Migraine Treatment Experiences: Topamax

The anti-seizure medication Topamax (topamirate) is incredibly helpful as a migraine prevention medication for some people. Unfortunately, for others, like me, having that medication in our bodies is like hell on earth. With that background in mind, I’d like to share my experience of taking this medication and what I learned from that experience.

As soon as the medication Topamax built up in my system I started to notice distinct, troubling changes in just about every part of my body. For starters, I was constantly nauseated. Granted, nausea is a common migraine symptom, but even through my 20+ years living with migraine disease I’d never experienced nausea on this kind of intense, ongoing nature. It was debilitating and prevented me from eating just about everything. As the medication caused me to lose a lot of weight many people told me how great I looked. But that’s just not a healthy way to diet, and I felt horrible.

In addition to the nausea, I got what I lovingly refer to as the stupids. I couldn’t think straight, and I couldn’t remember anything. I felt like I was walking around in a constant fog and nothing I did helped to clear my mind or restore my focus. I’ve always been a sharp, quick minded person, so this symptom was particularly demoralizing and embarrassing. Unfortunately, this symptom has lingered in the years since I stopped taking Topamax. It’s better, but I still struggle with those same memory issues that started with taking Topamax.

But more important than the symptoms I experienced while taking Topamax, I think, is what I learned from that time and can pass along to all of you.

What I Learned:

  • Be wary of a doctor who suggests treating the side effects of a medication with more medication. And then treating the additional side effects of those meds with yet more meds. When I reported back to my specialist at that time what I was dealing with, she kept throwing more and more meds at me. It was not an appropriate solution, nor did it really help.
  • Even if your doctor doesn’t have the wherewithal to suggest taking you off a problematic medication after an appropriate trial period, suggest it yourself and ask for a plan for tapering off. I stayed on Topamax for a year. A full year of debilitating nausea and such profound stupidity I couldn’t function at work when I felt well enough to be there. It can take time to titrate up to a therapeutic dose of a new medication. But once you’ve reached that level, ask your doctor how long of trial is necessary to know whether the medication is helping. Then pay close attention to how long you’ve been on it and how you’re feeling and follow up with your doctor.
  • Finally, remember, you are the expert on on your experience and your body. A doctor can and should tell you what you might experience or what other patients have experienced. But don’t let anyone make you doubt what you and your body know you’re dealing with.

Have you tried Topamax? What were your experiences like?

Looking for more community discussion about Topamax? Visit the Topamax Discussion Forum!

The purpose of the Treatment Series is to share personal experiences with migraine management techniques. Do not start, stop or change any treatment program without the advice of a qualified healthcare professional. For clinical data and safety information, please visit our Migraine Treatment pages.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (44)
  • Karen
    6 years ago

    Topamax was one of the first drugs I was prescribed when I was diagnosed in 2006. Aside from losing weight, which I liked, it made my ears ring constantly as well as make me feel extremely stupid! Everything ~ and I do mean EVERYTHING ~ had to be written down; appointments, scheduled meetings/dates/lunches, what we were going to have for dinner, etc.! You name it, I had to make sure that everything that was going on in my life got wrote down somewhere. I kept a journal and made a very good-hearted attempt to write in it at least 3-4 times a day. Doing that helped keep me on track…..at least I felt like it did! By the time I had been on it for 5.5 years, I was taking 200mg twice a day and had been at the level for quite a while. My neuro and I discussed going off of it since the migraine’s began increasing. So early last year we began slowly lowering the dose, 25mg at a time. By the time I had gotten down to 100mg per day, I was having to use my triptan every day. My migraines increased to the point of keeping me in bed most everyday. At my appt. with my neuro the next month, I asked to go back on the Topamax. I just couldn’t handle the pain nor staying in bed all day anymore. So, once again we begin increasing the dosage. I’m back up to 375mg per day. The ringing in my ears is back in full force, words escape me the moment I am about to say them, I’m back to losing track of time and forgetting simple things. BUT my migraine pain is more manageable now and I’m no longer spending my days in bed. I feel as if I’m damned if I do and damned if I don’t when it comes to using this drug. I wish there was something else out there that worked as well as Topamax does for me because I really, really dislike the side effects. Thanks for writing about this Diana and sharing your story!

  • Diana-Lee author
    6 years ago

    You’re in such a difficult, no win situation. I feel lucky that at least it didn’t help me so the decision to go off it was easy. There’s just no good answer for you at this point, is there?! 🙁

  • debwilton
    6 years ago

    I’ve told my doctors that even though I’ve been off tops ax for 5 or so years, I believe it permenantly damaged my memory. I used to be on time and never forget apps., etc. Now I had a doctor drop me for being late by 15 min. to 2 apps. and missing a 3rd one. I can watch a movie one month and watch the same movie the next month and it’s like I’ve never seen it before! I get late fees on bills and from my bank, which NEVER happened before. My life will NEVER be the same and I blame topamax! Thank you for sharing your story too!

  • Diana-Lee author
    6 years ago

    You’re more than welcome! The memory thing just sucks, doesn’t it?!

  • 6 years ago

    Hi, I was put on topamax by a neuro in June 2012. We started off with 25mg and titrated up really slowly by 25mg every two weeks as I had done some research of my own before starting it and was working 7day weeks plus being a Mom and wanted to avoid the side effects. We got up to 100mg eventually and I was told that it wasn’t advisable to take more than this…the side effects started straight away for me though: tingling in my feet at first, forgetting words, short term memory loss, slurred speech, then RSI type pain in my hands and wrists once past 75mg a day. The worst one was intolerance to heat (it was 40 degrees C!!!!)I felt like my head and body were on fire until I could get inside in the air conditioning. Initially the topomax seemed to help space out my episodic migraine with aura which was up to a weekly occurance and the reason I started on it, but whilst I was on it my non aura migraines became chronic, the worst lasting a full 21 days. I was in some sort of head pain most days all summer, had no appetite, would have to remind myself to eat something before I went to bed, and after a few mouthfuls of whatever I ate would lose all interest in eating any more.I lost 10% of my body weight. Most of this summer was spent having to lie down in order to gather my strength for my evening shifts at work and I was still taking painkillers (although careful not to over use them). During this time I also started having night terrors, when I would wake up having a panic attack: heart pounding uncontrollably, until I realised that I wasn’t dying from a catastrophic migraine or stroke. Not suprisingly I was also becoming depressed!
    I referred myself to a specialist migraine clinic, who straight away realised that the topomax was making my chronic migraines worse and that the side effects were out weighing any positive effects that may or may not be due to the drug, and seeing as I was already depressed, advised me to taper it off gradually and then to start on Amitriptylin 10mg once I was down to 25mg topomax, then stop the topomax altogether after a week. This Ι did last November, and have felt so much better for the last 2 months. I have regained most of the weight, my memory and word finding are much better although I still do notice memory flaws…disappointingly this past week I have had headaches everyday and a three day migraine, so now am considering increasing my amitriptyline to 20mgs (my Dr advises 30mg but can go up to 50mg….) I just want to say that I was terrified of coming off topomax, for obvious reasons, but the withdrawl for me was problem free (did it slowly over the course of a month)and I am so glad I came off it now. I don’t think you realise how incredibly ill you are until you get a little bit better, it just becomes normal, and with the topomax brain fog you just concentrate on getting through each day and there’s really no room to concentrate on anything else! Good luck to everyone out there, I know you have to be pretty desperate to try this drug, but I really would say that if you are still not well after about three months on your final dose to get off it slowly and try something else.

  • Dawn
    5 years ago

    Thank you so much for this comment! Yes, you do have to be desperate to try this drug but I know it is making me sicker. I am terrified to go off of it because I don’t know if my nausea now is the migraines or the topamax. But I was never this nauseous before topamax… so your comment and your article, Diana Lee (thank you, by the way!) are giving me courage to take the step. I am a mom of three little one and my husband and I know I just can’t keep living like this. I hope I can handle life without topamax. I’ll enjoy feeling smart again! I’m going to get a treadmill and see if working out every morning helps. I never could before because of bouncing my head… but if I start now while my head isn’t bad… maybe I can get ahead of it in preparation for tapering off topamax. I can do this. Thanks, guys.

  • Diana-Lee author
    6 years ago

    I so totally agree with what you said about not realizing how sick you are from the med until you go off it. That was definitely my experience. Thanks for sharing your story!

  • taralane
    6 years ago

    I have been on Topomax twice. The first time I was on it, my migraines decreased in frequency substantially, I lost a lot of weight – 40 lbs. – but did have the memory loss that everyone else has been describing. I was at 250mg for 3 years when I finally decided I had to get my brain back, even at the cost of gaining weight, which I did, immediately. I also had an impacted kidney stone for which I needed an emergency operation. I had no idea that this was a common side effect from the drug. I went on it again after going through some other preventative meds which did not work, but the second time round lost no weight and only went back to having short term memory loss, so I went off it again. Now I am on Depakote, my hair is falling out – it is about 1/2 the thickness of what it was 6 months ago, and I have gained weight and cannot seem to get it off by any method. The Depakote was great at first in blocking my migraines and I had a lovely 3 week period of no migraines, and then we had a big storm and I had a 7 day level 8 migraine, and that was the end of the Depakote as a migraine preventer. So I am still losing hair, and waiting for an app’t with a new migraine neuro because no med is giving me any relief, or if it does, it is only for a short time before my migraines break through the medication.

    As a long time migraineur I have to remind myself not to take any medication from a Doctor until I have read all the side effects myself. The docs often leave out the ones that you might have an objection to trying to find something that works, and then if it does work, they don’t want to change it even if the side effect to you is untenable. I am going through this now with the Depakote.

    I am just hoping my hair will grow back when I finally get off the stuff.

  • Diana-Lee author
    6 years ago

    You’re so right. My doctor at the time definitely didn’t go over the side effects with me first, and I just didn’t know enough back then to do the research myself.

  • tucker
    6 years ago

    I started on topamax about 7-8 yrs ago (thru my PCP) and was up to 500mg from my first neuro. During that time I got very sick from something (not necessarily the topa – had kidney stones and a blood clot in my leg and maybe in my lung and I now have mild heart failure) – so the neuro was going to just dump me and send me to pain management. So I did my own research and found a good headache specialist before just heading to another neuro or pain management!

    The Headache specialists I see now decreased it down to 300mg and added Botox and most recently depakote. We tried to decrease the topamax and switch to zonegran but it didn’t help. I had lost about 40lbs during 2 yrs I was very sick but I’ve since gained about 10 lbs back in the last yr.

    Back when I started topa, I did have some tingles, esp in my hands and feet in the cold weather. Only lost about 5 lbs maybe but we were also on a walking challenge at work so that helped I’m sure. I also had some kind of “out of body” kind of feelings every once in a while – kind of like I was floating – hard to explain – if I was just sitting still at the computer or reading or being quiet by myself for a long time. Not at work on the computer if it was loud and busy or I was talking. I can’t say that I have word problems any worse than I’ve always have – my mom bought me memory books to go to college and I graduated 20 yrs ago. Sigh… None of those side effects were bad enough for me to stop since my migraines improved. But at this time, I still have almost daily nausea, though I’m not sure if it is medication-induced or a medical problem since it’s worse after eating. But obviously better than 3 yrs ago if I’m my kids aren’t calling me anorexic!

  • Diana-Lee author
    6 years ago

    I’m so glad to hear it has helped with your migraine frequency, and I hope the nausea remains manageable enough to allow you to continue with something that’s helping.

  • lepoppet
    6 years ago

    I only lasted 15 days on 25 mg of Topomax. During that time, I vomited every day, lost 12 pounds and was completely psychotic. Everyone kept telling me to stay on it so my body could get accustomed to the drug. I felt like I was in a constant state of “flight or fight” adrenaline-panic-stricken-hi-strung hell. I was sweaty, shaky, heart racing and on the verge of tears ALL THE TIME. I even contemplated suicide. I ended up having a major hissy-fit at some co-workers over nothing. The outburst landed me in HR. I was told that I’m paranoid and had an attitude problem. The next time I had an outburst, I would be “written up”.

    I hated Topomax. It didn’t help at all only made my life worst. I was just too sensitive to the drug.

  • Diana-Lee author
    6 years ago

    I’m so sorry to hear your experience was so awful. It’s one thing to stay on a drug and see if you adjust to more minor side effects, but when someone is that sick and contemplating suicide, it’s clearly not worth it.

  • sarahhoyte
    6 years ago

    I’ve been on topiramate for over a year now – having slowly worked my way up to 300 mg in divided doses. I do get some side effects, like I’ve very susceptible to pins and needles, especially when I’m tired, I often have trouble finding the right word, and I get a bit of brain fog. But they got much less severe about a month after I stopped increasing the dose. And they’re minor annoyances compared to the symptoms of migraine (the daily brain fog I used to get was far worse than anything I get with topiramate), which I’ve found topiramate significantly helped me with. And compared to amitriptyline, which made me exhausted ALL OF THE TIME, these side affects are definitely preferrable.

  • Diana-Lee author
    6 years ago

    That’s awesome that it’s helping you and the side effects have been tolerable. Glad to hear it!

  • marti
    6 years ago

    I had all the same side effects with Topamax – I couldn’t put together a coherent thought. My GP sent me to a different neurologist this past summer who prescribed Zonegran. It’s an anti-convulsant like Topamax, but I haven’t had any side effects except for stomach pain that went away after a few days. And the best part is that it cut my all day, every day, chronic migraine to about twice a month. It’s even available as generic zonisamide. It’s been an absolute lifesaver!

  • Diana-Lee author
    6 years ago

    Awesome! It’s great when you can move on from something problematic and find the right solution.

  • marycr8on
    6 years ago

    Like most of the rest of the commenters here, I didn’t do well on Topomax. My doctor was 200 miles away, so I liked to go with someone, if it was possible, for my appointments. My daughter drove me to my check-up after I was put on Topomax. She hadn’t been to the clinic before and she didn’t know the way there. I had such brain fog, I couldn’t give her directions and we ended up getting lost. She handed me a map and again, I couldn’t give her directions. It was so frustrating, I could see what I wanted to tell her, but there was no way to get it out! Once I got in to see the doctor, I told him how forgetful I had become and how messed up my brain was. He said something like: “I’m sorry you had those side effects, but if your brain was working, you’d remember that I told you that could happen!” I’m glad I didn’t go by myself, who knows where I would have ended up? I do know that I would have had an awful migraine to go along with the frustration! I didn’t have nausea from taking it, but I did have the tingling hands and feet. Unfortunately, it didn’t help the migraines at all anyway. I am still looking for something that works.

  • Diana-Lee author
    6 years ago

    Oh my gosh, what a scary experience! I, too, am still looking for something that prevents my attacks. At least the fact that it didn’t help either of us made going off it an easy decision, I suppose.

  • Cindi
    6 years ago

    I was on Topomax for over a year at 200 mg and did fairly well with side effects other than the tingly fingers and the cognitive issues as time wore on. I teach adult education and so the class usually picked up on the word I couldn’t come up with, but it was challending even in correspondence. We finally weaned me off and I’ve just started zonegran (is that right?) which is too early to make any kind of determination on yet… but so far so good. Something about that class of drugs is helpful to me as long as I can find one that I can live with. I do not find that I have any long term difficulties after Topomax, but then, maybe I wouldnt recognize it if it were there?? LOL! Another great article and discussion, Diana!

  • Diana-Lee author
    6 years ago

    Thank you so much, Cindi! Good luck with the Zonegran. I hope it’s the right fit for you.

  • Anonymous
    6 years ago

    I was on Topamax for over 2 years. The first year I did okay, but my cognitive functioning gradually worsened in the 2nd year to the point that I could barely do my job. I was afraid to get off it, fearing a worsening of migraines, but it didn’t really help the migraines all that much in the first place. I’ve been off it for over 3 years and I still don’t have my mental faculties back to pre-Topamax levels. I continue to experience word loss, poor short term memory, and difficulty concentrating even though I’ve been off it for so long.

  • Diana-Lee author
    6 years ago

    I’m sorry to hear the effects have lingered for you as they have for me. It can be so frustrating.

  • lisakovach
    6 years ago

    I was put on Topomax for my Migraines, and yes I found it does effect my cognitive skills. I was put on 300mgs at first but it made me so dizzy I couldn’t walk, so we reduced my dosage to 200mgs and added depakote 500mgs. I don’t have nausea with Topomax at all so far. I do have my Liver function checked which is very important while taking these medications.

  • Diana-Lee author
    6 years ago

    I hope it helps you!

  • Julie
    6 years ago

    I have been on Topomax off and on for about 6 years. I have tried Nardil, Depakote and a few others that did not work, so this is the 2nd time around for Topomax and I’m up to 300mg I take at night. At 1st as with most medications there are side affects that went away after the 1st week-dizziness, fogginess and the mental forgetfulness. It would come back after each up-dose. I did as the instructions stated to drink a full glass of water to keep from getting kidney stones and to protect the liver as it states w/most anti seizure meds. At the 300mg level it has reduced my daily severe migraines to 2-3 a week severe so it has helped in that department. I do get my liver function tested each year I’m on it. My doctor has tried to dose me down but when he does the severity of my migraines and duration increases. I am hoping now that I’ve started Cymbalta and have been on it for a week now, once it’s been in my system for a while I can try to dose down on the Topomax again. I get cognitive function problems during the migraines and after but also with the Fibro but I’m not sure that Topomax is partially to blame or not. But I did not have the nausea or severe side affects so I think I am lucky in that aspect. I would love to taper down or off it but since the other meds didn’t work I’m not sure I can go off it completely so we will have to see. But I am so sorry everyone has had such a bad experience with it. I have seen people that have done well with Depakote and I did horrible on it. I guess it’s that body chemistry thing of who can tolerate what. My body hated Depakote-my hair was falling out and I was gaining weight faster than a sumo wrestler!! Nardil did absolutely nothing. Nada.

  • tucker
    6 years ago

    Yeah, depakote made my hair fall out terribly for months. I’ve been on it just over a year and it seems to have evened out. I can’t say it’s the miracle drug though. I had to switch docs in the practice when my old doc left and she can’t believe what high doses of meds I’m on for my tiny little body. It is what it is I guess.

  • Diana-Lee author
    6 years ago

    Everyone is just so different, but it’s awesome when Topamax helps people as it has helped you.

  • MigraineSuz
    6 years ago

    Depakote made my hair fall out and made me gain weight too. I have been off of it for 1 1/2 years now and my hair has never recovered and I haven’t lost all of the weight. I never experienced the weight loss from Topamax, only the unfortunate side effects.

  • lisakovach
    6 years ago

    I was just reading your post and noticed the comment about Depakote and hair loss. I have only been on this med for about 4-5 months and my hair is falling out like crazy! Is there any thing I can do about this side effect?

  • caradrouin
    6 years ago

    I tried Topomax. It was awful for me. I know it can be a miracle for some. When I took it, I had terrible brain fog with mild nausea, but the back pain was intolerable! The instructions for the med said not to stop without consulting your doctor, and in the instance of back pain, call your Dr. immediately. I called my doctor and the Administrative Assistant who answered the phone thought I had the flu and would not pass a message to my Dr. nor make an appointment. She instructed me to go to a different doctor for my flu. With my brain fog, I could not effectively deal with this nitwit. I was not mentally able to drive safely. My husband had to step in and advocate for me, but since we had one car that was at the mechanic, one person who could drive, and only one job, neither of us go top the doctor in person.

    Nobody could understand the severity of the brain fog if they had not experienced it.

  • Diana-Lee author
    6 years ago

    Ack, what a terrible, irresponsible response from the doctor’s support staff! Not cool at all.

  • Melissa
    6 years ago

    Topamax was a horrible experience. The side effects came on so gradually that I did not realize how bad off I was. I was slurring my speech, I could not focus, it put me in the worst mental fog of my life. The point that I realized that I needed to stop was when I could not figure out how to spell wool. Migraines are bad enough but to completely remove my everyday cognitive function is completely absurd. Why don’t neurologists understand that drugs like these do not improve our quality of life, it only destroys our good days.

  • Diana-Lee author
    6 years ago

    Unfortunately it’s hard to know how an individual will respond to a particular medication, so we end up as guinea pigs. Thankfully you got yourself off it so you can move on any try other things.

  • sonjamohr
    6 years ago

    I’ve never commented before either, but this essay compelled me to. I tried Topamax about ten years ago. The nausea wasn’t severe, but it was there. However, the worst part was the “stupids” I had. I remember being with my daughter and not being able to remember the layout of the mall although it was a familiar location to me. Directions were difficult even though I am usually astute with getting places. It did help my migraines – but everything’s a trade-off. My brain comes before my pain.

  • Diana-Lee author
    6 years ago

    It really is a trade off, and we all have to determine that for ourselves. I hope you have luck finding something else that helps with fewer side effects.

  • Rebecca
    6 years ago

    My Dr. had me try Topamax just 4 weeks ago. I was only on it for 7 days. Days 1 and 2 I was nauseated and had brain fog. Day 3 I felt lost inside my body that didn’t want to move, eat or think. I don’t remember days 4-7. My family said I was unresponsive for the most part. They immediately called the Dr. and said she will not be taking this drug anymore. Being on Topamax for me gave me relief from daily migraines but in exchange for that I was lost in what was like a drug induced coma. I was so hoping Topamax was going to be the answer to my 30+ year battle with migraine disease. Thank you for sharing everyone! It helps to know I am not alone.

  • Diana-Lee author
    6 years ago

    It’s awfully disappointing to keep trying meds and treatments and never have a good result. It’s such an emotional roller coaster.

  • freeda23
    6 years ago

    I also have never commented on this site but felt compelled to today. I have been on topomax for close to eight years now and it has made a world of difference for me. Without it my migraines would be an every day occurance. I have a hard time reading articles like this because they only tell the horror stories of a medication. Taking any medication is a serious decision and comes with the possibility of serious side effects. As patients it is our job to be informed consumers before blindly taking a medication a doctor prescribes. All medications will alter your body chemistry and the possibility for serious side effects is present in each case. I find it difficult to blame a medication when we should be responsible for knowing the risks before beginning. To feature one persons case like this is to ignore the help this drug has offered. It may be that Topomax may be more likely than other drugs to cause more serious side effects, but for many this is a cost/benefit analysis. When everything else has failed, “topomax brain” (what my neuro. calls the brain fog associated with topomax), or occassionally having to remind myself to eat, seems a small price to pay for days without a migraine. For being able to leave the house. For being able to hold down a job, return to school, see my friends and family. We need to remember there are two sides to every coin.

  • Diana-Lee author
    6 years ago

    Glad it helps you.

  • art lover
    6 years ago

    I tried Topamax several years ago and had a similar experience. The queesy feeling eventually went away but I definitely experienced the short term memory problems. I had to go off of it because I could not maintain my weight. And the doctor never told me that petite people could have that problem, the pharmacist did!It is actually used, off label, as a weight loss drug because it works so well!

  • Diana-Lee author
    6 years ago

    Yeah, I’ve got to say that considering the possible side effects and how brutal they can be the idea of using this as a weight loss drug scares me.

  • MigraineSuz
    6 years ago

    I have yet to comment on the site but felt compelled to today. I took Topamax many years ago (before having children) and do not remember any crazy side effects but seemed to remember having some relief actually. My doctor put me back on it after I had my last child. That’s when the craziness began. I had many of the same symptoms. I was nauseated all the time and always seemed like I was in a fog. I explained it to others like I felt like I was in water and moving and talking so slowly and everything was passing me by. I was also very shaky and had tingling in my hands and feet. I couldn’t take it anymore and finally went off it. I have not found my miracle drug yet but am working closely with doctors to find it. I have suffered from headaches and migraines for 25+years.

  • Diana-Lee author
    6 years ago

    Good luck finding a medication or treatment that helps you. I’m in the same boat, and it is difficult to try so many things and still be in the same position.

  • Poll

    Follow us
    © 2010–19 Health Union, LLC. All rights reserved. This information is not designed to replace a physician’s independent judgment about the appropriateness or risks of a procedure for a given patient. Always consult your doctor about your medical conditions. Migraine.com does not provide medical advice, diagnosis or treatment. Use of the site is conditional upon your acceptance of our terms of use.