Topamax Lawsuits

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The epilepsy and migraine drug Topamax, which is also available as generic topiramate, has been associated with an increased risk of major birth defects. Research has found higher than expected rates of babies born with cleft lips, cleft palates, genital defects and other birth malformations when the drug is used during pregnancy.

TOPAMAX LAWSUIT STATUS: After a string of court losses, the makers of Topamax agreed to settlements for undisclosed amounts in about 76 Topamax birth defect lawsuits.


MANUFACTURER: Topamax is manufactured by Ortho-McNeil Neurologics, a subsidiary of Johnson & Johnson. Generic Topamax versions have been available since 2006.

OVERVIEW: Topamax (generic topiramate) was first introduced as a medication to treat epilepsy, which is a neurological disorder characterized by recurrent, uncontrolled seizures. In 2004, the FDA approved Topamax for an additional use of treating migraines, and it has since become one of the most widely prescribed migraine medications in the United States. The drug is also often prescribed off-label to treat bipolar disorder.

TOPAMAX BIRTH DEFECT SIDE EFFECTS: In March 2011, the FDA issued a warning that Topamax side effects may increase the risk of oral cleft birth defects, such as cleft lip and cleft palate, among babies born to mothers who took the drug during the first trimester of pregnancy. As a result of inadequate warnings previously provided, many women were not aware they may be exposing their baby to a potential risk of Topamax birth defects.

The FDA has urged doctors to avoid giving Topamax to pregnant women or women who are of child-bearing age and at a high risk of pregnancy. Alternative epilepsy drugs may not carry the same risk for the unborn child.

In July 2008, a small study published in the medical journal Neurology identified a potential link between the use of Topamax during pregnancy to an increased risk of serious birth defects. Children born to women who used Topamax during pregnancy were found to develop a cleft lip or palate at a rate 11 times hirer than would be expected in the general population. The study also indicated that children exposed to Topamax developed genital defects at a rate 14 times higher than would be expected.

The FDA required new warnings in 2011 after data from the North American Antiepileptic Drug Pregnancy Registry found that children born to mothers who took Topamax during the first trimester of pregnancy experienced an oral cleft about 1.4% of the time, compared to a prevalence rate of between 0.33% and 0.55% associated with other epilepsy drugs.

TOPAMAX CLEFT LIP AND CLEFT PALATE LAWYERS: Potential lawsuits and class action claims are being reviewed by Topamax lawyers as a result of the drug makers’ failure to adequately research their medication or warn about the potential risk of cleft lip or cleft palate when Topamax is used during pregnancy.

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  1. Belinda Reply

    I have been on Topamax for 2.5 yrs, my job is at risk and I just went back in June after a 2.5 yr sick leave. My memory is crap, I cannot retain anything. Headaches and migraines are down to about 2 a month Lost 115lbs which is great, but everything else is crazy, i have suddenly developed allergies to food I have eaten all my life, my glands start swelling all of a sudden out of the blue for no reason. Oh and yes the tingling fingers are just the bomb. Calgon take me away!!!!!!!!!!

  2. Amy Reply

    Just a short comment to add to everyone else–I was on Topomax for 12 years and I suffer from many of the same problems mentioned above. I had problems with cognition, word recall, severe suicidal thoughts and permanent loss of memory. All of this has affected my life, my independence, my family, my job and the ability to hold a job, but the most negative effect I’ve felt is memory loss. I have trouble remembering no matter what the time frame–last month, last week or 5 minutes ago. I had memory testing done a year ago and we found that I have only 5% recall. Seeing that the average recall is between 30-60% I have a hard time in many of my daily functions. From what I understand, there is not much hope for this to get better. I agree with anyone who wants this drug taken off the market. I really feel it’s ruined my life. After all, how can you enjoy life if you can’t remember it? Good luck to anyone who’s been affected by this drug. I wish you well.

  3. Christine Reply

    I am reading this and feel utterly sick. I had been giving this drug to my 6year old epileptic daughter for nearly 12 months. My daughter was on sodium valproate which was not controlling all seizure types and she was starting to regress. Her neurologist added topiramate. When she started taking it her seizures were mostly controlled for the first time in a long time but she began to deteriorate. It was like our little girl was gone and a zombie with no quality of life had taken her place. At the time I asked the neurologist ( quite a few times) if the medication could be doing this to her – neuro assured me no way – her many doctors were now investigating degenerative diseases/syndromes. My daughter went from speaking in full sentences to not being able to utter a single word. Her motor function deteriorated to the point he could no longer feed herself. She could only walk short distances and would tire so quickly, she could no longer operate an iPad – she lost all purposeful use of her hands. There was a period (about 2months after taking topiramate) that her right hand became completely parylised but then semed to fix itself (I would do daily rehab exercises with her). We had her on sustain and other high calorie foods to try and maintain her weight. It was a very confusing time. To think she was sent to so many different specialist to try and find out what was wrong … And all of them disregarded my concern of this medication. After many time asking the neurologist to wean her off (they were very hesitant to do so as it we finally had seizure control and the fact she was regressing befor topiramate confused the issue greatly) I told them I would be taking her off as I really felt the medication was contributing. It is now 4months after weaning and it is like a miracle has occurred. She is vocalising words again and her motor function is back. To think I had been poisoning her with this really does make me feel sick. I really hope my daughter does not have permanent damage from this. Neurologists and other medical specialists really need to take medication side effects more seriously. To think of all the time money and effort wasted by the medical system on investigating my daughters symptoms (it is not my own out of pocket I am concerned about – it is the unnecessary clogging up of the medical system!!!)- which a lot of it can now be attributed to this evil medication. Disgusting.

  4. Jacie Reply

    This medication Topomax did the best things to change my life and I owe it all to my doctor who tried it on me because he didn\’t want to see me suffer anymore from long time migraines. It also has helped with another medication to keep me stable from seizures from Epilepsy I was diagnoised with 17 years ago. I may not have gotten the most awful side effects I have read on here(it breaks my heart) to read all of that. But even now with a bone disease in my spine and cronic pain at 40 years old I thank the people who made this drug. No more migraines, yippee.
    Only a seizure if I get very unnessassary stress from the 20 a day I had. Ok I need reading glasses I don\’t feel tingling in my hands only my feet and legs that is from the bone disese I have and the herniated disks that keep coming out and where they were sitting it turns to bone. We all have our awful things to share that just isn\’t fair but it is how we decide to live out the rest of our lives with a smile or a frown, god bless..

  5. Crystal Reply

    Has anyone else had Top. make their perfectly normal teeth start to rot?

  6. Debra Reply

    I was prescribed Topamax because of its side effect of curving appetite. I am bipolar (schizoaffective type) and as a dancer when I started gaining weight with taking the Risperidone, my doctor recommended Topamax. She did tell me of the “dopa-max” side effect. I took it for a few months and it was clear that my ability to choose words suffered, especially notable when playing music live and forgetting lyrics — really a first. So I stopped taking it. I found out I was pregnant shortly after this and had to abort as it was discovered the fetus had Anencephaly.

    It’s been years since this happened and I have moved to a sunnier, less depressing climate and hardly need any medication for my illness anymore. However, I clearly still have the problem of substituting the incorrect word very frequently. Sometimes I notice, sometimes I don’t but others point it out. I would say it happens as frequently as 1-2x per day. This must be related to the Topamax drug. All the other medications I have taken over years never had this effect.

    I think it should be taken off the market and is a dangerous drug. I’m currently unemployed looking for work, but I am definitely not as sharp as I once was 🙁

  7. viola Reply

    I took topamax for about 4 years. It was prescribed to me for chronic headaches. I started having headaches at the age of 5 and am now 49. I experienced tingling,numbness in different parts of my body,I stopped sweating which caused me to have chronic itching when I became over heated or exposed to sun light. I started to experience chronic pain on my left side. Word loss, twitching in my eyes,pain behind my eyes, loss of appetite, weight loss of 35 pounds. My vision became a problem. I started to experience extreme paranoia and that was the last and final side effect that I could take. I have chosen not to go into great detail concerning all of the drama that I went through suffice it to say that this medication made my life a living hell.
    I stopped taking it 11 months ago and I continue to experience side effects. Actually in some ways its worse. my memory continues to be a problem, my vision improved some. The worst symptom I deal with is chronic pain all over my body and arthritis. Thank God the paranoia stopped, if I did not have a husband that was committed to me surely he would have divorced me.
    I understand this medication has been a God send for some but it was not for me, it changed everything and I know that my life will never be the same again because of it.

  8. Kristy Reply

    I’m afraid Topamax has caused me to have Chronic Kidney Disease. I was just diagnosed and am freaking out. I’m only 37, don’t have diabetes or high blood pressure. I don’t fit the norm for this disease, yet have it. Been taking Topamax for over a year. My migraines are less severe, but I’m concerned at what cost.

  9. Sharmila Reply

    Topiramate has changed my life . I woke up two months ago after taking this with a massive headache and went to bathroom. When I came out I could not see. I lost my eyesight. Slowly recovering I can see only 10feet in front of me. It is know for this.

  10. Amanda Reply

    I took Topamax for almost 2 years for migraines. I have memory problems, moments where I “space out”, and trouble finding the correct words for things quiet often. Also while on Topamax in 2009 I became pregnant. I asked my OB and my primary doctor is a mm of my medication was pregnancy safe. They took me off my muscle relaxers and anxiety pills but insisted numerous times that Topamax was 100% safe. My OB told me that he prescribed it to pregnant women everyday for headaches. Sadly I miscarried. My new OB 2 years later swears it was the Topamax. I had a clear fetal heartbeat then 3 weeks later my baby was dead. My OB had also upped my dosage at my 1st appt. I strongly agree with my last OB that Topamax killed my unborn baby.

  11. Laura Reply

    I am a 24YO female. I took Topamax from the age of 19-23. I was on 300mg a day for seizures and migraine control. While on the drug and in college I couldn’t take exams and was constantly forgetting things. I had a boyfriend during that time and looking back I can only remember big events, not any small details. I have been off Topamax for roughly 6 months. I made better grades and finally graduated. I used to feel stupid all the time, couldn’t come up with words and I was constantly “blacking out”. About 2 years ago I started having bladder discomfort. While still on Topamax, since I was a student I was of course tested for STD’s and they insisted me peeing blood was just me being a slutty college student. It took some pressing of my physicians to run some tests where they found an ovarian cyst. They removed the cyst (surgically) and I was still having problems. Finally the doctor realized I had a kidney stone but was shocked because of my young age. No one ever suggested I get OFF the Topamax though so I continued to take the drug. A few months ago I began having the same symptoms (kidney stone) so tests have been done and urine has been collected but the physician claims they are small stones that shouldn’t be causing issues. Every time I have a urine analysis they tell me there is blood in my urine, lots of it. I just wish someone would figure out what the heck is wrong with me because I was healthy until I got on Topamax. The newest urologist I saw told me Topamax is toxic and to stop taking it immediately, so I have but my symptoms are still here and getting even worse. I love to run and even if I drink 10 bottles of water a day I can still feel my body getting overly dehydrated. I would like a solution and I have yet to really find one. It is annoying to me that at 24 years old I am having all these health problems when I eat right, exercise and live a healthy lifestyle.

  12. Rhonda Reply

    I’ve been taking Topamax for about 5 or 6 years, at one time it did make my toes tingle, my doctor lowered my dose, I now take 200 mg, 100 2 night and 100 in the morning, I do constantly get sharp pains in my head, and my eyes hurt a lot (I always say in the socket) but me eyes feel like somebody has hit me in them, it would do it every so often real bad,, but now the pain won’t stop,,, I’m currently off work because of this, trying to figure out what’s going on, horrible pain in my neck,,, and my head just won’t stop hurting,, had MRI,, cat scan,,, even x-ray of my neck,,,, came back clean,,, I’m usually strong but iv’e been crying, drove for about 10 min the other day,,, that was it head was hurting so bad couldn’t drive any more,,,, (very frustrating) Sad,,,, not blaming the medicine,,,, I just wanna know what’s going on!!!!!!!! It’s something

  13. Heather L. Reply

    I have taken Topamax (brand name only) since 2000. 200mg at night. I have JME and have been on several medications before Topamax (lamictal, depakote, etc.). I have been seizure-free since. Sure, the medication comes with an array of side effects, as do all anti-epileptics. Your doctor should have explained these side effects to you. Also, you should have researched the medication yourself! Anything you put in your body you should research and ask questions before taking for a long period of time. I have had decreased memory/cognition, 2 bouts of kidney stones, weight loss, I don’t sweat, and many more SE’s. Although some of these are tough to live with, many people do not even notice them. I have graduated from nursing school, ran a marathon, met the love of my life, and now I have my dream job in palliative care! If you let the side effects take control, they will. If you choose to be proactive for yourself, stay healthy, and follow your doctors recommendations closely, you can thrive in life. Even while taking this medication! It took me a good 4 years to “get use to” the side effects. For myself, there is only one medication left to try and I will not take it unless this medication fails. I would rather have all of these side effects than have seizures. You control your body, not medication!

  14. Lelia Reply

    Its a horrible Drug!!

  15. Deepak Reply

    My wife has occurred seizure two times one 11 Mar 2009 when she was pregnant and second was on 8 Oct 2010. Currently she is taking medicine Topamac 50 mg twice daily and folic acid 2.5 mg once in a day.She wants to become a pregnant. She’s doctor suggest she can plan for next baby.If any body she can take medicine Topamac 50 mg during or is it harmful for her and unborn baby.

  16. tina Reply

    I was just put on the same medicine and was given the same side effects I have only been taking it for a week for hydrocephalus for the headaches that I am having with these comments this is a bad drug and it does need to come off the. Market I already have the side effects due tothe hydrocephalus I think that I might stop taking mines also I do not want to loose my eye sight or body functions that already happens with what I have don’t need any added extra thanks to you all for the comments it was very helpful god bless everyone ..

  17. Butterfly68 Reply

    Prescribed Topiramate – approx. October 2013 for trigeminal neuralgia. Other meds did not help with pain and made me too drowsy to function or caused other intolerable side effects. This helps with pain – doesn’t take it completely away – makes it tolerable – but also causes cognitive issues – I have problems thinking of words, slower thinking, problems concentrating and memory and also focus. The small plus is yes – it did help me lose some weight – about 20 lbs. that I was having trouble losing – the small positive. It also forced me to increase my water intake to avoid getting kidney stones while on this medication. If I’m not drinking enough water, I notice other side effects like tingling in my feet and also some pin prick chest pains.

    I also have ADD and this definitely makes those tendencies much worse. I also catch myself repeating words while typing and don’t realize it until I go back and check my work. Do a lot of transposing and sometimes still don’t catch that – almost dyslexic type things. I sometimes slur words or almost stutter words. I am worse when I am under pressure or when I’m nervous. I am currently taking 50 mg 2x per day. In January 2014 I had a flareup of nerve pain where my neurologist prescribed an increase in dosage – at that time I had been taking 75 mg 2x per day and I increased to 100 mg 2x per day and I wasn’t able to tolerate it. I was having bad side effects where it seemed as if my computer keyboard seemed backwards somehow. I could barely focus and it was extremely difficult to think. I backed down since them to the 50mg 2x per day and am thinking of trying to back down more however, my pain is worse as I do. It’s almost just as hard to think with pain in your face, teeth, nose, eye. But it would be nice to not feel as if you know your intelligence is there somewhere but you can’t quite reach it – and to not have people look at you as if they feel (and you feel) as if you’re as dumb as a box of rocks because you are taking so long to try to think of one simple word. Or you can’t remember the last four digits of the phone number someone just told you two seconds ago. Or they are talking too fast for you to write everything down quick enough and you can’t remember it all to take notes. Someone made the comment that their neurologist just blew them off as this was just part of taking the medication – that’s exactly what I got – and I feel like that shouldn’t be enough. Yet – I also feel like they don’t know what to do either when they’ve tried all the other medication there is to try and this is the one that actually works and doesn’t cause chest pains and a rapid heart rate, for example. Dumb as a box of rocks or chest pains? Or falling asleep at the wheel or at the desk at work? Or in excruciating pain? At the moment, the choice is dumb as a box of rocks but trying to find a happy medium – trying to find ways to help offset that somehow – if possible. Would like to also not be in horrible pain. Is that too much to ask? I hope not.

    Oh – depression is there too. I have to do all I can to fight to keep myself out of that bottomless pit and it hasn’t been easy.

  18. Chipper Reply

    Butterfly68, you just described my experience with it to a “tee!” I couldn’t tolerate 75 mg because I just became so ignorant and unfocused, so I’m back to 50 mg, and trying to wean off of it altogether.

    I currently take Savella with Topamax, so I’ll be keeping the Savella for now. Savella allows me to get out of bed in the morning, although it has it’s own side effects and was horrific to get on (those two weeks were awful!).

    I also started seeing a chiropractor. I can’t believe how much better that made me feel. I used to take pain pills all day long, and now, I’m down to one dose every few days. Amazing! I hope you find something to feel better soon! Hugs!

  19. Angela Reply

    I was put on topamax for a seizure.disorder. I took the drug for several years and no one could figure out why my vision was failing or why had parkinson-like symptoms (trembling, no balance, weakness, falling, stiff muscles, etc). All of my eye exams showed no reason for my vision loss even though I was reduced to a visual acuity of counting fingers at les than two feet, was seeing flashes of light and dark spots, seeing halos and starbursts around lights, seeing tracers and ghosting/multiple images, became severely photophobic, continually developed corneal ulcers/abrasions and uveitis and developed a severe color defect. According to many medical studies topamax can cause visual disturbances, including vision damage and loss. Since the majority of my symptoms were caused by topamax damaging my brain and not my eyes the symptoms couldn’t be verified by eye doctors. This caused me many years of being treated like a liar, faker and malingerer, which I was not. I have been of topamax for several months and my vision is still classified as legally blind (and getting worse).

  20. M Beth Reply

    There’s so much I want to write right now one that I’m so pissed off knowing that a dr prescribed this aweful medicine to my daughter after what I’m expierencing on it and to be honest I don’t think I’ll ever trust to put her on anything else after all the symptoms I’m going thru. My poor baby. Thank good I quickly got her off it just because I didn’t want her on meds at a young age and she was back home then. But I’m going through severe pins and needles in feet and pain in hands. Ringing of ears constantly of ears. Confusion. Never happened before. I was driving down rd yesterday and I couldn’t figure out where I was. Very scary and worst of all is the depression. In which now I have to be on a depression medication remind you all my medications were all fine until one doctor came in and screwed them all up and now I’m a super mess 🙁

  21. Fiona Reply

    I took topamax for intracranial hypertension because I knew I had to have tried it before surgery would be considered, I was on it at 25mg for 6 days last year, that was as much as I could tolerate, it doubled my symptoms,headache, neck pain, eye pain and more plus I turned into a total zombie, sleeping was hell and it added visual disturbances to the situation (pulse shynchrinous image in field of view of veins at back of eye) worst part is that I had to start wearing a hat around that time to keep my head warm and all this time later it’s been on my head 24/7 because my forehead goes bone cold if I take it off even in very hot weather! I just had a shunt fitted at last after hunting down a surgeon that would do it as I don’t have papilloedema, I hoped having the shunt would help ease the cold forehead, but so far ithas not changed, if I am stuck with a hat on for the rest of my life getting a new job is going to be impossible. His medication long with diamox are both evil, these doctors need to be working out how to test who is suitable for these meds before prescribing them.

  22. Scared Reply

    I cannot believe that this drug has been put our there on the market. It has undoubtably damaged people’s ability to provide for themselves and their family. It’s hard to imagine realizing that you have one medical issue and the medicine that you have been taking to help you has given you another. And this one will end your career, marriage everything because people at work don’t understand why u don’t remember things and your spouse doesn’t get it that it’s not because you don’t care that you don’t remember what they told you yesterday, you cannot retain anything in your memory anymore. But what am I going to do? I have tried every other medicine to control my seizures – what do I do now?

  23. Joy Reply

    i was put on Top-ax several years ago and after a long time, I felt like running down my hallway screaming. I was cutting my self terrible. I wean my self off of them i just couldn’t take it nerves have been awful and i have a bad case of memory loss. I cant walk straight and they cant find out why. My hands shake since then awful. It is so embarrassing I have been seeing a counselor and a psychic l ever since then. I cant work, because of the memory loss and the shaking I have to put up with my family saying i am crazy. I wasent like this till i took myself


  24. Brenda Reply

    I was on the generic topamax for about two months. At first just 25 mg and it did nothing to help my migraines so the doctor upped it to 25 mg – 4 X a day. After one month my eyes started hurting so badly and I was in Vegas so thought it was the dry air and smoke. I wear disposable contacts so once home threw them out. I put a new pair in and it was no better. I felt my eyes had something in them and were googy and it was even hard to remove my eye makeup. Worst of all I could not focus too good and developed a halo and double vision in both eyes. It seems to be getting a bit better during the day but it is awful at night. I am hardly driving at night since I have the problem seeing properly. I checked out the side effects and saw it can cause eye problem.. Now what am I to do???? I am so upset since I am single and have to drive…Ugh. This drug is awful since it can do such a job on your body.

  25. Cassie Reply

    Keep in mind I’m only 16 right now. 2013, my freshman year in high school, I was put on 75 mg of Topamax for my complicated migraines, I used to have absolutely perfect teeth and no problems except for the migraines everyday. Now I have had ovarian cysts (pretty sure I have another right now again), extreme tooth decay (it’s so bad that I will probably have to get lumineers or veneers or even fake teeth, I’m not sure yet what I might need to have my perfect smile again), I didn’t develop Celiac Sprue till I was on it. Also my jaw hurts horribly. Ever since I was put on this medication it has been health problems after health problems. I still have extreme migraines to the point I can’t even get out of bed, so you can imagine going to high school is hard when you can’t get up. I’m 16 years old, I just want to be healthy, happy, and have that great smile again. People used to say I have a Colgate smile, I want that back. Recently, my parents weaned me off of it, because it wasn’t helping anyways also. I’m 16 and I have teeth that look older than my great grandmas, they decayed so fast. They were fine till about October 2014 then by January they looked horrid. February I had my first ovarian cyst rupture, my doctor didn’t think virgins could have ovarian cysts. I don’t remember very much when I was on it, also when I was on it I didn’t remember much before it. Topamax ruined my teeth and only has caused me pain literally.

  26. Trina Reply

    All medications have side affects but I can honestly say if it wasn’t for Topamax and Keppra I would not be alive today. I flat-lined at 18 and am thankful to the wonderful doctors and nurses who saved my life. I am currently 29, have 2 beautiful daughters, all most finished with nursing school, and have been seizure free for 11 years. I carried both children while taking my medication and the doctors monitored my pregnancies very closely. I was very blessed that they both were born healthy and had no birth defects. I’m a true believer that this medication works if used properly, if monitored by a physician, and you have to take the good with a lil bad.

  27. dimples 37 Reply

    This drug has made my life a living ####… my memory is crap.. I would not recommend this drug to anyone ever…… I had tingling in my fingers and toes and the worst side effect is memory loss!!!

  28. Tammie Reply

    I had been on topiramate and phentermine for a little over a year for weight loss and started having episodes this past November, that happen about once a month, which includes sneezing and then my face swells up, mainly my eye area, my nose closes off and then sometimes in a severe case my throat closes to breathing easily. Of course I’ve been to doctors I’ve been to allergist and with no help I’m starting to wonder if it’s the medication? Anyone having similar side effects from this med?

  29. Jessica Reply

    I was given a high dose of topamax for seizures, and now I am unable to work, or perform the most simple of self care tasks. I can barely type this message because of the brain fog. I was hospitalized for a week, and now walk with a walker because I can not stand without passing out. I am tired and dizzy all day and can’t think straight. I’ll admit, I have had thoughts of suicide as well. Maybe from the drug, maybe because of how it altered my life from the happy, active person I was before to an invalid who can’t even take care of myself. I have had all the hallmark symptoms of a topamax overdose including aphasia.
    The 2 weeks of extreme weight loss and anorexia was not worth the lifetime of disability. And it did not stop the seizures.

  30. LB Reply

    I was on Topomax in 2009 for 9 months due to being diagnosed as Bipolar (actually it was a PTSD episode after being traumatized in concentration-camp style by a mentor). I had what I call “brain zaps” that would make me black out and then come to. I also remember being able to think clearly with one thought at a time in my head which was the good part of it. Things did not excessively bother me and I pretty much felt like I could “float” through life no matter who was trying to upset me.

    Unfortunately, now in 2015 I have poor short-term memory ability, have lost a couple teeth, have brain zaps still occasionally, and generally have suffered. The thing is, what if they had NOT had Topomax for me back then. It would have been Depakote which has its own share of issues and side-effects. I’m glad for Topomax but not happy about the long-term issues that came with it.

  31. Karen Reply

    I have been on Topamax twice; first from 1999-2008 and now for about a year. I thought it was a good medication. The first time, no problems. Sure there was the hand and feet tinging but that wore of. THIS time has been bad and I stopped it myself. I’ve been having terrible roaming body aches and pains. They rarely localize – they just pop up all over. Now my knees want to buckle under me when I’m in the tub. No position is good – I hurt no matter what. And, my legs jerk and quiver. Symptoms are worse at night (after 2 medication times). Another thing that was driving me nuts was the fact my sense of taste and smell is all messed up. I was having small visual hallucinations and smell hallucinations. I was already going through issues with my BiPolarism and memory so that I can’t be sure what Topamax’s role was in that was. All I know is I can’t take all these symptoms; I have to find answers. I was on 200mg/day both times so it’s not dose dependent.

  32. Adam Reply

    I’m 22 and was on topiramate for 2 months for Tourettes. Other than that I was perfectly healthy prior to this medicine. I began to develop panic attacks and quit cold turkey because I just wanted this drug out of me. After a week of pure Hell from withdrawals I was fine for a week, so I thought. Suddenly the panic attacks came back and I still have them every day and they cause a weird numbness in the left side of my body and I get random twitches in my body and I am also completely exhausted every day. The medicine worked until I began having the side effects. I have been in and out of the hospital all month because of the weird sensations these panic attacks give me and it constantly feels like my brain is on overload. Weird thing is all of my tests have come back normal. So now I am just awaiting my mri results to see if it caused any problems in my brain. I should have never been on this medicine and I feel for anyone that is still taking it. It is a toxic drug and I feel it is not safe.

  33. Terri Reply

    I had the run of the mill side effects the first couple of months..brain fog, tingling in extremities. .etc. Nothing since. This drug DOES work for some. Saved me from having back surgery for herniated discs. And is currently the ONLY med I take for pain relief versus my previous 80mg/day oxy addiction. Maybe keep that in mind..some of u..demanding this drug be yanked off the market. Thankfully. .it’s NOT your call to make..

  34. Abby Reply

    I was on topamax for no longer than 4 weeks. The symptoms became so unbearable that I stopped it myself, as I was only on 25mg, however, 6 weeks later I’m off of it but still feeling the side effects and they have significantly ruined my life. I became dysfunctional: my short term memory is gone, I forget what I’m saying mid sentence, I can’t remember how to drive to certain locations, I get confused about where I am. I get so confused that it caused me to take double the dose of my new mood stabilizers that I’m on due to the severe irritability the topamax caused me. All of my relationships are suffering; I nearly left my boyfriend of 7 years. My sex life is non existent. I became very suicidal and cut myself numerous times. My therapist of 8 years doesn’t believe me, she thinks it’s all in my head. I originally went on topamax for migraines and ended up so mentally dysfunctional. I’m in therapy and taking medications to treat the aftermath of the topamax rather than my initial issues. I’m so frustrated. I haven’t felt like myself in months, I just want to feel normal again.

  35. Donna Reply

    This medicine need to be taken off the market, it will kill you

  36. Beth Reply

    I was on Topamax and then the generic form for over 4 years. I have chronic migraines. I lost some weight but the affect didn’t last long. I had the usual side affects of tingling in handy and feet but I also started to have itchy scalp and half the thickness of my hair loss. I freaked out about that one. I have memory and dizziness issues as well. After I stopped taking it I still have memory issues and I have cataracts that have gotten worse. They went from barely noticeable to steering wheel white knuckles very quickly after I had stopped. I was not old enough to really get cataracts yet, there they are. I will have the surgery to have them removed but the lenses that are added and paid for by insurance will still cause a halo for me afterwards. To get the right cataract lenses it will cost me almost $4500.00. And I will still need glasses. Thank you Topamax. You are truly unforgettable.

  37. Cindy Reply

    I do not know what to say. If I do not take this med. I have no idea what my brain neurons might decide to do. I have had seizures for 11 years. This is one of the drugs that I been on for at least 9 of those years. It alone with the other ones I take keep my brain in order most of the time. I still get the side effects of the drug though.
    The positive one that I like is the weight lost. I never been severely overweight. Just a few pounds. I am short and birthed three children. When I started losing the weight it was a few pounds at a time. My clothes size started dropping. I officially Have gone from a size 10 to a 2/4 since being on this drug. Never dreamed that I would be wearing a size 2. Already wore glasses so can’t blame it on that for sure. Get the tingling all the time. As for memory….????
    Can I blame it on this?

  38. nisha Reply

    Took it for 2 months i had alot of side effects which i already knew where a possibility but i decided to give it a try anyway but after. About a month i noticed that my legs and stomach were rippling like dents and cottage cheese all over i qas wondering if anyone else had any of this while taking the medication…..i want my old body back too this for weight loss and bipolar disorder and ended up with a disqusting looking body at the young age of 29 i would’ve never taken it if i had of known about this this is the worst medicine in tje would

  39. Starr Reply

    I just turned 40 and I have been on Topirimate/ Topamax for over 7 yrs. In the beginning, it seems it helped but it that was over 5 yrs ago. Now my perfect teeth that I had braces on, had costly dental work is gone down the toilet. My teeth started to just fall out of my mouth. I could not believe it. I’m so depressed I won’t leave the house because I pride myself on my dental hygiene. I will probably need dental implants or veneers. My memory is a complete waste. My short term memory is gone. Simple words I may want to say in a conversation to someone I can’t seem to articulate. I can’t remember things from a month, a week and it’s gotten so badly now I could be talking to someone and within 5 minutes or so I’ve forgotten the conversation so I have to memo every important conversation in my IPad or Tablet. Jaw pain is absolutely painful. There is so much more but this drug is awful and should be taken off the market! My migraines by the way occur at least 15-18 days of the month and making Topamax has only made it worse!

  40. Lauren Reply

    Topomax is a poison, a neurotoxin. It is not a drug that should ever be prescribed for less than life threatening conditions, no exceptions.

    It can cause elevated ammonia in the blood and even metabolic acidosis, which I wonder is the reason behind why it inflicts such a high degree of cognitive and brain damage over long term use for many people.

    I was only on this crap for 21 or so days. In my case, I developed trouble breathing, tremors, fatigue, severe tingly sensations, and swelling behind my eyes that made them go bloodshot red (early stage of glaucoma). I also became dehydrated, something this drug is notorious for. I went from having plenty of energy to being physically very ill with a flu-like symptomology at 22 years old. I am also thinking it caused or contributed to muscle tone dysfunction and extreme tension in my face; my TMJ is screwed up now, and other facial muscles are not where they should be.

    I also am wondering if this drug is responsible in some way for the rapid hearing loss in the low frequencies I am experiencing. I started the drug on Sept. 3 at 25 mg. That week I noticed a bit of hearing loss; once I escalated to 50 mg, it was pretty predictable that I would lose a chunk of my low frequency hearing every day. When I started tapering off last week to 25 mg, my low frequency hearing started plummeting like crazy. My last dose was Sept. 21; a few days later, I suffered a 10 db loss in my low frequencies in a single day. It’s still going down really fast despite being off the drug.

    So there you go; just sharing a few words of wisdom and a personal story to warn people away from this drug! It will ruin your health!

  41. Crystal Reply

    I am so glad I found this site. I was put on Topamax right after having a stroke right I had a stroke at 37, due to pain and headaches. It has almost been a year now and I feel like I am slowly dying. The weight loss was no concern at first but now, I am loosing myself. I have every symptom I have read and I got a new neuro recently who finally after a year of unexplained issues, for the first time had full bloodwork panel done. I was sent to the ER due to the sodium level results the minute the dr saw me for a follow up so my money went to that and i have I have not had the money to go back to see what the Dr option is. However, I know my metabolic acidosis is scary….and I pray but yet fear each day what my next day is going to be like.

  42. Zack Reply

    I went on Topamax (the generic version) after I explained to my primary I was having 4 to 5 migraines a month. The medication stopped the headaches but gave me pins and needle feeling in my toes and heels. I went into my doc. And had blood work done and everything came back normal. I also had bouts of shortness of breath/ difficulty breathing. Unsure of it was related. The worst side effect is my memory loss and difficulty concentrating and forming sentences. This has played a huge impact in my personal and professional life. I quit grad school something I had been working on for 6 yrs. Because I couldn’t concentrate and focus. Very sad everyone in my family was SHOCKED! I then started having thoughts of sucide.. never attempted but I did have thoughts. However, as soon as I quit taking this medicine my migraines came back. This medication does act as a mood stabilizer for me and I feel like I can function more productively while on it. I feel I personally need to continue taking if I want to have a pain free life also. I think I just need to find the right dosage.. if there is a thing. I was taking 25mg twice a day. I’m going to cut this back to 12.5mg twice a day and monitor myself more closely and visit with my primary more often.. Warning, be very careful with this drug and use it with caution. It can be dangerous.

  43. Kelly Reply

    I took this medicine only 2 months and had the effects of driving somewhere and not even remember how I got there or why I was there. And then there’s other times where I could watch a movie with my kids and then it got so bad for her I wouldn’t even come out of my room with me I was just so tired and then also I couldn’t remember who I was who other people were. It was a horrible drug and I see some of you guys 12 years year and a half I just hardly believe you guys could stay on the down low cuz I was on it for 2 months and it affected me that bad I guess people are different than other people I just don’t understand but that medicine must be up I’ve been off that medicine for like two and a half years now and I still have memory loss. Sometimes I cannot even I can’t come up with the name of a street the name of what I’m trying to say and I mean I know but I’m what I want to say that I can’t just I can’t come up with it out of my head and it bothers me really bad. Sure I can’t remember where I’m going or what I’m trying to do or if I go into another room why did I go in there or I go to another town and I had to call my husband why did I go to this town and he’s like I don’t know anybody I don’t know what you went there for. And just really bothers me and makes me cry to know I have really severe depression over it

  44. Melissa Reply

    I’ve been on Topamax for three years and just found out i have renal cysts on both my kidneys. A “rare” side effect. I am scared to death, certain the cause is this medication. I don’t know what I’ll do.

  45. Lana Reply

    People all I can say is get off the Drug now!!! before you have any damage to your once healthy body. I just found out I have Glaucoma facing laser surgery on my eyes. If that’s not enough eye surgery. The Dr. told me I was a year from losing my eye sight completely. Very upsetting for us all.
    (Eye drops for the rest of my Life)

  46. Mary Reply

    I was on this drug for a little over four weeks. Every symptom in the book–incredibly dry mouth, ulcers in mouth and tongue, loose tooth, vision problems. The doctor who prescribed did no oversight, so my primary care doctor ran a blood panel. She called me on a Saturday to tell me to go to the ER immediately, as my white blood count was 2,500% above normal. They put me on a full course of steroids, but I was still so addled in mind and body I tried to kill myself a week later. If this drug helps you, great. But it nearly killed me–anyone taking this drug should have weekly blood work for at least the first month.

  47. Melissa Reply

    I had beautiful teeth, 7 years later they have halfway rotted out. I would have never taken it if I knew this was going to happen. I have no insurance either so I suffer.

  48. Christina Reply

    I took topiramate for a short period of time starting in 2017. At the beginning things were good. My migraines were gone and I lost a little weight. Then after getting a refill I noticed the pill looked different. My life will forever be changed after this refill. My migraines came back (or so I thought) my vision went from 20/20 to not being able to read a giant sign. I talked with my primary care dr and she said the vision problems were from the migraines. While I did have vision problems while having migraines this was completely different. It was only in my right eye and it stayed even when not having a headache. Work was crazy busy and I put it off since my primary dr said it was fine.. (dont ever do this). I called my optometrist office and they said I couldn’t see them because it hadn’t been a year since my last appointment. I finally got in with an opthamologist through my health insurance and found out my pressure was 38 and my angles were very narrow and I was having attacks. I was sent to UCLA within a few weeks. I have since had 2 laser procedures and 6 eye surgeries between both eyes. While it started in my right eye once stopping the pressure meds for my right eye it caused my left eye to have attacks as well. My vision which was perfect to begin with is at the point where I cant even get the correct prescription needed because my eyes are so different. I wish I never took this medication. It has made my life hell for the last 2 years.

  49. Jennifer Reply

    You can’t “respond” to others on here, but I want to comment on Lauren’s post from 2016. this is the first time I’ve seen anyone post about facial changes. I took the drug at 25mg/day for three years.

    I stopped in the last year because I felt like it was ageing me. I mean my gorgeous skin and plump cheeks were headed south. My skin tone kind of changed a little. Anyway, I had been on it because I have compulsive tendencies and it really addressed that. I trusted my doctor. he only told me about the most common side effects. “Dry skin” which is listed on the scrip, is far from “this med will dry out your whole body and fat and muscles”. Has this happened to others? I am trying to gather anecdotal evidence to give to Jannessen, the maker of TM.

    I HATE that my whole life I’ve dealt with anxiety that results in depression. But I wish I’d known what I do now. I would have never traded premature ageing for being 10 pounds less. I would have doubled-down on therapy or something….

  50. Jennifer Reply

    Also, call the FDA. The more complaints they get, the more we can do to illuminate the full range of side effects. (1-888-463-6332).

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