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Topamax Side Effects

I am on my second round of trying Topamax. I now remember why I quit taking it the first time.

So tired and the eye pressure I get with it. The first time I took it I couldn’t stand to go out at night and look at any outdoor lights. Solar lights, Street lights, Head lights. Fire works were absolutely the worst. At that time I was on 100 mg split per day. Tirated up properly and everything. Now they just want to keep me on 50mg split per day. I am only my third week and am tingling and feel eye pressure, not bad but it is annoying. I also can’t push myself during a workout. I am getting anxious and wondering if I should just give it up and go back to Zonegran. I so wish there was a cure. Would like to know if that Cefaly TNS gadget really works.

Does anyone else have eye issues with Topamax?

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Comments

  • Judy
    2 years ago

    I am so late in adding to this forum, but I hope someone can help me. I have been on Topamax 200mg. for many years as well as 80 mg. of Inderall. I had at one point been up to 300mg. but weaned down to the 200 which seems to be a fairly stable place for me. I still get 3-4 migraines a week. Almost all of them occur at night, but with my current medication they are manageable, and I am able to knock them out rather than being put in bed for days at a time. The level of intensity is different although not the frequency, However, I have discovered that at the age of 66 I now have a severe degree ofosteoporosis and after researching I have discovered that Topamax should not be taken because it takes the calcium from the bones. In fact it probably has helped contribute to my condition since I have been on it so long. I am currently weaning off of it which makes me nervous as I have never had many issues aside from being somewhat tired and the ususal sluggishness of the brain that people complain about. But I thought the trade off was so worth it. I am so afraid of having those 24-48 hour long migraines again when none of my medication can touch and you just suffer for hours and hours. I still get them, of course, but no where near what I did. Any suggestions of other medications that I could look into that might be similar? I have tried nortripllyne and hated that and it did nothing. Either I live with my migraines or fall down and break a hip! Great choices to make here! Big sigh!

  • NachosMomma
    3 years ago

    I’be been on a low dosage for about a month but noticed it immediately. I wear contact lenses. The side effect has since lessened but I suppose as my dosage increases it will persist again. I’m still experiencing migraines. I feel as though I’m getting them more frequently while taking Topamax. Is this common in the beginning? It’s also had a major impact on my ability to concentrate which I already struggle with. I have PTSD as well.

  • Kippieloo
    3 years ago

    I have a question about side effects of Topamax. I’ve written in before, most recently in august of 2015 because, in addition to the hair loss Iv’e been experiencing since Dec 2014, I ended up in the hospital with a kidney stone. Both of these side effects are supposed to be “rare”. I’ve never been one to have “rare” side effects with any other medication I’ve ever taken. So, I don’t think these results are “rare”. It’s a year after weaning off Topamax and I’m still dizzy, have trouble retrieving words, losing hair and now I’m wondering if the arthritis that my foot Doctor diagnosed may be another “rare” side effect. Anyone out there having difficulty with achy, sore feet?? Please note that no one, and I mean no one in my family, going back 3 generations on both sides with all aunts uncles and cousins – no one has had arthritis.
    So… anyone else having difficulty walking after sitting or laying down for more than an hour?

  • Hearts
    4 years ago

    I taken topamax for years . its a miracle for me . relieved all pain . no side affects. Except slurred speech, occasionally

  • Shelley
    4 years ago

    I am on my second round of Topamax myself. The first time I had been on it for about 8 years and I was taking 200mg twice a day. I was having trouble concentrating and felt foggy most of the time along with major weight loss. It had also stopped working and I was still having migraines over half the month. The doctor I was seeing at the time told me just to get off all my meds and see what happened. That is when I changed doctors and started seeing a Headache Specialist about 4 years ago. In the last six months he put me back on 75mg of topamax twice a day. After about 2 months I started having eye issues and there weren’t any changes in my headaches. Botox injections with my meds of Lamictal twice a day and Lyrica seem to be helping. We have also tried Occipital Nerve Blocks and they help also they just don’t last more than about 6-8 weeks.

    I also tried the Cefaly and it did help some, but when I had a migraine it was impossible for me to use the unit. It might be worth giving it a try. I plan to start using it again since I have had some relief from the severity and frequency of my migraines.

    Hope this helps

  • Lynn Voedisch
    4 years ago

    Katie, I went to the Cefaly link you posted and it’s all full of 2014 comments and won’t let me post. Seems it’s full up!

  • Jan Me
    4 years ago

    Been on Topamax since 2008 and now at 100mg twice a day. 63 yo and migraines since I was ten without any other real prophylactic success until then. Yes it was a horrendous first eight weeks getting used to the drug: all sorts of weird, stupid and quite dangerous moments, incl driving on the wrong side of a busy road, totally forgetting where I was supposed to be going, and being unable to do simple maths (I’m a teacher!). But now those things no longer happen, although my hubby swears I’m not the person he knew prior to starting the drug; that I’ve lost a ‘spark’ and a degree of intelligence and passion. I understand what he says and agree, as I do feel at times that my mind is slightly foggy and confused, that my short term memory is not what it was, and that my libido is definitely not what it was. On the other hand, I imagine how life would be with chronic migraines again, and I wouldn’t change a thing. It’s all about finding a balance in your quality of life in order to make that life worth living.

  • bluebird
    4 years ago

    Thank you for sharing your story and deep level of acceptance of the realities of chronic migraine.You are being a teacher in this process. The scary moments for me were truly scary and the ablation of personality and thought more profound. Of course I had been taken to a higher dose. No way now to remember if the low dose would have done the trick. You are reminding me that revisiting the possibility of low dose RX might be worth trying some day.
    Right now I am trying the eNeura Trancranial Magnetic device (TMS) on a rental agreement. Have to wait to see if there is true benefit.
    The Cefaly is sometimes helpful because the muscles of my face seems to be more relaxed after use and I often fall asleep while using it. Very difficult to evaluate but as a treatment but I ordered another pasty electrode to have it as an option. My face is often droopy and I have ptosis, so the Cefaly feels like a weird facial. Hope you continue to have benefit from your RX.

  • Jennifer
    4 years ago

    For me, Topamax has been a life changer, in a positive way.
    I did have a bit of confusion for the first two weeks or so I was on it, that was 2 years ago.
    I take 50 mg. 3x’s pd.
    Plus, I am on two other meds to help. Let’s just say I have terrible Migraines, that lay me out.
    Until Topamax, I would have have them all day, every day, and would have given money some days for someone to shoot me.

  • bluebird
    4 years ago

    I am so happy for you!! Wonderful news.
    Thank you for sharing the dose details. I had been on a higher dose. I wonder now if just a bit might have been helpful. I recall feeling some improvement early on the ride up the dose escalator…
    I too get “taken out” and to the edge of my patience with this adventure in living.
    Making the most of the good hours being the best I can be.
    Hope this continues to work for you.

  • Jennifer
    4 years ago

    For me, Topamax has been a life changer, in a positive way.
    I have not had any of the negative side effects that I have seen so far. I still get Migraines, however; they are not daily.

  • Zephalia
    5 years ago

    Yes, I also have experienced the eye pressure, like a band of pressure behind my eyes and across my forehead. I’ve only been on Topamax for 6 days however.

    I’ve also experienced, vertigo, blurry vision, difficulty concentrating, nausea, aches & pains in lower body joints.

    The plus, it’s helping me sleep at night far better than I have been.

  • mygrainetoo
    5 years ago

    Finding the treatment that sucks less for brain cooties:

    http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/TopamaxSideEffects

    I can’t believe I hadn’t put this link on this thread!

    Happy Holidays to all!

    – Sandy

  • Janet
    4 years ago

    Excellent!!! Topomax was great at helping the frequency of migraine for me..but the damage it has done is everlasting. WATCH FOR ALL SIDE EFFECTS…if I had seen the future through a crystal ball I would’ve tossed topomax into the trash before eating one. Eventually..you will suffer from one side effect and it won’t be anything good. I haven’t taken it since 2007 when I had a stupid moment…being chronic (EVERYDAY! for countless years) I feel I have earned the right to say “BEWARE! ”
    Blessings,
    Janet Jones

  • bluebird
    5 years ago

    I too struggle with knowing what is a symptom of Migraine and what is “something else”. Side effects became clear to me on Topo. After a “fair trial”, I stopped topirimate with a significant improvement in my sense of being alive and human. I am able to think better and to have pleasure. And even tho the daily migraine syndrome is still ever present, I am more aware of how much I lost while on this drug. So glad to have those parts of me back!!!!
    Moving toward Acceptance.

    I am so glad that this drug is helping you at this time but hope you follow up on monitoring the potential risks for your kidneys!

    Best wishes for all.

  • Doug
    5 years ago

    I have been taking topiramate for a few months. I am up to 100mg per day (50mg in the morning, 50mg in the evening). After 2 months working up to that dosage and 2 months resting at that dosage, my frequency, duration, and severity of migraines has dropped significantly. I have gone from about 28 days per month of level 4-8 migraines to about 15 days per month of level 2-7 migraines. There is no cure for migraines, but there are ways to manage migraines (which of course are different for every patient). This drug is doing exactly that. It has brought my chronic migraines to a much more manageable level. They are still very difficult to deal with, but I feel like I have my life back. It’s not a miracle drug (there is no such thing), but it’s the best thing I have been able to find in 10 months of hell.

    The side effects have been relatively minor. I have had some mild short term memory loss. The most noticeable one has been setting something down and a few minutes later forgetting where I put it. I could spend an hour looking for something 10 minutes after I set it down. I also am getting some numbness in my left fingers. However, I was getting that on previous drugs, so now I am wondering if it is a migraine symptom instead of a drug side effect. I also have had cloudy urine since I started the drug. My neurologist insists it is not a side effect, but in my opinion it has to be. It started 2 days after I started taking the drug and has been consistently happening since then. I drink plenty of water every day.

    In comparison to the pain, nausea, brain fog, and other symptoms of daily chronic migraines, I will take the minor side effects I have had so far with topiramate. I understand that a lot of people have struggled with severe side effects with this drug and cannot take it for that reason. I want to encourage migraineurs who have not tried topiramate yet to be open minded about trying it. You may find that the drug breaks the cycle for you without severe side effects. Don’t keep tolerating severe pain out of fear of being one of the small percentage of people who have adverse effects. The studies show that the majority of people who take this drug experience a reduction in headache days and do not experience adverse effects.

    I do want to encourage anyone who takes this drug or any drug with potential adverse side effects to stay hydrated, eat healthy, and keep an eye on your psychological state. Talk to the people around you and tell them to watch out for you too. Don’t be afraid; be smart.

  • Janet
    5 years ago

    At the risk of repeating myself,.i will repeat myself..beware Doug…you are dealing with fire….keep a close watch on every and all side effects….it looks great now…the longer you wait the worse it will be…my post bears coming up to the top …

    Janet says:
    JUNE 10, 2014 AT 8:51 PM
    Get off it now. Besides eye issues..I developed dry eye so severe I needed medical treatment …I was losing enamel off my teeth and my dentist said once the enamel is gone it’s gone…I had a friend lose vision completely for 4 days…I stutter still from it and have been off it for 7 years. Memory loss…yep…go to some sites about topamax. It’s nicknamed the stupid drug..and rightly so. Also…kidney stone are a side effect. I knew someone who developed those. Dangerous dangerous drug…did it help me…yes…like you used it for 2 years and asked to be weaned off because I was developing too many serious health issues….migraines went out of control …I had a stupid moment and forgot why it was I stopped topamax the first time around. If this post isn’t strong enough I will say it once more….get weaned off before you lose you vision. I can no longer drive at night and developed cataracts the eye doc says undoubtedly from the years on topamax.

    Blessings
    Janet

    Janet says:
    AUGUST 15, 2014 AT 11:07 AM
    Because I took it for 2-1/2 yrs…stopped because of hideous side effects…even though it halted the migraines to almost mill…I had a topamax moment and asked my doc for it back only to be quickly reminded of why I wanted off in the first place…do your research and monitor yourself…I gave up migraine free days because of side effects I suffer with 7 years later and ultimately will forever.

    Blessings
    Janet

  • The Migraine Girl moderator
    5 years ago

    Doug,

    Thank you for taking the time to share your experiences and encouragement. I’m with you as far as evaluating for yourself what preventive drugs you want to try–it’s always good to weigh the options (complete with possible side effects) and then make the choice that’s best for YOU.

    I have had the experience of a doctor telling me a side effect I was experiencing wasn’t related to my medication simply because he had never heard of that before. I encourage you to take a look at the verrrrryyy end of this Migraine.com article and contact the FDA regarding your cloudy urine.

    http://migraine.com/migraine-treatment/topamax/side-effects/

    Take care, and thanks again for your helpful words!

    Sincerely,
    Janet G., “The Migraine Girl”

  • MaFixIt
    5 years ago

    BTW – I have a Cefaly device. It’s not working either. I believe my headaches are cervicogenic tension headaches and am working on that. Could be why none of this migraine stuff works for me.

    Karen from Arizona

  • MaFixIt
    5 years ago

    I just tried Topamax – never got past the 25mg dose. At 12.5mg my headaches got worse, at 25mg the dizziness was so bad I could not stand it. I really wanted this stuff to work as I am sick and tired of daily level 5-6-7-8 headaches.

    On the other hand, my daughter is up to 50 mg 2x per day. She is tolerating it better than I. She has the tingling and some dizziness, but her headaches are now manageable. Go figure.

    Karen from Arizona

  • Judi
    5 years ago

    Everyone is different in reality. I have been on Topamax since 2010. I have a severe migraine disorder and this medicine has been the only thing to give me relief. I had about 5 weeks of adjustment but then all was fine. My migraines still occur but in a more mild form on occasion. My neurologist said I could still go up in dosage, I am at 100mg twice daily, however I choose to leave well enough alone and not cause a potential problem with possible side effects with an increase. Since my migraines are controlled, I am clear headed, have a better memory, and my life has turned around. It was several years of trial and error before I found the path of peace between this illness and how it was interrupting my life. For some, I am sorry this medication does not work for you. For others, do not fear at least trying Topamax because we are all different in our chemistry and it may work wonders for you as it did for me. ~ Judi

  • Janet
    5 years ago

    Because I took it for 2-1/2 yrs…stopped because of hideous side effects…even though it halted the migraines to almost mill…I had a topamax moment and asked my doc for it back only to be quickly reminded of why I wanted off in the first place…do your research and monitor yourself…I gave up migraine free days because of side effects I suffer with 7 years later and ultimately will forever.

    Blessings
    Janet

  • mygrainetoo
    5 years ago

    I gave up on Topamax & am decreasing dosage. When I was up to 75 mg per day my eyes were terrible – couldn’t read a book, newspaper or computer for very long, but worst of all was the loss of memory, word retrieval, & about 40 IQ points, I’d guess. Am starting to feel like my old self at 25 mg per day so I I’ll stay at that for whatever good it does. I’m in my early 60’s & am too old to be a guinea pig for this stuff.
    Thank heavens the Fioricet I have works on the rare occasion I need it. So far My migraines are food & drink triggered so I can control them mostly by diet.

  • Janet
    5 years ago

    Get off it now. Besides eye issues..I developed dry eye so severe I needed medical treatment …I was losing enamel off my teeth and my dentist said once the enamel is gone it’s gone…I had a friend lose vision completely for 4 days…I stutter still from it and have been off it for 7 years. Memory loss…yep…go to some sites about topamax. It’s nicknamed the stupid drug..and rightly so. Also…kidney stone are a side effect. I knew someone who developed those. Dangerous dangerous drug…did it help me…yes…like you used it for 2 years and asked to be weaned off because I was developing too many serious health issues….migraines went out of control …I had a stupid moment and forgot why it was I stopped topamax the first time around. If this post isn’t strong enough I will say it once more….get weaned off before you lose you vision. I can no longer drive at night and developed cataracts the eye doc says undoubtedly from the years on topamax.

    Blessings
    Janet

  • bluebird
    5 years ago

    Thanks for your clear and heartfelt response.
    I am shy about writing on a blog and usually just get benefit from others’ stories. I am relieved to have enough of my self back that I can appreciate many more parts of the day than when I could not punch my way out of the “paper bag” ( to be polite). My vision is still blurry but that is part of my migraine syndrome. So like many other experiences, it is challenging for me to know what is part of the syndrome and what is medication side effect.
    I know that this RX is very helpful for many and I had hoped it would be for me.
    Then there’s the chronic daily migraine….
    Wishes for wellness,
    andrea

  • bluebird
    5 years ago

    I am tapering down off of Topomax 100 mg at bed time. No one suggested adding K to my diet or checking levels. Fortunately, I was using extra Vit. D. The numbness tingling got intolerable and disappeared at 50mg. My vision, already blurry and double from nystagmus from the Migraine with aura, just got worse.I don’t know if it will get better but I had my pressures checked and all is well. Tinnitus also seemed to increase. The inability to think, taste food, experience pleasure or beauty made me feel like I was turning into a pillar of salt! I use Gabapentin as part of my pain management and it has proven a great help while tapering.
    I just don’t know what to do now.
    I have had a burst of creativity energy and focussed attention. But the daily events continue. I am scared to stop. I can taper to 37.5 or 25mg.Does anyone get benefit from 25mg? Is it protective from cortical spreading depression? My neurologist has left it to me to make my own decisions.

  • ken57
    5 years ago

    I just started topamax the one side effect i have seen after a few days is not being able to sleep though the night as for sight i just got new glasses so i will watch my sight to see what happens thank you for the insight.

  • Jencottee
    5 years ago

    I took topamax for a good 6 months before i noticed any nasty side effects and i thought it was great. Id actually lost about 15 – 20kgs (which was weight put on while using other medications in the years before), which sounds great but it was rapid weight loss. The weight just fell away while i was taking topamax, each week id lose about 5-10 kgs and i found that i wasnt hungry most of the time and when i was, i could only fit about a third of my previous portion sizes in. The negative for me was that about 6 months in my eye sight started to get blurry and went downhill very quickly. I was forced to stop taking topamax as a result and i now wear glasses everyday as my eyes never returned to normal. I cant see without glasses and even up close, vision is a bit blurry. On the plus side ive learnt the importance of drinking water and regular sleep from many years of trying to control my aura migraines but they can only be controlled to a certain extent. I now wear glasses for everything as my sight did not improve, i drink plenty and i do mean plenty of water and control stress as best i can and get plenty of sleep. I have suffered aura migraine since i was about 8yrs old (now 25) and of all the different medications and therapies trialled this is what ive learnt…
    Sleep and regular sleep is very important
    Drink plenty of water – relates to blood vessels dilating. I have a water bottle with a popup lid with me at all times and pretty much sip on it all day
    Stress control is a must- deep breathe when tense and just concentrate on that (it helps to relax your facial and head muscles and can calm you down)
    Im currently pregnant so not taking anything at present but before i fell pregnant my dr and i were trialling a new idea relating to aspirin. Id take 300mg aspirin in the am and again in the pm and to be honest id had the best control of my migraines that i have ever had in my life. Check with your dr first but for me it was the best treatment that i have ever trialled. I have taken many different meds over the years and of all, the aspirin was most effective by far. Keep in mind that my aura migraines were very severe accompanied by complete numbness in one side of the body, inability to comprehend anything for a period of time during migraine, aura, severe sensitivity to light and frequency has varied through my life from 1 a week to 1 or 2 everyday and now (when i wasnt pregnant and while taking aspirin, 1 (mild migraine) every 6 months). Good luck

  • bluebird
    5 years ago

    Wonder how your experience with Aspirin is going….?
    Hope all is well.Would love to know if you have continued to have a good response and if your doc are ok with long term use.
    I am still struggling with brainstem aura chronic migraine and have been avoiding anything that might result in “medication overuse headache”.
    I am currently using gabapentin.

  • Katie M. Golden moderator
    5 years ago

    Martinimaker,
    Like Jean, I too have been on Topamax but went off it for other reasons. I never had eye pressure issues. Jean gives great advice. You should call your doctor right away to discuss. If you’re body isn’t tolerating the medication at this dose, there is no reason for you to increase it.

    When I went off it, I was put on Zonegran as a substitute as well, so maybe that’s what you need to stick to.

    As for the Cefaly, I have not tried it. In our Forums area, you can find questions and answers about this device and join in the conversation. Also our search engine will provide you with a lot of articles that have recently been written about it.

    http://migraine.com/topic/cefaly-anti-migraine-device/

    I hope this helps!
    -Katie

  • Martinimaker author
    5 years ago

    Katie,
    Thank you so much. I was on Zonegram I am going to suggest to my Doctor that I go back on it. As I had no side effects with that. Thank you so much. I appreciate this and yes it does help.

    Best Regards,
    Michelle

  • Jean
    5 years ago

    I was on Topamax several years ago… I went off of it due to multiple side affects, but I do not recall eye problems being an issue with me.

    I would, however, suggest discussing this with you doctor immediately, as this could be a serious side effect. Please read below; this is a portion of the side affects that may pertain to you. I hope you find this helpful….

    http://www.rxlist.com/topamax-side-effects-drug-center.htm

    Rarely, topiramate may cause a very serious eye problem, generally within 1 month of starting treatment. If untreated, this eye problem can lead to permanent blindness. Therefore, get medical help right away if any of these side effects occur: sudden vision changes (such as decreased vision, blurred vision), eye pain/redness.

  • Martinimaker author
    5 years ago

    Thank you Jean. I had read something about glaucoma and had my eyes checked. They were fine. The doctor’s think I am crazy for this side effect. I quit taking it a few days ago and my eyes are not having pressure. They are blury however. I am calling the doc today. Thank you for tour reply. That is scary.

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