I have been on it for two doses. You have all given me good reason to question my choice if not stop. I wonder if I can just stop taking it..

Share information Well I been on this drug for over three years and I went from 180 to 132 and I thought it was great until my doses was increased and within six months had many side effects I had eye pain and redness and when I finally went to the eye doctor my presser was 28/29 and with the high amount of this drug I have acne which I had been clear since I was a teen also in this time period is when I lost the most weight about one year after taking this drug also had gailstones For me this drug was use to treat migraine and I was not told about the side effects I would have not known about the side effect until this week when I went to the company website and saw all the warning about the drug . you wish to be published on this page…

I took topamax for 10 years at a dosage of 200mg a day. . . whilst i was on it – i can only say great things. . yes i did occasionally have tingling sensations – and i lost a phenomenal amount of weight. . .(although it piles back on when you stop nearly as fast as it came off). .. but I want to know if anyone came off topamax and had problems getting pregnant . I’ve been trying for 2 years now – even with the help of IVF. . and i’m concerned that this drug caused major issues 🙁 Has anyone else experienced this?

Was on topamax and was told by the doctors i need this dont even suffer from seizures. took 2 years out of my life couldnt function was very depressed. saw a new doctor and the doctor said why are you on this took me off feeling better but now have to try to do small steps from being out of the world its hard to get back into it. dont reccomend topamax felt like i was going to die.

I’m sorry for the people that have had such awful experiences with Topamax (topirimate), but you can’t put all the blame on the drug maker, and/or the doctor. When you were prescribed Topamax did you fill your rx at a pharmacy? Sure you did. Yes, some of you were given samples, to slowly titrate you up to your targeted therapeutic dose. In that sample pack would be a list of the most serious side effects, and what to do in regards to each side effect (ex: parastethesis, blurred vision, heart burn, etc.). Did you read the paperwork with the samples? Eventually, everyone would get their prescription filled at a pharmacy. When you picked up that rx, you are asked if the medication you’re picking up IS NEW, or if you have any QUESTIONS for the PHARMACIST. You sure as heck better have said yes. That’s when the Pharmacist tells you allll about the side effects, especially the increase in IOP, AND suicidal thoughts. The Pharmacist is the one who knows all about medications, not the doctor. It is your responsibility to educate yourself about the medications you put in your body. When you pick up your medications, if it’s new, you sign a document stating you’ve been offered counseling and understand this is a new drug; you will also most likely sign something in regards to HIPPA. If you get your meds through a mailorder pharmacy, depending on the pharmacy, you will either get a drug printout for each and every drug you get, regardless if it’s new or not, or you’ll get a phone call, in addition to the printout. It irritates me when people say “the doctor didn’t tell me all the side effects”. It’s not your doctors job to know allll the side effects, the drug interactions, dosage forms, of a drug. It’s the Pharmacist’s, but it’s your responsibility to educate yourself about a drug before putting it in your body. No one can do that for you, except under very restricted circumstances and I don’t think we are talking about those. I just have to add, in regards to vision disturbances, vision changes, and vision changes. THESE ARE ALL SERIOUS SIDE EFFECTS AND YOU SHOULD CONSULT YOUR PHARMACIST IMMEDIATELY. Topamax can cause an increase in your InterOccular Pressure, also known as IOP. When your IOP is greatly increased, is is called Glaucoma. It is recommended to get an eye exam, and have your IOP checked BEFORE, or at your last eye exam, so you have a baseline IOP, before starting Topamax. At the first sign of any VISION DISTURBANCE, you should be calling your PHARMACIST. Your PHARMACIST can safely recommend a decreasing titration schedule for you, if you need to come off of Topamax. You should NOT just stop taking Topamax (topirimate). It’s like many, many other drugs in that you have to slowly work up to a therapeutic dose, and you have to slowly work down from the therapeutic dose. I’ve been on Topamax for over 12 years. In the beginning I had parastethesis and trouble with word recall and my head was in a fog. Considering I was taking it for migraines, I was okay trading the head fog/word recall for a migraine free life. I also lost 50lbs in a year. I’m now migraine free and the happiest I’ve ever been. I see no reason to get off Topamax.

I took Topamax for aproximately 3-4 months. The side effects were horrible! I have been off the medication for years, but still suffer memory loss, trouble with concentration, vision blurriness. Prior to taking Topamax, I never had these issues. I work for a university and literally have to write down anything to remember it. Somedays, I think my husband thinks that I am lying about not remembering conversations we have. I have trouble remembering the lyrics to a song on the radio, wat words to use in constructing a sentence and even remembering someone’s name. There are times when I will just break down and cry in frustration. It is depressing to know that you are not the same intelligent, vibrant young woman you were before taking Topamax. I am 32 years old with the memory and attention span of a 3 yr old. It’s incredibly frustrating. I am so glad to have found this page! Thank you all for sharing your stories. It is helpful for me to know that I’m not crazy and that I’m not just making this all up. I sncerely hope that we can all overcome the damage this horribly dangerous drug has done to us.

I started taking topamax in December 2011 bc of migraines & seizures. I started out w/50mg twice daily. This was an added medication to the long list of 6 others I was taking. I have Chiari 1 Malformation, seizures & Fibromyalgia.. Before topamax all my medications was fine no problems. Within 3 weeks if starting topamax I could no longer speak a sentence, could barely walk, vision jumped and could no longer remember how to spell simple words. I went from a person who missed maybe 3 days a year from work from being sick to being off work for a month & a half. My doctor would not admit to this medication being the problem so I contacted my pharmacy & told me there was a reaction & stop taking it immediately. I stopped taking it & several other of my meds that could possibly react with it a month ago. I’m still not back to work, still studder, problems walking some days & still shake. So now tomorrow I go for a brain & spine MRI because doctor now thinks its something else. But since I’ve stopped the meds I’ve slowly started to get better. I mean somewhat healthy one minute to someone who appears to have a stroke the next. Come on I took those other meds far to long & no problems. Take topamax & within 3 weeks I appear to have a stroke. Not saying for sure but will now more tomorrow.

I went off Topamax, which I was taking for depression along with Wellbutrin XL. I had been on the Wellbutrin for many years and continue it and have never had a problem with it so I know my symptoms aren’t from that. I started gettting carsick about 1-2 weeks after stopping Topamax and I was the one driving! I had to pull over and get sick and then almost passed out. I knew I couldn’t drive and by the time my husband and son came to pick me up I was having some numbness in on my right side. My brother had just had a stroke less than a year ago and I was so worried this was what was happening. My husband took me to the ER. They kept me overnite and did every test you can imagina, CT, EKG, MRI, MRA , and a whole list of bloodwork. They could’nt find a thing. They ended up diagnosing it as a complex migraine. I now know after going to the ear, nose , and throat doc, that you don’t need a headache to get a migraine. He diagnosed me with vertigo. When I asked him if the Topamax could’ve caused this he said, “yes”. I already knew the hairloss I suffered was from it after reading other online talk about Topamax and now reading all of this(which I couldn’t believe the number of responses!) I know now why I drove threw a redlight and then went to the store and left my car running and went to go in . Luckily my daughter was with me and asking what was wrong with me. My memory got increasingly worse. I would stop midsentence and forget what I was saying and couldn’t think of the dumbest words. Now after being off of it for about a month and a half I am getting these dizzy spells and not always the headache that goes along with the migraine. Jus the not being able to focus. My hands get incredibly shakey and I overall am not with it. I don’t feel like myself anymore and after readign this I have cried all morning. I just started a new job and yesterday was the worst. First I babbled on the phone trying to take an appointment. My boss was watching me and I know he thinks I’m a complete idiot. I know I keep asking the same questions repeatedly and I can’t seem to grasp what people say to me . It’s like the information going into my brain is delayed so I’m concentrating so hard to hear them and then I miss parts and have to ask them what they said again, not just my boss , everyone. It’s a dog grooming business and there are at times 9-10 people working a small area. It’s extremely loud with the dryers and I broke out in a terrible sweat , and had the worst anxiety. My hands were shaking so badly I couldn’t hardly write down an appt. Someone was watching that too. I know as soon as I left everyone was probably talking about me. I know I would. I just started a week ago and I’m having such ahard time I want to quit. I don’t think it’s safe for the dogs and it just seems to get wore everyday that I’m there and I’ve only really worked 6 days in the 2 weeks. I feel awful because the managers are very nice and I’m so embarrassed to call up and quit but I don’t see how I can do it. The feeling of dread everytime I think about it is overwhelming. I also have terrible insomnia, worse although I had it on Topamax, since I’ve gone off. I called my doctors office today and asked if they could possibly write a note or letter . Anything to explain to them that this isn’t something I’m making up. I will ask them if they noticed that I was “off”. I’m just dreading the phone call. I can imagine how much I’ll stammer and forget to say. I honestly can’t believe this drug is still out there. For those of you who have had good experiences great. Mind you I was on it for a few weeks before I started having symptoms and when I lost a third of my hair in a 2 week spand I freaked ! What I’m seeing here though , the people with devastating and long lasting if not forever effects , far outweigh the positive responses. For those of you who lost someone from Topamax I am so terribly sorry for your loss. It seems like with all of this evidence (look at far back these comments started!) they would stop making it. I’m all for a lawsuit. Just waiting to hear about it.

my wife was given topamax for back pain.she had memory loss could not concentrate trouble walking stuttered and other problems.she was at work (in the medical field).they took her to a conselor they should have taken her to the hospital.she almost lost her job while on the medication she leftme.i was so despondent i tryed to commet suicide.i lost the dog (who was 12yrs.old)that used to be my work partner.thank god she is off the topamax now.she still has some side effects but we are back together.despite losing our home because of all that happened.

I have been on topamx for 2 almost 3 years now and I am getting tottally scared about the side effects I am having. Let me first start out by saying I thought this drug was a miricle drug because for years and years I have suffered from migraines and tried every drug and none of them worked for me so when I came across Topamax I was so excited it took awhile for it to work I had to keep raising the dose until I am now steady at 200mg a day. I had severe side effects well one that i liked lost 30lbs but the ones that was not so pleasent is the memory loss words jumbling and mumbling together forgeting where I was in a conversation. My husband actually asked me if I was on drugs illegal drugs which I have never touched inmy life and was very offending to me.. I was on the prescribed drug Topamax. I had the numbing and tingling in my hands and feet that yes eventually went away after months of taking topamax but I want having a migraine. Through all of this I tried to stay positive with all the negative side effects and body changing things that were happeningto me hair loss was another one my hair would come out in hand fulls. It has now stabilized the side effects seemed to mellow (tingling,memory loss the smaller stuff) my aches in all my joints and wrists keep getting worse I can barely even walk some days I am 32 years old.Reading all these post I feel I have found the cause of all my problems I am going to stop Topamax and deal with my Migraines before I can not walk any more. I am going to have tests done on my muscles and bone density to see what the damage is users BEWARE! Now to begin getting off topamax wish me luck..

I’ve taken Topamax for migraines since it came onto the market. It has been the only effective medication. My only issue has been quite a few kidney stones.

I took Topamax in 2006-2007 for 10 months and throughout that time my migraines stopped. The longer I was on this medication the more I noticed a lot of changes in myself such as confusion, loss for words, stuttering, short term memory loss, horrible trouble concentration, numbness in fingers and arms, hair loss, my eye sight had changed and a strong pressure behind my eyes. My Doctor told me that she was concerned about the pressure behind my eyes and took me off of Topamax. She said that Topamax could cause glaucoma in some patients. I feel that this information was 10 months too late and that I would have liked to been told that before I even took the first pill. In the past 5 years, I have not had as many migraines however, I still have most of these side effects. The concentration and confusion is the hardest to live with. I was taking college courses during this time and I noticed a huge change in my study habits, tests, and ability to learn. Recently I took a few more classes and realized I had the same problems. It would be different if my career choice was not working with the public. I went to school for xray and mammography, this is not a job where I can fall short, be forgetful, or not be able to explain the exams to my patients because I can’t get my thoughts together. In the evening when I’m tired, my speech gets worse. I find myself giving up on any conversations because everything I say gets jumbled up as it comes out of my mouth. When I’m trying to say one word something else comes out and it becomes very frustrating not only for me but for the people that I’m speaking to. In a house where I lived for 12 years, I would open a door to go into the bathroom but open up the closet door across from the bathroom instead. These are just a few examples of the many things that I live with everyday. If I had known that I would have all of these side effects and that they would stay with me forever, I would have never taken it.

Topamax has been a LIFE-SAVER for me. It has pharmaceutically “fixed” my suffering of painful, debillatating, chronic cluster migraines that lasted for 30 days or longer. Yes, I do miss words when I speak and type. Sometimes, I cannot remember where I left my car keys. I have to make sure I drink enough water daily. It’s ALL worth it to me. Oh….and I have not lost a pound – the one side-effect I WISH I had! I’m so sorry for all of you who have had such a negative experience. That’s not fair nor do you deserve to suffer by something your taking to provide you with solace. But, for me, it’s been a very positive, life saving drug.

My 18 year old daughter was given Topamax for migraines. She was on the medication for (25mg) 1 week and then 50mg for the next week. Her hands started to shake and the doctor said to step back to 25mg. The third week she started to get diahrrea and loss of appetite. I immediately called doctor and told her that she was not taking the drug any longer!!! It has been two weeks since stopping the drug and still waiting for appetite to return to normal. Please do not take this drug without knowing all the side effects FIRST!

I need help…this medication has destroyed my life.

I think this medication needs to be pulled from the market, it has serious side effects that people with migraines are not told about.

I don’t take the exact version of Topamax, I take the generic version Topiramate and it is 100 MG each night. I had been suffering from killer headaches all the time and went in for an MRI. The Doc gave me the results and I have a slight slope on the cerebellum which is a small case of Chiari Malformation, but not enough to result in surgery. I have no blockage of fluid so there is no harm of the slope. It could have just been a birth defect. I will be going back in February to see if any change has occurred in the slope. When going up I played physical sports and got pretty dinged up in hockey never got checked for concussions. I use to complain alot about small headaches and just took advil, I also had a pretty decent car accident and hit the head off the steering wheel and got cut open, but the doc never have me a concussion test so I do not know if the head aches or migraines today are caused from the slope from the chiari malformation or some form of a post concussion type syndrome effect. They say after one year of post concussion if it does not go away it will just last forever with lingering effects. Sorry for the long story, but the Topirmate has been a savior for me and I also have to take Meclizine for my motion sickness that I get which makes me think that most of my headaches could have been caused from a post concussion since they where like a nausea type feeling. As far as the blurred vision goes, I did get a blurred vision, but I thought it was because of my old motion sickness patch I was taking. I have 20/20 vision and have been taking the meds for a year. As soon as I stopped taking the motion sickness patch behind my ear the vision problems went away. I have not lost any weight, as a matter of fact I think I am gaining weight because I work on the road a lot as a service technician and have no problems with this pill. I have really not had a set back with this med and its been okay for me since taking it. The only time I really get an extremely bad headache is if I am sick which is rare.

Even though Topamax has worked wonders for me,I do have a great deal of sympathy for those who hav!e had problems with it

I am on 50mgs.of Topamax,25 in the morning&25 at night.I was prescribed topamax for stress related siezures.I did have a few side effects but they are gone.This medicine has worked wonders for me&I wouldn’t want it taken off the market,I haven’t had a siezure since I’ve been on this medicine.

There is not enough Proof YET to support any wrong doing and the studies don’t support the multiple claims of harm done by the drug. I came to this site because after a year of Topamax my biggest concern has been two things that I have noticed. #1 My vision has gradually begun to deteriorate to such a degree I need glasses all the time. #2 My memory/problem solving has been affected to such a degree I am alarmed. As for the vision, at first I thought it was my age…43 Then I thought it was my diet…I started juicing and drinking a lot of carrot juice. I have an inversion table. When I would invert I noticed it felt like my head was about to explode behind my eyes but I thought again, it was my age and I needed to watch my bloodpressure. My Neurologist told me the only side effect I needed to worry about was kidney stones. I took the drug for moderate intention tremor and it did help. The occasionally migraine was non existent. Sure I had tingling in my feet, soda tasted weird and I dropped weight from 145 to 130 but I shook less. Shaking less was better than the brain surgery for a deep brain stimulator implant. My body has already rejected three implants with severe infections in less important areas than my brain. I went back to the neurologist. He wanted to titrate me up to 200 mg but I told him the drug severely affected my depression the further up in dose I went. He didnt listen to me but I knew I better watch the depression so against his advice I stayed on 100 mg. I kept my dose at 50 mg at breakfast and 50mg at lunch so I could work through the day without shaking so much. The vision issue has gotten progressively worse. Concentrating at work has been hard and getting harder and memory/problem solving is not what it should be. I thought it was because I was getting older. I was diagnosed with ADD so I thought it was the ADD getting the better of me. Finally, I was so alarmed I decided to do a search on the internet of my medicines to see what in the world could be causing the vision and memory problems. Nothing came up and I had been on my other medicines for years…The only thing that has changed in the last year along with my vision and memory is that I have been on Topamax. I am a health care professional. I know that side effects are rare. I know you can read a list of them and then think…yeah, I need to watch out for that and before you know it there is a psychosomatic problem that was there just by suggestion. I didn’t know about the vision or memory issues but now that more people are taking the drug there has got to be more proof of the damage this drug is causing. I was fine with the tingling, soda’s tasting bad, weight loss…just annoying. However, I don’t know if my vision or memory will ever be the same. If this drug causes this type of damage then there should be studies to support it. I can’t find any at this time and there is no class action lawsuit for this drug for the reasons people have stated. I have an appointment with the neurologist and my general healthcare practitioner.

I have been taking topamax for about 12 years. On January 5, 2012 a kidney stone was surgically removed. There is also other damage to my kidneys which would be hard to because I also have been taking lithium since 1976. Lithium has never caused me the problems that topamax has. I am angry. Now the psychiatrist wants me to stay on it until she reviews the medical records but that is over my dead body. So now I no medication for my bipolar condition because I won’t take the chance of further ruining my kidneys. The medical doctors said quit taking topamax because that medication was the culprit.

my husband had a carotid artery dissection and was on topomax for years … after being on the medication for about 6 years — it literally drove him to be a different person …. he had mood swings, began getting migraines, had memory loss, weight loss, depression …. this drug is HORRID!

I think Topamax should not be allowed as an off label drug. Recently I took my son 13 years old to an accupuncturist who also happens to be a doctor for a weight loss programme. The doctor said in conjunction with the accupuncture my son would have to take Topamax, Lasix, Recreate and Oxy Elite. Seeing that the doctor was treating hundreds of people I thought the tablets must be okay (and after all he was a doctor). To cut a long story short my son became very ill sweating, shaking, he suffered memory loss, he was frightened to sleep because he thought he was going to die. Even though I told the doctor of the side effects he insisted we continued the medication and told us the symptoms were from something else.I believed him after all our aim was to lose weight and “you trust your doctor”!Finally I consulted our pediatrician who told me we have to stop the medication but gradually over a period of time as stopping immediately could be dangerous. Thank goodness my son is okay now._I feel like an idiot for allowing him to take this medication in the first place but as I said “you trust your doctor” . Since then a lot of people have come forward complaining about this doctor and the side effects they were having because of the medication. Including car accidents, suicidal thoughts, memory loss. This doctor gave Topamax to all his patients up to 800mg daily. So incase there are unethical doctors around poisoning vunerable people for the love of money, Being allowed to prescribe Topamax as an “off label” drug is like having a licence to kill.

I was given the topomax for two years, I had many seizures, headaches,confusion, unable to work for that amount of time. My emotions went down hill, depression etc. I did not leave my house do to fear of another seizure, no walks outside etc. For two years my family Dr and Neurologist fought about what was wrong with me,til finally the Neuro, said it was side affects do to the topomax I was taken.

I was only on topiramate for three days…worst three days of my life.I was put on topiramate b/c of migraines, 3-4 per week. I was told that there might be some tingling in hands and feet and slight mental confusion, to drink lots of water b/c of possibility of kidney stones. That’s it. Within two days I had the worst bilateral headache of my life, painful and red swollen eyes, and it felt as though someone had jabbed a thick rod from mid-back up through my neck and into my head. I lost the use of my right hand and my right foot would not set flat onto the floor, and I couldn’t talk, only yell simple sentences. It was as though the verbal connection in my brain had just snapped. I wanted to be dead, and right now. When I called the doc’s office I was told to go to the emergency room not because of the other symptoms, but because I was ‘suicidal’ — The words I used were, “I want to be dead,” not that I wanted to kill myself. When I read the phone report a few days later, it was written as though what I was saying was not to be believed, not that I’d had a reaction to the medication. The information I asked to be relayed to the doctor had not been relayed. I stopped taking the medication (that much the doc’s office agreed with.) My PCP scolded me for my attitude (two days later and still wanting to be dead, major headache, depression, etc.) It took two weeks to begin to feel normal again. Interestingly enough — I didn’t have a migraine for three weeks. I am not going to risk mania and suicide even to get rid of migraines. As a writer, artist, and public speaker I cannot risk loss of my hands, word retrieval, or speech. Which makes me wonder why my doc thought that paresthesia would be okay, even for a few months. There is a difference (to those of you who think that knowing about the symptoms is all one needs to know) between tingling fingers to someone who does one kind of work, and loss of use of one’s hands in someone that does tactile work. (Bet a neurosurgeon wouldn’t risk that, right?) A living is a living. I read all of the comments here and it’s interesting to note that the people who fared best oveall were not people with seizures or migraines. They also seem to be very judgmental (or is that unrecognized cognitive impairment also?) And that’s the problem that is posed for anyone who takes a medication that can cause memory loss and/or confusion, depression, etc. People whose cognition is severly affected by this or any medication very often is not aware of what is happening or how to describe it until it is too late. Because this medication also can interfere with verbal response, effective communication can be next to impossible, and with the surge in immediate dispensing of SSRI’s when anyone expresses that they feel apathy/depression, the patient is often patronized – damned for being mentally unbalanced when the drug may be causing that. (So, Jacob, I have experienced what you have in that regard –in some circles the treatment you got is considered emotional abuse.) Even if someone were mentally ill, that is NO reason to not entertain what they are saying. It’s nice to say, too, to take charge of one’s health and medical care, but some people are very limited as to their choices, and in some places, medical appoitnments with neurologists are difficult to get. In my area, the neuros take zero self-referrals and the docs play for about 3-5 years with their own ideas before referring — that’s the way it is.

I suffered from migraines from the time I was thirteen years old, and they plagued me for almost nine years. With these migraines, I would get strange spells where I would sort of space out and just feel like my body was receiving shocks from the inside out. These got worse, and so did the migraines, until I ended up having a gran mal seizure a month after I turned twenty one. I ended up in the hospital with another and was prescribed topamax. I was relieved that finally, all these horrible symptoms would go away! But compared with the hell topamax brought upon me, they were a minor inconvenience. I was on 100 mg’s twice a day. I was losing my memory, dry heaving, having difficulty concentrating, losing my hair, getting tingling in all of my limbs… I was born totally blind, so vision changes weren’t a concern for me. But I read braille. Not possible with numb fingers! I was growing agitated, depressed, and several times thought of killing myself. I almost went through with it one time and have my best friend and my boyfriend to thank for saving my life. I lost about forty pounds, too and clothes I wore in my freshman year of high school were too big for me. I was hungry all the time, yet ironically, the very thought of food made me ill. Parts of that time period are hazy to me, like part of my memory was rubbed out. I could not sleep, I got shaky, and with all this, my parents wouldn’t believe me… I felt so alone! Oh and guess what? My seizures came back! The doc’s plan? Increase the dose of this poison I was on. I wasn’t going to have it! I was in the middle of college, this stuff was messing everything up, and I wanted off. The doc wouldn’t take me off. Instead she wanted to prescribe more medications to handle the symptoms I was experiencing. She had the audacity to tell me it was all in my mind! In order to get off of this stuff, I had to threaten her. I told her I would find another doctor and she would lose my business. I was promptly weened off and put on Lamictal, which has worked wonders for me. People, if you are taking this stuff, get off! Do whatever you must, but get off! Because it could ruin your life… it almost ruined mine. I would rather have dealt with anything but this crap! It needs to be taken off the market, and soon! And if there is an active petition for this anywhere, let me know, because I, and the people I love, will happily slap our names on it!

O yea, I wanted to add that, my neuro told me on my last visit to take a 1000 vitamin D pill everyday because topamax does something to your bone density, weakens your bones or something like that. I was like OMG! Another side effect. This drug is very dangerous and the risks definitely outweigh the benefits. I had 2 healthy babies on topamax, THANKS TO GOD. After reading all of the dangers, Im definitely not having anymore. My nero/gyn sent me to a perinatal place that first put me in counceling to tell me what could possibly happen to the baby because of my meds. They gave me 2D/3D ultrasounds there so that they could better see and detect any malformations that could occur.

When I first started taking this drug I loved it. I have epilepsy and this drug gave me 100% seizure control. Initially it made me loose TOO MUCH weight. BUT, after I had my first baby, I didnt have to go on a diet to loose the baby weight. I loved this drug. I could drive, work and all sorts of stuff because its like my seizures had disappeared. Sure I had the tingling of the hands and feet but it would only last minutes, so I could deal. Over a period of 9 years I have been on this drug in high dosages. This drug has f’d up my memory sooo bad! I donot remember anything from my past and I can barely remember how to get around my own neighborhood! This drug is very dangerous when taken in high dosages. My housband would talk to me or we may be watching a movie and I would be so sleepy that I couldnt keep my eyes open. This drug has also affected my sex life. My sex drive went away after taking this medicine. I still take this medicine because it is the only drug that control my type of seizure. My other 3 options are: have brain surgery or try another drug that could possibly give me seizures. I was also asked to participate in a study where they are trying out a alzhemers medicine on epilepsy patients with memory problems. I dont want to do any of these BUT I have to get off of topamax! Putting this one in God’s hands. Please pray for me. I want to be in my right mind within the next 10 years. I am only 32

I was on Topomax for one year for severe migraines. I started having my ankle give out on me. I tapered off to get pregnant. After my son was born I needed surgery for bone death of the talus. I have sever aritus in the other ankle. Joint pain. Before takng Topomax I was active playing sports felt like a 20 yr old. Now I sometimes use a cane to walk. I am only 32 yrs old. I just read about metobolic acidosis in Topomax. The timeline adds up exactly!!! Can you please contact me.

My only complaint about topamax is the kidney stones and hair loss. Other than that it was a miracle drug for me. Stopped my migraines, in fact they are in complete remission now since I started taking it, even though I stopped taking it two years ago. I was 115lbs overweight and lost it all in a year with the help of topamax, and it helped my tremor. I stopped taking it because of the kidney stones and because I felt it was damaging my kidneys…but it was good for a while.

I’ve had a long list of long term damage from this drug, but have remained on it. My Neurologist has always insisted that my issues were genetic and that none of them could have been connected to the meds that I was on and certainly not Topamax. After reading more of the news coming out and what more of the patients have been saying I’m less trusting of what my doctors have to say. If anyone organizes a law suit I have a bunch that I’d like to say to this company. Please contact me, Theresa

I’ve been on Topamax since 2000 for migraines. It use to be that if I was out in the sun, even with sunglasses, I would immediately get a migraine. My neurologist (the best in my state) had tried all of the latest drugs. They seemed to work for everyone else I knew who took them, but they didn’t even touch my migraines. I was finally put on Topamax and Neurontin. About a week after I started this regimen I left work one day and got outside and realized I’d forgotten my sunglasses. Then I realized that I was standing there, in very bright sunlight and I wasn’t squinting. I looked up towards the sun and still, no squinting and no headache. I was thrilled and called my doctor to tell her. My doctor had explained ALL of the side effects and asked me if I wanted to try. I also read on the label, which stated all of them. So many of the ones that people have mentioned here, I have but the only one that really bothers me, is the cognitive impairment. People who know me will help me out and we laugh about it. When I’m around people who don’t know me, and I lose my thought or my speech is a little slurred and I feel like I’ve just made a fool of myself, I usually tell them that I’m on medication which causes this. I’ve gotten use to the side effects except for the vision stuff, but I’m 55 now and after 40 your vision starts to change anyway. I’m sorry for all of the people who weren’t told about the side effects when they started taking it. You can go to the Mayo Clinic website and it will list them all. Also, if you read the list of side effects on so many medications, most of these side effects are listed, including, “May cause thoughts of suicide.” Even the commercials for a lot of the drugs say that. If you are really feeling suicidal, it could be something else. I am also Bipolar and some of the posts here indicate that there are other problems than the Topamax. Just sayin’. ps Excuse any typos as it’s probably the Topamax.

Topamax has worked wonders for me and has enabled me to function, drive, have children, be married, and live a “normal” life, or whatever normal is. When I was first diagnosed with epilepsy at the age of 13 (I am now 34) I was put on Dilantion..I was pretty much a zombie, grades slipped, no interest in anything..so they switched me to Depakote…bigger mistake!!! Even worse side effects, I started acting out, had no desire to do anything productive…but once I turned 18 I had enough, my new neouroligist put me on Topamax and life changed. I enrolled in college and now I have a wonderful life. The only negative effects I have is the numbness from time to time and also the memory loss really sucks especially when you have kiddos.

Cognitive/Neuropsychiatric Adverse Events Adverse events most often associated with the use of TOPAMAX® were related to the central nervous system and were observed in both the epilepsy and migraine populations. Cognitive Related Dysfunction (e.g. confusion, psychomotor slowing, difficulty with concentration and attention, difficulty with memory, speech, or language problems, particularly word finding difficulties). Psychiatric Behavioral Disturbances (e.g. depression or mood problems) Somnolence and Fatigue (e.g. drowsiness, sleepy, tired) Kidney Stones: An explanation for the association of TOPAMAX® and kidney stones may lie in the fact that topiramate is a carbonic anhydrase inhibitor. FDA Instructions for Doctors: Patients should be warned about the potential for somnolence, dizziness, confusion, and difficulty concentrating and advised not to drive or operate machinery. Reporting Topamax Side Effects: You may report side effects to the FDA at http://www.fda.gov/medwatch/ or 1-800-FDA-1088 (1-800-332-1088). Side Effects and Warning From Topamax’s FDA Required Prescribing Information TOPAMAX® is approved for migraine prevention in adults only. FDA Reported Side Effects Numbness and tingling This is known as paresthesia and is the most common side effect of TOPAMAX. People have described this as numbness or “pins and needles,” most often in the arms or legs. Fatigue Some people may feel tired while taking TOPAMAX. More people reported fatigue during the early stage of treatment. Weight loss Some people may have weight loss while taking TOPAMAX. This seems to be related to the dose of TOPAMAX taken. Difficulty with concentration attention and difficulty with memory TOPAMAX may make it hard to concentrate. Some people may have memory recall issues. This reaction varies, but people have described it as “difficulty finding the right word” or “losing my train of thought.” Other common TOPAMAX side effects are loss of appetite, nausea, diarrhea, and taste change. Warnings and Precautions TOPAMAX® may cause eye problems. Serious eye problems include: sudden decrease in vision with or without eye pain and redness; blockage of fluid in the eye causing increased pressure in the eye (secondary angle closure glaucoma). These eye problems can lead to permanent loss of vision if not treated. You should call your healthcare professional right away if you have any new eye symptoms. TOPAMAX® may cause decreased sweating and increased body temperature (fever). People, especially children, should be watched for signs of decreased sweating and fever, especially in hot temperatures. Some people may need to be hospitalized for this condition. TOPAMAX® may cause suicidal thoughts or actions. Pay attention to any changes and call your doctor right away if you have any of these symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying, attempts to commit suicide, new or worse depression, new or worse anxiety, feeling agitated or restless, panic attacks, trouble sleeping (insomnia), new or worse irritability, acting aggressive, being angry or violent, acting on dangerous impulses, an extreme increase in activity and talking (mania), or other unusual changes in behavior or mood. Serious risks associated with TOPAMAX® include lowered bicarbonate levels in the blood resulting in an increase in the acidity of the blood (metabolic acidosis). Symptoms could include hyperventilation (rapid, deep breathing), tiredness, loss of appetite, irregular heartbeat, or changes in the level of alertness. Chronic, untreated metabolic acidosis may increase the risk for kidney stones or bone disease. TOPAMAX® may affect how you think, and cause confusion, problems with concentration, attention, memory, or speech, depression or mood problems, tiredness, and sleepiness. Do not stop taking TOPAMAX® without first talking to your doctor. Stopping TOPAMAX® suddenly can cause serious problems. TOPAMAX® may cause high blood ammonia levels. High ammonia in the blood can affect your mental activities, slow your alertness, make you feel tired, or cause vomiting. Adverse Reactions The most common side effects of TOPAMAX® include: tingling in arms and legs, loss of appetite, nausea, taste change, diarrhea, weight loss, nervousness, and upper respiratory tract infection.

Since I have been on TOPAMAX I have Lost teeth- some have broken and a couple have fallen out – I have excellent hygiene so topamax is the Only answer, I was diagnosed with osteoporosis since being on this, but never a mention that Topamax could be the cause, it’s simply logical. Severe loss of memory – can’t remember ppl, places, things, words, etc – , kidney stones, weight loss, hair loss, chronic pain, dizziness (vertigo ALL the time!), loss of overall strength and mobility, diarrhea, blacking out… Not sure if all of this has made my attitude change or Topamax itself is the culprit. I would be willing to bet that it’s a combination. My family/friends have noticed that I’m not the same ‘care-free’ person I used to be. I can’t remember? My eyesight gets worse by the day. With all the damage this drug has caused me, I have chosen not to have children as I can’t imagine harming innocence. The only lawsuit to date, that i am aware of, is in regards to birth defects. So I urged them to file for all the patients (us) that have suffered while on this ‘miracle drug’…. I’m sure we’re all gumming it – toothless, blind, blacking out and writhing in pain. On the BRIGHT side, we’re bean poles that can’t remember a blasted thing so we’re easy to spot!!! 😛 Keep the faith everyone!

Has anyone had terrible teeth trouble since taking Topamax? I have had every tooth in my head worked on or lost since taking this med. My dentist has said he has never seen anyones teeth deteriorate as fast as mine have. He said it had to be the Topamax since I havent had any other problems before. Just wondering if anyone else has had as bad of teeth since taking this drug.

hello.i initially was admitted into the hospital for syncope. for 2 weeks prior to this i had headaches and dizziness. the day i passed out my headaches were worse accompanied by nausea. the next day after being admitted, i had an mri and mra. i am a person who is highly sensitivew to meds and am allergic to alot of them. when they injected the contrast, i went into anaphylactic shock and stopped breathing. i was coded and intubated because i no longer was breathing. while in icu, the neurologist started me on topamax. at that time i didnt know how much i was getting. i was extubated and the dr said that it would help my headaches. i spent 3 days in icu and started getting tingly sensations in my feet and hands. i was told it was normal. but my headaches had gotten worse. i told the dr and he said it took time to go away. i went then to a regular med surg floor and realized i was having weakness on the left side of my body and my dizziness was worse. i couldnt even walk 15 feet without feeling i was going to pass out. my heart had all kinds of arrythmias buit they said it was from my pots. they then admitted me to the rehab unit to get stronger. here at rehab my symptoms got worse. im only 24 and it was as if i had a stroke. by now it has been 4 days on topamax. day by day it was so hard to stay awake. i had numbiong in my rt side of my face especially w exercise. my therapies drained me. i couldnt feel my whole left side and was not able to walk anymore. after 1 week in rehab i wasnt even able to brush my teeth without getting out of breath. i was seen by a psychiatrist for suicidal thoughts which ive never had before. then one day i refused to take the medicine. i questioned the drs. they said it was normal side effects and they thought i had chronic conditions. all tests have come back normal. after the 2nd day of being off of topamax i started feeling better. no more memory fogging or blank staring. so the dr dcd it. i started having tremors on the 3rd day of being off of it. its been a week of of it and day by day i am getting better. m,y tremors are less and i am slowly regaining my strength. my left side is still weak but getting better. i am now 3 weeks here and will be going home w a walker, bedside commode and wheelchair. this medicine is horrible. oh and i found out the neuro started me on 100mg 2 times daily. its no wonder i felt like that.im scared i will hav permanent damage.the recommended starting dose is 25mg.

After My neurosurgery I tried various meds until being put on Topamax. Immediately, I began experiencing periods of extreme spaciness. The worst episode was when I was driving home from a friend’s house about 150 miles from home. That was at 4:00 p.m. Then I sort of remember exiting about halfway home and the next thing I remember was seeing a freeway sign about 200 miles north from where I started. At that point, I turned back around to head home now being about 300 miles from where I started and I finally arrived home about 6 hrs. later; about 4.5 longer than what it should take. I went the clinic right after I got in town. They ruled out a seizure but decided to admit me right away anyway. My neuro stopped it cold turkey. They tethered me and put on a video monitor. Shortly thereafter, I began to wander aimlessly around the room for about 30 minutes. They determined that I was suffering from Topamax toxicity.

i started taking Topromax in April 2011. The dosage was slowly increased untill i was taking 100mg a day. I June of 2011 my nuerologist increased the ammount to 150 mg dailly. I phoned her in Aug to let her know I was experiencing unusual bruising and hair loss along with the tingling, memory loss,and language difficulties I was already experiencing since starting the drug. She weaned me off slowly and two days ago was my last dose. After reading these testimonies i realize that the eye fatigue and strain I feel is probably from the drug. I have also been having lower right side back pain and will now call my PCP to have my kidneys checked. I wish I would have known all the possible side effects other than the weight loss, taste change, appetite loss and tingling hands, feet tongue face that I was told from the start were just a temporary side effects. I had a terrible time struggling with trying to come up with words and my memory was almost non existant. I am happy that my language skills have improved since starting to wean off the medication. Hopefully the bruising, hair loss and constant eye strain will improve, but after reading the testimonials I am afraid.

i have been suffering with migraines for years. doctor put me on topamax and have been on the medication for a long time not nowing about all the side effects. i recently had a cat-scan done and the doctor saw i had two spots on the brain. couldnt really explain why only that it could be from some medication i was taken????

Thank Goodness I didn’t experience some of the side effects that the others have had from taking the Topomax. I too was on a daily 100×2 per day regime for several years. It wasn’t until November 2010 when I was admitted to the local hospital ER with kidney stones that there was a possibility that the medicine that was prescibed by my neurologist for migraines would have done this to me. However just this past week I had to have a surgical procedure to remove yet another kidney stone- I knew the symptoms from my hospital visit in November, had stayed well within any diet restrictions that the urologist had given to me- because I didn’t want to go through that pain ever again. Unfortunately Sep 5th at 5:30 in the am I am headed back to the local hospital for what I had a feeling was going to be diagnosed- Kidney stones in the right kidney. One was in a location that the urologist told me that he felt I could pass it, however there was a second one that would be a surprise if I was able to pass that one. The pain and pressure was like having a vice on your side – constant pressure/constant pain no relief. Normally two percocets would have knocked anyone out (especially me), I did this for four days until I could have the surgery. Again when I met yet another urologist he too mentioned about Topomax and the connection with kidney stones. After having the surgery I am still sore, but nothing like the pain that I was in- I could not eat-I was constantly vomitting, even the anti nausea meds were not helping. I was on a liquid diet as well pain meds for four days. The reason I am speking out is that others should know about the seriousness of the kidney stones, I had just renewed a prescription that cost me a couple hundred dollars-I will never take another topomax ever again. If I should get a migraine I will deal with it as it happens- no more preventive medications for me. Look what is has cost me- two ER visits (which we know are not cheap) ,visits to the urologist for follow up, and now a surgical procedure.

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My doctor put me on 100mg topiramate 3 weeks ago. I thought I was having problems with my eyes I was seeing double, having stabbing pain in my left eye. I would get headachs, every once in a while every thing would go black. I went to have my eyes checked he said it looked like one of my nerves behind my eye was swollen. That I needed to get to a Nero because that means there is swelling on the brain. It took a month mean while I am gettin worse Had to see my famliy doctor who gave me something for migrains and pain. There were times I could not even spell my own name. Finally after about 6 week I got in he ordered a MRI, a MRA, and a spinal tap. he said there could be a tumor, a blood clot, or to much fluid. But in the mean time he want me to take 500mg Acetazolamide twice a day just in case it is to much fluid. Will in 2 weeks time I had a 3 test done felt wose then before felt like I was going to die missed work a couple of nights because I felt so bad and I was afraid of just dropping dead. The MRA and MRI both came up clean have a aneurysm in my right eye, spinal tap pressure levels were low. So guess the Acetazolamide was doing more harm then good. I still don’t really know what is going on feel a lot better with the Topiramate Alot of the pain is gone. I don’t know what is the side effects and what is happening because of my brain. But my doctor did tell me to read them and watch them and I have a appt. with him Friday to talk to him about the side effects. To decide if this is something that works for my body or is there something better.

I have been on Topamax for a number of years and the symptoms are getting worse. Am constantly tired, affecting my work and driving. Suffering more epileptic seizures than ever, speech problems and other issues mentioned in this forum also increasing. I was feeling sick in the stomach and couching up streaks of blood before admitting myself to hospital the other night and taking myself off this poison. It was actually starting to taste how I would imagine Round-Up pesticide would. This is POISON and should be treated as such. Get off it NOW.

I Am Angry With Topamax. I am reading all these comments and it anger me. How can they keep selling this? My son was put on topamax after having a seizure. He started to get worse. He had tingling, numbness, lost a lot of weight, dizzy spells, vomiting and his seizure turn to epilepsy. So the Drs. kept increasing the medication. He started with 25 mg then went up to 100 mg. My son with get pain in his heart. Then thing got worst. He started to have seizures every 12 hrs. He told me mom, I think this medicine is making me worst. I told him the Drs. said you must take it and the side effect will go away. My son went to my brothers house. He had a bad seizure. I get a frantic call from my brother. Then a man grab the phone. It was the paramedics. He told me ma m your sons hearth stop. He died in my brothers arms. I am so sorry my son for not listening to you. I miss you. If this medicine killed my son, I will make it a point to get it pulled out.

Today I am 47 years old. In 1999 I was hit at work with a tow motor in my lower back, in 2002 I was in a car accident.Through all this I suffered with severe migraines. Believe me when I tell you I know what pain is. I have tried every medication on the market so when it was suggested to use Topamax I did. No one told me of the side affects.One day I was talking to my husband on the phone and got really dizzy. I hung up on him. He rushed home to find me in the bathroom hung over the toilet vomiting and perfusely sweating. I was rushed to the hospital and they did everything possible to try to explain what was happening. They had no idea. I lost my eyesight, was dizzy all the time, had no equilibrium, constantly nauseated, rapid heartbeat, shortness of breath, tingling in my hands and feet and could not concentrate. I went back to my neurologist (who prescribed this medication) for some answers and had what I called “an episode” in his waiting room. He works in the towers above a hospital and I was sent down to the emergency with a letter from him. No one understood what was going on with me. I stopped taking my medication because I noticed after I took the meds the “episodes” occurred. This was four years ago, today I need glasses to read and some days everything is blurry, I still get dizzy and have “episodes”. I have tingling in my hands and feet. I have no real memory of 2007 only bits and pieces. THIS MEDICATION IS DANGEROUS!!!! PLEASE RECONSIDER TAKING TOPAMAX. DON’T GO THROUGH WHAT I HAVE OR SO MANY OTHER PEOPLE HAVE.

I have been taking Topomax since 2003 for migraines and one seizure. My dosage is 100mg twice daily. Which as of todays date, I am happy to say have all but stopped. I have also been diagnosed with Lupus. I also have experienced some tingling in my hands from time to time as well as short term memory loss which at times I agree can be somewhat disturbing. HOWEVER, I was made aware of all of these side effects before hand from my neurologist. As i’m sure most of you have been as well. Also, they are found in the bag your prescription comes in from the pharmacist, all you have to do is READ it! We all like to blame others. Sometimes we need to start taking responsibilities for our own accountabilities. Since I have been seizure free for over 7 years, I have started weining myself off of the Topomax (with the help of my neurologist of course)

i was a child at the age of maybe 16-17 years of age and I was taking this medicine for chronic migraine, which then my physician had spoken of me possibly having a condition called BOZLER migraine, which can be so severe that it can cause seizures or possibly fatal and I was a kid at the time, so imagine now, with all the problems that are going on now with the medicine, and i had the insurance to still be able to still afford them, iwould have been taking them, and I’m three kids later in life. Those kids could have possibly been mine. That scares me.

I was put on Topamax back in June 2007 due to headaches. Well, I started to have major problems. I had a few attacks that caused me to go tthe ER. I couldnt move my left side of my body for about 3 days. It was the most horrible feeling in the world. Well, then back in June 2008 I found out I was pregnant and got off the medication. Well, I lost the baby at 18 weeks; due to no heart beat! When I had the baby, they couldnt tell if it was a boy or a girl. They had to do test to see what it was because she had stopped growing. I had then and still have many emotional problems and major memory loss. It’s scary because I’m only 32 and this is not normal! Í was and still do have Heart palpitations. I had tons of blood work and the Dr.’s could never tell me why I had and have all of these problems. I’m not happy but still relieved that I’m not alone and NOT crazy. I know this medication messed me up!

In addition to my comment on june16: My immune system seemed to be affected and I contracted c-diff, complete with bowel incontinence for almost 5 months. I was “let go” from my job as an RN for mentally handicapped adults and when I tried to apply for unemployment was advised that there were plenty of jobs in my field. I am 63 years old and no longer have the energy to do hospital, nursing home or private duty. My only alternative was to take early SS at 62 years old therefore taking the smallest amount offered to me. This drug really set me back physically, emotionally and socially. I am waiting to hear from an attorney.