mg.
Other than wanting to sleep all the time, I got the tingling like others have mentioned, unfortunately it wasnt in my hands or legs…it was in my face.
At first the doctor and I didnt realize the reaction was from the topamax as allergy season had just begun. I was put on an allergy medication and the tingling intensified over the next week or so. It was extremely uncomfortable and I felt like I was on some illegal drug. I became distracted and found myself drifting off when I really needed to pay attention…fortunately for me, someone was in my truck with me and screamed a warning at the last second and I was able to recover and not roll my truck.
The tingling in my face stopped as soon as I stopped taking the Topamax. It did nothing for my migraines.
I wouldn’t assume topamax wont work for you but if you do start taking it or anything else, pay attention to all changes, even ones that you or your doctor dont think are related to the drug.
August 4, 2011 at 6:34 pm #41305
I was having 9-plus headaches a month and the Dr. put me on Nortiptyline(20mg)a day. I went down to 4-5 headaches a month.He wanted to try Topiramate(Topamax)to reduce the # of headaches further. To transition me from Norriptyline, he decreased Nortiptyline to 10mg a day and Topamaz 25mg a day. I started this about 6 days a go and I feel like a zombie with a swollen head. Not to mention my wife says Im very irritable and I’ve already had one migrane during the transition. Not sure if Im paranoid or have I had shortness of breathe a couple of times. I called my Dr.s office and the nurse said I would have to let my body adjust. Is this what I have to look forward to with Topiramate?
August 6, 2011 at 1:23 am #41306
Hi everyone, first of all hope you are all feeling well as you read this!
I just wanted to post a quick response to some of the posts I have just been reading. I am very lucky to have a very talented neurologist who looks after me very well. I take a combination of anti – convulsion drugs, and topiramate (Topamax) is one of them.
I have been on Topamax for 6 years now and it has given me back my life! I appreciate Topamax isn’t for everyone and I have to carefully manage my migraines which can still be debilitating. However in conjunction with diet/exercise Topamax has transformed things for me, however I have a very talented doctor who has monitored over the years when to incraese my dosage and referenced the most up to date research in this area as it is a relatively new way to treat migraine, I also take gabapentin (daily) and zomig in acute attacks.
Blurred vision, weight loss and tingling in my limbs were for me temporary symptoms. I can also sympathize with memory loss, but these symptoms were nothing compared to the daily crippling agony of migraines that plagued me before. My neurologist has also told me stories before of people halcinating on topamax – so as i said it’s not for everyone!
….But just wanted to post a message of hope for those of you trying Topamax for the first time. Hang in there, increase the dosage slowly and be patient. Find the dosage that works for you.
Hope this was in some way useful. Good luck!
August 10, 2011 at 9:15 pm #41307
Thanks for the first positive comment I have read concerning Topiramate, It has been prescribed for me for the first time, and I am hesitant to take it based on the negative feedback. I don’t want to feel worse than I already do.
August 12, 2011 at 1:53 am #41308
JDAVID – It might be important to mention here that many people get good results from topiramate. It is really those who have had problems that are the most motivated to write about their experiences, especially since many of them were caught off guard by them. Educating yourself about any drug you put in your body is paramount to making a good decision whether to try it, and paramount to knowing your options too. good luck! I hope you’ll write us with your experience!
August 18, 2011 at 9:19 pm #41309
After trying a beta blocker, I began Topomax at the end of June. The problem was that my first exposure was an overdose because the pharmacy had given me 100mg pills!! I took one 100mg pill 3 days in a row until I figured out what had happened. That threw me into constant head pain that moves around my head. After a week my Dr. had me start w/25mg and we have gone up by half doses because it seems that I am so sensitive to it and meds in general. At this point I’ve been at a total of 50mg/day for 3 weeks. I still have pain every day (not severe)that moves all over my head. Since I’ve been at the 50 level the pain that settles in one place- ie. becomes “actual” migraines has been worse. Is the topomax causing this?? Have you heard of other people having more headaches as they were increasing the Topomax? I used to have a migraine about every week and a half to two weeks. The daily pain and the bowel distress is causing my life to grind to a halt. I take maxalt as an abortive, but try not to take it often as I’m afraid of rebounds. I’m trying to decide whether to proceed or not. My Dr. is referring me to a neuro., but it will take 6wks-8wks to get in.
August 31, 2011 at 11:57 pm #41310
Hi Paula, I too am very sensitive to meds. Are you taking small doses multiple times during the day, or just once a day? Most doctors agree that it is important to break up doses throughout the day. Getting used to almost every preventive takes weeks or even months. Take it slow and give your body plenty of time to really, really get comfortable with a dosage before taking another small baby step higher. It really is a game of patience…
October 5, 2011 at 5:49 am #41311
I have been on Topamax for well over a year now and it has been a lifesaver. While I still have migraines, I am not experiencing the daily migraines that I was before beginning the Topamax.
The side effects are very manageable for me: some tingling of the hands and feet along with the cognitive issues for a bit when my NP and I need to raise the dosage.
I am currently taking 300MG of Topamax daily, split into two doses. I use Maxalt as an abortive, having tried Imitrex, Relpax and Amerge previously.
October 5, 2011 at 7:19 pm #41312
Hi Jess, thank you so much for telling us some of the positive aspects of using Topiramate! The thing about forums is that they tend to be used by those who are not satisfied with their treatment, and can therefore lead new patients reading the threads to think that a particular treatment won’t be helpful to them. The fact is, many patients are successful with topiramate. It was fabulous to hear from one of them!
October 5, 2011 at 8:21 pm #41313
I took Topamax and I have actually tried it twice. I did not like it I did not like the numbing feeling that it gave me in my feet hands and side of my face. It made me feel very yucky and I did not want anyone talking to me and my mood was very unstable. Also in the bedroom area ohh that was a nightmare I did not even want my husband to touch me at all. At the end I was getting thoughts that where not good and I am glad that I knew that it was the medications and not me and was able to get off of them before going off the deep end. I wish it would have help me if there is anything that can truly help. I hope that there are people out there with better results them me on this medication
October 5, 2011 at 8:53 pm #41314
When my Dr prescribed Topomax, I was really looking forward to relief. Unfortunately, that didn’t happen for me. I tried it for about 6 months and my Dr agreed that that was a decent enough try. I hope others whose Drs have offered it will give it a try – it really does work for some people.
December 20, 2011 at 12:37 am #41316
I will also add a positive note on Topomax. I have been on it for over years with mostly positive results. I do have the memory issues and have lost weight (yea). But initially the migraines all but disappeared. Unfortunately they have come back with a vengence and upping the dosage over the past 1.5 years has not helped. I have been having daily migraines so my family doc transferred me over to a neurologist for testing. Just had the MRI & EEG so we’ll see if there’s anything there (and what other meds to try).
December 21, 2011 at 2:07 am #41317
I have been on Topamax for only 5days so far. My neuro. finally resorted to this combo solution when my occurances increased to more than 4/week. I started at 25mg 2x daily,to be increased gradually to 200mg 2x daily.
I’m already finding less headaches! However, and this is the only drawback, about two hours after taking it I have uncontrollable drowsiness! And I have been on Ambien, Lunesta, all all sorts of meds that ’cause drowsiness’. NOTHING compares to this- PLUS I have to take every 12 hours, so this has caused work issues!!
I really appreciate the forum and the comments from all, and despite docs recommendations (he’s out of town for 10days) I’m adjusting to nighttime only, because a I MUST work- I nearly napped through a meeting today!!!
I will say this: I take it, about an hour or so later I’m OUT, but for like TWO hours and I start coming back. Withen 4 hours I’m my usual, if not HAPPIER more determined self.
December 23, 2011 at 12:49 pm #41318
Are you sure that the dose is 200 mg twice a day ? From the manufacturer’s website ” For most patients, the recommended dose of TOPAMAX for the prevention of migraine headache is 50 mg twice a day. ” I am on 50 mg twice daily. 400mg a day sounds like a dose for an epileptic.
December 28, 2011 at 4:36 am #41319
I have been on Topamax for 2 months and so far am up to 150 mg a day. The tingling in the hands and feet are a bit annoying but are not bad, the tingling dies down if you up your potassium intake daily. Also, the Topamax does leave you a little foggy at first but I do see this slowly wearing off, my dr has me taking the pill at night. The pill seems to be slowly working but not completly, I am still working to find the right dosage or right daily pill but Topamax has made a difference. Just make sure to drink a lot I have noticed that I am dehydrated a lot and that I do not eat nearly as much as I used to (not that that is a bad thing).
January 9, 2012 at 9:00 pm #41320
Hi- I’ve had migraines for 27 years and have been using topamax for a few of those years. I have mixed reviews. When I first started use it was like a miracle drug preventing many of my near daily migraines. I had the tingling and numbness in my hands and feet but anything trumps pain. I also had a significant weight lost but it was acceptable. The only thing that made me back down was, with the weight lost, the 100 mgs I had gone up to, threw me into a severe depression and only after weaning myself back down did I make a recovery- I figured it out on my own and now take 50 mg which doesn’t stop the migraines but helps with the amount I get a week. This is my first blog- I hope it is helpful to someone- I know it helped me to read everyone elses comments- you don’t feel quite so alone or wonder if some of these symptoms aren’t just in your imagination
March 2, 2012 at 4:36 am #41321
I was also prescribed Topamax starting with 50mg twice a day and my neurologist increased the dosage to 200mg twice a day. After about 9 months of this dosage, I could hardly think straight. I had trouble thinking and on several occasions forgot things from earlier in the day. I was also in the process of studying for my CPA license, but couldn’t concentrate long enough to retain any information. I slowly lowered my dosage back to 100mg twice a day, but my headaches came back worse than ever. I have since stopped taking the Tompirmate completely hoping things get back to normal, but i;ve been having headaches daily now. I’m trying to decide if maybe the lower dose is better than taking nothing now.
March 29, 2012 at 4:03 pm #41322
I was put on Topamax several years ago, and had great results. I got up to 200 mg, then flat out could not function. To this day, I have no idea how I managed to drive cross country from Texas to NC, up to VA, then back in a 2 week span. After that, I backed off the dose to 150 mg, and I was fine, for a while. I began to notice that my migraines were becoming more intense, so I talked with my neurologist, and we agreed that I needed a drug holiday. I slowly weaned off the meds, and sure enough, my migraines weren’t as bad.
Fast forward a couple years. I moved, got a new neuro, and got put back on Topamax. Suddenly, as soon as I hit the 100mg mark, I get blinding migraines where all I can do is whimper and writhe. I’m weaning myself back off.
Now, the Rheumatologist I recently saw for my Fibromyalgia wants me to go on Neurontin. we’ll see. I don’t have epilepsy, yet I’ve been given 2 anticonvulsants. Hmm.
April 3, 2012 at 4:19 pm #41323
dawnschell – Anti-convulsant drug therapy is actually very common for Migraineurs.
Unfortunately, there has only been one novel abortive drug ever developed for the treatment of Migraine, and not a SINGLE preventive. This means we have to utilize what we have. This is called using a medication “off label” because it was designed for something else, but can sometimes be helpful for Migraine.
Other examples of off label drugs include anti-depressants and blood pressure and Alzheimer’s drugs.
Just because you are prescribed one of these medicines doesn’t mean your doctor actually thinks you have the problem the drug was designed for. He/she is using it’s properties to try to help your Migraine because that’s honestly the only option we really have right now… until awesome researchers are able to develop something just for us that works better!
April 18, 2012 at 8:00 pm #41324
My 14 year old was diagnosed with migraines last summer and she was put on Topamax this past January. She gets so sick on the medication and is taking it every night, in hope that maybe she will wake up without a migraine. The one symptom that really bothers me is that she is constantly hot, and is unable to sweat. The doctor told her to increase the dose. At what point do you tell the doctor that its time to try something else.
April 18, 2012 at 8:50 pm #41325
Alice Cover – It might be helpful for you to go back and re-read this entire thread, as there is a great deal of information here re: dosing and titration times, etc. Side effects often lessen or disappear the longer the patient is on a medicine, although that is not always the case. A good trial of topiramate is going to take a few months. If you’re not comfortable with the direction your doctor is taking your daughter, then by all means, talk to him. Ask your questions and be sure that you understand – and agree – with his management approach. Not all doctors are right for every patient and vice versa. Only you can decide… The person with the most to lose gets to choose
May 13, 2012 at 7:42 pm #41326
Hello, I’m new to the forum and have recently started on Topamax, working up to 100 mg/day (1 dose at night). It seems to finally be working somewhat (down to 2 HA/week)! My neuro warned about kidney stones as a possible side effect and recommended drinking plenty of water, but no specific amount. Has anyone else been advised to drink a specific amount of water or anything else to help prevent the formation of kidney stones? Also, has anyone else had any GI or sinus/nasal side effect? Thanks! It’s been helpful reading these posts.
May 13, 2012 at 10:18 pm #41327
Hi – I’ve been on Topirimate (Topomax) twice now, and am coming down off it for the second time because my memory loss is getting so severe I cannot find words to fill in a sentence, and that is really bothering me, and my friends are noticing it, and when they tell me, I know it is getting serious.
The first time I was on Topomax (there was no generic the first time round) I lost a tremendous amount of weight – about 60 lbs. It coincided with a period in my life where I was doing a lot of exercise, running mostly, but also rollerblading, weight training and daily horseback riding. (If you don’t think riding is an aerobic sport go to a stable and take a lesson.) My friends though I was anorexic, but I must say it was nice to have clothes fit me whenever and wherever I went. The severity of my migraines went way, way down, and things were great, except I started to lose my memory. I was in school going for a second degree so this was not helpful. It became so bad, that after about 6 or 7 years I had to go off it. I put on about 40 lbs, and had no control over the weight increase, none. For 7 years I had absolutely no appetite, and then, much as I would try to control what I would eat, I was hungry, really hungry, and was a wild thing around food. My migraines also returned in full force and I began getting them full force at the 7-9 level 3 or 4 times a week. My pain doctor put me on opiods to stop the pain and I could at least function, but it was a bad period for 2 years. When I decided to go off the morphine due to rebound headaches, I did that, and then went back on the Topomax in the hopes that it might reduce the severity of the migraines I was having every week. It did that, and, although I still have somewhere between 3 and 5 migraines a week, I can manage most of them without drugs if they are below 5 on the pain scale. If they go over that I have to take something, but my system is so sensitive now that the options I have are very very limited. I am working on my application to see a new migraine specialist, but my history is long, and it takes time to get all the paperwork in order, and I don’t have every day to work on it.
So we are going off the Topomax and then also going off Trileptal which I am also on, and I will be starting on Depakote. I have my doubts about Depakote since the first time I was on it my hair fell out, but my doc assures me that if that starts to happen we will stop it immediately. The memory thing has been the biggest side effect for me, otherwise it has been great as a preventative. I am also going to try Butterbur or Petdorolax. I have heard mixed things about this herb, so I will go slowly, and post on that forum as I begin to use it.
This is a long post, and I hope it has not been too wordy, but since I have been on Topomax twice, I wanted to add to the mix on this drug which I think is a great drug, it just needs to be monitored.
In response to the last post, I did have an impacted kidney stone while I was on Topomax the 2nd time. I was a big water drinker, but also drank a lot of mineral water, which I don’t think was a big help.
May 13, 2012 at 11:24 pm #41328
Unfortunately, just drinking more water will NOT assure you will be stone free. The topiramate causes a condition inside your kidney that causes the stones to form. Eating or drinking certain things (like soda) can make it worse, but you’re either going to get them or not. If you have had stones in the past, this is your WARNING. These stones can be so bad they require surgery. Mine were staghorn kidney stones, and yes, they were as bad as they sound. I nearly lost a kidney over it and spent a lot of time in and out of the hospital as a result. They can also happen very fast, or slow, depending a lot on your system. If you are worried at all about kidney stones, you need to get to see either a urologist or preferrably a nephrologist. A urologist will help with the stones once you get them, but a nephrologist can sometimes help you prevent them in the first place. Their specialty is the kidney. Either way, you should be monitored for stone while on this therapy – a good doctor will help you with this. Also, have a plan in place in case you end up with a stone. This will help to assure that you get appropriate treatment asap which hopefully will minimize your suffering and any damage that might occur.
May 19, 2012 at 2:11 am #41329
I’ve been on Topomax once before and now my doctor wants me to try it again. I had bad side effects the first time: tingling that kept getting worse, memory loss, and irritablity doesn’t even describe my “anger episodes”. I did ramp up the dosage slowly as I was told to, but that didn’t seem to help. New doctor says if I go even slower, these symptoms won’t happen.
I’m also on Lexapro and I’m wondering if that makes any difference in my side effects? I really don’t want to try the Topomax again, but I don’t want to be seen as the difficult patient who won’t help herself. Now I read about the kidney stones which I wasn’t even aware of (doc didn’t say anything about this).
Any advice out there? I realize only I can decide what’s best for me, but I could really use some advice from others who are going through some of this too. Thank you.
May 20, 2012 at 1:35 pm #41330
Bobbilynn – There is lots of really good info on this thread re: ramping (titrating) dosage of topiramate. What doctors have found is that, for those patients experiencing side effects, slower is better. Sometimes it truly is painfully slow, taking months to get to a dosage that is helpful. However, if that is what it takes to get the Migraine frequency and pain down, it’s worth it – yes?
July 3, 2012 at 3:38 am #41331
Thanks for all of the great articles – I’ve just been prescribed Topamax (well, I’ve been on it for 6 weeks now … I’m up to the 100 mg/day dose). Trying to deal with the side effects and still dealing with migraines, so I’m not sure if it’s going to work for me, but I’m seeing *some* improvement. What is the max daily dose for Topamax? I’m at 100 mg/day right now … I’m wondering if my Neurologist is going to up my dose on me at my next appointment if we don’t start seeing some dramatic results. :S I’m concerned because the mood swings, confusion, exhaustion, restless twitchy legs/feet, and general ‘zombie-like’ feeling for me is enough already … Reading about people experiencing the kidney stones is really freaking me out!
July 4, 2012 at 5:44 pm #41332
annie5star – I hope you get a chance to talk to your doctor about kidney stones and some of these other side effects you’re concerned about. Since you might also be taking other meds (like flunarizine?) some of your side effects could be coming from them too.
Since you’ve only been on this med for 6 weeks now (I know it probably feels like a lifetime, but you need to take your time or it might backfire on you) you should probably still be at a point of titration – – building up the dosage to a maximum that will be helpful for you. Once you are on that dosage, staying on it is usually what physicians says is best. It may be as much as 3 months on a steady dosage (after titration) before you feel a change. It doesn’t happen right away – not with any of the current preventives. I know it’s terrible, but patience is so very, very important with this drug. The side effects tend not to be as severe when titration is done extremely slowly.
July 26, 2012 at 1:57 am #41333
I started taking tompamax about 9 months ago. I first started at a 25mg dose. And am now at a 5 mg dose. It took me a really long time to agree to take a daily medication. Mostly be stubborn and not wanting to be a ‘young’ person on daily medication but after 8 years of truly suffering and 15 years of managing migraines on my own at the age of 27 I sucked it up and agreed to try.
Some of the side effects Ive noticed have been the weight loss, manageable. Hair loss/thinning, I can get over it. But what I have had a really hard time coming to terms with is this anxiety that developed once I started taking this medication. I am now on a daily anxiety medication perscribed by my pcp. I never had any issues with this in the past.
I do yoga/run 4 times a week to help manage stress on a normal basis. Im just shocked on how much this has affeceted my anxiety level?
Has anyone else had this major issue? Just today I had a mild panic attack in the car when driving from one meeting to the next and had to pull over. I was all out of my anxiety medication and hadnt taken it in the morning. I was shocked that missing it one day would have such an immediate negative effect.
July 26, 2012 at 2:31 pm #41334
If you’re still having such serious side effects after nine months, it’s reasonable to ask your doctor to change medications. Topamax is just one of over 100 medications and supplements that can be used for Migraine prevention.
August 7, 2012 at 9:48 pm #41335
I have been on Topamax for two years now and I have noticed a significant reduction in my migraines. Initially I experienced numbness and tingling for 4-6 months, and I nicknamed the drug ‘dopamax’ because I could not form a sentence. All of that has subsided! I am currently taking 200mg. split into two doses during the day due to a recent episode of status migraine that lasted 14 days and resulted in an infusion. In addition, my other medications are: Imitrex injection 6mg., Zanaflex (1/2 pill twice daily & two pills at bedtime), Lexapro 10 mg. once a day, and Phenergan as needed for nausea. I hope this information helps-I have a wonderful relationship with my neurologist, Dr. Mark Porter, and he also suffers from migraines.
I am currently taking Prednisone for a migraine that has lasted three days despite the injections because I learned my lesson with the last status migraine and never want to experience anything like that again. I smelled a man’s cologne from across a crowded room and the smell never went away!
August 8, 2012 at 1:40 am #41336
JUst remember that the efficacy of TOpamax peeks at 100 mg a day. I rarely go higher and if I do no more than 125 mg because higher doses doesn’t make a difference according to testing. Also with higher doses, there are higher chances of side effects. If you are going past 100 mg because the medicine isn’t working, or wearing off, it’s time to talk to your doc.
August 11, 2012 at 1:15 am #41337
Thank you Dr. Whyte. My neurologist increased the dosage after the status migraine episode, but I will keep this information in mind during my next follow-up visit.
August 13, 2012 at 12:59 am #41338
I just went back to my Neurologist after having an awful month (10 migraine episodes including trips to the E/R for severe episodes where my meds wouldn’t work)… I was taking my 100 mg Topimax/day (50 mg twice daily) plus 10 mg Flunarizine at night. NOW he’s doubled my Topimax to 200 mg (100 twice daily) and cut my Flunarizine to 5 mg because I was so exhausted and had such a ‘hungover’ feeling throughout the next day into the afternoon.
I’m so concerned about side effects – already had issues with several. I’m exhausted all the time and starting to feel like a ‘guinea pig’… Anyone else taking 200 mg Topimax and having positive results? This is my 4th month on this drug and I’ve yet to see any astonishing results …
And Kimberlywhite – I was laughing about your ‘dopamax’ comment! I’m exactly the same way … I get caught all the time because I forget things, can’t seem to find the right words for sentences … my memory is AWFUL! It’s a terrible feeling. What we go through to try to get rid of this horrible migraines!
August 17, 2012 at 5:20 pm #41339
annie5star – It’s so easy to get to feeling like we’re guinea pigs. The fact is treating Migraine is not a cookbook medicine kind of issue. There is so much search and hunt and try that it can take a long time to find something helpful. The good news is that there are lots of things to try, but the bad news is that it is so very time consuming, and we suffer while we’re trying something new.
The bottom line with topiramate is that going up slowly in dosage and taking your time is really vitally important.
What is your doctor saying about your experience??
August 22, 2012 at 6:06 pm #41340
Hi. I am new to the forum but not to chronic daily migraine. New to the name but not the experience. Grateful to Dr.Fred Sheftell whose memory remains a comfort. I have tried many RX and combos. I have only been on 100mg of Topo at night for about 3 weeks after taper up. Visual, mental/mood changes have been transitory, I hope, manageable.
How long does the numbness tingling thing last? Sometimes it is in hands and not feet. Sometimes feet. Or one hand. My “homunculus” is confused. Does this make sense to anyone? The burning in my feet is sometimes so painful that I asked a physio to assess lumbar spine for compression because I thought I might be crushing some root nerves.
help with this appreciated.
August 22, 2012 at 8:07 pm #41341
The paresthesias from Topamax are very common, probably the most common side effect, and usually go away.
August 23, 2012 at 7:07 am #41342
Thanks Dr Whyte! Feels like a long time…I am breathing…in…out…
It is curious to me ..this wandering nature and asymmetry of the parasthesias. Is this common? Is there a reference to help me understand the physiology?
Any correlation between side effects and effectiveness?
I know I could place a call to my Doc but I am so grateful for this new website…and it feels really good to get a reliable response. Thank you again.
August 30, 2012 at 6:00 am #41344
Are you taking a frolic aid supplement with your topiramate? This is very often helpful. Please do not change your treatment protocol without talking ot your doctor.
September 13, 2012 at 3:35 am #41345
Thank you Ellen. There was a stupid set of miscommunications at the clinic and my Doc left on vacation without getting my messages. I was told to take narcotic by someone on call#%#. Wrong answer! Then,finally advised reducing dose and discontinuing because of inadequate response… namely I still have nearly daily headaches. I have had a reduction of the pins and needles/burning sensations on the 75 mg dose. I am not bumping into walls like a Zombie and can wake up. I see my Doc in Oct so I think I will wait for her and stay on this dose…even if the study showed response faster than it has for me so far.
Anyone for whom it took a while longer?
October 9, 2012 at 4:58 pm #41346
Hey, I wont go into a long drawn out story but… I have a long history of migraines and have been on Topamax forever. Started very slow and increased the dose based on my condition. At my worst I was on 2 – 200mg pills twice a day (totaling 800mg a day). I had some side effects (aphasia – can’t think of a word, some weight loss, tired) but nothing that would nearly out weight the benefits of losing the number of migraines I was having a month. Big sacrifice – CANNOT get pregnant on this med – need to be off med for period of time before you can… my condition is too much to come off it…so we’re adopting. Women – please realize this when taking this in childbearing years. Relpax and Maxalts MLT have also been Godsends for me. Imitrex does nothing. Allergic to Zomig. Happy to answer anyone’s questions about the drug.
October 10, 2012 at 5:20 pm #41347
You bring up a vitally important issue here… Many of the meds we need to take for our Migraines are contraindicated in pregnancy. Topiramate is only one of those medicines. If you think you will want to become pregnant later, talk about it to your doctor. Get that conversation started early so you know what to expect. In my own life, I had to make a decision between my health and medicines and having babies. We had originally planned to be married a few years before having kids, but that changed and we chose to have them earlier vs. not at all. This isn’t the choice everyone will want to make, but I am glad I was given that choice and we could plan accordingly.
October 18, 2012 at 12:20 am #41348
My old doctor has me on 600 mg of Topamax a day with 3 other med’s. Now my new doctor say’s I have to be detoxed from them in a hospital. Everytime I try to lower it I get such bad migraines that they have to up it .You have to watch your doctor ! I am glad he lost his license !I have gone through hell the past 2 1/2 years!
October 20, 2012 at 3:46 am #41349
Lacie – I am so sorry for your experience. Are you seeing a headache specialist now to try to get another preventive on board before slowly going off the topiramate?
October 24, 2012 at 12:52 pm #41350
I started on Topamax two and half weeks ago and am having horrible side effects. Spoke with the neurologist on call last night and he said to stop taking it and I should start feeling better very soon. I have not had a dose (I was only up to 25 mg in the morning and night) since 8 am yesterday and still am extremely nauseous and dizzy, not to mention I have a massive migraine.
Has anyone else experienced such quick onset side effects that are so severe? Am I missing work from the side effects or migraine? I’m so frustrated. Topamax is my 7th medication in four months that didn’t work (I have chronic sporadic hemiplegic migraine).
October 24, 2012 at 6:11 pm #41351
alig0118 – it is not uncommon for side effects to affect patients taking topiramate. Usually this occurs because the dosage was ramped up faster than the patient was able to handle. Additionally, supplementing certain vitamins are necessary to help prevent side effects as the drug itself depletes these from your system and they need to be replaced. I would encourage you to go back through the thread if you can, even tho it is long, as there is a plethora of information re: this subject.
October 24, 2012 at 8:43 pm #41352
Thank you so much for the information you provided and the links from previous posted. I did read all the posts and totally forgot that I am more sensitive to medications, especially when titrateing. I called my neuro and have not heard back.
I wanted to say thank you to everyone for posting all the helpful information about Topamax.
October 25, 2012 at 5:13 am #41353
I finally spoke with my neurologist. He did not prescribe me Topamax, another provider at his office did. Some how it was missed that Topamax has sulfa in it, which I have an allergy to. So, problem solved. I should not have been prescribed Topamax to begin with. I am on Zofran and have not taken Topamax since early yesterday morning. I am feeling much better. I wonder if many other migrainuers may also have a sensitivity to sulfa and that is why Topamax has a tendency to cause nausea and vomiting?
Just thought I’d let everyone know.
October 25, 2012 at 5:23 pm #41354
alig00118 – You make a really important point here that doesn’t often come up. We count on our physicians to pay attention to our allergies and sensitivities when they prescribe medicines, but the truth is that things can sometimes be missed.
Personally I try to always go thru the list whenever a new medicine is prescribed to me, just to be sure. I have had a life threatening reaction before, so although doctors sometimes think I’m overreacting in being so thorough, I would much rather be thought a little kooky and have no reactions, than end up on the wrong side of the physician error odds. Again.
So glad this was figured out! So glad you shared it too, so others can learn from your experience. <3
October 27, 2012 at 6:31 am #41355
HI guys! Day 1 on topirimate for me. I have 25mgs of it and I think I am going to have to cut it in half. I am very sensitive to medications, everything under the sun makes me high, or makes me sick to my stomach. For the first dose, I did get the tingles in my hands,after I took it an hour later I was buzzy high, felt awesome, but than felt more like I drank too much alchohal feeling, without drinking, I had a stomach ache. I was so high I didn’t feel anything until the stomach had kicked in and felt dizzy, this was before I ate, so maybe I need to eat first. I went out tonight to a Halloween party and felt a little bit nausous and dizzy, but I noticed I had a hard time seeing street signs clearly, but no problem singing karaoke and singing the words. I drank bottled water and a diet soda. No way was I touching alchohal feeling a little off to begain with. On the way home at 11pm an intense pressure migraine kicked in, I stopped at one other bar had a 7up and the music was starting to hurt my head so I came home. Its 1:25am and my heard hurts, there is pressure like the pressure you have when you know you are going to have a hangover and dread the next day pressure. Course I sit here sober knowing we are probably going to get one heck of a storm in the morning. This month I have had migraines just about every day. SO far the side affects of today I can handle, I have taken railpax (sp) and treximet and omg, i had to actually lay down and pray i didnt throw up because it actually felt like I drank a bottle of red wine in 2 mins. It was horrible. Muscle relaxers knock me out for a day, Gabentin which is for pain oh boy, I took the recomended dose, and I couldnt work my at home phone job I was higher than a kite. So its not a bad start. Has anyone had to cut the 25mgs in half to start off with? How long did it take to get the migraines to stop? The only other thing I did have relief with was Aleve-D and it was great for about a month and a half and than it quit working. I really want my head back, migraines (and bones spurs in my back) are destorying my life. I hope I get the weight loss side affect that would be awesome, but I would be so happy if I could just get some relief from these migraines.
October 27, 2012 at 1:54 pm #41356
SC – So sorry to hear you are having a rough time. It seems like many people who have migraines are struggling right now. I hope you and your doc find something that helps. I’d talk to your doctor/neurologist about when the Topamax should help protect you from migraine.
October 27, 2012 at 4:21 pm #41357
sc_880c7becaeb00a355b297d3e54de5ee7 – It’s very possible that you may need to talk to your doctor about reducing this initial dose of topiramate in order to reduce side effects and allow your body to get used to it more slowly. I suggest you take some time and read through the posts in this thread as there is a lot of information re: folic acid and side effects etc that you will want to be familiar with to talk to your doctor.
Soda – All soda can cause a problem with topiramate. Most patients find that they don’t like the taste once they begin the drug, but others will continue to drink it. This can prove dangerous, causing a pH balance problem that can result in additional side effects including kidney stones. Please discuss this with your doctor. My own doctor didn’t talk this over with me and the results were a lengthy hospital stay and nearly losing a kidney. I just don’t want anybody to go into the use of this drug without knowing everything. As a result, I encourage users to go to Epocrates and check out all the contraindications, side effects and warnings associated with it so you can speak intelligently and candidly with your doctor. It could mean the difference between having a drug that helps you and giving it up.
October 27, 2012 at 6:33 pm #41358
THanks guys. Last night I cut the 25mg in half and took the half at like 1am, or so before bed, and I took the other half at 6am cuz the migraine was horrible, I also took each half with food and it made a big difference. I am not feeling high, or sick to my stomach, I am irritable, the migraine is at least 90% less of what it was when I woke up THANK GOD! I didn’t know that about soda, darn it, I love my diet soda, but ya I don’t want kidney stones. I was reading earlier where one lady was taking Gabepentin every day for pain,a small dose makes me feel drunk, if I took a small dose I could go to a bar feeling buzzy and have no need for a drink period. This may work for me not sure. I know for sure though i have to cut it in half. The doctor was like try 50mg and I said no, lets try 25 as other stuff makes me sick. So now I just battle the irritablitly. I was taking phentermine for weight loss, which I didnn’t take today, there is no way, I would probably flip out on someone. I have 5htp which is an over the counter natural herb that stabilizes moods, I am going to take that. I am very moody. I know I was really bad last night, but I was also in a situation where I was extremly claustrophobic so I am sure that didnt help. Im glad I found this board. I don’t trust doctors I do trust peoples actual experiences though. Today I have 90% of my head back.
October 28, 2012 at 7:57 pm #41359
Please check with your doctor about the over-the-counter ‘natural’ herbs you are taking. Even though they were man-kinds first medications, they are still medications and can wreck havoc on some people’s systems. They may interact with medications we take and conditions we have.
Typical starting dose of Topamax is 25 mg once a day for a week and I’ve seen people go lower, 15 mg because it was too much on their system. When this medication is tapered up slowly, there seems to be a better chance that many patients experience better benefits from it.
November 2, 2012 at 8:25 pm #41360
I was very hesitant about starting Topamax, as my son had taken it before and had the memory issues. After 3 months of daily headaches and no other drugs working, I gave in. I do have some memory issues, but it is so worth it to get rid of the constant pain. My advise is not to discount this drug because of what you hear. It may well work for you.
November 3, 2012 at 2:53 pm #41361
sheila – thank you for sharing your experience. It’s good to hear from those that have good experiences as well as negative ones. Topiramate has been a miracle for many users, allowing them to get their lives back. I’m glad you are having success with it. Hopefully some of the side effects will eventually lessen for you.
November 11, 2012 at 6:39 pm #41362
Hi Everyone, I was just browsing through this post and saw so many difficult stories that I thought I’d share mine. I was on Topamax for four years and it saved my life! I came off it earlier this year to try and get pregnant and living without it makes me understand what a gift it was.
I am HYPER sensitive to medication (all kinds) so to get me to the right dose, my doctor went extremely slow. My dose started at 12.5mg (I cut the pills in half) and I would only increase by 12.5 every two weeks. Needless to say, it took a LONG time to get to the right dose but it was worth it. Initially, I experienced relief at 150mg/day however about a year later the migraines became noticeably worse and I went up to 200mg. That was my ‘magic’.
Side effects were awful for me as I titrated up…tingling in my feet (all the time) and heart burn like I had never experienced before. I had to go on prescription antacids for a month to clear it up. And for me, the memory loss was a permanent feature of topamax however it was a worthwhile tradeoff for the relief it gave me. It became a running joke with my friends and family – I would desperately mime a word and we would play a guessing game until they helped me retrieve my vocabulary, lol.
I titrated down in much the same way and it took me almost five months to come off it completely. Now I suffer daily from migraines and headaches again.
I can say with certainty that I will start back on topamax as soon as baby is born and I am done feeding (but not pregnant yet…)
Hope this helps some of you both with how I managed to get to the right dose and in your decision to try something else.
November 12, 2012 at 12:21 am #41363
Thanks for sharing your experience with us. Topamax works wonders for some people, but others just can’t tolerate it. Kudos to your doctor for understanding your sensitivity to meds and starting you off very slowly. I wish more doctors took the time to understand their patients like this.
Good luck getting pregnant too….let us know! When the time comes and I hope it is soon, here is some information on pregnancy and migraine; https://migraine.com/?s=pregnancy+and+migraine
November 13, 2012 at 1:53 am #41364
I recently started taking Topamax for my migraines, but it did not take long for some very nasty side effects to cause me to stop. Some of the side effects I was prepared for and while I was worried about them, it simply got to be too much for me to handle (and those around me too). The first trip to the emergency room was when I was woken at 3 AM with a racing heart that was skipping beats, which should have been a good indicator things were not going well. The neurologist on call said it wasn’t because of the Topamax, but I had never had that problem before starting Topamax and it is listed as a possible side effect. The following day I had a follow up with my regular doctor who also talked me into staying on the Topamax and to give it some time. At the time of the ER trip I had only been on Topamax for 5 days at 25 mg once per day. I only made it to day 12 before having to stop taking the Topamax and by then I had developed a lot of side effects ranging from annoying to severe and had two ER trips due to side effects.
Within those 12 days I developed confusion, difficulty speaking (couldn’t form a complete sentence or words would come out of sequence), dizziness (including 3 blackouts/falls), another fast irregular heartbeat incident, nausea, vomiting (every day the last 4 days I took it), loss of appetite (not good as a recovering anorexic), a constant ringing in my ears, loss of coordination (walking into walls isn’t uncommon for me, but it got worse), I couldn’t remember doing things (I apparently wrote emails to my family that I didn’t remember and were complete gibberish), my face started peeling, and I developed a nonstop nosebleed. Luckily all these side effects cleared up within 3 days of stopping the Topamax.
Sadly my body is extremely sensitive to medications and my list of medications that I have adverse reactions to just keeps on growing (currently over 100 known medications). What’s even scarier was my reaction to Divalproex. It’s real fun when I go to the ER and it takes 6 of the red bracelets for them to list all my allergies (OK, it’s not fun really); they have finally gotten smart and just put “see list on computer, too many to list” 😮
Hopefully we’ll find the right medication combination soon as the daily migraines are taking a serious toll. I have basically taken to living in my walk-in closet where I retreat to since it’s dark and quiet. And I had hopes for Topamax too…
November 14, 2012 at 12:02 am #41365
Thanks for sharing your story with us. I’m so sorry to hear your experience with Topamax was not a good one. Some patients, who are extremely sensitive to medications, have started on a dose of Topamax as low as 12.5mg for a week or even two. And have done much better.
I’m not suggesting you try this, just wanted to let you know you’re not alone in being very sensitive to medications.
November 14, 2012 at 7:28 pm #41366
Having read some of the potential side effects I’m wondering if this is a potential problem for myself (I’m due to start on Topamax next week. My “normal” hemiplegic symptoms include most of the side effects I’ve here – tingling in hands & feet, confusion, struggling with words, not recognising people I know, depression, paresthesias of the face. Will topamax lead to increased symptoms in these areas?
November 14, 2012 at 8:15 pm #41367
First let me say that potential side effects are just that, potential, meaning everyone who takes medication won’t experience side effects. Having said that, there is no way to tell which potential side effects, if any, people will experience. But I would certainly discuss these concerns with your doctor before treatment begins. Also, it is extremely important to start at a low dose of Topamax to get the greatest benefit. This may also help in reducing potential side effects. Standard dosing starts at 25 mg once a day for a week then increases, but people who are very medication sensitive have started at half that amount. Here is some information on Topamax and dosing; https://migraine.com/migraine-treatment/topamax/.
November 25, 2012 at 4:16 am #41368
Hi jaynlm – I would encourage you to read this entire thread from start to finish as there is a LOT of useful information there re: dosing and side effects.
Have you spoken with your doctor re: these side effects and mitigating as many of them as possible?
December 5, 2012 at 2:56 am #41369
I was on and off topomax about 6 months ago; one of my many “trials” for managing my migraines. I didn’t have a SINGLE headache for the 3 months i took it. I had been on it for about 2 weeks, starting out at 25, then to 50mg after the first week, then 75 a week after, then stopping at 100mg a month after starting. During that time, I did not eat. Maybe a small snack during the day. I lost 15-20lbs the first month. My memory was shot, i had awful dyxlexia (sp?), I had developed a stutter, couldnt get words out correctly, and the scariest side effect was enornmous bruises on the sides of my thighs. Not too painful, but took up the entire sides of both thighs. I ruled out the possiblity of injury, and as soon as I was weaned off Topomax, everything went back to normal. I’m now on amnitryptolin (sp?) and that hasn’t done anything. No supplements help, no fioracet, tramadol, torodol, whatever else you’d get, nothing works. My doctor told me he doesn’t know what else to do. I’ve heard, though, that lyrica helps good. Anyone know anything about that?
December 5, 2012 at 4:11 pm #41370
What an awful time on Topamax you had, I’m so sorry to hear that. I wonder if you mean amitriptyline? This is an antidepressant often used for migraine prevention. How long have you been on it? It can take up to three months (I know, feels like forever) before we see a reduction in our migraine frequency and severity when we start new medications.
How about trigger identification and management? Migraine is triggered by something, whether it is a certain food, skipping meals, exercise, sleep patterns changes, or changes in the barometric pressure to name a few. Keeping a migraine journal is the best way to identify these triggers and figure out a way to avoid them. Take a look at this information when you get a chance; https://migraine.com/blog/migraine-management-essential-trigger-management/ and https://migraine.com/blog/migraine-management-essential-trigger-management/. Lyrcia is used for migraine prevention as well as many others – over 100 in fact. https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/
I hope this helps,
December 5, 2012 at 7:25 pm #41372
lchild – Lyrica (pregabalin) is often prescribed because it seems to be helpful in nerve pain disorders and Migraine. It is very similar to Neurontin (gabapentin) but has slightly less to worry about in the way of side effects. Here is the forum thread on anti-convulsants that might be helpful: https://migraine.com/groups/users/forum/topic/anticonvulsants-and-antiepileptic-drugs/
I am wondering, have you gotten a diagnosis of chronic Migraine? If so, there are many other options, including onabotulinumtoxinA (Botox) that might be helpful. You’ll see many single drugs in the links Nancy gave you, but remember that these can also be used in concert with each other as well. Sometimes what doesn’t work singly may together be much more effective.
Unfortunately, finding a good preventive often takes a lot of patience. It is hard work but worth the trouble
December 21, 2012 at 1:00 pm #41373
I met with my new neurologist yesterday and found out some great information. The sulfa component in Topamax and the sulfa in the antibiotic are different. The sulfa in Topamax has been found to NOT have the same effects for people that are allergic to antibiotics with sulfa. Please have your doctors and pharmacist check diligently about what type of sulfa is in each medication. Good luck to everyone!
December 21, 2012 at 11:50 pm #41374
Thanks for the information. It’s always a good idea to have your doctor and/or pharmacist check if you have issues with sulfa medications, like you suggested.
December 26, 2012 at 7:07 am #41375
I am also very sensitive to most ALL medicines. IF THERE ARE SIDE EFFECTS, I WILL GET THEM…ESPECIALLY THE RARE ONES :/…I have migraines but they have lessened, thankfully, as I have gotten older. I suffer mainly from fybro now. I have taken everything for fybro on the market with COMPLETE failure. Thought I was stuck with a lifetime of narcotics and refused that option so started researching and discovered Topamax. I also suffer from depression and BPD/anxiety disorder. I read that Topamax could help with ALL of these AND the migraines, so I suggested to my DOC that we try it out, he agreed.
He started me on 25 mg twice a day for a week slowly titrating me up to, evetually, 100 mg. So far, this has been a miracle drug for me!!! I am sooo happy!!
Yes, I have the nasty side effects of the tingly hands, fingers, cheeks at times, NO appetite ( can handle that lol), soda taste like butt lol, food does too basically, was tired at first but that went away ( I know it will happen again as I increase), but thats been it. I have NO pain anymore and I’m not loopy from narcotics. I am sooooo happy I found this medication. I just pray it continues to work,
So, to all those reading these bad things that some have gone through, just remember, not everyone has the same experience with a certain medication. What works great for one will not work for another. Trial and error, as with everything in life. Don’t get disheartened. Chin up
December 28, 2012 at 1:47 am #41376
Thanks so much for sharing your good news with us. It is true, Topamax works wonders for some people, but not so much for others.
I’m glad it’s helping you!
December 28, 2012 at 8:09 pm #41377
I am on 200 mg. Topamax 2 times daily = 400 mg per day. At one point I took 1000 mg never any bad side effects. I think I have taken it for so many years its not effective …..I have noted the name brand is more effective than generic
December 29, 2012 at 11:14 pm #41378
Great name by the way!!
That is quite a bit of Topamax for migraine prevention. Do you take it for other disorders too? Most migraine specialists we work with suggest when a patient reaches 200 mgs. if they see no benefit, it may not be the right drug for them. How many migraines are you getting each month?
December 31, 2012 at 1:39 am #41379
I’ve been on topamax for about a month and a half now. I’m now on 25 mg which is a comfortable dose for me. At 50 mg I lost my appetite. At 75 and 100 mg I deal with memory loss and confusion. So 25 is it for me. I do also have the tingling in my feet but can deal with that as it’s manageable. I’ve never had a kidney stone but am definitely concerned about it. i’ve made my primary doctor aware of the side effects as my neurologist keeps me informed.
December 31, 2012 at 3:00 pm #41380
RILNISKI – Kidney stones are a real concern for some patients, and others seem to be able to avoid them pretty easily. Drinking lots of water constantly throughout the day is important, as is staying away from soda. Most patients lose their desire for sodas while on topiramate, but those who don’t will want to stay away from them as they contribute greatly to the formation of kidney stones.
It may be prudent for you to see a urologist or nephrologist during your topiramate treatment. These specialists can help you monitor and care for your kidneys so that problems are found and treated quickly. Waiting until there is enough of a problem you are aware of it usually means a great deal of suffering needlessly – something we as Migraineurs really want to avoid if at all possible
January 2, 2013 at 7:08 pm #41381
In regard to topamax and kidney stones: I have found that topamax kills thirst (for me) and that may be the major way it causes the stones. I had a very long bout with a stone that took seven days to pass, in five pieces. I quit straining my urine after the last one so don’t know exactly how many pieces really passed. Unimpressed with modern technology that showed only one stone and joking about that little detail to my urologist, I was told that it broke up into several pieces and I was fortunate that it did because surgery was then unnecessary. (It was so compassionate of him to keep that little possibility secret. The pain was enough to deal with.)
The dosage that I take is 50mg twice a day and it has cut down the number of migraines but not entirely eliminated them. There are side effects and maybe I’ll write about my experience with them sometime but this threat of kidney stones seems to prevent people from trying something that is like a miracle to me. Just remember to drink a lot of water and be aware that you may not have the normal signs of thirst. Some other advice about not drinking sodas sounds reasonable too, but I don’t drink them anyway so my stone was probably from dehydration.
This website is new to me and I’m looking forward to learning and sharing with others who understand all too well the daily challenge of living with a disease the majority of people still believe is “classic hypochondria”.
January 2, 2013 at 10:55 pm #41382
Hi Kat, and welcome to our forum! Thank you so much for your thoughtful comment, however there is much to be said re: topiramate and kidney stones from a medical perspective…
These stones are not the result of dehydration, although dehydration may contribute to the problem if you have it. You are right that dehydration itself may cause stones and should be avoided for that reason as well as the fact that dehydration is also a potent Migraine trigger.
It’s very difficult to describe what happens without getting very technical, but I’ll give it a try.
The problem is that a change happens within the area in the kidney that produces urine. The pH is changed by the medicine and minerals are *thrown* by the kidney and collect together in the tubules. If this is happening, it doesn’t make much difference how much you are drinking because the minerals are being shed too fast in relation to the water for them to remain in solution. They *clump* together and form stones. Often these stones form high in this area, and instead of looking like little balls as often occurs with dehydration stones, they kidney stones look like deer antlers. These are called staghorn kidney stones and are a serious side effect of this medicine. Pieces of the *horn* break free and must be passed. If the stone has formed too quickly it may not have a chance to break off and surgery may be necessary to remove the stone. Drinking soda is one way to make this pH problem even worse, contributing to the formation of the stones. It is not the sole reason for the stones however… the topiramate is.
Topiramate stones are unique. The threat for many of us is very real and very serious. Let me repeat: drinking more water will usually not be helpful for patients who form topiramate stones. If you have formed one stone, the chances are astronomically high that you will form another stone.
Please, do yourself two favors. First, seek the help of a nephrologist if you wish to remain on the topiramate. I’m glad it is helpful to you – you are one of the lucky ones that way. However, this is a serious side effect that you need to be monitored for by a doctor who can help you do everything possible to reduce the chances another stone will become a problem. Urologists jobs involve the urethra, bladder and ureters. However, a kidney specialist (nephrologist) is the doctor best equipped to help when the problem is the kidney. Your problem started in your kidney as a result of the drug, so seeing this type of specialist is really key for a good outlook for you. A nephrologist will likely offer to test your blood and urine to help monitor your pH, citrate and other aspects of kidney health markers to be sure you stay as close to *normal* as possible.
Second, be sure you find a doctor who will monitor you at least every 6 months or even more frequently at least to begin with, for more stones. This will entail imaging studies to watch for future stones. If one is found, lithotripsy is a much less painful way to break up the stones so they can be easily passed the following week or so.
Fortunately, those who are able to use topiramate successfully are sometimes found to be able to stop the drug or reduce the dosage after taking it for a period of time. It seems to reverse some cases of chronification, leaving the patient better than when they started.
January 3, 2013 at 4:09 am #41383
Ellen: Thank you for this valuable information. I had never heard any of this before in spite of all the research I’ve done on migraines and every single drug that I take, especially topiramate. The kidney stone was in Sept., 2009 and I had been taking topiramate for at least six years. At the time I did recall not drinking much water over a period of several days because of being preoccupied with something I was enjoying. (Working in the yard, probably getting overheated, etc., just what someone with migraines needs to do to herself.) It’s good that I don’t drink sodas anyway, except maybe once every two months or so, (I’m also a diabetic) as that was not something that I had ever heard about.
Stopping the drug is not an option. I tapered off after the stone and the migraines came back with a vengeance.
Please know that your suggestions and advice are appreciated and I plan to make an appointment with a nephrologist as soon as possible.
God bless you for caring so much.
January 5, 2013 at 12:42 am #41384
Hi Kat – It’s possible that you are a stone former with topiramate, but more slowly than people like me. I have a comorbid condition that can affect my kidneys and can cause stones all on its own (one reason I should never have been on it in the first place – hindsight and all that). We didn’t know about my comorbid condition however.
The stones from my autoimmunity are small, and like little peas, while the topiramate stone was a staghorn stone. When you catch the stone, it can be analyzed to see if it is a topiramate stone or caused by something else. Analyzing a stone is really important in figuring out what is happening and how to stop it if possible.
There’s no doubt that my other condition made the staghorn stone more likely/quick to occur (and it happened very quickly for me – weeks) however at that time topiramate was not thought to cause stones and we know differently now.
I respect your desire to continue the topiramate treatment. If I was in your place and situation I might do the same and just by hypervigilant and proactive. We all have to make our own choices though. My goal is just to be sure that you (and everyone else) understand some of the ramifications and limitations of your choice.
The tough part about having a chronic health condition, is the choices we are forced to make. Some of them nearly on a daily basis. They’re hard, but necessary. Making those choices based on information is the important part.
Good luck with your treatment. I very much hope it will continue to be effective for you!!
January 5, 2013 at 8:02 pm #41386
Ellen: I am rethinking remaining on topiramate. I had a stone in 1983 that was probably due to dehydration because I was involved in some community work at the time and trying to stay out of bathrooms, therefore not drinking enough water. They do run in my family. My dad and two sons have had them. That stone went through in three days.
This current cold/wet weather system we are having is playing havoc with me right now and there is no way I can even consider tapering off the drug until much later. There is another choice, however.
Several years ago I had horrible headaches at the right lower base of my head that nothing but Zomig or nerve blocks would stop. This went on for two years, awakening me with a jolt around 1:15 A.M. every night. Not wanting to take drugs, I pursued every avenue, including physical therapy (felt good but didn’t work) to chiropractic (did absolutely nothing).
Next, I went to a neurologist who gave me botox injections all around my head, including both sides in the back and all across the front, above the ears, etc. The injections are not that painful and they did stop the regular migraines that are felt on the facial area. They did nothing, however, for the pain in the back of the head.
Just in case someone else is suffering with that type headache, here is what I figured out on my own. For over 50 years I had slept with a husband who had severe, untreated sleep apnea. All that time I slept on the left side of the bed and my right shoulder was digging into the right side of my head. It was sore to the touch. After our children finally grew up and left home, freeing up some bedrooms, my husband moved into one of them so I could finally get a good night’s sleep. Out of a very long ingrained habit, I continued sleeping on the left side of the bed with my right shoulder digging into the right side of my head.
About 2/3rds of the way through the two years of these nightmarish headaches, I bought a foam horseshoe-shaped pillow that I began to curl around my neck as I slept. It kept my shoulder from digging into the back of my head. At the end of two years the headaches had stopped on their own and I still sleep with that pillow.
Botox injections did work for the regular migraines and I have decided to go back to the neurologist who gave them to me and give them a try before getting off topiramate. There is no way I want another kidney stone.
Sometimes we do things to ourselves that create health problems without meaning to or realizing it and have to be good observers and detectives of our own habits. After 77 years of migraines, I’ve become good at it. It takes longer at times, but I’ll eventually figure out what is different in my life. We must be aware and willing to do this because doctors are not mind readers nor do they observe us 24/7.
This was not meant to be book-length and I apologize for that but it’s possible someone else may be out there with the same type headache caused by the same sleeping position.
January 6, 2013 at 3:44 am #41387
Kat – Thank you very much for talking about your horseshoe pillow. I too often use a horseshoe pillow to help support my neck and make it easier for me to sleep on my back. My neck is pretty weak, and it is helpful.
At one point, my Migraines were so horrible that I could not lie down no matter how much I wanted to, so I spent 3 years sleeping in a recliner sitting up with that horseshoe pillow around my neck to keep my head upright. Eventually I was able to lie back down again (Hallelujah!) and was able to stop using the pillow, however I still pull it out from time to time.
You and your doctor have to make your own decision re: the topiramate. I would encourage you to talk to a nephrologist and get their input as well. As bad as kidney stones are, I would really just hate for you to end up with chronic Migraine in your effort to try to prevent them. At least you know what works for now. Crossing fingers that the Botox is helpful and you can get off it easily – – if that is your choice.
I would be remiss if I didn’t add – Please be sure you stop the topiramate with your doctor’s help. There is a very specific way you need to do this to prevent some pretty serious side effects. You probably already are aware of this, but I thought I should probably mention it – just in case…
January 16, 2013 at 5:54 am #41388
I started Topamax in September for migraines and daily headaches. I had been on propranolol which did not help. I have used imitrex, treximet, and relpax for migraines. I was taking excedrin daily and my neurologist said I was addicted to it. He started me on the Topamax to control the migraines and wean me off of the excedrin. Doctor claimed that once the excedrin was out of my system, the daily headaches would stop. I started on 25mg for a week then to 50 then to 75 and finally to 100mg. At that point, I was still having headaches so my doctor doubled the dose to 200mg. I had already had the tingling hands, word finding problem, and loss of appetite. Once the dose was doubled, I couldn’t think at all. I failed a math test at school because I couldn’t even make sense of what was being asked of me. The tingling became so intense in my feet and face. My eyes and lips were twitching. Severe ringing in ears. After 3 weeks of this high dose, my eyes started bothering me. I panicked at that point and lowered my dose back to 100mg and called doctor. I had eyes checked and all was fine including eye pressure. I stayed on 100mg for another month or so but eyes still bothered me. It felt like pressure and aching. I had eyes checked again and all was still fine although pressure was up slightly in one eye but still normal. I weaned off because I was worried about my eyes. As soon as I went off, my headaches returned. I have not had a migraine yet but my daily headaches were back even though doctor said they were rebound headaches. I couldn’t live with the daily pain and the effect it has on my life so I decided, after having my eyes checked one more time, to try again. I started on 25mg for 1 week and now am on 50mg. I told my doctor I will never go up to 200mg again. I will try to stay as low as I can. I don’t feel hunger very often at all but this time it has not taken away the desire to eat. I am a binge eater and the first time on this med, it worked on that addiction center in my brain. I lost 16 pounds the first time.
January 16, 2013 at 10:13 pm #41389
Kate – You may very well find that, titrating up much slower may help you minimize some of these side effects. Also, pay close attention to the other information in this thread about supplements etc. Topiramate depletes the body of necessary vitamins and minerals, and replacing them can often be helpful enough to keep the patient on enough of the drug to at least improve management. Of course, never make any changes to your current protocol without talking to your doctor about it first. However, there are a lot of good suggestions here that your doctor might not even be aware of if he/she is not a Migraine specialist who attends conferences regularly.
Good luck and PLEASE keep us informed how things go. Topiramate can be a miracle medicine for many, but it can be scary too. When patients read the experiences of others it is very comforting and helpful to them. Thank you for adding your story here
January 17, 2013 at 9:21 am #41390
This is the first community I have ever joined in my life, and I think I can start here for a good cause. Even if, you people, are way far from where I wrote. Moreover, a lot of questions that I have, I hope will have answers anyway.
I live in Italy, Milan. Have been diagnosed as chronic migraineur in 2003, and promptly put under Topamax medication (but I stared my hospital pilgrimage way before because I was six years old when the first blow stroke). I cannot actually complain for the Topamax results with me, even if, my neurologist had to give me the maximum dosage legalized in Italy for migraine patients, which is 75mg/daily. Often this dosage is not enough. In addition, I have to take at least one more candy (Tramadol hydrochloride). I had had already three episodes of kidney stones, related to my preventive usage of the medication. Fatigue is always around the corner, but I prefer all this to migraine.
My question is, can I test my blood and liver possibly, for the actual level of intoxication caused from Topamax etc.?
Lately my migraines rhythms are increasing, so I also would ask my doc for a RMN. That would check anomalies better then TAC right?
January 17, 2013 at 4:08 pm #41391
I’ve been on Topamax for 3 years and it has been a God sent for me without it I would not be able to function at all. At first it was a little rough but my doctor started me out slow with the small dosages..25mg every 3 months until I hit 300mgs and It has been amazing…I had the tingle feet and hands, and weight loss and a little fuzzy memory but nothing major. I’m also on 25mg of Nortriptlyine(was on 75mg but didn’t like how it made me feel I cried a lot on it).Until I got in my car wreck in Aug(2012)(whiplash and hitting my head on the steering wheel don’t go good with some who suffer from server migraines..not that its good anyways! )my migraines had pretty much been down to just one a month that that was during my period. And my everyday ones had been very mild to where I could just live with them without taking anything(how funny that sounds to some people I know, but when they are has bad as they have been for me, which is hard to explain unless you have had them.)Now they have started back up again so it back to figuring out what to do with them with overmedicating me.
January 17, 2013 at 5:50 pm #41392
I feel strange reading all the comments here. I’ve been on Topamax for nearly 7 years and have not had major problems. In the first year I can recall having tingling in my fingers but that went away after my body adjusted to the drug. In fact, this medication has been a lifesaver for me. I still have migraines but not nearly the number I had prior to taking Topamax.
I’m so sorry that so many of you have suffered with this medication. Just keep plugging away and you’ll find something eventually.
January 18, 2013 at 6:20 pm #41393
Topomax-the stupid drug…that is being too kind. I was prescribed too ax in December 2004 by the diamond headache clinic in Chicago. It wasn’t long after that I lost 15 pounds, weighing only 93 to begin with wasn’t an option. So doctors prescribed more drugs so I’d stay with typo ax. It worked for awhile. But then so did the stupids. The forgetfulness, the foggy head, the incredible hands shaking, and then the stuttering. Lts not forget the damage to your eyesight. i developed dry eye so secere that it required medication, also the dentist told me i was losing all the enamel from my teeth. After 18 months on this I said no more. Along with that I was on neurontin. So talk about being a zombie…I was their queen. After a few years I tried it again because nothing else was working.
If it works for you…great, but I think in the long run the side effects outweigh the benefits. I still have memory issues and its been years. I don’t recommend it at all. I met a woman in the doctors office who had taken only 2 too ax tablets and temporarily lost her vision entirely for 2 days!!! I say temporarily because it turned out to be temporary. She didn’t know at the time she would regain her sight. Definitely think twice before you swallow one of those!
once Las Vegas NV
January 18, 2013 at 9:05 pm #41394
I took Topamax-200mg twice a day for a couple years. It seemed to help quite a bit with the migraines but it affected my memory and made it difficult to talk. I would be saying something and then I would not be able to come up with the next word, I would know it, and I didn’t stutter, it just wouldn’t come out. It was very annoying and embarassing.
January 18, 2013 at 9:41 pm #41395
I would never take Topamax for my migraines. I have heard it termed Dopamax because of the zombie-like state it puts some people in. But the most dangerous side effect that most people never seem to be warned of is sudden-onset narrow-angled glaucoma, which can cause permanent blindness.
Moderator’s Note: Please see the reply to this post for more info.
January 19, 2013 at 1:29 am #41396
One of the side effects is depression, but it was not explained to me nor did my doctor ever ask me about any changes in thoughts. It wasn’t until after I was taken off – because it wasn’t working – that I realized it was causing me to have suicidal thoughts. It was a few days after being off of it when something happened and it dawned on me that I did not think about killing myself. It was so bizarre. That’s when I thought about it and I was at a point that pretty much on a daily basis I was contemplating suicide – how to do it, when to do it, where to do it, etc. There was one day when I was emptying the dishwasher and I suddenly looked down and I was holding a steak knife pointed towards my chest, ready to plunge it. Scared the daylights out of me. I think doctors need to better monitor patients on this drug to make sure that patients understand what symptoms of depression are or even just to make the patient aware that if they do have a suicidal thought, to tell the doctor. I wasn’t walking around sad or anything – I was just constantly thinking about killing myself and didn’t think anything of it (like, I had not connected these thoughts to Topomax). Maybe it was just my doctor, but not once did he ask me if I was having any thoughts of suicide. Maybe if he had, then I would have recognized that I was. It sounds crazy that I would need to be asked, but I really did not think about the thoughts themselves until after I stopped having them [once off Topomax]. It was very creepy.
January 19, 2013 at 7:42 pm #41397
People should indeed be aware of some of the potential issues with Topamax. Please excuse me for removing your link. Although that particular page seemed to be accurate, that site has quite a bit of information on Migraine that is either incorrect or out-of-date. You can find comparable information on Topamax here on Migraine.com at https://migraine.com/migraine-treatment/topamax/special-warnings/.
January 19, 2013 at 7:45 pm #41398
Topamax carries a black box warning about depression, suicidal thoughts, and the like. Yes, doctors should tell us these things, but they too often don’t. This is one reason why it’s extremely important for us to read the information we’re given when we get our prescriptions filled. That info should have been included with your prescription. If it wasn’t, please report that to your pharmacy manager.
I’m not scolding you for possibly not reading that info, not at all. Just want to let you know that your pharmacy should give you printed info that can help you too.
January 23, 2013 at 4:45 pm #41399
I would always read the info that comes with the meds until a few years ago when my neurologist wanted to start me on some med and one of the side effects listed was that it could cause seizures. I had surgery to stop seizures many years ago so I was not about to start taking a med that could cause them. When I addressed this concern, my neuro brushed it off stating that all medications – even OTC medications – all have these laundry lists of side effects to cover themselves but that the risk of having any of the listed side effects is rare. Since he had such a flippant attitude towards these side effect lists, I believed him and would only go back to read the list if I felt something different (like outright vertigo or stomach issues), just to see if it was listed as a side effect. Again, when I was having these suicidal thoughts, I was not conscious of them. It was after I was off Topamax that I noticed that I was no longer having these thoughts. They did not happen suddenly, it was a gradual progression so it wasn’t like being “normal” the day before starting Topamax and then the next day you want to jump off a bridge. They were just thoughts that crept in more and more and I thought it was just me (or maybe hormonal). Again, if the doctor would have asked then maybe that would have given me pause to think and realize that, gee, I have been thinking about wishing my life was over for no real reason and then he would have known to take me off of it. It’s scary to think that if it had actually helped my migraines, I never would have stopped taking it and I may have very well have given into the suicidal thoughts.
January 25, 2013 at 3:01 pm #41400
It’s an uneasy feeling when the potential side effects of medications outweigh the benefits of it, especially if we are not seeing any relief from our migraine pain. Communication with our health care providers is so important – if they aren’t listening to our concerns, it may be time to find one who will. Which is another daunting task in itself, but necessary at time. I find that it’s often more difficult to advocate for ourselves than it is for other people.
How are you feeling now?
January 25, 2013 at 4:10 pm #41401
It’s so important that we as patients remember that we are ultimately responsible for our health. We make the ultimate decisions. Our doctors can walk away when something goes wrong, but we live with those things for the rest of our lives – – if they didn’t kill us.
Doctors have thousands of patients to remember. They cannot, nor will not remember everything about us. This makes it our responsibility to be sure we have these important conversations and make decisions with them. To be ignoring potential side effects could be very dangerous as you have illustrated here. Somehow, we need to find a happy medium where we are at once aware but not making ourselves paranoid over the possibilities. We also need to remember the value of a second opinion.
Your doctor did have a certain point to make: The list of COMMON side effects tends to be very long and overly inclusive, because they are made to report every little symptom that occurred during trial. This can include vague symptoms like headache, flu symptoms, even back pain. We have no idea if those symptoms are even remotely related to the medication – the list is there only because they occurred. Some patients get so obsessed with possible side effects that they fail to acknowledge that this list is only a list of POSSIBLE effects, not something that is even likely to occur. I have seen patients refuse to take any medicine because they are so afraid they’ll get every side effect listed, not understanding that all medicines come with side effects. This is where choice comes in to play.
Our Migraines may be severe, and when faced with that potential side effect list we think to ourselves – I couldn’t live with that too – forgetting that 99% of the time those side effects go away when the medicine is stopped. Some however, do not, and they absolutely need to be taken very seriously. Only the patient can make the choice whether it is worth the risks to them to try the medicine. Many want to try and will start out with very, very tiny doses of a drug – crumbs actually – to see what will happen. Then they titrate up to higher doses extremely slowly, ever ready to back off or stop if it becomes necessary. Doctors should be telling patients that this is a possibility, but they forget or choose not to in some cases which is sad.
I’m not advocating for ignoring side effect potentials – quite the opposite. Sometimes we forget that conversations are necessary with our doctors so that we’re all on the same page. We make choices – which are worse, my Migraines or the potential side effects. In your case, you have extenuating circumstances that seem to make the possiblity of seizure-type side effects more likely and dangerous. You would be silly to ignore that IMHO. But to refuse to look at potential side effects remains a dangerous proposition…
January 26, 2013 at 9:41 am #41402
I took Topamax for about three years. Initially it worked for me. however it has had some side effects such as hair falling out and slight memory loss but has not been effective in preventing headaches for about a year. My specialist has taken me off it gradually and now I’m using Neurontin. Also Topamax has affected my liver function and so that is another reason I’m not taking it. When I get a headache I now take relpax. It is okay but not wonderful. I often need to take an extra relpax and also I take two Voltarin Rapid tablets which seem to help. I have taken many migraine medications, starting with Imigran about 15 years ago.imigran stopped working and then I was put on Zomig which worked for a number of years. Finally, I needed a preventer. Topamax was not the first but the others I took did not work from the word go. Something I took made my palms itchy and start to lose skin!
January 27, 2013 at 10:55 pm #41403
Lose of skin would be a great reason to stop taking a medication!
When you say “it is okay but to wonderful” what exactly do you mean? Some people have good results with Neurontin, is it time for a dose adjustment? I’m not sure if you know We need to be careful not to take abortive medications like Relpax and/or pain medications like NSAIDS more than two to three days a week because we can create another problem called medication overuse headache – and nobody wants that! If you’d like to read over this information on medication overuse headache click on this link; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/
January 28, 2013 at 2:47 am #41404
Hi cath432 – Shedding of skin as a reaction to medicine is a serious reaction. Did your doctor diagnose it for you?
There is a rare condition that can cause loss of skin when certain medicines are taken. It’s called Stevens-Johnson’s syndrome. I’ve known of just a few people who have had this rare reaction. Usually it also affects mucus membranes, so may not at all be what happened to you. I do know of one patient though that lost the skin on hands and arms only. I bring this up because a reaction like this is something you should be aware of and note to your doctor when looking for future treatments. Here is a Mayo link on it: http://www.mayoclinic.com/health/stevens-johnson-syndrome/DS00940
February 1, 2013 at 3:02 am #41405
I started getting migraines when I was around 12 years old (I’m now 23). I took Topomax for several years around 4-5 years ago. I probably started taking it when I was 16. I’m not sure what dosage I started out on, but it was quickly bumped up to 100mg daily and then 200mg daily and then 300mg daily. Before taking Topomax I was at the top of my class, all A’s and B’s. After being on Topomax I didn’t get the tingling or numbness, but I did get the memory loss/confusion. This severely impacted my school work. Even now that I’ve been off of Topomax for several years there are still have trouble finding certain words sometimes and have to describe what I’m trying to say.
I also never saw any result, even though I was on such a high dosage. My neurologist wanted to up my dosage even further, but I decided it would be best to ween myself off and then I stopped seeing that neurologist. Topomax and my experience with it is one of the reasons why I am cautious about long-term prescription drugs. I never had much luck with the other medications I was prescribed either (Maxalt, Migraten, Imitrex, Propanalolol (which actually made my migraines worse), and others). Instead, I prefer taking vitamins and supplements (CoQ10, B50, C, and Magnesium) along with acupuncture treatments. Of course, this hasn’t completely gotten rid of my headaches, but it really has helped.
February 1, 2013 at 9:01 pm #41406
Hi lindsey – I’m glad you’re having results with the vitamins and supplements. Care should be taken with them as well, as they too act just like a medicine does in your body. They can rise to toxic levels and create even more problems when not taken in a balanced and careful manner. When vitamins and supplements rise higher than the body’s homeostasis can deal with, other vitamins, minerals, enzymes etc can suffer depletions and the balance is upset. For many Migraineurs, it is this upset in the balance of their body-wide homeostasis that triggers their attacks. I guess what I’m trying to convey is that all the things we put into our bodies come at a risk, and that includes non-prescription remedies.
February 4, 2013 at 8:37 pm #41407
Having suffered with migraines for the last 19 years I’ve been on topiramate now for nearly two years, taking 100mg twice daily, with the tingling in the hands and feet. I also stuggle to get my words out at times and children’s names. But interesting having read a previous post about liver function, my own liver function blood test result have been raised and are being investigated I now wonder if topiramate is the cause ?
February 5, 2013 at 1:17 am #41409
My 15 y/o suffering from depression and severe migraines was started on topramate about 8 months ago. We keep blaming all of her awful side effects on other drugs but after reading these comments I think it may be this drug. She doesnt get as many headaches but what difference does that make when you are dizzy and nauseous everyday to the point that she cant stand and fall out of her chair at school. Her memory is shot. She has gone from an honor student to barely making C’s
All she wants to do is sleep all the time. I know they say that the dose should be split up but if she takes it in the morning her face is on the desk. She was up as high as 150mg at night but that was not sustainable. She is at 100mg at night and now dropping to 75mg at night. Im going to call her neurologist and see if there not something else out there. If anyone knows of a better comparable drug for adolescents Id love to know it.The Drs are doing MRIs and everything else when it probably just this dumb drug.
February 5, 2013 at 6:58 pm #41410
I’m so sorry, but there is no way for those of us on this forum to determine if elevated liver enzymes may be caused by your treatment with topiramate – only a doctor can answer that question for you. Please use this information to have a frank and detailed conversation with your doctor. If you don’t get the answer that makes sense to you, please, get a second opinion. While our livers are miraculous and can regenerate to a degree, hurting the liver is considered a serious side effect and should be certainly respected. If the topiramate is helping you though, I would hate to see you discard a helpful drug unless they are reasonably sure that is the culprit. It is an unfortunate fact that patients will often have good results with a medicine, then stop it, only to find when restarting it later, that it no longer helps them.
All things to consider.
February 5, 2013 at 7:05 pm #41411
donnam – I am so sorry your teen is having such trouble. Even Migraine and headache specialists tend to call topiramate “Dope-a-max”. That said, please, if this drug is helping the Migraines, don’t discard it without careful consideration. You make some very valid points, and only you, your teen and their doctor together can make this decision.
It is likely that your doctor doesn’t want to discontinue the topiramate because it may not work as well later if another try is determined to be necessary.
Did you get a chance to look through all the posts in this thread? Do you remember how your teen was ramped (titrated) up in dosage? Are you supplementing with potentially depleted vitamins and minerals, or at least testing for them? In other words, is your teen’s health otherwise maximized to the best of your knowledge?
Yes, there are other anti-seizure medicines that may be helpful. Have you tried any of them? You might find this post helpful to you: https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/
March 13, 2013 at 12:36 am #41412
I took Topamax for two months (for tremor) and had ramped up to 100mg/day before deciding the side effects were too much: sore tongue,strong metallic taste, heartburn, cough. After talking with the dr. I tapered off and have been off for a week. The side effects diminished as i tapered down, to about 40-50% of when they were at the worst, but have not diminished further for the last 5 days even though i have been off Topamax for a full 7 days. Does anyone have experience with how long it takes to completely resolve them? The worst is the metallic taste and it seems to be strongest for several hours after meals.
March 13, 2013 at 6:40 pm #41413
dabbindan – Please take a few minutes to read this entire thread. In it you will find information about vitamin depletions etc that can result in some of the trouble you’re experiencing. Because these are deficiencies, it will take time for them to resolve themselves, however IF this is your problem, you can also help that along.
Remember, any lingering problems with any drug should always be discussed with your doctor.
March 25, 2013 at 12:27 pm #41414
I have had minimal side effects with generic Topamax 25 mg at bedtime. Not sure if this low dosage is working due to my tolerence level, or the other things I have done to reduce my chance of triggers.
At first I was zoned out. Didn’t even realize it until my manager pointed it out. I have been out of work for 10 days waiting to see if this passes, because honestly this is the first thing in 2 yrs that stopped the daily onslaught.
It seems to be better, but I also do not have 2 huge computer monitors in my face, a room full of bright lights, phones ringing and the stress of work to be done. So who knows until I get back to work.
As far as day to day living, it seems I am getting better.
A few things to take note, even if it si doing well for you:
It is great that you can lose weight on this drug, but that is because, at least for me, you have no hunger trigger. For me it is 0. So I am making every morsel count and keeping a food diary to be sure I am eating enough.
I figured I will see if wheat intolerence and sugar have anything to do with my health issues. Cut them out completely for now.
The tingling in my hands, feet and face is minimal. Annoying but not too distracting for me.
Dehydration is another issue for me. Yesterday I went to the ER because of heart palpatations. I was in A-fib (prior health issue). After a bag of saline, I was fine, which to my un-medically trained mind says “it was caused by dehydration”. I point blank sked if the Topamax can cause Afib, he said No. Period. BUT…..in my mind if the drug makes me thirsty, takes away hunger, which in turn makes me eat less food (which helps to hydrate), and they I am dehydrated…..it is the medication even if secondary.
So I have set out 4 20 oz bottles of water, which I must consume throughout the day.
The weirdest side effect I have is word association. My daughter and I were talking on the phone. Her roomate moved out and the internet was in her name. She explained she had to have it for school, could I help her. I spent 15 minutes argueing with her that she didn’t need it for school, that was rediculous. She could watch my Netflix, or stream on her computer. Why did she need TV. She is a nurse, so she was patient with me mostly. Then she spelled INTERNET……..for the COMPUTER…….NOT CABLE MOM 😀
Both the neuro and the ortho had slips of the tongue and called it dopamax, so that is no surprise to anyone.
As with any medication, go to the doctor equipped with questions and if he doesn’t give you answers get a new doctor.
DO NOT EVER FEEL INTIMIDATED OR STUPID FOR ASKING QUESTIONS!!
I am very thankful to have found this site. This silent disease is very hard to live with alone. People look at me and see a healthy 51 year old woman, and they have NO idea I cannot SEE their face at that moment!!! God Bless
March 25, 2013 at 4:18 pm #41415
Hello and welcome!
Topamax can indeed cause some strange side effects. For me, the cognitive effects were just too severe.
On the tingling – potassium often helps, so you might try eating potassium-rich foods. Bananas are good for that. If it doesn’t stop, you could talk with your doctor about a potassium supplement.
I’m sorry you need us BUT very glad you found us. You’re so right about it being hard to live with Migraine alone. You’ve found a community of people who understand, so you aren’t alone now.
May 1, 2013 at 9:32 pm #41416
this is a follow up to my post of one month, two weeks ago. my after topamax side effects continue (since tapering off med in early march)although somewhat diminished.sx are: metallic taste alternating with raw tongue,
a sensation of hot/metallic breath, mild heartburn, occ thirst, bowel pattern disruption tending to constipation. they vary in intensity between 25-50% of the severity when i was taking the full 100mg/day dose. saw my neurologist who said he’d never seen persisting sx once fully off med. he did however take my report seriously and offered a ent referral. (and he did ask me to keep him updated) i’m now on a different med for tremors and it’s working side effect free. i did a google search to see if anyone else has reported a similar topamax experience. the only ones remotely similar were people who reported persisting mental slowness months after stopping med. i took those reports with a grain of salt. :^) (sorry i couldn’t help myself).
i can’t really say my experience will be of help to anyone as it seems so idiosyncratic, but one can always file it away mentally and dredge it up if you have a similar experience.
May 2, 2013 at 6:53 pm #41417
I am encouraged to have found this group…Migraine.com…which to me means that there are people who understand how I am feeling when I say I have a Migraine… everyday…and don’t just yes me to death :). Ii suffered head injury back in 1995..and since then I have a had Migraines on a daily basis. Finally I am in the wonderful hands of a neurologist who herself suffers from Migraine. After many years and many different treatments and drugs that didn’t work and hospitalizations, and years of psych therapy and whatever I could do try and help myself get better…we decided to try Topamax. I started out really slowly…and was using Imitrex shots with it when the migraines got really bad. Then my insurance would not cover the Brand name Topamax and or the Imitrex shots…so she started me on the Generic Topiramate…but in order for it to work I had to take about 700 mg a day… my Dr had to go to a hearing before the insurance board to make a case for Topamax for use for Migraines. Well needless to say we were frustrated because I had gotten to such a good point and then I couldn’t get the drug I needed. This was about 5 years ago…Today I am taking 450 mg Topiramate daily..and still get Migraines daily…but I still get some relief in the afternoon…they were able to give me the Generic for the Imitrex Shots…and they work ok…but I still have to go to the Emergency room. The Topiramax does work for some
when taken at a gradual increase…
May 15, 2013 at 11:04 pm #41418
I have been taking Topamax for the last two years and it seems that each day that passes I lose more brain cells. I have not had any relief from daily migraines with the Topamax either. My Neurologist has me at 100mg 2x a day. We have started Botox and I have had 5 migraine free days in the last 3 months which is a great improvement considering my last migraine lasted for 8 straight months. We tried DHE and that did nothing and while in the hospital the attending Doctor took me off Topamax cold turkey and it put me into a tailspin. Hoping when we finally take me off the with drawl symptoms aren’t to horrible.
May 16, 2013 at 6:50 pm #41419
monicaburek – Oh dear, going off topiramate cold turkey can be so very dangerous! I hope you’ve had the chance to read the rest of this forum thread on topiramate as I think you’ll probably learn a LOT from it
It doesn’t sound like you’re seeing doctors that are probably going to be able to help you. Have you ever considered seeing a Migraine and headache specialist? These doctors have had specialized training in diagnosing, treating and managing these disorders and really are the best place for those of us who aren’t seeing benefits from our regular doctors or neuros. Frankly, doctors and neuros get very little information on headache disorders. Many can’t even appropriately diagnose patients, especially if they are even a little bit atypical.
Here is a link that might be helpful for you in finding someone close that will be able to find some answers for you: https://migraine.com/blog/looking-for-a-migraine-specialist/
Botox can be really helpful for some people, and for others – not so much. Not all doctors who use Botox injections have had the training they need to give them appropriately for chronic Migraine. So, there can be *operator error* in some cases.
June 1, 2013 at 9:28 pm #43230
I Recently started taking Topamax and had worked up to 200 mg a day. Had the usually side effects of loss of appetite and numbness and tingling in face and hands and feet. Nothing too bothersome as I went from 15+ migraines a month to 2 a month. On April the 29, i got an upper Respiratory infection. After a week, it got worse and turned into bronchitis. Dr. put me on steroid and Antibiotic. Another week went by, no change, given another round of steroid and the dr added breathing treatments with albuterol. Another week went by…Still no change. CT scan of lungs was clear…no pneumonia, but still brochospasm and respiratory issues. Has anyone else had this as a side effect of Topamax? I am beginning to think that maybe it is. Would appreciate any info anyone has on this. Also, I got confused and have only been taking 100mg of topamax for the last few days, and i’m having horrible withdrawal symptoms. Should i go back up to the 200mg even though i think it’s causing the respiratory issues? Thank you in advance for advice.
June 9, 2013 at 11:24 pm #43314
demetriabeth – You should never, ever change your treatment protocol without talking to your doctor. Please call him/her. What works for one person may not for another. I wouldn’t assume this is a strange side effect necessarily. Have you tried getting another opinion??
June 28, 2013 at 2:02 pm #43548
I have chronic migraines for the last 2 years. It has been daily migraines from January 2013 to beginning of June. Topiramate has been able to stop them at least for the last 3 weeks. I have daily headaches but nothing comparable to what I had. My dosage is 200 mg daily. I had to stop working June 2012, went back to work part-time in September, stopped work in January 2013.
The dilemma that I currently have is I am having a real hard time focusing/concentrating and the decrease in my IQ. I feel that I need to make a choice between relief, a somewhat “normal” social life, mood swings vs isolation, being “more me” , PAIN. It seems there is no win-win situation. This is the first time that a medication has worked for me (have tried lots of them) but I can’t see myself ever being able to work while on this medication. My goal is to return to work. Does the concentration get better (I have been on it since January) as my body adapt to the medication? Does anyone have advice?
July 14, 2013 at 8:21 pm #43755
Hi – According to Drugs.com, bronchitis/pneumonia is a known adverse effect of Topiramate. It is unknown whether it is dose-dependent.
July 14, 2013 at 8:36 pm #43757
I also suffer from chronic migraines (x 15 year) and regularly suffer bouts of status migranosis so I know how you feel.
My personal experience with Topiramate is similar to yours, too. I doggedly took it for 2 years but in the end decided that I had to get off of it. The “dopomax” was turning me into someone I was not – a young person showing Alzheimer’s-like symptoms, in return for moderate pain relief. I could not work, could barely focus on daily tasks and activities and really had no life at 200 mg/day.
I suspect that in thoughtful pharmacological hands – using this drug at lower doses (to minimize dose-related side effects) in combination with other agents/modalities may prove effective. I cannot recommend a headache specialist with these skills, however. Perhaps someone else on the forum can do so…
September 18, 2013 at 2:17 pm #45228
I have been taking Topamax for 7+ years and am wondering if I’m just now having side effects. Recently, my doctor decided I needed to go to a hematologist due to my anemia getting steadily worse. Now, I’ve been anemic for years but apparently the red blood cell numbers are slowly declining. Talking to a pharmacist today, I just discovered that Topamax can cause anemia. Why wouldn’t my doctor make that connection? I’m astounded if that’s the root cause.
Has anyone else had this problem?
September 19, 2013 at 2:57 am #45238
Hi I’m new to the site! I am 40 and have been suffering from migraines since I was 4. I am so happy to have found this forum about the side effects of Topamax! I have been on it for about 6 years now however am only taking about 150mg per day which, compared to most on here, is quite a low dose. I do, however, take it in conjunction with Endep (amitriptyline) a drug that is primarily used to treat depression but is also used to prevent migraines and I’m taking about 100mg of that per day as well as the Topamax.
I must admit that recently I thought I might have been losing my marbles as I have been going through bouts of forgetfulness, mixing up peoples names, having total blanks when I am speaking to them etc. I also forget the name of very basic things.
I have also been experiencing the tingling / numbness in my fingers and toes and was starting to get concerned that it might be a sign of diabetes however recent bloodwork has ruled that out thankfully.
My hair also falls out a LOT – fortunately I have thick hair so I’m not bald – yet!
At no time have I given thought to the fact that it could be the Topamax but reading this forum it all make sense. It’s such a shame that we are replacing one problem with another, however as the Mum of 2 active kids I think I’d rather put up with forgetting someone’s name than having to be hospitalised or stay in bed for days with a migraine. I just wish someone could find a cure for these awful things especially as my 8 year old daughter has just started showing signs of migraine aura
September 20, 2013 at 8:37 pm #45255
Please forgive us for not getting to you sooner, it’s been a rough summer for many of us and sometimes we get a bit behind.
Topamax works wonders for some people with migraine, but others have a hard time with it. If you’ve been on the medication since January, including dose adjustments I would think by now your body has adjusted to it. Having said that, what dose did you start on? Topamax is one medication that needs to be tapered up (and down for that matter) very slowly. Ideally according to some migraine specialists, we should start Topamax at 25 mg. once a day at bedtime for the first week, 25 mg in the morning and 25 at bedtime in the second week and so on. The only problem is some of us have to start at a lower dose to avoid potential side effects. Let me share with you information on Topamax dosing; https://migraine.com/migraine-treatment/topamax/dosage/.
Let me know, and we’ll go from there, OK?
September 20, 2013 at 8:40 pm #45256
I love your screen name. But as I told Legouge, please forgive us for not getting to you sooner.
You are correct stating that “to minimize dose-related side effect” it’s important to slowly taper up on this medication. We have a link with dosage information you can see here; https://migraine.com/migraine-treatment/topamax/dosage/.
Have you seen our information on migraine specialists? Let me provide that information with you and see if you may be able to find one for yourself; https://migraine.com/blog/looking-for-a-migraine-specialist/.
Thanks for your patience,
September 20, 2013 at 8:44 pm #45258
All the symptoms you mention can be side effects of Topamax. For some of us it is worth the trade off, for others these side effects alter their lives too much to continue. It sounds like you are well versed on your medications, however, you may want to talk with your doctor about your dosage of Topamax. Maybe some adjustments can be made so you won’t experience some of these side effects but still have good migraine control.
I’m sorry to hear about your daughter’s migraines. Both my adult children have migraines too. Let me share our information with you on children and migraines; https://migraine.com/migraines-in-children-and-teens/.
I hope this helps,
September 21, 2013 at 7:17 am #45259
Hi, I always increase at this frequency. At the beginning they made me stop at 100 for a few months and then start again. I am the one that stopped at 200 because of the side effects. I have been at this dosage since the end of June. Only 2-3 migraines per month with a 10 which is a huge improvement headaches the other days. I have not returned to work since concentration/focus are just not there. I will work on a simple math equation, I am an accountant, after 10-15 min of concentration, the beginning of a migraine will begin and therefore I need to stop everything. I am very tired and go to bed. This happens every time I concentrate. Hence the dilemma….I want my old life back….normal life. However with topiramate I have a l life with my family…I can have supper with them that before I could never have, I can laugh and be with them that before I could not. It is a hard decision. Thank you for your support.
September 22, 2013 at 2:56 pm #45263
We all need to do what we need to do to maintain a certain quality of life.
Some of the lifestyle choices and changes we need to make may be for the long haul.
October 1, 2013 at 4:52 pm #45485
Okay so reading through… it’s like for every 6 bad comments, there’s one good comment, so I have NO idea what do think about this new drug.
My doctor, whom I call Dr. [edited for language] because he is a jerk, has just stuck me on Topamax after propranol gave me nightmares. HOnestly I think I would take nightmares over what I’ve been reading can happen.
Let me explain, I have episodic migraines which some with minor memory loss when i’m experiencing them, so I don’t usually remember the dates I have migraines, but it’s about twice a month I would say.
So far he has been giving me Sumatriptan 50mg as needed and let me tell you. It’s a miracle. [edited for language].
As an example, yesterday I was sick with a migraine, maybe a level 2-3 on the pain scale, but it made me so nauseous and I ended up heaving over the toilet. I was out of sumatriptan, but my mother, god bless her, found an extra tablet in the pocket of my jeans and I took it and BAM! I was fine in half and hour! So Sumatriptan is my miracle!
Anyways, I went to see Dr. today and he didn’t even talk to me for 15 minutes before he put me on Topamax… Is that normal? Or am I just overreacting? Didn’t even bring in my chart to ask me questions, or talk to me about how the sumatriptan was working.
So now i’m on Topamax and i’m supposed to start it tonight. He told me to see him in a month, but by the directions, by the time i’ll have seen him, the medicine will have run out by like 10 days. Should I talk to him about it? My mom knows I hate him so she’s making me a new appointment with a different doctor. Should I take the topomax until then? Or should I just wait? I mean if I don’t start it I don’t have to worry about missing a dose right?
Another question! Because of all the cognitive things I’ve read going on, should I wait to start it until I don’t have school? I mean I miss enough days with my migraines when I’m out of my meds, so should I wait to start it on a weekend so I can guage it? Is 2 days enough to gauge a reaction? Plus having work in the afternoons?
I am seriously confused and really scared about taking this medicine, please someone reply soon?!
October 2, 2013 at 8:41 pm #45521
Would you believe that less than 2% of readers actually respond to any post in an online forum like this? It’s true! In fact, if you stop and think about it, what would motivate you to post more, something that upset you, or something that was positive, but already mentioned by someone else? When something works well, there’s little to say but, “It helped me”. However, when something goes wrong, there are all kinds of details most people want to impart to others.
The fact is, most reviews of almost anything tend to be negative. Not always, but frequently to be sure.
I’m not going to try to sell you on topiramate. For me, well, I’m one of those really awful reviews you just read. BUT I have seen it change people’s lives too. The fact is, you can’t know how it will affect you until you try it. Remember, the one with the most to lose, gets to choose. It is your choice doll, and learning as much as you can about the pros and cons of it is a very super smart way to approach this decision.
Most patients have cognitive issues at some point with topiramate. To what extent you will have them, or IF you’ll have them, we can’t know by looking in a crystal ball. What we can say that is really important, is how vital it is to minimize as many side effects as possible by taking the medicine appropriately. That is where the mistakes usually occur.
I would encourage you to go back through all the topiramate posts and make a list of the very best suggestions you can find re: how to begin taking it, and how it should be prescribed by your doctor in the first place. If you are uncomfortable with what you learn, please, talk to your doctor about those worries. Usually the biggest key is to start extremely low and go up very, very slowly, and this is where doctors make most of their mistakes. But you know that now, so address it with your doctor.
The squeaky wheel gets the grease, and that is especially true with our doctors. Topiramate does have a very good track record of helping patients. That is likely why it was prescribed for you. It’s likely your doctor understood your desperation and wanted to get you some help asap. Once you are feeling better, many docs then feel that changes to the medicine are easier to make at that time, instead of putting the patient through months of agony with meds that are likely to take much more work, trial and error to get the same relief results. Does that sort of make sense? The thing is, if you are uncomfortable with his approach, then you need to do something to be heard.
October 27, 2013 at 5:34 pm #45959
Has anyone noticed any difference between Topamax, the actual brand, and topiramate the ‘generic’ version? I was put on topiramate, and I know people that are (or have been on) Topamax the brand itself, and they are dumbfounded at the horrible side effects it gave me.
October 27, 2013 at 6:58 pm #45968
Some people find Topamax the medication that gives them their life back. Others find the potential side effects too much and need to discontinue it. There isn’t supposed to be a difference in the active ingredient between the brand name medication and the generic form. However I have heard from patients that this is not the case. Let me share information on both the brand and generic version of Toapamx; https://migraine.com/migraine-treatment/topamax/generic/ and https://migraine.com/migraine-treatment/topamax/.
November 4, 2013 at 5:59 pm #46124
I just read this today, I don’t know what you’ve decided to do about taking the Topamax – it’s been a month… so you’ve made one. DEFINITELY get a new doctor. You need to have a relationship with you dr., not that you’re going to be BFFs but they need to at least be looking at your chart when they prescribe something for you. Considerations need to include allergies, other meds you’re one, etc.
Something that needs to be thought about with ANY med is how sensitive are you to meds in general? Example: If you were to go to the ER and they administer a pain med would 5mg of morphine knock you out or would it take 15mg? Some people are just generally more sensitive to meds – I’m not – my husband is. I can take a 5mg Valium and barely feel it, he can only take a quarter of a pill at a time, the entire pill will knock him out (and he’s twice my weight). Only you know your body. Keep a journal, don’t just write about migraines, write about side effects and mood, attitude and eating changes you notice. Look for long term changes – things that you may not notice on a day to day basis. Share these trends with your doctor. MAKE HIM LISTEN TO YOU. Most doctors work on the old 80/20 rule – 20% of their patients take up 80% of their time – you can’t be a wallflower and get great medical care. I’m not saying be annoying – but standing up for yourself. Talk to someone in your family (it sounds like your mom is great) and make sure they can be your advocate when you cannot speak for yourself (like when you have a bad migraine). Try to always have someone else at your appts with you. They can help you remember things that you may tune out (or forget later) and also help you remember things at the appt to tell the doctor. If you get nervous about going to the doctor – make a list of things you want to talk about before you go.
Back to meds – make sure your doctor (any and all doctors you see) know what other doctors have prescribed. This will prevent drug interactions – I cannot express how important this statement is. Do not rely on a pharmacy to catch this and tell you. Though it is good to stay with one pharmacy if possible so they may catch something the doctor overlooked! Finally, research any new medication a doctor is looking to put you on long term. Ask questions while you are in the office. I applaud you reaching out and asking questions here. Doctors are human and try to do their best – but they have off days, get in a rush, can get burnt out, etc. and they can make mistakes.
I know you’ve read a lot of Topamax horror stories here – but it helped me immensely. I began taking it when it was still in off-label use (it can formally be used for migraines now). I had migraines just about every day. I had some side effects and I’ve been through three doctors (the first retired – he was awesome, the second was more concerned with his vacation ski home than my appt, and the third has been awesome though it took a little time for me to click with him). The side effects were nothing compared to the pain. Stress reduction helps too (yoga, stretching, etc.) I hope this helps you in some small way, if nothing else than to know someone read your post. Good luck in your journey. Happy to correspond if you have questions.
November 4, 2013 at 6:03 pm #46127
Haven’t noticed a difference in side effects but the generic doesn’t seem to be quite as effective as brand.
November 4, 2013 at 10:40 pm #46133
WickedT – Thanks so much for letting us know about your experience.
December 21, 2013 at 2:02 pm #46924
I started taking topiramate on 31 October and went a total of 37 days without a breakthrough attack… This was the longest I’ve been since my migraines started back in 2011. I was over the moon! The side effects have been minimal – only really experiencing a slight upset tummy on the dose increase days! I have tingly hands and feet but not to any worrying extent.
Unfortunately… after the wonderful 37 day break I have now only just gone 13 days between breakthrough attacks, and am feeling pretty blue. My ‘normal’ migraine routine over the past few years has been between 7-10 days, so for me 13 days isn’t much of an improvement. (I know some of you will curse me for complaining about that – and I really do apologise).
Has anyone else found topiramate to work for a short period then stop? I’m currently on 100mg a day, 50mg am 50mg pm.
December 22, 2013 at 8:56 pm #46934
I guess it is possibly for Topamax to work short term, but typically if it’s going to work it will do so for a while. Here is information on Topamax; https://migraine.com/migraine-treatment/topamax/.
How are you doing on monitoring your triggers? I think sometimes when we find a medication that works for us we may become lax in our trigger management. I’m not suggesting YOU are, just that we can become complacent when we are feeling so good. Once we are feeling good our triggers can stack up and we can begin another ugly cycle. Let me share a bit of information on trigger management; https://migraine.com/blog/migraine-management-essential-trigger-management/.
You may also need a dose adjustment so a discussion with your doctor may be in order.
Keep us posted on how you are making out,
December 23, 2013 at 2:53 am #46937
Many thanks for your response. I suppose I may well have become lax with the whole trigger thing – it is very easy too when you think you’ve ‘found the answer’!
When I did experience the first breakthrough after 37 days I was very careful to go back to basics and ensure that I was very careful once again to avoid all possible triggers – I have no known triggers you see, so I just try to avoid the common ones.
I will certainly be making an appointment to see my doctor in the New Year to discuss the possibility of upping the dose a touch, to see if that helps. I will give it another month to see if this is just a slight blip. I have been under a little extra pressure at work recently and that obviously could play a part in adding to my trigger load.
I try to remain positive – all of you guys are a real inspiration to me! Thanks for listening
December 23, 2013 at 3:50 pm #46999
I’m glad to see you will be talking with your doctor soon, that’s always a good first step.
It may not be a bad idea to keep a very detailed migraine journal to find any migraines triggers (we all have them, just need to find them!) and patterns to our attacks. Using paper and pen is good, but with all the apps out there it is easier then ever to keep one. Let me share one with you from Migraine.com; https://migraine.com/migraine-meter/. If this one doesn’t fit your needs, there are many more out there.
The thing about a stressful period is we may not take care of ourselves as we should during these times. It’s important during this stressful time to stay hydrated, not skip meals, keep a regular sleep schedule and be kind to ourselves. Writing this reminds me to do these things myself! Thank you for asking!!
December 23, 2013 at 10:35 pm #47016
This particular forum thread is one of the most popular and informative on the entire site. There are so many tips and tricks to figuring out what to say to your doctor to get a useful conversation going. Most Migraine specialists love to see new patients come to them becaus the the majority of patients simply haven’t gotten good basic treatment. Simple things like appropriate dosing and titrating that is so frequently goofed up. Also patients not being made aware that topiramate almost always means you need to supplement certain vitamins that are depleted by the drug. When those vitamins go low, all kinds of strange things can happen, yet there is such an easy fix!
My suggestion is to go ahead and read this entire thread and take some notes to bring with you to your doctor for a conversation. Imagine if you could discover the answer so easily!
February 6, 2014 at 6:29 am #47791
I have been taking Topamax at 50mg twice a day for the last three years and though it did not stop the migraines made them less painful when they did occur. But after a huge increase in migraines in the last 9 months from approx 6-8 a year to weekly migraines my neurologist has suggested that as first call I up the dosage to 100mg twice a day which I upped 25mg a week until I got to the correct dose. But I am feeling awful I am now getting migraines 2-3 times a week I am feeling so weak and just cannot think straight. I am finding it very hard to function my doctor says that the Topamax should not have caused the increase in migraines but I am feeling much weaker since increasing the dose and have been unable to work, do you think it is advisable to continue as I am unable to see my neurologist for a few months and initially he said give it three months?
Any thoughts welcome
February 9, 2014 at 7:39 pm #47835
We can’t advise you what to do in this instance, except to tell you that it’s going to be really important for you to talk to your doctor about your questions. Are you seeing a Migraine specialist? https://migraine.com/blog/looking-for-a-migraine-specialist/ At the very least, I would encourage you to phone your current doctor and tell them what’s going on and ask for some advice, or an emergency appointment to the office… maybe in place of a cancelled appointment.
There has been a real surge in people with increased Migraine issues over the last couple of seasons, often due at least in part to weather triggers. Do you think you might have worsening Migraines do to uncontrolled triggers that have increased in severity… like possibly weather?
Topamax can have a lot of side effects, especially when increased too quickly. Doctors in the know will usually advise patients that, if they are having side effects, it’s likely that backing back down to where you’re comfortable, then increasing much more slowly. Side effects so often are just a result of inappropriate dosing when you’re starting or changing your dose. Have you had a chance to read this entire thread? There are a lot of good ideas and information here that may be very helpful in getting a good conversation started with your doctor.
February 10, 2014 at 4:59 am #47853
Thanks, I have in the last few days taken down the dose by 25mg as I have been feeling so bad, am waiting for an urgent appoint with my neurologist to see what he comes up with. I have read a lot of the posts but feel the more I read the more confused I get as to whether I should continue with it. As I feel that I have taken a stupid pill sometimes though migraines can make you feel like that too ! The weather issue I have not seen mentioned too much either, especially as I don’t see the light of day too much? Is this a gloomy factor?
February 11, 2014 at 10:52 pm #47891
Please be very careful and talk to your doctor before you change anything about your current management. Hopefully you’ll get in to that appointment quickly and this will blow over even faster. *fingers crossed* As to reading the posts, doing that will hopefully give you some clues as to the appropriate way to dose etc so you can have a good conversation with your doctor. It always boils down to making those choices together, but it’s tough if you don’t even know what your options are – yes?
All medicines come with side effects. Nobody gets them all, but we do sometimes get some of them. Usually one or two. Often – given time – the body adjusts and the side effects lessen or go away. This takes time and a lot of patience though. Again, good to talk to your doctor about.
Yes, there can be a gloom factor. Light is important to us and helps to run our bodies, just like anything else in our environment. It is also what builds vitamin D which has been shown to be important in our immune systems and controlling pain. Light deficiency can also trigger depression, a frequent comorbid condition that can exacerbate your Migraines.
I’m not sure I understood your question though… were you asking if weather could be an issue, or needing more weather related information? or just stating that you aren’t familiar with it?
February 19, 2014 at 11:33 am #48054
Hi all! I’ve recently started topamax…3 weeks now…and am taking 25 mg twice daily. My biggest issue is severe constipation. Unless I take 3stool softeners twice daily I can’t move my bowels. I go back to my neuro in a week, but was wondering if anyone else experienced this and how they dealt with it. Thanks.
February 22, 2014 at 5:03 pm #48109
Welcome to the discussion forum!! We are so happy you are here.
Constipation can be very problematic and uncomfortable. I experienced this first hand when I was taking methadone for chronic pain some years ago. UGH! After trying every stool softener and remedy out there I went ‘natural’. I originally found the Yakima Valley Fruit Paste recipe on a cancer lynx site, but am unable to find it right now. I did however, find the recipe in this link; http://naturalhealthtechniques.com/recipesconstipation_paste1_filesconstipation_paste1.htm. I found it best when I kept it in the freezer and had a tablespoon each evening. Some people like it on toast or a bagel, but for me it worked best frozen out of the freezer. The most important thing was the results were AMAZING! If you can’t find Senna tea leaf, use bags, that’s what I did.
I hope that helps. And great job on slow dose tapering with Topamax – that’s how it was intended to work best for migraine. And here is our information on Topamax for you; https://migraine.com/migraine-treatment/topamax/.
February 22, 2014 at 5:23 pm #48112
So… I’ve been given Topamax for a second try earlier this month. I took 25mg a night plus folic acid for 5 days and every day I woke up with a migraine. It was painful and annoying and I hated it.
I looked up side-effects and I couldn’t figure out why it was giving me headaches when that’s not even a side-effect of the medicine
So I contacted my doctor. Couldn’t get to see him but I went to see a Physician’s assistant and they put me on 50mg of Topamax and Gabapentin, I had to split the Topamax between a morning dose and a nightly dose and still I had migraines. Plus the medicine I use for pain I found I couldn’t use it as much as I wanted because it would lose it’s effectiveness. I could only take it up to 3 times a week max and only 2 pills max a day…
That would have left me with 4 days of a migraine. I can’t lay in bed all day sick with a migraine for 4 days out of the week. It’s not an option.
I’m not even a chronic migrainer. I have episodic migraines but according to my doctor i’m too close to shifting to chronic.
I don’t know what to do. I stopped taking the medicine. I just can’t handle it at the moment and I don’t know if I should find something different or just live with the pain. I know there may only be one preventive option left for me… Botox and I really hate needles plus it would take an arm and a leg to get my insurance to cover it as a medical expense and not a cosmetic one.
I honestly don’t know what to do. Anyone got any advice? I need to talk to my doctor I know but at the same time. I’m not sure if I should just start the medicine again. Any Advice?
February 24, 2014 at 12:16 pm #48129
I was on topamax for a few years and have recently been able to stop taking it with the help of my doctor. I’m just curious to find out if anyone has experienced side effects after going off of this medication. I am suddenly having trouble sleeping through the night. At first I was ecstatic about not being sleepy all day but now I wake up after 3 or 4 hours of sleep at night (which is just going to lead to a migraine!).
Also, how long did it take for the topamax side effects to go away after weaning off? I get a terrible ringing in my ears and my neurologist said that was a brand new problem accompanying my migraines?! I’m not sure about that since he also told me the tingling in my feet was probably due to early stages of diabetes (which I don’t have) and that problem has subsided since weaning down… along with others.
I’m sorry, I know I’m full of questions! Last one, I’ve read that 100mg to 200mg is the “normal” dosage for a migraine suffer but I was on 200mg twice a day for years. Is this also normal or a doctor giving me too high of a dose? (I have since left the original prescribing neurologist for the same problem with a different medication so I’m just curious).
Thank you for any help or information.
March 10, 2014 at 6:38 pm #48453
Hi All , I have been on Topamax since mid December last year , so just 3 months .I got the usual tingles and couldn’t find words in my head which I could cope with .Then I began to get really negative thoughts – like why bother living ? and started to feel really down .Then struggling on I thought it might be time to taper off , but last night after taking the generic I had a really bad experience .I suddenly forgot what I was doing .I had been in the middle of buying something on the web , but found myself unable to recall if I was selling the item or buying ! I lost the ability to send a message even! I burst out crying and called my husband over and explained I’d lost the plot ,and he took over .This morning ,I took a smaller dose and I am due to see my doctor soon .I always had my reservations about this drug but now I am convinced , it’s not for me .I’d rather have the migraines than lose sight of myself .It’s great if it works for you which I am sure for many , it does .But for me ,I just can’t wait to taper till there’s none in my system and the old ” me ” is back !
March 14, 2014 at 2:13 pm #48558
I wanted to share my personal experience with Topiramate (the generic version of Topamax). About 6 months ago, I was prescribed this medication from my neurologist, because the frequency and intensity of my migraines changed dramatically at the time. I’d been a sufferer for over a decade, but for some unknown reason I found myself in the midst of a terrible streak where I was getting debilitating migraines almost daily.
I was finally comfortable with the idea of trying a preventive medication, and Topiramte was it. I started off on a VERY low dosage — 25 mg — and IMMEDIATELY felt the side effects. I was completely and utterly exhausted, felt foggy, out of it and couldn’t focus. The severity of that eventually did subside, and it seemed to be helping my migraines, so I increased my dosage. My doctor kept increasing the dosage when I wasn’t getting 100% relief, in hopes that I’d find the “sweet spot” where the migraines weren’t as powerful and frequent.
I eventually got up to 150mg and saw some great results with my migraine condition. However, the side effects grew worse and worse. I lost about 10 lbs VERY QUICKLY – and I’m a small person to begin with. I had no appetite and so many foods just weren’t desirable to me. Because of the weight loss, loss of appetite and essentially the malnutrition that came with it, I started experiencing other related health problems. My menstrual cycle stopped, my hair began coming out in CLUMPS, and I had some stomach problems. I felt generally weak and unhealthy and knew that I wasn’t getting the proper nutrients.
On top of this, I realized just how much the medication had affected my personality and my work style. I felt very “ADD” – I couldn’t focus or often think of words, and sometimes just writing a simple email took me forever because I wasn’t able to really think about what I wanted to say and have it make sense. I felt spacey and out of it a lot of the time, and just didn’t feel like myself.
Eventually, I realized I couldn’t handle the side effects anymore. I had reached my breaking point when I wanted to cry each time I showered and had a large fistful of hair that came out, or when work got busy and I felt like my brain capacity wasn’t up to par to handle it.
I slowly weaned off (which my neurologist recommended) and it’s now been over a week of not being on it. The hair loss has DRAMATICALLY improved, and I already have my “normal” appetite back (which admittedly, is a bit scary – because I’m sure I’ll quickly gain back any weight I lost). More importantly, I feel clearer, smarter, and more like my old self again.
And luckily? So far I’m still doing OK with my migraines. I will say that I think the drug helped me to break the cycle I was in, but the side effects that came with it outweighed that for me.
Everyone is different, so I know my experience isn’t necessarily similar to one someone else will have – but I do see a lot of commonalities on this thread. I don’t regret going on Topiramate but I will say that I’m certainly happier being off of it.
March 14, 2014 at 4:15 pm #48561
To AARNONE , Could you say how long it took you to get weaned off ? I was on 100 mg a day ,and am on half that dose now .
thank you ,and thanks for your story.
March 14, 2014 at 4:28 pm #48563
There was no real science to it. I was up to 150mg so I was taking one pill (50 mg) in the morning, then 2 pills at night. At first I went down to 100mg for a couple of weeks (1 pill in the morning, 1 at night), then eventually down to just 1 pill at night. I did that for a couple of weeks and then eventually just stopped. So far I haven’t experienced any issues being off of it, and hopefully that continues. But I do think it’s important to slowly wean off so you don’t shock your body.
And you’re welcome Happy to share!
March 27, 2014 at 12:00 pm #48875
I have been on and off many medications for several years and I know that not all medications work for everyone. What works for one person, may not work for someone else. I just wanted to throw that out there like others have as well.
I started Topamax about a month ago. I am currently on 100 mg a day (50 mg 2x/day). I have noticed the side effects; tingling sensations in my fingers and face, “stupid/slow” feeling/concentration, weird metallic taste in my mouth (not for sure if this is a side effect, but it wasn’t “in my life before I took the med).
I can deal with the side effects if it decreases my headaches, but at this point, I’m still having daily headaches and no decrease in my migraines (at least 1 per week). I know it takes 8-12 weeks for the medication to get into my system, so I’m trying very patiently to wait for changes before contacting my doctor.
Anyone in a similar situation like me? Any advice would greatly be appreciated. It’s so hard to be patient when in pain.
April 1, 2014 at 12:34 am #48996
I’ve been taking topomax for 3 years and I started at the bottom at only 50mg a day and now im at 400mg. I still experience side effects from it, unfortunately. I experience confusion and weight loss. Its a bummer but I went from about 15 migraines a month to maybe 5-8. I also (Started October 2013) Get botox for them too. My life was miserable before. I also am not a pain killer person because they give me rebound headaches and make me so much worse. I always keep anti nausea pills in my purse (zofran) because my migraines always make me throw up & it makes it 10 times worse. Lastly, I take maxalt for onsets (sometimes helps for heavy headache.)
Something else that recently I’ve noticed that has helped is magnesium sulfate.
April 2, 2014 at 9:24 pm #49111
Here are some good suggestions for dealing with brain fog: https://migraine.com/blog/migraine-and-brain-fog-tips-and-tricks/. Also keep in mind that side effects tend to lessen after the first few months of a new drug.
Best wishes getting through this frustrating time. I understand how hard it is to be patient when you’re in pain.
April 3, 2014 at 12:47 pm #49181
Thank you Kerrie for keeping my head up and sharing that link.
2 pain free days in a row *knock on wood*
April 30, 2014 at 4:35 am #50152
I’m new on board and am so pleased to have found this place.
I have been prescribed Topamax 25 mg x2 and unfortunately have started to have some
nasty side effects ; exhaustion, strange thoughts and to top it all, headaches.
I saw my MD
yesterday ( I’ve only been taking 1 25 mg in the morning since Monday) and he suggested
that I should try for at least another two weeks. Anyway, after an entire day and a night of feeling
unwell, I have decided to stop the medication this morning.
Does anybody know how long it takes to get weaned off as I’m feeling so awful that I have
been signed off work for the whole week ?
Thank You !
April 30, 2014 at 9:52 am #50167
Hey California Girl-
Everyone is different and therefore will react differently to the meds, however I WOULD recommend staying on it for a longer period of time to really give it time to work. My first week on Topamax was pretty rough in terms of serious side effects (exhaustion, brain fog, etc) but that did subside after a few days/week.
I ended up taking myself off the medication after about 6 months on it, but I think it’s worth trying to see if it will work for you. Not a medical opinion, just a personal one.
April 30, 2014 at 9:59 am #50170
Thank you for your response. I forgot to say that I had taken the treatment for a whole month. However, I feel that I just cannot continue feeling so exhausted and having to go on with daily chores and work.
April 30, 2014 at 12:41 pm #50179
Hi California Girl , I took it a bit longer than you but I took the decision to quit when those strange thoughts went along the line of oh what’s the point in life ? I was so tired I couldn’t think straight.To answer your question -which I also asked when I was coming off – I lessened the dose for just 3 days then fully stopped altogether .I thought the sky would fall in but I felt no side effects , and felt better by the day .Just my opinion .
April 30, 2014 at 1:21 pm #50188
Thank you for your response. 3 days seems like a short time as you didn’t have any side effects. It seems that some people really do experience some difficult side effects with this medication.
I’m wondering how long it’s going to take before I feel less tired and ready to climb a mountain ?
Anyway, I’ve stopped for a whole day and I don’t have any withdrawal symptoms.
April 30, 2014 at 2:11 pm #50191
Stopping Topamax without tapering off it slowly can cause seizures, even in people who have never had seizures. It looks like you were taking 50 mg a day, so you should take 25 mg for a while before stopping completely. Please contact your doctor of pharmacist about how to stop taking the drug safely. Generally the recommendation is to reverse the schedule your doctor gave you a schedule to slowly increase your dose when you started the drug, but it’s best to check for sure.
April 30, 2014 at 3:19 pm #50203
I was taking 25mg for the last two days. I have just called the emergency helpline and have spoken to a doctor. He told me that it is fine to stop the medication and that I should not have an epileptic fit/seizure. He also said that it was best to stop the medication due to the serious side effects that I was experiencing.
Needless to say that my experience with this drug is mostly negative except for the fact that I was virtually migraine free during a whole month.
Thank you for your reply.
April 30, 2014 at 5:41 pm #50218
Hi C.Girl , I am glad you have found peace of mind by speaking to your doctor .I told mine after I had stopped and he wasn’t concerned .The side effects were so bad he said it was probably for the best .He didn’t mention the possibility of seizures ,and we just moved on to looking for a new , less problematic migraine relief .
Good luck .Hope you feel better soon ,
May 2, 2014 at 12:44 pm #50302
It’s been three days since I stopped the medication and I am feeling much better ; the exhaustion has subsided and those sad and strange thoughts have disappeared.
My body is feeling much better today. I really felt that I was being poisoned and was starting to get panicky !
I actually didn’t have any side effets or withdrawal symptoms once I stopped the medication.
I am going to have to find other treatment and am looking into ordering Cefaly for a trial period and I would also like to find another migraine specialist.
I have also ordered the book that someone mentioned on this site ; ‘Heal Your Headaches’.
May 2, 2014 at 10:42 pm #50314
This is an excellent thread where you will find important information re: side effects and how to minimize them. I would really encourage you to sit down and read it from the beginnins, because, among other important things, in this thread you’ll read how specialists have reminded us of the importance of titrating up very, very slowly. When unwanted side effects appear, that is usually the time they encourage their patients to back up and stick to a manageable dose until your body has a chance to get used to it. Side effects will happen, and for some they will be severe enough that they have no choice but to stop the medication. This is one of the most frequent mistakes that is made when preventive medications are started. Understanding how to take preventives correctly is key to success, otherwise I see patients giving up meds every day that might have potentially been helpful had they been used correctly from the beginning.
Often it starts with patients being connected with physicians who themselves don’t understand how best to start their patients on a preventive. If our doctors don’t understand, how can we expect patients to do it correctly? Thankfully there are Migraine and Headache specialists that ARE aware of the particulars of starting patients on their new preventives, and that’s why I urge most patients to – at least at some point – see a specialist to be sure they are receiving the best possible treatment so the chances they will eventually become chronic are lessened to the greatest degree.
Here is a link that can help you find a specialist nearest to you: https://migraine.com/blog/looking-for-a-migraine-specialist/
Good luck. I do hope you’re able to find something that will help you
June 25, 2014 at 5:34 pm #52512
After 3 1/2 months of being on Topamax, my neuro has taken me off of it. I almost hugged him when he said I could discontinue taking it.
I am now on waiting to be approved for Botox, and was taken off Topamax because of its ineffectiveness. I had to remain on the med for 3 months before my insurance would approve further treatment.
I am still trying to get back my memory and still suffer from migraines, but am now hopeful that a new treatment is in the horizon.
I encourage all of you to talk to your neurologists. Be persistent and make sure your doctors know how you feel. Maybe there is another treatment that is better suited for you. Please don’t give up on getting better. It may seem like giving up is the best option, but it is not! Despite the constant begging for my doctor to take me off the Topamax, he did make it clear that I had to stay on the medication and reassured me to keep being strong. I know it’s hard, but try to be patient.
**I’m not saying that Topamax should be stopped without your doctor’s permission or that there are better treatment options available for anyone. I’m just sharing my experience and trying to offer encouragement.
May 3, 2014 at 2:53 am #50353
I have had headaches for the past few days.
I used to me on topomax 50 mg day and night for seziures. My doctor reduced the dosage of my Tablets.
Will this headache be permanent?
I can deal with it! It hurts alot.
May 3, 2014 at 11:04 am #50359
I have had Migraine headaches most of my life. The past 2 years they increased to about every 2 days. I just started Topamax about 4 weeks ago. This past week, I have had no Migraine and feel great. So, it is looking like 25 mg a day would be a lifesaver for me, but one problem. I noticed yesterday that I have lost chunks of my hair on the back of my head. I already had fine thin hair so I cannot continue using this medication if this hair loss continues. Has anyone else had hair loss and was it only temporary for you?
June 6, 2014 at 1:04 am #51712
When I was first building up on Topamax, I would get tingly feet, fingers, mouth, tongue, etc, extreme fatigue, memory loss, and a little slurred speech and trailing off in my sentences. At one point my stomach started to hurt, and it hasn’t stopped since, so I have to force myself to eat. I’ve lost about 7 pounds because of this. I also can’t feel the carbonation in soda. I’m only really bothered by the loss of appetite, fatigue and brain fog. On 200mg the migraines are fine.
I recently went down to 100mg from 200mg (doctor told me) because of the tiredness and the brain fog (I couldn’t keep a conversation), but coincidentally I immediately felt the migraines come back like I never started Topamax.
June 7, 2014 at 8:18 pm #51835
I Have been on Topomax for years now. I’m 60 and always had migraines but they got Chronic after menopause. I have at least 15 a month, get Botox, take 150 mg of Topomax and 60 mg of Cymbalta. I abort with Imitrex shots, Treximent and flova. I work full time but have a very understanding boss, I work late or weekend to make sure everything is done when I can’t work. Over the last six months I have had pian on my right side, First my foot, then my knee, then severe in my neck and upper back, now it’s in my right hand. I went to my GP and had blood tests but I’m low and a few vitamins and dehydrated some but nothing else. Do you think it could be topamax? I don’t even think it works.
June 8, 2014 at 8:27 pm #51883
It’s possible that it could be the Topamax. What kind of pain is it? Topamax has a known side effect of a sensations of burning, tingling or prickling. A rather uncommon side effect can be leg pain as well. Check out this link for a full list of potential Topamax side effects.
Even though you have been on Topamax for years, it is very possible for side effects to show up years after starting the medication. I developed an odd side effect and it took a long time to discover that Topamax was the culprit. You should definitely talk to your doctor about it.
July 1, 2014 at 12:50 am #52666
I have been suffering with chronic migraines for 8 months, and today I started topiramate as my third attempt at a preventative drug treatment (I previously tried 2 beta blockers, propanolol and metoprolol, with no success). I have to admit that this discussion thread and another comment thread on this site scared me a bit about topiramate. However, I just did some research and found some reassurance from two sources that say many of the side effects can be controlled:
I am curious if any of you have tried these tips and how many of the folks with kidney stones were serious about staying hydrated while taking topiramate. Please note that I am not at all placing blame and am genuinely curious about this information.
I am going to give topiramate a shot, because I believe I have to go through the process of trying every possible treatment until I find the one that works. I am lucky to have a doctor who is very conservative with dosages, so I am hoping that by working my way up gradually and staying hydrated I can avoid major problems with this drug and give it a chance to work on the migraines without affecting me too much in other ways. I will let you guys know how it goes.
July 1, 2014 at 3:13 am #52669
Gmusic- thanks for sharing the web links. Both articles had some great information. They both referenced the need to start at a small dose and increase over a slow amount of time to see how your body reacts. Most of the time the side effects can be tolerable at one dose, but may increasing become annoying even life altering at large doses.
I personal had gone all the way up to 300mg at one point. Topamax was definitely helping with the severity of the Migraines, but the multiple side effects became too much to handle. I was taking other drugs to counteract the side effects of Topamax. At a certain point I had to decide for myself what was better for me- more meds or trying to get off Topamax. It was a painful process but I was able to substitute Topamax for Zonegran, which had similar efficacy.
Gmusic- everyone has their own story about Topamax, whether good or bad. You are smart to have done the research and know what to expect. Topamax has helped millions of Americans control their Migraines and it is definitely worth a shot if you are comfortable with it and your doctor thinks its the right next steps.
I definitely drank more water (never got kidney stones), ate smaller meals, had to keep a pad and paper with me at all times. They are good little tricks to know.
Let us know how it goes for you once you start it.
July 5, 2014 at 11:51 am #52750
I’ve been on Topamax for three weeks now, at. 75 mg currently going up to 100 mg next week. I developed this headache at the beginning of June that was not quite a migraine but was a cross between a cluster, chronic and ice pick. Symptoms would come on out of no where and last from 30 minutes to several hours and could be gone in five minutes and then come back with a quickness. I’ve had it for a month now. I did a steroid pack which seemed to help and the headache has tapered off and could be that the Topamax has helped but honestly I don’t know if I can handle the side effects of it!
Insomnia is crazy and I’m super emotional, feel depressed and very emotional. My fiancé was just diagnosed with ADD so I don’t know if it’s the Topamax or the up and down roller coaster of his emotions and mood swings or both. I’m going back to my neurologist next week to discuss my symptoms because I can’t keep feeling like a zombie and not sleeping and living off melatonin to get a good nights sleep. I don’t want a sleeping pill either!
July 6, 2014 at 2:52 pm #52761
Depression and mood changes are a very rare side effect of Topamax. In fact, it is sometimes used to help patients who are bipolar because of its anti-depressive qualities. Therefore, if you are having insomnia and depression- this is probably NOT the medication for you. Of course, you shouldn’t go off of it without talking to your doctor, but get in to see your doc as soon as you can!
July 11, 2014 at 5:09 pm #52927
I have had aura migraines off and on since I was young. They would happen maybe once a year or so and would last maybe 8 hours, I would get the aura, vomit and the have a bad headache and go to sleep and be fine the next day. As I go older I had a bad migraine in 2007 that last 7 days when I was under a lot of stress of finances and divorce. I went on topamax for 6 months got off no problem. Did not have another migraine until 11 months ago (which is 7 years later) when I was having a lot of stress in my life going on. Which is always the case when you have two children with disabilities and your a single mom. Anyways, The migraines started in September and would not go away I was in and out of the hospital for a month. They put me on a medicine call desipramine and it had horrible side effects for me. I now have anxiety and panic attacks which I think are now causing my migraines even more. SO then in January they put me on Topamax and the side effects made my vision a little off and my thinking a little slow for at least a few weeks every time they increase the dosage and then I get depressed I hate the way I feel on this medication. I still have a anxiety and increase of fears every day. So anyways the doctor said that we can try and take me off the Topamax 50mg. My kids need me and I need to have myself back as well. But I’m scared to get off. The neurologist has me going to a biofeedback starting in a few weeks, acupuncture. She said I can try supplements (One as vitamin B 2(riboflavin) or magnesium oxide or co enzyme (Q 10), butterbur.) but I’m not sure which is more likely to work. If I continue to have migraine she said we can try botox which I really don’t want to go that route. So I am trying meditation and exercise to try to help with releasing the stress from my body. Please no negative comments, I really need a positive outlook and advise on things right now.. I need to be strong for me and my children. Thank you so much for listening. What is the best way to come off of topamax?
July 12, 2014 at 11:18 am #52940
Reduce Topamax slowly – 25 mg per day a week at a time is the usual BUT consult with your physician.
I am surprised to read all the posts about so many people relying totally on Topamax for migraine relief when it is really a preventative medicine and takes time to find the right level.
You also need an ’emergency’ medicine until you find your optimum Topamaz dosage (if it works for you at all). My doctor gave me a generic Fioricet that has been my life saver. It works within 15 minutes – and I do have a routine I use to make sure I am having a real migraine & not just a bad headache. I am starting to control migraines instead of them controlling me.
Another note I rarely see about Topamax – I am taking mine all at night and none in the morning because it does make me sleepy and a little nauseous which doesn’t bother me at night. I’ve been going even slower than increasing the standard 25 mg/week. I’m at 75 mg now & will be going to 100 mg ( 2 – 50 mg pills) next week. (Pill splitters are in all pharmacies. If you ever plan to own a dog or cat, you’ll need one sooner or later anyway.)
I am 7 weeks into a new life and wish everyone the same good fortune.
Best of luck!
July 18, 2014 at 1:38 pm #53095
I agree with Mygrainetoo, that typically you go down by 25mg each week until you are off, but of course you’re doctor should help you figure that out. There are other medications similar to Topamax that you can try, but again talk to your doctor.
I’m impressed that you are trying meditation and exercise. For me that has been the biggest way to feel more in control of my headaches. Adding in the other supplements (butterbur, feverfew, etc), I would say that you should one for 4-6 weeks to see if it makes a difference. It can take your body a while to adjust. Definitely don’t try them all at the same time. Here’s some info on those supplements: https://migraine.com/migraine-treatment/natural-remedies/
August 10, 2014 at 6:31 pm #54438
Hi again Tstreete –
I take it all back. At 75 mg I started having major cognitive problems as in severe word retrieval disability (primarily nouns), difficulty in simple word association, generally slow processing, and taking about an hour to really ‘come to’ in the mornings. My big wake-up call came when I found myself struggling with some simple mental math which has always been a strength and that’s when I started titrating back down.
I’m only doing 1/2 a pill = 25 mg per day but I really am too old to be a guinea pig at 63. Seriously, I’ve never been so scared – I think I lost about 40 IQ points for a while. Maybe I will never be able to eat or drink anything outside of my own home if the Fioricet ever quits working, but I’m too frightened to ever start back increasing Topamax again.
August 11, 2014 at 8:39 am #54442
I’ve been on topamax for just over two years now. Before that I had tried a bunch of different preventatives, none which either worked well enough or which I could cope with. Beta blockers threw me into a zombie like state which I couldn’t get out of, mostly because my blood pressure is already naturally low. I was also still getting migraines, about one a month – which after reading this thread and knowing so much more now, I understand that it isn’t really that often compared to most sufferers… But the severity was unchanged. I typically get paraplegia, aura, uncontrollable vomiting end up in the ER usually more from the dehydration rather than the headache that follows. Unfortunately I don’t always respond to abortive drugs…. Max all used to work for me, but now only works sporadically.
When I first started topamax, the side effects hit me hard, even at 25mg but after a couple months, my body adjusted and it was heaven sent! I only ever get a rare migraine now and it is what I like to call a ‘normal’ one in which I’m out for the day, but can sleep it off at home. Throughout the last couple of years, the only noticeable ongoing side effects have been tingling in my hands and feet and difficulty recovering when I have had a chest infection. Strangely, for the first time in my life, I have been diagnosed with bronchial asthma, never being an asthma sufferer before.
Unfortunately now, I am considering coming off topamax. The last couple months have been filled with brain fog, extreme lethargy, disrupted sleep and strange dreams at night, word retrieval difficulty and poor memory. Sometimes I cant even form real sentences, my kids laugh at my ‘crazy talk’ but I am currently completing a Masters Degree in language which is becoming an increasing challenge. I have also started getting UTI’s which I have never had before either. The tingling in my hands and feet has become more intense and frequent, happening most of the day now. It is worse than when I first began taking topamax.
I worry a lot because topamax has worked so well for me. I don’t know what other options I should consider. I am only taking 50mg daily (I was up to 75mg and got no migraines, but was tired so dropped back to 50mg about a year ago). There seems to be a lot of people here on much larger doses than me. I never seem to cope well with medication. I am quite a small person. I am glad I have read this and understand I am not the only one who was doing fine and then got hit with side effects all of a sudden after a couple years.
August 12, 2014 at 1:49 pm #54484
After I got off Topamax, my doctor put me on Zonegran as a substitute. It didn’t work exactly as well as the Topamx, but it did help with less side effects. You may want to ask your doctor about it.
August 11, 2014 at 6:55 pm #54472
Since I have was last on here I have only had one migraine which I believed the trigger was stress related. I am still going to get off the topamax. I am currently at 50mg at night. I just cannot handle the constant anxiety, vision issues, hormone changes, depression, cognitive slowness and the feeling as if I have loss my soul and who I am. I have learned Meditation and deep breathing to help learn how to relax because the anxiety is so bad. I was never like this before the medicine. I have started bio feedback and I went to reflexology today and she has validated all that I am feeling inside. I am basically running on drenalin all day long, which is so not good. So the neurologist said to taper off one pill at a time and to start this Feverfew (Migreief)http://www.migrelief.com/ this product MigreLief it has two unique Feverfew sources, Magnesium from two sources and high dose, highly absorbable Riboflavin (Vitamin B-2) have all independently been shown to be of significant therapeutic benefit to chronic migraine sufferers. Has anyone heard of this product? Well next week I am going to taper off of the topamax and try this supplement and pray it works.
August 12, 2014 at 1:52 pm #54486
I have heard of Migrelief, but have not personally taken it. I have however, taken Feverfew and Magnesium at the same time- just not in the compounded form of Migralief. Every ingredient in there is well-known for helping Migraines, so it’s probably worth a try for you. Just make sure to let your doctor know of any side effects.
August 14, 2014 at 7:54 pm #54575
I am 50 years young, new to this thread and have had chronic daily headache going on 3+ years. I have tried it all – beta blockers, anti-depressants, acupuncture, massage, physical therapy, osteopathic medicine, Botox, Fioricet, Xanax, TENS, Migravent, Migrelief, BHRT, regular exercise, diet, you name it. Nothing works, nothing takes away these headaches and I have forgotten what it is like to feel “normal”.
I saw my headache neuro last night – she is young and open minded and wonderful. I talked to her about nerve stimulation implants and have scheduled the surgery for October 1st (not with her, however). In the meantime, she wants me to try Topamax. I hate drugs, but I am willing to try. Low dose at first, 12.5 mg to start. I always have side effects on this crap, but am hopeful maybe this is one I can tolerate. I refused it early on, because I am a software support specialist and need to be able to think to do my job, so the first sign of cognitive difficulties I am done with it.
I have a consult for nerve decompression surgery also, just to see if I am a candidate. At this time in my life, my headaches feel like someone has whacked me on the back of my head with a frying pan. They change, move around, come and go at random. There are seemingly no triggers and no way to find relief.
Karen from Arizona
August 14, 2014 at 9:20 pm #54591
The Migraine GirlModerator
I’m so pleased you have a good connection with your doctor and that she is open minded toward treatment options. Fingers crossed the Topamax gives you some migraine-free days. Please do keep us posted!
I’ll be thinking of you.
“The Migraine Girl”
September 10, 2014 at 6:13 pm #55318
Hi, everyone. Thank you for everyone’s responses.I am finally off of Topamax since Saturday and mentally feel great. However,the last two days I’ve been experiencing muscle pain and sciatica nerve pain I’m wondering if anybody else has experienced this since coming off topamax? It is amazing to feel like my self after 8 months of being on topamax.
September 10, 2014 at 6:21 pm #55321
Hi mygrainetoo, I feel you on the side effects I am so happy to be off of Topamax. Howeved, now I have nerve/sciatic pain coming off of it. hopefully it won’t last long. What did you end up doing?
September 10, 2014 at 6:56 pm #55322
Hi, I wanted to share my experience on topamax and getting off it. I started decreasing my topamax in December. I was on 200mg at that time and Had been on it for 1 year. It has been a real slow progress and juggling act. When I was on topamax, I was depressed, had a lot of anxiety and a lot of problems with my cognitive however the daily migraine that I had for over 7 months stopped. The only meds that could stop them. However, I started Botox in December (side effects of this med was too much for me) and started decreasing topamax….it was hell. My anxiety and depression increased drastically. This was because, for me, I was decreasing too fast which was 25mg per week and therefore I had to stay at the same dose for a couple months until the anxiety and depression subsided. I then resumed decreasing at a much slower rate for example 75mg, the next day 50mg and then back to 75mg, so on. I also experience insomnia during the first week when I would decrease the meds which would result in a migraine. I now take a sleeping pill the first week to help with this side effect. I would decrease when I felt good at the dose ie: sleeping was better. I am finally getting my life back and feel wonderful to be me again. Topamax was excellent for me however only in the short run since the side effects were too great for me.
September 10, 2014 at 7:14 pm #55327
Yes the key is reduce slowly. I was up to 50 mg at bedtime for 8 months. My doctor originally wanted me to go off one tablet a week. I decided to only go down a half of a 25 mg pill a week. I knew the horrible side effects that happen while I was increasing on to the medication. I was not about to have the same or feel worse coming off of it. I also tok feverfew everyday while coming off and I just began taking migrelief (herbal supplements) and so far I feel great minus the nerve and sciatica pain the last two days. No more anxiety or depression that the medicine causes.
September 11, 2014 at 2:21 pm #55347
I am so glad to hear you made it off the Dopamax…uh….Topamax but am sorry about the nerve pain. From the little bit of surfing I did on this, you might want to make sure that you didn’t experience some sort of damage (herniated disk, bone spur, etc.) while you were on the Topamax. Topamax is used for sciatic pain and it could have masked it so that you didn’t realize you had developed the problem.
Since I’ve had a few ninja migraines creep up that I could not trace back to known food/drink triggers, I keep taking 25 mg at night. I think it holds the migraines at bay a little until I determine that I need to take a Fioricet and that I’m not just having a terrible headache that I treat with aspirin coffee & a little time.
Don’t ignore that nerve pain!
October 2, 2014 at 12:06 pm #55909
I just wanted share my own experience on Topamax. (Generic, Topiramate.) I found that this drug did not work for me. I started on 25mg, then 50, then 75, and finally 100mg over the course of a month.
My migraines got much better for about two months after I reached my goal dosage. I had some side effects that were mild at first. My knees and hands tingled, and a few times my face tingled, which was a little disturbing. I noticed some minor hair loss, which I obviously didn’t like, but was willing to deal with if it meant getting rid of the constant pain.
I have some issues with losing words, having trouble concentrating, and being forgetful (Sometimes in weird and scary ways. Like forgetting the name of my friend’s child who I’ve known for ten years. Remembering I put water on the stove to boil as I’m climbing the stairs to get in the shower.) Most of the tingling went away after about a month, but the minor hair loss and cognitive issues didn’t stop.
After about three and a half months I started to have knee pain. It would last several days and then go away. If I left my legs bent for a long period of time, and then unbent them, the pain was terrible. I would actually cry out from the pain of unbending them. I tried ice, heat, ibuprofen, nothing seemed to help.
Around this time the migraines started to slowly creep back in.
About a month and a half ago, (about six months after starting the Topamax,) the knee pain returned and remained constant this time. It wasn’t quite as severe, but it wasn’t going away like it had before. A few weeks after that began, suddenly the hair loss became excessive. I was losing clumps of it in the shower. Every time I would brush my hair, I would have hair all over my clothes, hanging from the brush, and on my hands. I have fine blonde hair, so the loss is noticeable.
So now this is where I am: My migraines are now almost as bad as they were before I started the Topamax. And now I have constant knee pain, especially when I bend my legs, I have some frightening cognitive issues, and my hair is coming out in chunks. I decided it wasn’t worth it and I called the doctor yesterday. I’m currently weaning off of the Topamax.
I also lost only about 3 pounds without trying. So I didn’t experience much of the weight loss side effect. Even later when I was tracking my calories and exercising regularly while on the Topamax I still only lost an average amount of weight.
I just thought I would share my experience. I got a few good months with the Topamax, but this medication did not work for me long term. I’m not trying to scare anyone who is just starting this drug. I know that for many people Topamax is a miracle drug. I just wasn’t lucky enough to be one of them.
October 7, 2014 at 3:40 pm #56041
Topamax is definitely not for everyone. You’ve had some significant side effects and I don’t blame you at all for starting to wean off of it. I was on it for years until similar side effects started to occur.
After I weaned off, my doctor put me on Zonegran as a substitute that has less side effects. I’m not a doctor, but maybe you should ask yours about this as an alternative.
October 9, 2014 at 12:28 pm #56106
I’ll mention this to my neurologist. For now I’m going to see if my diet, sleep and exercise changes have made a significant impact on my migraines. I had been stuck in a downward spiral when I started the Topamax. Not feeling good, so I laid in bed. Not exercising for a week, then two weeks, then three. Lying in bed and not exercising made me depressed, so I ate unhealthy foods, making me gain weight, which made things even worse of course. Then the depression and the pain made it difficult to sleep, making it worse yet. I’m sure this is nothing new to anyone reading this!
Now I’m back to running three to five days a week, (When my knees or head aren’t hurting too much.), eating healthy, and sleeping eight hours almost every night. I’m REALLY hoping I can get away with just my abortive meds (I have a prescription for naratriptan 2.5mg) and just take Excedrin for the more minor pains. But if it goes back to how it was before, with 15 to 22 days a month of 5+ level migraines, I’m going to have to give daily medication another whirl. Thank you for the suggestion!
October 10, 2014 at 1:22 pm #56142
I feel like I am in the same downward spiral you described. I find it’s so important to get out and exercise, but when the Migraines are so intense for a long period of time it takes a long time to get back into the routine of exercise and eating healthy.
You should be really proud of the progress you made recently!
October 3, 2014 at 2:57 pm #55945
New here and I can’t believe I didn’t find this Awesome place before!
I have had headaches since I was 6 years old, chronic migraines since age 13. I have been trying to solve the riddle of my migraines ever since. Headaches are easy for me to control, migraines are not.
The list of medications I have tried for prevention, is 4 pages long single spaced. I have found out I am allergic to CCB and TAC swollen tounge and rash. Also I have MVP (mitral vavle prolapse), so triptans and DHE make me think I am having a heart attach.
So I think my doctors last ditch effort is topamax, when he asked if I had tried it I said yes, flipped through my pages, 5-29-03 to 8-30-2003, I got down to 94 Lbs. (I am 5′ 10″ at 117.4 Lbs. atm) and caused extreme depression. He said OK let’s try that again but take 1/4 of a pill to start.
Have you seen how small the 25mg pills are? I managed to cut up 3 without making them into pulp that’s 12 days.
I am terrified to start this, I really can’t afford to lose anymore weight and the depression to come with it.
I know my doc feels like he’s grasping at straws, I feel like I am too. Do I try it again?
Thanks for reading,
October 7, 2014 at 4:06 pm #56044
I’m so glad this site is helping you. Thanks for sharing your experience with Topamax.
You had some very severe symptoms when you tried it before. The weight loss is troubling. There are anti-depressants you could be on while trying the Topamax that may help, but it won’t necessarily help the weight loss.
Have you ever been to a Headache Specialist? This type of neurologist is best equipped to deal with your complicated issues. It is never a bad idea to get a second opinion if you don’t agree with your doctor’s plan. Here’s more info on finding a headache specialist:
Also you mentioned you have a prolapsed mitral valve. There has been some studies showing that heart defects can have a negative affect on Migraines, but it ususally affects those with a patent foraman ovale, so your condition may not directly affect your headaches, but its something to be aware of. Take a look at this article:
I hope some of this information is helpful and I wish you the best!
October 8, 2014 at 7:30 pm #56073
Thank you for responding. Yes I have been to two different headache clinics. The Diamond Headache Clinic in Chicago, the one I am currently at wants to treat me with topamax, botox and some kind of magnetic therapy, but I would have to stop taking all of my medication to be entered in the trial, including the medication I take for my fibromyalgia. The neurologist that sent me to the clinic I am at now said “you know as much if not more about migraines then I do, and I can’t help you.” Its nice to find an honest doctor!
Four to five days out of every week I wake up with a migraine or get a migraine at some point during the day. I know all of my triggers and avoid them like the plague, also my auras tell me everything I need to know about the migraine to come, how soon and how much medication I need to take. My mother and grandmother both had chronic migraines, my mom can use Imitrex . I even moved to southern California for three years to try to solve the riddle of my migraines. It didn’t work.
I am also a vegan and only drink water and have had this diet since I was 21 I am now 34. I also take supplements to replace the vitamins and minerals I am missing from not eating meat or dairy (I am lactose intolerant), it was an easy jump to be a vegan. All of my blood panels come back totally normal, minus the migraines, MVP, heart murmur, and fibro I am totally healthy. I have eco’s (echocardiogram) at least once a year if not every 3 to 6 months, I have not had the eco with bubble; to my knowledge this is the best test to tell if you have a small hole in your heart, or pfo, my doctor thinks the risk of the possible long term side effects of this type of Eco are not worth finding out if I have a hole, this test puts small amounts of air into your vain (scary, I know). I have had an Eco with contrast, it didn’t find anything new, and I just passed my stress Eco with flying colors! Also the highest blood pressure I have ever had is 90/58, so I have Hypotension. Only problem with this is that bata blockers (that help so many people with migraines) make me faint, and that doesn’t help.
I am on remeron for my depression, it has helped me for years. So an update on my use of topamax, I started it Friday night (10-3-14), dose about 6.25mg, I haven’t felt anymore depression then normal but I have lost 10 Lbs. I will be calling my doc today to see what he says, everything tastes metallic to me. I am not at all hungry, this is causing me to have headaches from not eating. I normally will eat six to eight small meals a day, I am down to two or three, and I have to force feed myself. I am also having uncontrolled twitching, is this a side effect too?
Do i have to be on topamax for two to three months to know if it is working? Will I stop losing weight at some point if I continue with the treatment? Last time (different doc) he took me off it right away.
Thank you again for reading. Any ideas/suggestions are greatly appreciated.
October 10, 2014 at 1:07 pm #56138
When your doctor tells you that you know more about your condition than he does, it’s time to find a new doctor! I know that can be a long and painful process, but clearly this guy isn’t giving you the attention you need.
I’m extremely concerned about the weight loss you’ve experienced in just a week. 6.25mg is a tiny dose of Topamax. Most people start at 25mg and go up to as high as 300mg. So at that small amount you shouldn’t be having these serious side effects yet. The side effects of metallic taste and twitching can occur, but at this low dose I’m surprised you’re already having these. If you haven’t already called your doc, do so right away. It really sounds like Topamax isn’t for you. Zonegran can be a good substitute for Topamax with less side effects, but clearly you should ask your doctor before changing anything.
How long has it been since you’ve been to Diamond? Maybe it’s worth seeing if you can go for just a check-up. They may be able to give you a treatment plan and you can follow-up regularly with your neurologist.
Best of luck to you and let us know if you have more questions,
October 9, 2014 at 6:25 pm #56129
I just found this website trying to see if there was anyone with similar side effects as me, and to my surprise there was! I’ve had migraines probably since I was around 13 or 14 and migraines have pretty much always run on the maternal side of the my family, so I was prepared to get them. Just this summer however I started to talk to my Doctor because Sumatripatin(Imitrex) on 100 mg did nothing for me when a migraine occurred and he prescribed topiramate (topamax). I started out on the standard 25 mg but when I still getting too many migraines so he upped my dose to 75 mg and I still get frequent migraines.
I didn’t really notice any of the side effects until recently (I’m a nursing student and life has been very chaotic lately) that I noticed my mental status was different. I was anxious most of the time and when I wasn’t I was depressed. My heart seemed to feel like it was going to beat out of my chest and I was having trouble remembering things, I’m exhausted all the time. I’ve never really been on any serious daily medication before so I had no clue what to look for and I had never really felt this way either. I also thought it was from school when I really looked at my situation I realized that I was acting different than before. So definitely take time to step back and analyze your mental health, because it can seek up on you.
Sadly like many others on this list I haven’t had any luck and I wasn’t the 75 mg dose very long but since it was effecting my mental status that much I just don’t care. I hope people won’t be scared off by these comments to try this drug but I do hope they’ll be prepared for symptoms in-case they happen.
October 10, 2014 at 1:19 pm #56141
I assume you’ve stopped using the Topamax now? I experienced the same mental fog when I was on a high dose of Topamax- it’s fairly common. Some people can deal with the side effects and others would rather go off it. It’s a personal decision, but it can be hard to figure out whether it’s doing more harm than good.
Good news is that there are so many other preventative medications that you can try. Here’s a great overview of other meds and therapies that might work for you with less side effects. Sadly, it’s a trial and error process, so you won’t know until you try.
What type of doctor are you seeing? Is it just your GP or are you with a neurologist? A neuro would understand these drugs and alternatives much better than your regular doctor. Also finding a neuro who is a Headache Specialist is the best type of care you can get.
Also you mentioned that Imitrex doesn’t work for you. There are other drugs (like Maxalt and Frova) that are in the same drug category that you could try. If none of these work, a drug called DHE may be the next thing to try. The link above discusses DHE.
Of course, I’m not a doctor, just wanted to give you a place to start your research. Be patient and find the best care you can!
October 10, 2014 at 2:35 pm #56153
My doctor is on vocation till the 15th and I have an appointment with him on that day, he is my PCP (on and off since I was 13 years old, I have moved a lot) he is not the doc that said I know more about migraines then him, the doc that said this is my neurologist :-/
I am not nuts about going back to diamond, and I don’t think they would take me back, I think they are afraid of me suing them? But I also don’t want to have to try all the meds that I know don’t work all over again, this is what they did to me last time. Reason they think I might sue them is because they gave me a very high dose of gabapentin, that after two weeks on the treatment I fainted, my boyfriend at the time got me awake with smelling salts, I was only speaking German and didn’t know who he or I was and punched him out of fear (we had been together for 3 and a half years at this time). I was 24 and I had lost all of my memory. He called the DHC asked how long it would take to get my memory back they said 72 hrs, and hung up on him, they did try to make another appointment, the next appointment I had got canceled some how, so I went back to my old Neurologist. My memory was not back in 72 hrs. Let’s just say there are things I still don’t remember from age 3 to 24, if I get a memory I have to ask my family and friends if its a real memory. So I know I will never remember the week before that happened. But I am sure you see why I have my reservations for going back to the DHC and really any headache clinic.
Yes I am very sensitive to medication, and scared to take anything that is in the same class of medications as gabapentin. I am on 12.5 mg of the topamax since last Saturday. But your right I should not be losing weight having the shakes, and have this metallic taste in my mouth with such a low dose.
I don’t know what to do, my allergies are:
silver and nickel (rash and swelling of the throat, found out with braces)
E-mycin – (Rash)
Diclofenac, Raglan (Swollen tongue and Rash)
Imitrex, Triptans, D.H.E. 45 (Rapid heartbeat, feels like a heartache)
Amitriptyline (TCA’s: swollen tongue, rash, itchy all over, I wanted to crawl out of my skin, had to go to the ER to be treated [this was helping me a lot, at a low dose, I am very sad])
Felodipine, (CCB’s: same as the Amitriptyline, but was not helping, got a swollen tongue in 3 days.)
So just got a call from my doc office the doc that’s on-call for him has never seen me so I would have to go in to be evaluated by her. My doc is not taking any calls while he is out of the office. The on call doc can’t see me till 10-14-2014, the day before I get to see my PCP…. Grrr!
I think I am going to have to stop this till I can see him, idk I could go to urgent care I guess? But I would leave there with a migraine from the lights (can anyone else hear halogen and fluorescent lights) and noise.
At 12.5 mg once a day for only about 7 days I can just stop taking it right?
Thank you again for reading!
PS: I feel like this took me way longer to type out then it should have, ohh there are the auras getting a migraine in 2hrs, going to be only an 8 though.
October 12, 2014 at 8:49 pm #56261
I hope you’re feeling well. Thanks for sharing all of that information because I’m sure there are others who react similarly to the same drugs. Since I am not a doctor, I can’t tell you whether or not you should stop taking the Topamax before your next visit. In cases like these, I’d say you should use your best judgment to decide if it’s doing more harm than good for you.
And what a crazy experience you had at Diamond! How awful. I’m glad you trust your PCP, but clearly your neurologist isn’t going to be able to give you much more help after making those comments. If you are not comfortable going back to Diamond (and I understand why!), I really encourage you to seek out a headache specialist. You have a lot of allergies and other conditions that a regular neurologist won’t have the time or resources to dedicate to you.
Let us know if we can be of any other help and let us know how your visit goes this week!
October 11, 2014 at 9:57 am #56202
Yes I stopped taking Topamax because I felt like a totally different person and how it was affecting my overall mood just was too much. I’m currently just talking to my GP but I’m probably going to ask to see a specialist because when I mentioned that Imitrex was doing anything to help and if I could have a different prescription he just told me to take aspirin or Tylenol with it. While taking it with aspirin does help taking that many aspirin is not very good for my health(I take 2 Anacin with Imitrex).
Thank you for the other medications and links! Because I wanted to start researching but wasn’t really sure to start because I’m sure there’s so much information and potential treatments.
November 19, 2014 at 10:39 pm #57606
I have been getting short consistent migraines a lot during the day especially after any sport or practice. Sometimes they get unbearable and my neurologist recommended Tropiramate. I’ve never really experienced the side effects of numbness and tingling in the hands and feet very strongly that is but it only been taking it for three weeks. I hear these things about people losing weight and if that happens that be okay with me!! Why does it make you lose weight? Also what was the stuff about kidney stones if there is a chance I’m going to get can you stones it will freak me out!!!! But how much weight do you think it will make me lose i’m pretty athletic I am mid way through high school and losing a few pounds would be great!
November 20, 2014 at 11:19 pm #57646
I found a great article about kidney stones and weight loss while on Topiramate (or Topamax).
It seems that Topamax increases the PH in your urine, which can collect in your body, eventually causing kidney stones. The best way to avoid this is to increase your water intake. In a study, those on Topamax had a 1.5% chance of getting kidney stones, while the general population has a .08% chance. So honestly, out of all the side effects you can have on Topamax, I would not be too concerned about kidney stones.
The same study showed that the average person loses 8.8 lbs on Topamax. However that should not be the driver for taking it. My weight personally didn’t change much while I was on it. There are a number of side effects that you can experience on this drug so be sure to write down any changes you have and talk to your doctor. For some, Topamax is a great drug in managing their Migraines.
Here’s some more info:
I hope it helps!
December 2, 2014 at 1:02 am #58011
I was taking topamax when I was a teenager at 100mg because they did not want me to take any narcotics and because elavil was not working. I remember when they had me on it then, they titrated me up to 100mg and I took it for about a year or two. I stopped taking it because I was going to join the military but that ended up falling through. Now, a few years later and with a new doctor across the country, I told my pcp that I used to be on topamax 100mg. He wrote me a script for it and I didn’t think anything of it. Admittedly, I was a little surprised. I thought he would have waited a month for my new neurologist to write a script for it, but other than that, I was okay with it. After re-reading up on topamax, I remembered that my old neurologist titrated me on it. I have been experiencing some severe paresthesia (tingling/numbness) to the point where it is interfering with my life almost worse than any migraine would. I got strep throat last week and was taking prednisone for 5 days, which counteracted the paresthesia, so today (2-3 days after finishing the prednisone) the paresthesia is affecting my hands, lips, face, and eyes. I am almost tempted to leave work. My job requires a lot of driving and it is very distracting. I will be calling my doctor tomorrow to let him know what is going on. Other than the paresthesia, I have never had a problem with topamax. When I took it 2-3 years ago, it was a lifesaver. I went from 12-15 headache days a month to 2-5 headache days. I try to take Excedrin as my rescue medication first, then maxalt as a last resort.
December 2, 2014 at 3:47 pm #58032
I was given Topamax for migraines. It started out beautifully. My migraines were essentially non-existent, I was losing weight (never a bad thing for most of us), and beer tasted like apples. Then, I had tingling in my hands, feet, and scalp. I could deal with that, ya know? It wasn’t the end of the world. Well, soon after that, my hair started to fall out. First a trickle, then a cascading waterfall of hair swirling down my shower drain. Then I started to lose my words, my train of thought (an important train to keep around).This obviously caused my GPA to slip, which is completely unacceptable. None of this compared to what happened next… it was terrifying. My mood changed. No… my entire personality flipped. I was mean. I was angry, bitter… I was awful.I hated the world and everything in it… I withdrew from family and friends, called into work all the time, never did homework… Then, I became fixated on dying. I thought it was the only way to make it all stop. Now, I realize that none of you know me from Jane, but that is not me. I love life. I love learning. I love people. It all came crashing to a head when I wound up in a psychiatric treatment facility the day after Christmas 2011. It gave me time to think away from the grind of daily life, and I realized this all started shortly after starting Topamax. The medication was a dream as far as migraines are concerned, but not worth my sanity. I spoke to my physician and my psychiatrist (the one I was required to see after obsessing over suicide). They both told me it was all in my head. I knew they were wrong, so I took to the internet, and imagine my surprise when I read the thousands of posts about people experiencing the same side effects. Needless to say, I stopped taking the medication. It has been two years, and while the hair loss as slowed (really, it just comes and goes), the cognitive affects are permanent, or at least they still have not been rectified. This is unacceptable. Why is this medication still on the market? It is unsafe and has lasting, detrimental side effects. I hope is that they either find a way to make this medication safer, or stop issuing it all together. For all of you suffering, you have my sympathies. For all of you that have taken it with nary a negative reaction, I am incredibly happy for you. For the drug company and doctors still trying to convince people that it is safe and all of these things are in the minds of the patients, shame on you.
Thanks for reading, and best wishes,
December 2, 2014 at 6:27 pm #58042
WOW! So sorry this happened to you. I can’t imagine going from a great student to being placed in a mental facility. That must have been awful. I’m so glad you took this into your hands and figured it out.
I personally had some of the same issues, but never to that degree. Topamax works great for some and can reek havoc for others. I think starting on a small dose and increasing slowly is the best approach and some doctors don’t do that.
Thanks for sharing your story!
December 2, 2014 at 6:44 pm #58047
Thank you, Katie. It was insane… literally. I am back in school, chugging along, but it is incredibly difficult. Where it took me an hour or two to complete a chapter, it is now taking a day, but it’s a start. The migraines are out of control, worse than they used to be, but I would rather have pain than feel like I have nothing. I am seeking other treatment options, such as acupuncture and vitamins, but any recommendations are always welcome!!
December 2, 2014 at 9:03 pm #58053
When I came off of Topamax, my doctor gave me Zonegran as a substitute which worked well. If you’re doctor is willing to try it, make sure you go up on the dose very slowly so you can be aware of any changes in your body.
I love that you are also exploring other options. Have you tried Botox?
If you’re more interested in natural options, this is a great starting point for research:
December 3, 2014 at 9:59 pm #58107
I just want to come in here with a bit of a warning. There’s no way I can read 97 posts, so I don’t know if this has been touched on or not, but topirimate can damage your kidneys. It’s not the usual case, and usually this doesn’t happen unless you have already underlying kidney issues, but in my case, Topamax, once prescribed at more than 200 mg., and then Trokendi (which is the same drug only time-suspended) at 200 mg., over several years, started to cause my kidney readings to become unstable. Eventually, my current migraine doctor had a nephrologist (kidney specialist) look at my results and he was completely confused. There was no sign that anything was wrong with me, yet I was dehydrated, certain kidney levels were up that shouldn’t be up, and the kidney filtration rate (which is a guess they make) put me at the beginning of chronic kidney disease!
My doctor kept asking me if I overuse NSAIDS (aspirin, ibuprofen, Alleve, etc) and I insisted that I don’t. He told me to increase my water intake. Yet, the next time they took readings, my kidneys were in worse shape. Then my regular doctor moved and I had to get a new one. She took a complete blood count and was shocked at the kidney numbers. But she suspected the topirimate. I did some digging on the Internet and found cases where patients were complaining that their doctors created kidney damage with Topamax. I even found an article on a kidney-care page that talked about Topamax increasing creatinine (one of the big indicators of trouble); I printed that out for my migraine doctor.
In the end, I was going to go off Trokendi anyway, but now my migraine doctor is in a hurry to do it. (25 mg. at a time.) He admits that my case is unusual, but it’s <b> in the literature </b>. So be careful out there.
Topamax was my wonder drug for many years. It eliminated my migraine 100% and made me feel great. The few side effects I had (tingling hands) went away quickly, and I had lots of energy. Then I suddenly needed more and more of it to keep the migraines away and that’s when all the trouble started. And then the memory problems began too. It’s really too bad. It has such good potential, but I have never met anyone who was able to stay on it for more than a couple years.
December 5, 2014 at 5:18 pm #58156
I am 29 and have suffered from migraines since I was a young child. They have increased and decreased in intensity over the years and in the past year, began increasing again to a couple a month…with daily headaches. I was prescribed amitriptaline in my late teens but did not like the way that medication made me feel so I struggled through the past ten years by popping Advil like candy until an ulcer stopped that this past year (big surprise). Honestly, I haven’t had the best Doctor’s until recently…they would just tell me to take Tylenol for the pain and that’s all they could do.
I’ve just seen a specialist for the first time in my life and he wants me to try Topamax. I’m starting out on 25mg for two weeks and increasing by 25mg until I find a dose that works. It’s day 3 and I feel awful. Blurred vision, dizziness, vertigo, pressure headache in my sinus, confused out-of-it feeling. I don’t like this – I really hope it gets better. I’ve also been prescribed Zomeg for my migraine attacks, and in the past 7 days, I’ve had to use 3 doses.
It’s daunting reading all of the negative side effects of this drug. I’m going to give it a couple weeks and if I’m still feeling this awful, talk to my Doctor about whether this is the right option for me. It feels like it could interfere with my work just as much as my headaches/migraines at this point.
December 7, 2014 at 12:34 pm #58203
I’m 24 and I have suffered from migraines since I was really young too and this year it finally got to a point that I needed to do something about it. My migraines were daily and interfering with my daily life, I was miserable and sounds very similar to what you have experienced over the past years with prescribed medications, the increasing/decreasing, etc.
I was on 25 mg, 2 x’s daily which did absolutely nothing for me, so they slowly increased mine to 150mg throughout the day. I had the same terrible side effects you are describing, which was scary because I am a doctoral and really rely on my focus and cognition. I was forgetting things such as appointments, people’s names that I’ve known for years, etc. I also use Imitrex for my “attack” prescription. In the beginning, I was taking my Imitrex probably about 3 times a week which was dangerous and which lead my doctor to up my topamax (which led to the increase in severity of my side effects… I also had side effects from the Imitrex until my migraines finally calmed down and my body started “accepting” the topamax.
The tingling/numbness, confusion, blurred vision, pressure headache (I call it a “migraine hangover”) did eventually go away, it did take some weeks… I do still get them when I’m feeling tired or very stressed. My doctor recommended drinking lots of water.. I’m a runner and practice hot yoga so I drink a lot of water to begin with so now I drink water like a camel. I actually took up yoga these past months with my migraines to help relieve stress and manage my pain.
I hope this helps!!!! I know I was scared and freaking out when I started topamax…and I still do get really scared sometimes.
December 5, 2014 at 8:54 pm #58158
Zephalia: from my experience, and I had years when I did well onTopamax, is to wait it out a bit, the tingling goes away, as do other side effects–usually. There are plenty of triptans out there and if you are saying Zomig is not helping there are many others to try. The ones that don’t give me side effects are Axert (going generic in 2015) and Relpax.
December 7, 2014 at 12:37 pm #58204
Ok, I was wondering if anyone has any suggestions for hairloss with topamax??? I read on the forum selenium and zinc?? Has that worked for anyone???? I used to take biotin as a teen and was thinking of trying that.
Also, has anyone tried prenatal vitamins with topamax for hairloss?
I have thin, fine hair to begin with and have discussed this problem of hair loss with my doctor. All my blood work came back fine and she did not have really any suggestions other than a multivitamin… which isn’t doing the trick since I already take that.
Help! I can’t keep losing my hair, it’s falling out in large chunks
December 10, 2014 at 1:21 pm #58323
Zinc, selenium and prenatal vitamins can help with the hair loss. I also used a shampoo/ conditioner that included biotin to help (Mill Creek Biotene H-24, you can find it on Amazon or at GNC).
But honestly if Topamax is the culprit for you, decreasing the dose or getting off of it all together is the only way to stop the hairloss. Detoxing from Topamax can be an extremely difficult task and should be done with instructions from your doctor.
When I finally got off Topamax, my headache specialist gave me Zonegran as a substitute, which has a lot less side effects. So talk to your doctor about it as an option.
December 10, 2014 at 1:21 pm #58326
Zinc, selenium and prenatal vitamins can help with the hair loss. I also used a shampoo/ conditioner that included biotin to help (Mill Creek Biotene H-24, you can find it on Amazon or at GNC).
But honestly if Topamax is the culprit for you, decreasing the dose or getting off of it all together is the only way to stop the hairloss. Detoxing from Topamax can be an extremely difficult task and should be done with instructions from your doctor.
When I finally got off Topamax, my headache specialist gave me Zonegran as a substitute, which has a lot less side effects. So talk to your doctor about it as an option.
December 7, 2014 at 1:26 pm #58207
Wow! This may solve a big mystery for me. My doctor has had me on 200 mg of Trokendi (which is just another form of Topamax) for quite a while and I was losing a lot of hair. I kept thinking it was from the new hormones my ob-gyn was giving me. Now I’m going off the Trokendi so I can be on a different med, but the hair loss continues. I’m at 75 mg. now and go down 25.mg. per week. If the topirimate is causing the hair loss, then I have something to look forward to! Also my kidney damage will reverse (see my earlier post on this).
Thanks for the biotin tip.
December 9, 2014 at 1:04 pm #58260
I did a lot of research on this topic and hair loss is real for Topamax. it explains a lot for me, that’s for sure. I was very bummed out to read that some people don’t get their hair growing back until three or four months after they have stopped the Topamax!
I talked to my stylist who had his own problems with hair loss (lol), and he said that if you are desperate, they can do work with plasma and lasers to stimulate hair growth. I was not that desperate. He also recommended pre-natal vitamins, and I also got the recommendation for 1000 mcg Biotin and 200 mcg Selenium daily from some other people. Plus you need to do any kind of toxic flush of you liver if you can. Health food stores have these kits.
My stylist is going to cut my bangs a certain way to disguise the hair loss at the very edge of my forehead (can’t really explain where it is), until the hair grows back.
BTW, he said using Rogaine is probably going too far in this case as the hair loss is temporary.
Hope this helps. I really can’t believe how damaging this drug is. I really loved it when it was working. I never had any idea it was going to cause all these problems.
December 10, 2014 at 3:12 pm #58335
Thank you for your response. It is helpful to hear that others have been as weary and scared as myself but had success on this medication. I drink about 6-8 glasses of water a day as it is now so I think that will be sufficient.
Thank you for your advice. I do plan to wait things out a bit and see how my body responds. It’s just scary having all these crazy side effects that make me feel far worse in general. The Zomig is what I take when I’m having an attack as an abortive medication and that is working for me. However, the frequency I’ve been needing it has been getting rather high and so that’s part of the reason I’m on Topamax now.
A couple of days ago I had quite intense joint pain in my lower body as well as what I can only compare to terrible menstrual pain. Since then, I have had brief periods of lower back pain. Additionally, the vertigo type feeling continues which causes me nausea – especially when focusing on the computer which I unfortunately do for work all day. I have noticed a fairly big change in my mood as well which is kind of depressed like. Not as cheery and sort of just ‘blah’.
I had to write an email to my employer yesterday explaining my change in attitude over the past week as my work responsibilities have doubled in the past week and I don’t want them thinking my behaviour is a result of the workload. I’m really hoping that these side effects go away sooner rather than later – I haven’t even upped my dosage yet.
December 10, 2014 at 8:49 pm #58344
Zephalia: I hope I’m not sounding like a bg know-it-all here, but getting nauseated and depressed are both side effects of migraines. Have you noticed this before when migraines are coming on? It could be you are feeling the side effects of migraines that are being aborted by Topamax. While I’m no fan of the drug (after seeing how much harm it can cause), there is no doubt that it’s very effective. When I finally found a dose that was comfortable for me, and the side effects went away, I had 100% migraine protection. You can imagine how hard it is to give that up.
Just something to think about.
Also, I know what Zomig is for. Many people have two triptans on hand, so we don’t have to handle the same side effects all the time. They say you can on take them twice a week, but I’ve had health care people tell me that three times a week now and then is not so bad. But I’m not your doctor!
December 12, 2014 at 5:02 pm #58498
Nausea and depression are both side effects of migraines? 25 years of my life spent in the complete dark. Thank you for enlightening me!
I’m sorry but I came to this forum to connect with other people who are experiencing the same side effects from Topamax that I currently am because it’s scary and new to me but I’m sticking with it because I think in the end it can really help me.
If I want someone to self diagnose, speculate or tell me what they think is causing me this and that…I’ll go to my family, my co-workers or anyone else around me in my life who has been treating me that way since I was a child. I thought this was an environment with people who had been through that already and understood it’s not helpful…guess I was wrong?
December 12, 2014 at 6:33 pm #58500
Did I say something wrong? Because it was not my intention to come off as if I were self diagnosing you. I’m being sympathetic, because I spent many years on Topamax and know how scary it feels. Wat did I say that sounded high-handed?
Also, many of us have suffered nausea and depression with migraines. This is not outlandish at all. As matter of fact many people get Rxs of Compazine (anti-nausea drug) right along with triptans and preventatives. In many causes people with migraines actually feel better if they do vomit. (I ever get to that point though).
Depression is so common because of the dip in serotonin that we experience. Some people go on anti-depressants to battle migraines,
I’m so terribly sorry that you took my tone to be anything other than helpful. I really hope you do well on Topamax. And with that, I’ll respectfully withdraw from this conversation.
December 17, 2014 at 10:27 pm #58638
If I had a time machine, I would use it to go back to WWII and force feed Hitler topamax. IMO, it would be justice for all the evil he’s perpetrated.
But I’m glad its working for some folks. We are all different. I happen to be very sensitive to medications. I only lasted for one dose. When another doctor suggested I stick with it, I cried and yelled at him. I blame the topa-hitler.
January 24, 2015 at 2:18 pm #59958
Hi I am new to this. I started taking topamax in October after beginning to get migraine with aura for the first time in years. Thank god mine stopped in my late thirties after a hysterectomy. Only had infrequently. They came back in a rush and I had MRI and a tumor was found. I am having surgery in February. Strangely the doctors all say the tumor has nothing to do with the return of the auras and migraine so I am going with a gift from god so I would find the pituitary tumor?.. Anyway I am on 100mg of topamax daily and my question to the moderator is I am worried that I will not receive the medication in the hospital as soon as I need it and will have a sudden withdrawal! Won’t this be bad? We all know how slow they are in hospital to get you your regular daily meds! I will get it by the time I am ready to go home! Meanwhile I will be having god knows what reaction on top on brain surgery? Am I worried for nothing or should I sneak my topamax in? Thanks, louise
January 25, 2015 at 8:58 pm #59986
Do you have a loved one who will be visiting you every day? You are going to be so out of it from the surgery that you could easily forget if the nurse has or has not given you your regular meds. If you have a trusted person to be your advocate, I would give your Topamax to that person who would check in with the nurse everyday and then have your meds as a back-up. But make sure to tell the nurse or doc (or have your loved one tell them) if you take Topamax on your own. I have no idea if it could react badly with other meds they are giving you. So it’s always good to be honest.
Good luck with your surgery!
January 26, 2015 at 9:01 pm #60156
Hi Katie, that’s a very good idea, I didn’t consider that I will be out of it for awhile! You are so right. Thanks for for help and that good wishes. So I guess that means you do think it would be bad to stop abruptly. Thank you. Louise
January 26, 2015 at 9:08 pm #60157
Yes, I do think its a bad idea to stop taking it abruptly. I’ve personally tapered off Topamax over a period of 2 months and that was awful, so going cold turkey could be very painful. Off course, your neurosurgeon may have a different opinion considering the surgery you’ll be going through. I have no idea how the two issues would work together. Definitely talk about it with the doc.
Please let us know how the surgery went!
March 1, 2015 at 9:10 pm #61302
I’ve switched to a new doctor in early Fall, and he changed one of my meds from Topamax to Trokendi. It’s the same medication, but it’s time released. The side effects are considerably less severe. I’m taking 100mg daily. One drawback is the price. Without insurance a 3 month prescription was over $1,000. With my insurance it was $60. Hopefully in time there will be a generic.
I didn’t realize this med caused hair loss. Here I thought I was experiencing hair loss because of my age. I purchased a product like Rogaine – but for women. It’s helped a little bit.
March 2, 2015 at 3:22 pm #61315
You may want to try goodrx.com. You can search for Trokendi and it will tell you the pharmacies in your area and what they charge. The pharmacy your using now may not have the best price in town.
Also if you’re experiencing hair loss, Rogaine is great. Also try taking zinc and selenium supplements (in the vitamin section). That helps with hair regrowth. Some people even say that taking pregnancy vitamins helps too.
March 11, 2015 at 6:08 pm #61579
I take 100 mg of topamax twice a day. I have been taking it for about a year and a half now and I’m not so sure it’s working. Either that or it’s not working like I think it should, if that makes since.
I do not have the daily headaches any more but my migraines have become chronic and seem to be more severe than before I took topamax. The headaches were really bad but I could still function at a lower capacity. The migraines limit me and I can’t function even at a lower capacity.
So, before topamax – horrible daily headaches but could function at lower capacity and fewer migraines.
After topamax – chronic migraines with very limited to no capacity to function and few to no headaches.
I can’t decide if I am better off; staying on or getting off topamax?
March 17, 2015 at 8:22 am #61695
I’ve been trying to read the comments on Topamax to find any references to strange side-effects.
I was using Topamax as a preventative for my migraines for about one year. I had the weight loss (10 lbs), the foggy brain, the weird dreams that seemed so real, and waking each morning with music in my head – not oldies or favs or the last tune I heard the night before, but Top Twenties on VH1. The doc moved me to 100 mg and I started having back pain and seriously sleeoless nights, so I quit the Topamax..
Anyway, I weened off the Topamax in December 2014. I’m now using an herbal (?) called Petadolex. So far, so good.
My question – anyone experiencing or having experienced hair loss as the result of taking Topamax.
As I speak I have lost about half the hair on my head. Not in patches like alopecia aerata, but seriously thinned out throughout my head. I’ve always had a really nice head of hair and, call it vanity, but I’m upset with the significance of the loss and would like to find the cause.
Anyone got any ideas? The other possibility – could it be the herbal Petadolex??? If it is, I need to find something else for migraine prevention.
March 17, 2015 at 8:30 am #61698
I just saw Elaine’s post. DUH! Topamax causes hair loss??? HELP!
Does the loss reverse after stopping the med? I’m off it more than 3 months and the hair loss is getting worse. What can I expect, is the hair loss permanent?
I stopped the Topamax because, in all the years that I have suffered debilitating pain from migraines, they may have knocked me senseless, but they did not leave me with damaged organs or balding hair.
Any advice would be greatly appreciated.
March 17, 2015 at 9:45 am #61702
I also suffered hair loss from Topamax. It’s obviously still in your system. I followed these tips from previous posters here: take biotin ( at least 3,000 mcg. a day), selenium, and zinc. Also take pre-natal vitamins to get your new sprouting hair to grow faster. All this worked for me. They also have biotin shampoo. One of the worst things was I was losing my eyelashes and eyebrows. There is a wonderful product that they sell at CVS called Rapidlash. It takes about four weeks to work, but wow, it works like crazy. I order mine from CVS.com and they are having a 30% off sale today. I don’t know if Rapidlash is in stock. There are more expensive versions of this stuff, but why buy them?
Also drink lots of water to get that Topamax out and take a liver supplement, because that organ is storing all that old, toxic Topamax!
By the way, Petradolex is herbal butterbur. I’m taking it now and it doesn’t seem to help.
Good luck getting your hair back!
March 17, 2015 at 5:45 pm #61714
My PCP prescribed me Topiramate and butterbur a month ago. All it has really done is made my migraines very consistent – one every Sunday and Monday afternoon. They’re very light, but certainly no less frequent (perhaps a bit MORE frequent). I usually end up not taking anything and then they get really bad by the end of the day, or I take half a Sumatriptan and they go right away.
I’m trying to decide whether to give it another month, when I have a follow-up, or just quit now. I’m not losing any hair but I’m tired of being doped up and anxious all the time.
March 19, 2015 at 7:33 pm #61746
I was just recently prescribed the generic form of Topamax 2 days ago (25 mg) in combination with phentermine to facilitate weight loss. I have suffered from moderate migraines for about the past 20 years–have been on Effexor XR 75 mg since my diagnosis of migraines. Usually get my bad migraines around my menstrual cycle–usually Imitrex will handle it and they’ve never been to the point of incapacitation thankfully.
Took my first dose of generic Topamax at night–woke up at about 5am that morning with an intense throbbing at the back of my head on the left side of my head that wrapped up around to behind my eye–my usual “spot” for migraines. Took Advil and managed to get back to sleep. Went to work and the pain shifted from left side of head to right side and only got worse throughout the course of the day. Possibly one of the worst migraines I have had in the 20 years since my diagnosis! Promptly went home and took an Imitrex which did help. Took another Topamax that night as well.
Day Two: Woke up again with mild migraine on right side. Was not as bad as the day before at work (meaning I didn’t want to kill myself). But still had to come home and massage neck and take another Imitrex (I know about rebound headaches, so could be it…).
My question is this: Is it just coincidental that I get one of the worst migraines I’ve ever had the morning after my first dose of a drug that is supposed to prevent migraines? I will say that it is also “that time of the month.” I am not one of those people who have horrible migraines everyday–I can go months without one and when I do get one, they are not so bad. This one was a doozy however. I’m just a big believer of cause and effect!
I really would like to stay on Topamax as I feel that it will aid in my attempts at weight loss (need to lose about 60 pounds).
Any advice? Can Topamax CAUSE migraines? Should I continue and let my body adjust to the drug? Thanks in advance!
March 19, 2015 at 9:55 pm #61750
I was on Topamax (and then Trokendi, which is the XR version) for several years. It can take the body quite some time to get used to Topamax, so you shouldn’t get too discouraged this quickly. It’s best if you start low (I started at 25mg. and went up from there) and then slowly adjust to a point where you don’t get migraines. This said, Topamax is a very potent drug and you should be aware of the significant risks that it poses. Memory loss is probably one of the biggest problems with the drug (some doctors privately call it “Dopamax” and I’m not kidding!). Many people have hair loss. It can also cause kidney stones. In my case, it was the only migraine preventative I ever took that totally eradicated my migraines. It was my wonder drug until the memory loss, the hair loss and finally, kidney damage!
I have been off the toprimate for two months now and my kidneys have finally resumed normal function, but not before scaring me and my doctor out of our collective wits.
Yes, it does work for weight loss and I doubt you need the other drug to help. However, for someone who only gets migraines occasionally, I would just suggest you talk again to your doctor about this drug strategy. I’m just a layperson and migraine sufferer, not any kind of expert, but even for my chronic daily migraines, I would never risk Topamax again, now matter how well it works.
I hope I didn’t scare you, but I really think it’s important to realize just how toxic some of these drugs can be.
April 11, 2015 at 12:46 am #62241
I have been on Topamax for about 4 months now. I am up to 100mg. It was working really well, basic side effects, some tingling in my feet, fizzy drinks taste awful, some tongue tie when talking, but I am noticing it may be wearing off a bit. Is that possible after this short a period of time? How high of a dose can you safely go? Sadly I have not noticed any weight loss so far
April 16, 2015 at 11:20 am #62343
The general rule of thumb is to be on a new medication for 3 months before stopping it or changing dosage. 100mg is an average dose, however I know patients who have gone up to between 200-300mg. At higher doses, you’ll definitely start to notice more side effects.
The fact that you are currently experiencing some more severe Migraines two months into Topamax could be tied to a variety of things. Maybe the change in weather, maybe menses, maybe extra stress or it could mean that it’s not helping you. You could talk to your doctor about increasing the dose by 25mg to see if that helps the slump you’re in now.
Just suggestions, definitely talk to your doctor.
April 13, 2015 at 3:55 pm #62289
I have been on Topamax since September and went to 100mg pretty quickly. I noticed the tingly hands/feet and almost immediate appetite loss and inability to taste carbonation. The combination of appetite suppression and not drinking sodas caused quite a bit of weight loss for me. It seemed to be working pretty well controlling my headaches.
However, I have recently begun to step back down my dosage as I have noticed some seriously unwanted sexual side-effects that have made life almost more uncomfortable than the migraines. I’m in my early/mid 30s and not prepared to give up sex, I’d rather just take Imitrex a little more often Anyone know of any alternatives to Topamax that I can ask about?
April 16, 2015 at 11:14 am #62341
Zonegran is often used as a substitute for Topamax. It has less side effects, but may not be as effective. Sometimes increasing the dosage will help that out. But you really need to be careful about going off Topamax and adding in Zonegran. Even at 100mg, your body is used to it. It can be very painful for a short period of time while your body adjusts to the change. Most doctors reccommend stepping down 25mg at a time. But definitely discuss it with your doctor.
August 4, 2015 at 9:52 pm #66152
hello, i’m new to the forum and just started reading the numerous posts on this topic. i’m happy to see so many.
i was just prescribed topamax to start tonight. i have taken it before, but it was about ten years ago or longer. the only side effect i remember is things tasting different/bad. i couldn’t drink soda or beer because i couldn’t taste the carbonation any longer. i don’t think i took it long, i wasn’t that compliant when i was that young.
for the last several years i’ve been able to get my migraine days down to about 5-8 a month. quitting birth control really helped a lot. i’ve had migraines as long as i can remember, and i’ve been on hormonal birth control almost half my life.
this summer i decided to try a pill again–beyaz. i had migraines for three weeks so i stopped taking it. since i started in june i’ve had chronic migraines. 33 headache days since the second week of june. i stopped the pill after three weeks.
i also started taking magnesium citrate 500mg/day. i landed in urgent care after the three weeks spell (with a BP of 186/104) and the DNP i saw suggested it. so far i don’t think it has helped. i’m really hoping the topamax does the job. i’m going back to school and i need my brain to work.
August 6, 2015 at 2:19 pm #66203
It definitely sounds like being on the pill messes with your Migraines. There are some other birth control options that don’t have such a high amount of hormones in them. There’s the copper IUD (no hormones) and the Mirena IUD (some hormones) or the Depo shot or patch. Talk to your neurologist AND your gynocologist about other options. Women who have Migraines with aura have a higher chance of stroke and the type of birth control you use can increase this.
Also, you should read up on Topamax. Some people do very well with it, while others have bad side effects. I’m hoping your doctor started you on a low dose (like 25 or 50mg) and suggested tapering up on the med. IF you start to have side effects like tingly fingers or trouble finding words, you can always decrease Topamax to a level that you are comfortable with (and your doc should agree too).
I hope Topamax does the trick. And I’m glad you found us!
August 12, 2015 at 1:21 pm #66371
thank you for your reply, Katie. I appreciate it. i’m glad i found this forum, too. i’ve suffered for so long and have felt that i don’t have anyone to talk to who really understands.
i have tried many forms of hormonal birth control. i also have endometriosis and did depot for years (starting at 16) because of my migraines. it’s a long story which led to me bleeding for six months, but it’s not an option for me any longer. we are thinking of ttc after i finish nursing school at the end of the year so i’m holding of until after kids for an IUD and hoping the copper IUD will be a good fit. being off hormones has been the best for my head, just not the best for my endo. it’s a balancing act. i really need this last term of nursing school to be as headache free as possible.
i have done a lot of reading on topamax, and being a nursing student i’ve also had the opportunity to talk to medical professionals about it. i am doing a taper starting with 25 mg at night, now 25 in the am and pm. my dr. advised me to continue to increase until i start to feel well, the smaller the dose the better/less side effects. i drink a lot of water already, but i’ve found the topamax makes my mouth dry. i don’t want a kidney stone! so i’ll keep myself well hydrated.
today is the 12th of august and i’ve already had ten headache days this month. that is too much. i can’t do this. i need a break. i feel so guilty about my messy house, my lack of motivation, missing work. i go back to school in eight days. something’s got to give. i don’t know what to do. i took two triptans in two hours last night hoping it would help break the cycle.
August 18, 2015 at 5:53 pm #66536
Sorry I wasn’t able to respond right away. I hope your Migraine has improved by now. If not, don’t be afraid to go to the ER where they can give you steroids and anti-inflammatory drugs to help break the cycle. It sometimes helps if you have your doctor either write you a prescription of what they should do for you in the ER or if he can call ahead of your arrival.
I know exactly how you feel. I’m sure you’re exhausted, feeling guilty and hopeless. Try to find ways of dealing with the pain that might make you feel more in control. Do you feel like you need a nap once a day? If you can do it, do it! Ever thought about yoga or meditation? Make life a little easier and tell your nursing school professors what you’re going through. I would think out of anyone, they should be supportive and make accommodations for you.
You’re strong and will figure a way to get through this!
August 18, 2015 at 8:59 pm #66542
Thank you again for your reply, Katie.
I ended up being admitted to the hospital after the headache continued to increase in severity and i even experienced some symptoms (flashing lights in my right eye) which i had never experienced before. It had also been years since i vomited so much from a migraine, but they had given me toradol that didn’t touch it at all. the next step was IV steroids, as you mentioned. it was a first for me but it seems to have worked well because i’ve been HA free for almost three full days now. thats a first in over two months.
the bummer is that i can’t get in to see a neurologist until around Thanksgiving. they did go ahead and increase my nortriptyline, too (50-75mg). i’ve taken that one for years.
they bumped up the topamax WAY to fast while i was in the hospital to 100mg at night and in the AM. i think it started causing brain zaps. they are like the feeling i often get before a migraine begins, so at first i kept thinking that a HA was going to kick in but so far so good–although the brain zaps continue even though i lowered the dose when i got home.
thanks for listening to me vent and for the heads up about the steroid treatment. the neuro i saw in the hospital advised me to contact my dr. in the future and instead of going to the ER to see about getting treated at an infusion center where i can get IV toradol and/or decadron or whatever cocktail they prefer to prescribe without the wasted time and money spent in an ER. this is a great pro-tip, especially for me as there are no urgent care clinics near me but several ER/hospitals and an infusion center located in a hospital very close. i had no idea this was an option.
thanks again. i’m happy to be on the mend. i hope you’re feeling well.
August 19, 2015 at 1:26 am #66545
Thanks for the update. I’m glad you’re feeling better! I hope it stays like this.
Thanks for the update.
August 21, 2015 at 1:38 pm #66635
I gave in after a horrible July and started Topomax. After 5 days at a 25mg dose, I decided to ‘ween’ myself off of it (I didn’t like the stoned feeling and when I closed my eyes, everything would spin). I split the dose for the following 3 days. On the evening of the first 1/2 dose, I developed an ectopic heartbeat. Is it from Topomax? Who knows, but it was pernicious for about a week straight, and now a week later, I still have it. On that first 1/2 dose night, I also had a full-fledged panic attack when I laid down to go to sleep. I couldn’t breathe, felt like someone was choking me, lightheaded, and my left arm went numb. I thought I was having a heart attack because the whole time my heart was beating with the ectopic (skipped/extra) beats. It was horrible. I don’t have anxiety issues, but apparently Topomax messes with your GABA receptors. Since then, I’ve started learning about food triggers. I stopped all dairy and gluten (you can be gluten insensitive without having celiac disease) and feel a lot better. I’ve also tried to avoid Tyramine and Tannins. Too early to tell if I won’t get migraines, but last month it was one good day, one crappy day, one good day, etc. I have much more energy, sleep better, no bloating by afternoon, and most important have legitimate headache-free days. I would not recommend Topomax. Look into dietary restrictions and supplement daily with B-2(400mg in divided doses) and 200mg Ubiquinol. I also started Magnesium Threonate, a highly absorbable (and pricey) form of magnesium. This seems to help me fall AND stay asleep! Good Luck everyone finding the right pain-free course that fits for you!
August 24, 2015 at 3:12 pm #66713
Did you consult with your doctor as you were weaning off Topamax and having those symptoms? If you’re still experiencing these symptoms, please go to your doctor.
Topamax can affect people in different ways and it sounds like it was not for you. I’m glad you’ve found some supplements that work.
August 24, 2015 at 5:36 pm #66731
I don’t know where to post this, but after my disaster with Topamax and the kidney damage (now all resolved), my doctor recommended the Cefaly machine.
I have to say that after two months on the Cefaly, I am incredibly improved. I did have a few sinus problems that did press on my head a lot, causing a ffew migraines. But basically, the Cefaly has brought my migraines down at least 80%. As of this writing, I haven’t had a migraine since Aug. 6 and I used to get 2 to 3 per week. I’m hoping it will basically eliminate them because that’s the direction it seems to be going.
I tried posting this in a Cefaly topic on “general migraine” but no one has responded to the post, which makes me think that no one is reading that topic. Where do I post about this?
August 25, 2015 at 9:25 pm #66779
I am so excited that the Cefaly is working for you!!
There are a couple of different places you can share your story and hopefully find some good feedback:
Also, our writer Kerrie has had a lot of experience with it. Search for her blogs about Cefaly.
Let me now if this is what you were looking for.
August 30, 2015 at 2:44 am #66962
I am writing on this forum for the first time. Not sure if the questions are right. Admin./Moderators may please guide.
I am writing as a concerned caregiver. A close friend of mine, aged 37 years, has had migraine for more than 20 years. She suffers with rheumatoid heart disease (RHD), some gyane- problems (has had to get one ovary removed surgically on account of some tissue growth) and asthma too. Off late, when the frequency of migraine attacks increased, she was put on Dicorate ER 250 (1 tablet daily). She used it for around 6 weeks and noticed significant hair loss happening. Upon second consultation, with another Neurologist, she was advised against the use of Dicorate ER 250 and instead put on Topaz 25 -1 tablet daily (Topiramet). She has been using it for 1 week now but has had a bad attack of asthama. She is finding great difficulty in breathing which has been keeping her awake all night. Though not sure, she tends to also complain of increased heart beat/when using the gym or climbing stairs. Her annual cardiac examination is scheduled for this week.
On this forum, I wish to know if RHD, asthma, gyane-problems and migraine could be linked to each other (directly or indirectly) or Topiramet could be the causative agent? Further, would any member please consider sharing their experience with with Topiramet and Divalproex? Would be truly obliged for the guidance and help.
October 26, 2015 at 7:16 pm #68681
I am 41, and I was diagnosed with migraines at 8. For a little more than 10 years, they have been chronic with migraines almost every single day and at least one episode of Status Migranosus a month. I started taking Topamax for the third time around about 4 months ago. The first 2 times I tried it were at least 8 years ago, with no real results, just the annoying side effects of tingling all over. This time around, I have pretty much run the gamut of all the usual preventative remedies for migraines and my doctor and I were both kind of at our wits end. Since I had recently become peri-menopausal, and my body had started changing in strange ways, such as developing an almost overnight allergy to peanuts, I decided to give Topamax another try. (I did not realize that it should be approached so slowly, and I am appalled at what my doctor did after reading all of these posts, but luckily I came out alright. My doctor started me out on samples of Trokndi ER. I took 25 mg twice a day for 2 1/2 days, 50 mg twice a day for 2 1/2 days then 100 mg twice a day. After my samples ran out, I called in to get the actual prescription called in and my doctor had gone on vacation so another doctor had to call it in for me, and she only called in 100 mg topiramate once a day. Not the ER, not twice a day. Turns out my insurance would not pay for the ER anyway, and since it was making me sleepy, I just took the 100 mg at night and decided to see how well it worked. I had no idea the side effects could be so bad changing the doses so fast like that. I feel very lucky.) I did have a really bad month for the first month that I was taking it, but that was par for the course with me.
After the first month, everything changed. For the first time that I can remember in my life, I have had more pain free days that HA days. I still have those days that I want to crawl into a closet in the fetal position, but it’s not everyday. I actually have several days in a row with no migraines. At first, I attributed it all to the Topamax, but then I had a thought. I wondered if anyone here has ever been given Seroquel? I had just started taking it when the Topamax started working for me. I am taking it for insomnia, but it is a bi-polar medication. I am wondering if there might be a correlation since Depekote is used for migranes and it is a bi-polar med. Hmmm… Oh well, food for thought. Either way, I am super happy that I am better for now, and whatever is causing it, I am not changing any of my meds for any reason.
And as far as the people who are having the brain fog problem from the Topamax, sorry to tell you, but if you have enough migraines, that becomes your normal state of mind, with or without meds. I have had constant aphasia for years and have only been on Topamax for a few months. If you read through some of the articles on this website, you will find out so much more than you will ever hear from most doctors. This website is by migraineurs for migraineurs.
November 15, 2015 at 9:28 pm #69365
I’ve been on Topamax (200 mg a day/100 at 11 AM 100 at 11 PM) for 4 months now. I’ve had some not so fun side effects…memory loss, mood changes, crying spells…my husband said he doesn’t know who I am going to be day to day…after further research I realized this medication is also used for bipolar disorder, any medication I’ve been on like that in the past has always had adverse effects. The issue I am having, my doctor has horrible bed side manner, I am in the process of finding a new one but I don’t think he wants to switch me…so I’d like to go in Wednesday prepared with my own options…so any suggestions on medicines to switch too with not as many side effects?
November 16, 2015 at 12:13 am #69374
Please make sure to taper down on the amount of Topamax you take. Going cold turkey is NOT fun. Usually doctors recommend decreased by 25mg increments per week, assuming you can tolerate it.
When I went off Topamax, my doctor put me on Zonegran as a substitute. It had a lot less side effects. Not sure if it will help you, but you should ask your doctor about it.
December 9, 2015 at 12:41 am #69920
After taking Topamax for over a year with dosage as high as 150mg/day, my new Neurologist had me stop gradually.
Per Web MD “Topamax has been associated with extreme nausea (likely the reason so many people lose weight on it), heart problems, cloudy thinking, lethargy”. Right on the money!
As with all medications, seems long term use have not been studied well.
We are all guinea pigs and should inform each other as often as we can.
May 5, 2016 at 10:09 pm #74998
Hi all – similar to many of you, I tried Topamax and hated the “heavy/dead to everything” feeling it gave me. I switched to Trokendi XR which is the extended time-release form and that also helped with the side-effects. I gradually went up to 100 mg and “held” for almost a year and a half. However, I do feel tired a lot and gradually do feel stupider and less eloquent and not good at speaking to adults coherently (not a good thing in my profession) and since i also have started Botox I started a taper down with m neuro’s permission. (My neuro thought I should stay on it since I haven’t been on it “that long,” and even go up in dosage, but he said I could go down very very slowly and carefully monitor symptoms. I spent 3 weeks @75mg and now have been at 2 weeks @50 mg. My problem is it’s so hard to figure out if I need to go back up again or give it time – I have been getting more headaches but I know that can be from the taper down itself, and also the daily spring weather changes have been incredible – sometimes fluctuations of 40 degrees from one day to the next, etc.
One question I have is – when people taper off Topiramate, do you have another prophylactic already picked out? How does one possibly choose?
Another question is, during the taper, is it ever advised to go back up one day if you know you’re going to be more prone to a migraine (for example, a day before thunderstorms and before onset of menses, I could take 75 mg of topiramate instead of 50mg)? Or would that just ruin the taper?
May 9, 2016 at 12:40 pm #75121
Thank you so much for sharing your story with us. Let me see what information I can give you that will help.
Good to hear about the slow taper down. Topamax is a medication that need to be increased and tapered off slowly; it’s also a medication that should be taken in a split dose so we can get the most benefit from it. If one is taking a total of 100 mg a day, its best to take 50 mg in the morning, and 50 mg at bedtime, per many of the migraine experts I’ve spoken with. You can read more about Topamax dosing here; https://migraine.com/migraine-treatment/topamax/dosage/ and the entire Topamax profile here; https://migraine.com/migraine-treatment/topamax/.
The decision to take another migraine prevention medication is typically made in conjunction with our doctor. I can tell you some migraine preventive medications have shown to be more effective than others, which you can see in this article; https://migraine.com/blog/new-migraine-prevention-recommendations-from-the-american-academy-of-neurology/. With over 100 migraine prevention medications to choose, from it’s always a good idea to discuss risk vs. benefits and which ones tend to work better than others. Feel free to share this information with your doctor.
I’m honestly not sure about taking more Topamamx on one day vs. another, that question is best answered by a qualified doctor.
Please keep us posted on how you make out,
December 29, 2015 at 4:54 pm #70544
So I have a very strange question. I have been on topamax for 3 years. I gradually titrated up to 150mg PO QD and have been on that dose ever since. I recently started botox and that has worked wonders for my headaches. My problem is this, I worked through all the usual side effects of topamax (or so I thought) when I first started the medication 3 years ago at 25mg PO QD and each week increased by 25mg. I had the nausea and took zofran, I had the memory loss/forgetfulness, dizziness, blurred vision, and even that wonderful tingling in the hands and feet. Then one day, after about a month of being on it, I woke up and all the side effects were gone (again so I thought). I still had no appetite which I could live with. However, just recently, I started having the memory loss, confusion, and forgetfulness all over again! I was driving home from work the other day, the same way I go EVERYDAY, and I totally spaced out as to where I was, who I was, what I was doing, where I was going, and I started panicking! It took me a good 2 minutes to figure it out. Then I went to the store the other day, called my boyfriend to find out what he wanted and apparently asked three different times what he wanted because I couldn’t remember. And I still had to repeat it to myself over and over to remember. AND I STILL LEFT THE STORE WITHOUT THINGS I NEEDED! I feel crazy! Could this be a delayed side effect to the topamax? I don’t want to place an emergency visit to my neurologist just yet because I have a botox appointment coming up in just a couple of weeks but I am getting a little worried.
December 29, 2015 at 5:54 pm #70553
good to hear botox is helping you as I have a similar history and am considering Botox in the new year, Topomax seems to have eliminated the devastating painful episodes I was having, but I am still having way too many headache days. I also had early symptoms with Topomax that have lessened after 6 months, but I still fell significantly stupider. I heard that there is some sort of a delayed release version of Topomax that is supposed to have fewer side effects. Anybody had experience with that. I am happy with Topomax, but I would love to have some more cognitive clarity back.
December 29, 2015 at 5:31 pm #70550
You are not crazy!!! Today, I had to drop off clothes for donation and go to the post office. Somehow I put all of my letters in with my clothes and now they are gone. Good thing it wasn’t anything important.
I was on Topamax for years. I adjusted to the memory loss, but it became very difficult. I would have a blank look on my face when my boss mentioned a conversation we had yesterday and I had no recollection. All the lists in the world couldn’t keep my thoughts straight.
After 3 years, I had to go off Topamax because my hair starting falling out. It took a long time to figure out that the cause was a med I’d been taking for years. My point is that, yes, the side effects can change.
When you see your neuro talk to him/her about either decreasing the dose or going off it completely. Coming off of it is really hard. As I was coming off Topamax, my doctor gave me Zonegran, which is similar to Topamax with less side effects.
Let us know how it goes!
December 30, 2015 at 10:29 am #70583
Thank you so much for letting me know I am not crazy! I feel like Topamax has been a huge help over the years and missing any dose has been a problem and has made my migraines worse! My Botox appointment was just rescheduled to a later date so I may have to make that appointment if they push it back anymore especially with classes starting back up. Just wish there were simple answers.
May 5, 2016 at 10:09 pm #75001
July 15, 2016 at 1:12 pm #77192
Having been on Topimarate for two weeks now..25mg working up to 100 mg, I must say I feel like a zombie.. But not as bad as many on here reading the comments, it just takes me an age to do things that used to take me minutes. One thing I have noticed is that my menopausal night sweats have stopped completely…has this happened to anyone else? I’m 48!
August 19, 2016 at 2:13 pm #78464
I used Topamax back in 2008-2009. It worked well for me, but I had to cut my dose to 25mg/day. I suffered the cognitive issues, lost some coordination, and lost my appetite. I had to quit because we wanted to have another baby. I regained my appetite four months after I quit.
I’m back to chronic status and it looks like I have to go back on Topamax and I’m not wanting to because I have become a marathoner and I have gained a fitness level that I don’t want to lose. *sigh*
August 23, 2016 at 2:13 am #78557
You may want to ask your doctor about Zonegran as a substitute for Topamax. Zonegran has less side effects. I switched to it after I had some long standing side effects that I couldn’t handle anymore. You might have a better reaction to it. Of course, I’m not a doctor! Just a suggestion.
September 12, 2016 at 2:56 pm #79394
Hi. My problem is that Topamax affects me very slowly, it may take about an hour before the start of the action. I’ve recieved a new recearch from Torpharm about mixing Topamax with DDM (what is that?). https://www.facebook.com/Torpharm/posts/167154320355850 Has anyone already tried this combination? By the way, maybe there are some other options to speed up the effect?
October 19, 2016 at 12:14 pm #80861
Thank you for your question. “DDM; Intravail® A3 is a 12-carbon chain
alkylglycoside compound with mucosal permeation enhancing properties.” Which I think basically means it helps with distributing medication via our mucus.
I think you may be talking about sumatriptan rather than Topamax. Topamax is FDA approved for migraine prevention, in addition to many other conditions, and is taking daily to prevent migraine attacks.
Sumatriptan is a migraine abortive, meaning it stops the migraine process and is taken at the first sign of a migraine attack. Sumatriptan comes in many forms including pills, injections, nasal spray and nasal powder.
The research you referenced pertains to sumatriptans plus DDM; Intravail® A3.
My doctor gave me a sample of Onzetra, sumatriptan nasal powder which seemed to work nicely. You may want to ask yours about it. Here is more information on this medication:https://migraine.com/blog/onzetra-xsail-receives-fda-approval/.
Let me know what you think
September 18, 2016 at 3:29 pm #79856
I started Topomax just around September 1. In my opinion this is a kind of poison, not a drug. I understand that it is more gain than pain for people with severe, chronic migraines, but for me it could have maimed me for life if I had not stopped it. Frankly, I don’t think many people should be taking it and that it should be more strictly prescribed because of how dangerous it is.
The first effects I got from the drug were light flashes in my eyes and strong tingling feelings, which far exceeded those that I got from my migraines. These feelings progressed to tremors and my limbs being on autopilot when I woke up at times in the middle of the night. If you ever see dogs running in their sleep, well that was me! These were just irritating symptoms that I could live with, but things just got worse and worse.
The medication also dehydrates you, which is extremely dangerous and harmful. I was drinking close to the recommended amount, but my lazy doctor never told me why I should have been drinking so much water. I had low stamina, I was really tired, and I just felt sick all the time like I had a mild virus. I also started having trouble breathing, and my stamina went way down. It felt as if I was always starved of oxygen, and I could not in any way relate it to my panic disorder. I felt dizzy, aged, and weak all the time. It makes me wonder whether I was getting brain damage from taking this drug.
Other strange effects started to creep in. I am on migraine preventative meds because my migraines cause hearing loss; literally that is the only reason. I was prescribed Topomax by an otologist (ear specialist), so they should have known to take care of my ears, right? Topomax actually caused more damage to my hearing, possibly from dehydration but I don’t know why; I started to get a diesel motor type of tinnitus or a refrigerator humming sound in both ears once I started taking 50 mg at night. I would also wake up with some losses in the low frequencies in one or both of my ears, which I had seldom experienced before. It started happening very quickly.
The scariest of all the side effects, however, was the vision problems I started having as soon as I started taking 75 mg of the Topomax. Essentially, I now have early signs of glaucoma; lots of pain and swelling behind the eyes, and one half of each eyeball is bright red. It got worse every evening when I took my topopmax. I feel lucky that I have not lost any vision (yet). Yes, this ‘drug’ could have taken out both my hearing and vision!!!
So I am tapering off now, back down to 25 mg. I just wished I never listened to my idiot doctor and had taken advice from friends and others who had lived to tell the tail from being poisoned alive with that substance.
September 18, 2016 at 6:41 pm #79868
Thank you for sharing your Topamax experience. Wow, I’m surprised your doctor kept increasing your dosage when you were having such strong side effects at low doses.
Your story is a good reminder to all to understand the drugs they are on. You certainly did your homework even though your doctor did you a severe disservice.
For anyone who reads this story, I encourage you to do your homework when taking a new drug, especially potential side effects. Clearly your doctor should do this and sometimes the pharmacy will give you a print-out about the med if it’s new, but half of it looks like jibberish.
For anyone on Topamax or talking about it, this link gives great information.
@Coyotesdawn– I hope that the side effects you are feeling will reverse once you are totally off of it. You should also think about finding a new doctor!!
October 17, 2016 at 2:30 am #80750
Thanks for sharing your views it was very beneficial too know the medicine in better way.