Topamax and seizures

I am a 39 year old white female in the nursing profession (RN). I was placed on Topamax at the age of 31 for new onset atypical complex seizures that were later diagnosed as migraine induced drop attacks. I took Topamax for 3 years. I took 100mg a day. My family and I had moved to another state and I had to find another Neurologist. During this time I had many side effects from the medication that I blamed on my "condition." To make a very long story short, while taking Topamax, I developed a kidney stone, severe restless leg syndrome, weight loss, feet tingling, blurred vision, mood swings, slurred speech and mental confusion that went into amnesia. I had to relearn how to drive a car, spell, do 2nd grade math, use a computer, etc...
I now have permanent memory loss. I struggle every day with my memory issues. I have learned tricks of how to deal with it but have not been able to recoup any previously lost cognition. After nearly 6 years of being off the medication I doubt I ever will. I feel inadequate and embarrased with my inability to remember people and things or form normal sentences during a conversation! I know the information is in my head but I can't always pull it forward. Some days are worse than others.
I also have a harder time learning new things. The information just doesn't want to stay "stored" in my brain. (Not a problem patients or doctors want to see in a critical care nurse!)
I hope my experience will save others from suffering the same fate. Use extreme caution taking this medication. It can drastically alter your life.

I am decreasing my topamax meds now after taking it for 6 horrible months..
topamax? rather call it dopamax..
I took 100 mg daily
now i'm building of the topamax I can allready feel the difference..
I hope I become the joyful smart person again I once was before..
I lost weight during this six months, wonder if i'll gain it back.. but don't care. I must get rid of this drug.. I'm so sick and tired of the side effects!!
For me it wasn't a good solution for my migraines
They didn't stop.. the first month i took topamax, my god i could bounce my head against the wall due to the outstanding headaches i got; even worse then my normal migraine seizures..
i'm not gonna look for a replacer for topamax, i'll just take my migraine as i did my whole 22 years long.. That's life and I want MY life back
good luck to you all!!

My good friend is on Topamax and Trileptal for epilepsy seizures. She has developed severe paranoia. We cant call her on her phone or send her an email as she believes that her phone, computer and house are all "bugged". I have written a letter to her doctor to let him know what is occurring in her personal life as Im sure that he is unaware of her behavior. She lives in a world of fear and her medication needs to be changed.

I was on 100mgs of Topamax a few years ago for migraines and lost about 15 pounds. It worked okay for the migraines, but I backed off on the dosage because of the side effects. But recently, the headaches returned so I increased back to my full dosage.

So now I feel exhausted all the time. I run a lot and have trouble getting energy to exercise. This morning at a meeting it took me about 30 seconds to remember my secretary's name. I feel like I have to push through this mental wall to concentrate, and on my job I need to concentrate. My mouth feels dry all the time. Some days good food just tastes like crap.

Now I'm remembering why I quit taking this drug in the first place. I don't have seizures, which is why they made it. I have migraines. There are other medications to fight headaches, and this drug just isn't worth the side effects.

I've been on Topamax (100 mg 2x per day) for 5 years as mono therapy for epilepsy. I switched over from Depakote which was a *nightmare* and it has been great, no seizures. I've had the pins and needles, diminished vocabulary and memory, and intermittent eye twitching but this week my right eye (why is it always the right eye?) has started twitching almost constantly. It is frightening and embarrassing and I am not sure what I should do.. I guess it's back to the neurological drawing for me because I am not sure why it's happening now. Has anyone else had the eye twitching occur after long term use?

Ok, so here is a new one for you. I have had migraines for a very long time, since I was a teenager, and never really sought physician treatment because in our family a headache was "nothing to cry about". So, now that I am married with 4 kids and an advancing career, having migraines on a weekly basis isn't something I can live with anymore. So I went to my doctor. He said what about preventing them with Topamax. I know what Topamax is, I'm a nurse, I know what the potentials are, but I had not really heard of the side effects when using it in a perfectly healthy person. ANd I must say it has to be my own fault for saying "sure" and not investigating first. WARNING= Topamax is a drug for seizures, effecting the central nervous system, and will have effects on a healthy person's central nervous system. Now, not doing my research I will also not have known that you are supposed to be titrated very slowly up with increasing doses, starting at a suggested dose of 15-25 mg per day for the first week the 50 then to 100, etc. I was begun at 50 mg/day for a week then 100 mg a day thereon out. Please, if you experience the symptoms the pharmacy warns you about, but they are exaggerated, go back to your doctor!! Here are my symptoms by day
Days1-3- Normal effect- tingling hands/feet, taste loss of some drinks, foggy unable to think clearly
Day4-5- horrible head pain, back of my head, not like my migraine pain, stabbing and pins/needles in hands/feet, still can't taste, nausea, dizziness, confused (like I couldn't find my way to my doctor's office confused)
Day 6- And I am entirely embarrassed to say this one because I am a nurse, and I know what it implicates... Pseuedoseizure. I was in the doctors office, in the waiting room and I could not control my muscles. I knew it wasn't a seizure because I could hear some of what was going on around me, but something was not right. I couldn't move anything and I didn't remember everything. And all the above symptoms, along with. But, naturally normal CT...
Day 7- It happens again... And this time I have some right sided weakness and all the above, that's it, it has to be the Topamax, we are done. It's only been a week, so cold turkey.

That is my experience with Topamax, and unless I am actually seizing, it is a journey I will never take again, I have 4 little ones that depend on me too much. PLEASE research before you try whatever is handed to you!!

Ok so im 18 years old and I pass out frequently, I have been unsuccessfully diagnosed with several different theories over the past two years, Recently some doctors though that my passing out may be an aura to the headaches and migraines i receive after, my doctor just prescribed Topamax to me and Im really nervous about taking it after reading about these side effects, has anyone else been prescribed topamax who has similar symptoms?

Topamax saved my life. Comes down to everyone reacts differently to each drug. I started slowly, on 50 mg, and worked myself up to 300 mg a day to prevent seizures. It worked the miracle, stopping the seizures and giving me a life back. I lost 45 lbs, I'm at a healthy weight now and sustaining it. Side effects: math skills are laughable, tingles in hand, vocabulary comes and goes. These diminished somewhat as I adjusted to dosage. Side effects are a small price to pay for the desirable primary effects. (I bought a calculator and a thesaurus.) Life is good. Topamax is damn expensive and worth every penny.

I am on my second time around with Topiramate (generic Topamax). It has been a year, and I have no reason other than weight loss to take this drug. I also don't know if the online generic versions are really Topamax except I do experience some of the side effects I read about, the tingling arms and legs, the itching, and the foul tasting carbonated drinks. I have started at 25 mg. per day 3 days ago, and am at 250 mg today with no cut in appetite except an hour after I take the pills. Do you think they are even real?

I've only been on topamax for about a month and a half and already I'm feeling some interesting side effects. In the first week of taking the medication I had such pressure behind my left eye I thought it was going to pop. It eventually went away and has not come back (thank the Lord). I also experienced some pretty nasty numbness, tingling, and uncomfortable pins and needles in my fingertips and toes/sole of my foot. The tingling in my hands usually lasted a few hours and the tingling in my feet only lasted for a couple of minutes. This tingling is never predictable.

Eventually the tingles went away and I was tingle free for a while. But in the past few days they came back. It actually coincided with my PMS. The tingles came back and with intensity about three days before my period started. I was wondering if it was common to have a side effect return or increase in intensity around your menstrual cycle? My hormones are pretty nutty and the reason I'm on topamax is to stop severe migraine auras and slight seizures that are tied to my menstrual cycle.

The feet tingles are the worst. It feels like I'm being jabbed with needles and I hate when it happens while I'm sleeping because it wakes me up and I can't fall back asleep again until they go away... they are that irritating. The hands I can deal with because I'm used to my left arm going numb when I was having the auras.

My sleep patterns have been disturbed because of topamax... I'm not too peeved about that. I still manage to get enough sleep. However there are times when I'm out with friends or having conversations and I'll know the word I want to say and I'll just bust out the wrong one. Like for example saying symphony instead of sympathy. My friends have gotten used to it and know what I'm trying to say. It cracks them up when my word salad produces sexual innuendos on accident when I really mean something else. BUT it's really messing up job interviews at the moment. I'm a bright and articulate person who is getting her BA in Anthroplogy and Archaeology, minor in History and am trying to get research assistant jobs at museums and universities. It's really hard to get a job when you are sitting there sounding like an uneducated moron high on crack.

I haven't had problems with memory, thank the Lord. Even though I've got the word salad going on (and it's strange... the word jumbles are only when I'm speaking... I'm super coherent when typing) I'm not forgetful. I was able to make it through finals week perfect, while juggling a full work load. I hope I don't start losing my memory.

I haven't lost any weight (AW SHUCKS!!!!!). I was looking forward to that one. How soon should I expect to lose weight by, if I do in fact lose weight? I'm a difficult duck when it comes to weight loss. I've been at a stable weight since I was 13. I'm an athlete so my body is my temple sort of thing. But in the past two years I've put on a little bit of unwanted weight in certain areas when I stopped hitting the weight machines :( My question is, if I haven't lost it yet... will I lose any?

I'm also classified as type II bipolar, obsessive compulsive, and anxiety disordered. I've noticed my mood has stabilized. I'm not as all over the place as I used to be. My highs could get pretty high and when they would get up there my obsessive compulsive would almost go on a little joy ride. And when I was low, I was super low and my anxiety would take the depression out for a spin. But now I feel a calmness and a zen that I never felt previously. It's not an apathy I can certainly tell you that. I feel like I am in control of my life. I thank topamax for that.

Reading all of these posts I just worry that the honeymoon period of my medication maybe over. I worry about other side effects cropping up. I think that I can deal with my tingling extremities and that I can manage my word salads. I don't want the pressure in my eye to come back. I also don't want to start exhibiting the other side effects. What is the possibility that I will start exhibiting more side effects or are you generally stuck with what initially presents in the first month or so? My doctor also does NOT intend on increase my dosage. He thinks 50mg once a day will do me just fine. Oh and one last question, anyone else experiencing the side effect increase coinciding with PMS?

Sorry for the super long post! All replies are welcome!

I have been on topamax for about 8 months. I started with 25, upped to 50, upped to 100 a day, then went to 300. now i have a raging diarrhea that I cannot control. I can't eat anything anymore. I have had seizures and at this point don't care anymore. So yesterday I simply stopped taking it. I am done. I just want to eat something and stop sitting on the stool. My poo has gone completely green at times....that is stomach bile. This medication is terrible stuff and should be removed from the market!

I just got off topamax after being on 800 mg/day for over a year. Unlike most of you, I used it to treat seizures. Because of the side effects (slurred speech, bad memory, and NO sex drive) my doctor to switched me to Lamictal.

After just one week, my sex drive is back to normal, my memory is better, and I'm more confident in my speech.

I have been taking 300mg of Topamax BID for 4 years. I also am Taking 300mg of Lamictal BID. I have had all The same side effects that have been listed. I still get some numbness and tingling in my hands, feet or legs from time to time. The weight loss eventually leveled off for me. (My Dr. said that would happen). I lost 30lbs and gained 10lbs back. the confusion and memory loss was a big deal for me, but I had finally found a great combination of meds that controlled my seizures. I found B12 shots and no caffeine really helped keep my mind clear and gave me back my "verbal capacity" (you guys know what I mean).
Overall I think it's a great drug. It defiantly changed my life for the better.
I Tried 4 others before I tried Topamax.
Nothings gong to be perfect.
Jessica, Tampa,FL

I was thrilled to lose about 15 pounds so fast, but lately I have noticed so much hair in my brush that I could make a wig. I am not willing to lose my hair or eyesight. Working in pharmacy, when this first came out I put myself on it b/c I heard about the weight loss. I also have had a few seizures and an MD prescribed it, but I know what caused those seizures, some bad behavior, and I know im not epileptic. thought they told me once you have one you're prone to them. As long as I stay a 'good girl' i have had no seizures. It sucks thinking about gaining back this weight though. Willpower and the gym I must, i must.

I was given topamax and I dont have seizures or anything. I have PTSD, Depression, and Panic Disorder. I was all over the map, having violent episode, and no memory of it (which was dissociation). They put me on this while i was in the hospital, and I became so non-functional it wasn't funny. I have a degree, grad school, and am 1/2 way through a masters, so I am normally well spoken rationale and well thought out. I was having trouble finding simple words. The effects came on immediately. My memory and cognitive abilities have been permanently affected. I was on for a year live in a outside a small city, and have no real option for other doctors. Not to mention..I found out that this drug has a high rate of users getting depression and in particular at risk for suicide. That was what happened with me...prior to taking it..Then they put me on it?

Trouble seeing, cognitive abilities, memory, depression (was already depressed, and suicidal, but I think it was counterproductive to the anti-depressants)

Is their any action against this drug?

I dont know if it has anything to do with Topamax but i think i may be doing some weird stuff in my sleep or not sleeping as much as i think i am. i would call it cat napping. other than that, the first 2 months were horrible. i had the numbness in the hands and feet and i could never find what i wanted to say and i would stutter and feel like a dope. the doctor told me to wait it out for awhile and sure enough, the worst of the side effects went away. I still have problems finding things to say and im a bit more spacier but my seizures and my headaches and everything that was wrong is gone. Overall. its all good. I would just like to know what the heck im doing in my sleep and if its ever happened to anyone else. Maybe i should call my doctor. hah.

I started Topamax a month ago. My neurologist told me to start out taking 50mg in the morning and evening. I am a nurse and have read that this med needs to be started out on small doses and slowly increase every few days. When I questioned him about it, I was told that I should be fine. Although I did not follow his directions and start out small and increase it every 3 days. After about a week I was on the full dose of 100mg daily. All carbonated drinks tasted flat, I was having a funny taste in my mouth, and I was sleeping more. Within the past week, I have been having numbness in my hands and feet to the point that my hands go completely numb. The tighter I tried to grip something, the worse it got. I also am having severe dizziness. I am unable to stand and walk without feeling like I'm going to get sick and fall. Forget trying to drive. I work 45 mins away and have no other option on getting to work. During the time that I have started to have the dizziness, I have also noticed a drop in my blood pressure. I do not even have to be standing or moving to have the vertigo start, I can be laying down. When I called the Dr, I was told to abruptly stop the med. No weaning. Everything I can pretty much deal with but, my main concern is the severe vertigo (dizziness) and low blood pressure. Is anyone else having this issue?

I take 200mg a day (100mg in the morning and 100mg at night) for seizures. It has been my miracle drug. Granted the side effects were awful. But I did my research before starting it again. I had taken it previously for migraines and couldn't tolerate it. If you take the appropriate vitamins while taking it you can help to alleviate a lot of the side effects that you may have. Topomax can absorb some critical vitamins out of your body which causes some of the side effects. The vitamins that I take are: a high dosage of a Super B Complex (tingling, numbness, fatigue, speech). L-Carnitine (memory loss), Biotin (hair and skin). There is another website with postings similar to this which is where I discovered other patients taking Topomax that had discovered using the vitamins helped. Once I got on a good regimen of vitamins it made a big difference. I still experienced and am experiencing weight loss (but I just had a baby) so I am not really upset about that. LOL Anyways, I hope that information helps someone out there. It sure did help me. If I can find the research link that had the vitamin listing that it depreciates I will post it.

I have been on TOPAMAX for over a year and until recently I didn't realize I was suffering from any side effects. It helps the content headaches and the weight loss is great. In the past six months I have been suffering from severe chest pains, you would think that it was a heart attack. The doctors can't seem to figure it out. After the help of my family doing research, we've found that TOPAMAX DOES NOT mix with METFORMIN for diabetics or LAMICTAL for bi-polar or seizures. Why don't the doctors or the pharmacist warn you about this kind of stuff. I have went from a fairly healthy energetic person, to someone that can even get up and go to work. I have 2 to 3 attacks a day and each one drains me more and more. It is not good for my mental well-being, and I am uncertain if it will have any long term effects or damages on me. It has not been proven that this is the cause of my pains after specialist to specialist and many more to come, but I am positive it has a lot to do with it. I just don't want to hurt any more.

I'm a 26 year old female and I've been on Topamax since March 2007. It has completely gotten rid of the debilitating headaches I experienced 3-6 times a week. It also got rid of my anxiety. I got my life back, my antidepressant kicked in at the same time. I experienced all the usual side-effects, tingling hands and feet, forgetting words, memory problems, loss of appetite, but was COMPLETELY pain-free. I still am. However, I never remember anything now, forget whether or not I did something, paid my bills, etc, lose things constantly, and I have lost about 20 lbs. Not good. I look anorexic. I have bones sticking out. Eating is hard. I forget to eat and drink all day and food is just unappealing. I feel fuzzy and stupid and slow. Not sharp like I used to be. It has killed my confidence and self-esteem. But I was wondering if any women out there got yeast infections while they were on Topamax. I've had one monthly since I started it, and my doc said it's a rare side effect. Oh yeah, I've had mild hair loss and mild to moderate acne now. This drug, it is such a 50-50. Living with chronic pain, those headaches were awful. But doubting yourself is awful too. Anyone have similar experiences?

I'm 24 and I have had increasingly more migraines as I get older. I now have them 2-3 times a month, and they sometimes last 3-5 days. I went to the doctor, for the first time for migraines, three months ago and he just gave me a to take as needed. those were gone quickly. I had another appointment a few days ago and asked to be put on a daily preventative med. he prescribed topamax. what concerns me is the dosage. he gave me 200 mg to take twice a day. I have never taken any daily med for migraines before, and I see that most people start at 25 mg a day and gradually increase the dosage. I'm very sensitive to medication and I'm worried I can't handle 400 mg of Topamax right off the bat. I was considering cutting the tablets into halves or quarters and starting myself on a lower dosage. perhaps I should just call the doctor for clarification. is this dosage too high for a first time taking Topamax?

any advice much appreciated,

Sarah

I had been dealing with numbness in my hands and feet for about a month (I've been on Topamax for maybe 2 months now, maybe 1.5 months...) and I am happy to deal with that. Anything is better than the migraines that I had, and anything is better than waiting for the next migraine to start.

But for the past few days, I have been dealing with a total shortness of breath. It's like I can't catch my breath, in a way... or, as my mom put it, can't really get a "fulfilling" breath. I am constantly yawning, but that's how I am getting to that deep breath, although it takes me 3 or 4 tries to get there. It's frustrating, and SCARY!

I called the Topamax number today, and the nurse said that the side effects should only last 3 months total, but 1.5 more months of this?! I can barely imagine 1.5 more hours!!!!!

I am going to begin taking 25 mg of Topamax at bedtime tonight. After reading all of these posts I am a scared. I was prescribed Topamax for bipolar disorder. I am currently taking Lamictal as well. I always gain weight on psychotropic drugs and need to lose about 15 lbs (all of which I have gained over the course of being on Lamictal). Any who-my psychiatrist said that this medication may help counteract the weight gain I have experienced. Although I do not consider my self an overeater now. I do hope that it helps me to not like the taste of sodas though. I am addicted to Mt. Dew and caffeine, which I wouldn't mind stopping. Anyway, I am supposed to increase my dosage by 25mg per week until I reach 75mg per day. I am also supposed to go back and see my doctor before I increase the dosage beyond 75mg. I just hope I do not have the horrible side effects I have read here. Some of them I know I can deal with especially if they are temporary but the anxiety/depression/shortness of breath/lack of energy/morbid thoughts are the main ones that concern me. My psychiatrist said that with this medication I should drink plenty of water. He said that it could cause headaches and other side effects if I'm not sure to drink plenty of fluids with this medication. So, I am planning on hydrating myself really well today before taking it this evening. I'll post back and let you know how the side effects are going. Is anyone else on a combination of Lamictal and Topamax or on it for bipolar disorder? I'd like to hear more of your experiences.

I have been on Topamax for two years had most of the side effects I am used to them. The only thing is I am freezing all the time . Anyone have this?? I am cold all the time!!! I also experiance, in the summer, the no sweating thing, that makes me dizzy in the sun, I have to stay under an umbrella at the beach etc. I never had to do this , I was always a sun worshiper and could take it.

Hello, everyone. I didn't know there was a page like this, but I'm glad there is. I've been on Topamax for 3 weeks because the medicine I was on for 2 years didn't do anything and the headaches weren't going away at all anymore; they were continuous. The first week at 25 mg I had the tingling for a day or two, the involuntary muscle twitches, the terrible mouth taste, and the chest pain. All but the terrible taste went away by the second week at 50 mg but I started getting wobbly legs and dropsy. I read an article somewhere where a person on Tomamax called the drug Stupamax or Dopamax and said anyone on it turned into a box of rocks. The box hit me at 3 weeks and 75 mg. I'm not wobbly anymore, I'm still irritatingly dropsy, and I am doing things that only a person with half a brain would do. Plus, my ears have been ringing for two days, and today I feel like I'm in a tunnel and everything is far away. I'm getting ready to call my doctor. On the OTHER hand, I haven't had a headache that lasted for more than a half hour in 3 weeks. So what's best? Going back to headaches or continue to evolve into a box of rocks?

i have had seizures since 1998 first put on depacot after 3 years of no relief they put me on topamax, which at first felt like someone had climbed inside of my head and turned the light switch on. i couldn't believe how wonderful it was now after 4 years of being on it, i have experienced the same side effects as mentioned above. the one about dry eyes hits home too it has effected my eye sight more and more. i am now for some reason or another thinking about getting off of it however i never did experience any dark or strange dreams though. my depression goes to extreme highs to extreme lows if you know what i mean. all in all i would not want to go back to where i was before taking topamax it was literally like someone had shut the light off of part of my brain. joyce from texas

I started taking Topamax 2 days ago and I have already noticed side effects..such as the flat soda...numbness in my arms and face at night...BUT the worst part are the morbid thoughts at night ( I take only 25 mg at night) I have the most bizarre dreams and I wake up feeling like I havent slept for days. I am taking it due to severe migraines which result in seizures. I am horrified after reading some of the posts here. I am wondering if anyone started out with any of these side effects and then as their body became accustomed to the medication did they pass?

I can't believe all of these posts, wow. I was starting to feel as though I was alone with all of the symptoms I was experiencing. I started this drug 2 1/2 weeks ago at 25mg am/pm and am currently up to 75mg am/am. I have really bad chest pain/tightness and mild shortness of breath. As someone else had mentioned, pop is enhanced not dulled, seems as though its like pins on my tongue. I have been forgetting words but not too bad, just for a couple of seconds. The anxiety is the worst, sometimes I lay in bed and the chest pain will increase and I get so axious it feels as though I'm going to die. I went to the ER last night but they did an EKG and told me my heart was fine that the chest pain most likely was not related to my heart. (I'm a 22 year old male and have never had problems with my heart) These chest pains only started after starting this drug. I'm ready to try something else. This was the first drug I was put on for my seizures, my doctor said it could possibly help the seizures/headaches/weight. These side effects are just too much.

I have been taking Topamax since 2002 for migraines. I started out slow with 25mg at night for a week then 50, 75 then 100mg after one month. The following week I was suppose to start 25mg in the morning. I received headaches from that. I only stick with 100mg at night and have not suffered from a migraine since. Unless I am hung over. I did get the tingling in my hands and now I hate soda. Which to me is a good thing for all the sugar it has in it. However, when my script runs out and it takes me two or more days for a refill, I get extremely sick. Must be a withdrawel thing. So do not miss more than one day.

I started with 25 mgs of topamax about 5 months ago for migraine prevention. I very gradually increased the dosage to 50 mgs and started having the usual side effects of tingling in hands, metal soda taste, concentration problems; but not bad enought to make me stop as my migraines were stopping as well! Then I upped the dosage to 75 mgs, and the side effects were sudsiding. My nurologist had me up the dosage to 100mg, and that very night I awoke from sleep having my first partial conscious siezure. At the time I didn't know what the heck was happening to me and thought I may be having a stroke. I am only 44 years old and I ran across the street at 2:30 in the morning to my neighbors house who is a nurse. Long story short, it took uppin the dosgae two more times and having this happen each time I upped the dose, to finally realize that it was the topamax that was causing the seizures. Now my nurologist is gradually decreasing my dosage to wean me off the topamax, and hopefully the siezures will stop! Has anyone had any experiences like this? Or am I the only one who get s siezures from an anti sewizure medication?

My doctor put me on Topamax for migraines, but I can not handle the effects. I just started the 75 mg dose just as I was moving into a new college apartment with new roommates, and I felt like I was going crazy! I couldn't eat anything without feeling completely ill, I was spacing out, and I couldn't remember words.. for three whole days I couldn't remember the word 'tapestry.' I finally had to look it up in the dictionary.. not a good sign for a college student. The worst, though, was the overwhelming sense of panic that was getting worse by the day. I was no longer myself! The last straw was a panic attack, complete with hypernentilating. I have never felt so scared in my life. I actually had to go the ER to get something to calm myself down.

So, I decided to stop taking it. My parents talked to my pharmacist, and she told them that Topamax IS the type of drug you can stop "cold turkey." But after a week, I feel almost as bad as I did when I was on the drug! I still can't eat anything. Also, I wake up hours before my alarm goes off, completely sick at my stomach. I feel panicky and nervous. I have several bouts of diarrhea and this morning I almost didn't make it. I share a bathroom with three (normal!) girls, and it is getting to be embarrasing and annoying. Please, can anyone tell me.. when do the side effects go away?? I want to be a normal 19 year old again!

Do not stop this drug cold turkey. I am not a fan of Topamax but I see many people posting about wanting to stop immediately. I have had a really bad experience on this drug with side effects but you cannot just stop taking it. I am currently weaning at this rate: 25mg every 5 days. From what I've read, this is pretty much the standard when weaning off topamax but you should always consult your doctor. Cold Turkey stopping can result in seizures and all kinds of adverse side effects that can make your current topamax experience look like a walk in the park.

Started on Topamax about 3 months ago. Taking for visual seizures from scar tissue due to gamma knife on an AVM that bled.I was seeing all kinds of things like people, dogs, cars, you name it. Doctor first put me on Dilantin (pretty strong dose). It did nothing, and it did not even show up in my blood on a blood test. That was a nuerosurgeon. He sent me to a nuerologist. He put me on lamictal. I took it for one week, and wanted to drive my car over a cliff!!! I was so depressed and I felt horrible. I just stopped taking it. Then he put me on Topamax. I take 100mg. Soda is bad. I do miss my diet pepsi. I lost 30 pounds ( this is a benefit). My brain is fuzzy at times, and I can go to introduce a family member, and not even remember their name for a minute. I have trouble with urination, actually starting it. Sometimes I lose my balance, and bang into things. I get stomach cramps once in a while.However, all the people, dogs, cars, and "unwanted" visions are gone. So, I guess it is worth it. I wonder if I will ever like Diet Pepsi again. Also, now eggs and chicken are really starting to gross me out.

I have had migraines for 4 years almost on a daily basis and nothing has worked. Finally started Topamax, the first week iI felt like i had a stroke, my speech was slurred, I couldn't concentrate, I was exhausted couldn't make complete sentences, numbness in hands and feet and every thing tastes bad., I had been on 4 pills a days to start so decreased to one-i believe it it 50 mg. worked well then headaches began again after 2 weeks, so increased to 2 then again in a few weks to 3 now i have had only 3 migraines in 3 months. Still have the numbness and taste aversion but I have never felt better as far as migraines. My new problem is I am having a lot of digestive issues including cramping and constant acidy, bubbly,gassy, bloating feeling and no gas x, pepto or anything works??? Is this a side effect or something unrelated??

Anyone experience problems with drinking beer, wine, alcohol? Beer is undesirable since it tastes flat. Last night drank it anyway celebrating my son's baseball win with the team. Did't even finish the beer because it just tasted so bad. Felt awful all day today as a migraine ensued. Few weeks ago drank Wine. It tasted okay, yet I woke up during the night violently ill, diarrhea and vomiting (great - huh?)- So now I am afraid to drink alcoholic beverages. Am I alone here? has any one else had this problem?

There is a strong warning regarding heartbeat irregularities and Topamax. It is in the PDR and professional literature but is usually not told to patients.

I am an RN, wanted to lose around 30 pounds and my doctor prescribed this medication. He did not tell me about any side effects other than possible dizziness when first starting the medication. I wondered why my thick and healthy hair was falling out by the handfulls and why my Diet Coke was undrinkable.. figured out the soft drink part but had to ask him about hair loss before he offered up that it is a very common side effect. But those are the simple, more common things which most people now know about. The cardiac effects are NOT well known until a person really looks for that particular effect in professional literature. People NEED to know. I have been in the hospital for several days and am still having a very rapid heartbeat with a serious irregularity which I have never had before taking Topamax and which is documented in SOME literature for physician prescribing only.

Today I will be having heart tests and possibly even a heart cath. to determine if the Topamax which I stopped taking 2 weeks ago is the cause of my own irregular heartbeat ( Ventricular Ectopy) and chest pain.

IF you don't need this medication very badly for seizures, please do not take if " off label".
The risks are sometimes much more severe than the condition being treated.

I wish you all health and happiness. God bless.

Texas RN

I have been on topomax for 2 years for seizures. They had my dosage up to 200-250mg at one time and now I am on 100mg 1x a day do to the side effects. Now being on the 100mg I just don't feel like the topomax is working or worth taking. So, I stopped taking all together 2 days ago. I have had no side effects and I feel great. I think that topomax is great in the beginning and then being on the med for a prolonged period of time messes with your body, mind, etc..

Hi All,

I have been taking Topamax for about 3 years now for migraines, and it has been a godsend. I am taking 200mg a day, 100mg in the AM and 100mg in the PM. I experienced all the usual side effects, confusion, dizziness, bad taste, tingling, blurry vision, etc. but these do go away with time. Here are a few things that can be done for some of them. For the dizziness, your doctor can prescribe for you Antivert. For the tingling, your doctor can prescribe for you, I think it was called HZTC or something like that, it was a water pill, I am not sure of the name, but ask your doc, I am sure they will know the correct name when you ask them about it. All of the side effects will go away with time. I did not experience the hair loss, so I can't say if that will go away, but the others will. If you do decide that you want to stop taking Topamax, please do not go off it "Cold Turkey", I have read up on it, and you could put yourself at big risk by doing this, seizures, etc., remember, this was first a seizure med. Please wean yourself off.

I have been taking topomax 100mg twice a day for one year. I began taking it for seizures and headaches. I weaned myself off of it in December feeling that it was unnecessary being that I've always been on lamictal as a monotherapy treatment for my seizures and that the dizziness, memory problems and tingly feelings were not worth it. Now the ten pounds that I originally lost and kept off for all this time has came back on and all the while I have been exercising 1 1/2hrs a day (which is new to me) and it isn't helping. I am back at my normal weight of 123 whereas I was happy to be 113 while on the drug. I am going to begin taking it again to see what happens... I don't experience the symptoms I spoke of before-unless I take too much because my memory is bad.

I started taking Topamax Jan 07 while weaning off of Dilantin (for seizures) after brain tumor removal. Been having tingling in fingers and lips and I'm not yet up to full dosage (100 m.g. 2 x day). Memory Loss, about 20-30 minute attention span. After reaching and maintaining the maximum dosage I may report changes.

I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.

I am taking Topomax for migraines. I always start everything at a really LOW dose since I have a lot of probs with side effects. Started at 15 mg and went right away to 30mg (15mg twice daily) the second week because I was dying from headaches. The other antidepressants prescribed for constant daily headache prevention all of a sudden weren't working. I didn't want to take my abortive med for migraines every day (Amerge) so I was curious if Topomax might help my daily headache pain. Possibly my daily headaches had become migraines... so hard to tell one from the other anymore. I teach exercise for a living and so much of my headache pain is exercise induced. I found that while on topomax, all of a sudden 2 Advil would take away a headache I would get after exercising which never happened before. I would take two Advil before doing some of my hardest exercise to prevent a headache and for the most part that worked too... and that never worked before. I had tried all kinds of NSAID's before and after exercise at the advice of my neurologist to no avail. I did have one diffuse headache yesterday that might have been a true migraine and I took Amerge because Advil didn't help. I have been on the 30 mg two week now. But, now the downside. Since on the 30mg I feel like my chest is heavy a lot of time when I do water exercise... I am exhausted a lot doing my usual routines... I feel edgy, can't sleep well at night. I HAVE to have a two hour nap after teaching in the morning or I can't function mentally or physically. I sleep well for that nap time. Seems like I have thermoregulation problems. I teach water exercise and if the water is a little cold it bothers me and it never used to. Then in the pool awhile I feel hot. Same when I sleep.. I need a lot of covers, then I throw them off. Then they are on again. No I am not menopausal yet. My brain is hazy on topomax as well. I take bellydance lessons and sometimes I realize I can't remember what my teacher just told me. Now people reading this, don't think that just because this happens to me, it will happen to you. I know people who LOVE topomax with zero side effects. They don't tend to write in to posting boards. Also, sometimes side effects go away. Be patient if you want to give topomax a shot. I am thinking I am going to go back to 15 mg again... and see how I tolerate that. Because I teach exercise, the hardest thing is to feel the heaviness in the chest and the lack of ambition. This is not me. It is great not to have the headache pain, but I don't know if this is the drug for me. I was excited about the "losing weight " side effect , and I could see how skinny people who lose their appetite easily might be affected, but it takes a lot to stop me from eating LOL darn! I did read in another chat some poor chap had sinisitis for months and took TONS of antibiotics before finding out Topomax gives sinisitis type side effects in a small amount of people. So if you get sinisitis, don't take antibiotics before checking out if topomax is the culprit.

My heart goes out to every person out there trying to find the magic bullet for their headache, siezures, whatever... ADVICE.. .start with SMALL doses... you may be able to get used to side effects if you work up slowly in ALL drugs. In many drugs that didn't come in small doses, I took out 3/4 of what was inside just to get a mini dose. Ask your doc if you can mix one capsule or one pounded up tab of your med with juice and store it in the referigerator. You can drink say 1/8 cup a day of the juice to get 1/8 of a capsule. It is a lot easier than chopping up a tab into eighths. Also ask your doc about childrens doses that come in liquids with droppers. Topomax makes taking smaller doses easy with the sprinkles.. you are encouraged to open the capsule and sprinkle as little as you want on food. Good luck all. L.

I took 100 Mg of Topamax for 2 weeks. I took it for extreme headaches (everyday all day) and seizures. Although it stopped both, the worst side effect i suffered was hallucinations. I was in tears most of the time after I would hallucinate. Other side effects were weight loss (about 8 pounds for the little time i was on the drug), couldnt concentrate, and tingling of the hands, feet, and face.

I too was given topamax for my seizures and migraines. First side effect was the pins and needles in my hands and feet. Then the real horror started. I lost weight because I couldn't remember to eat. Then I couldn't remember anything-I would walk into a room and not remember how to leave. After about year of mental erasure, my family begged me to get off it. My doctor kept saying it was stress-his standard response.It's been two years now and there has been some improvement but no where near what I was before I started.I take no meds now, I still have seizures but they are easier to recover from than the meds!!

since beginning topamax I seem to be very emotional. Can cry at the drop of a hat and am still having headaches. No seizures to report unless they are taking place during the night but have had spells of double vision and forgetfulness. Dr. says to bear with it and it should level out. I have been extremely anxious for some reason and somewhat paranoid. Possibly due to the seizure disorder. I have an MRI and 48 hr. ambulatory EEG scheduled for next week not to mention very supportive supervisors at work that is a great asset. Just don't know where all the tears are coming from.

I HAVE BEEN ON TOPAMAX FOR 3 YEARS. I AM NOW UP TO 3OOMG A DAY. I HAVE COMPLEX MIGRAINES THAT ARE LIKE SEIZURES. SINCE BEING ON THE MEDICATION I HAVE NOT HAD AN ATTACK. YES I HAVE SIDE AFFECTS, I AM VERY FORGETFUL, I CAN'T READ A BOOK, I START TALKING AND FORGET WHAT I AM GOING TO SAY. I HAVE ACHES AND PAINS AND MY EYE SIGHT IS WORSE.
BUT I REMEMBER 3 YEARS AGO THE WOMAN LAYING IN THE HOSPITAL BED WHO DIDN'T KNOW HER NAME OR HER FAMILY. MY LEFT SIDE OF MY BODY LOOKED LIKE I HAD A STROKE. i DON'T WANT TO GO THROUGH THAT AGAIN SO I WILL PUT UP WITH THE SYMPTOMS .
I ALSO TAKE EFFEXOR AND HAVE TAKEN THIS MEDICATION FOR 7 YEARS. I DID ASK THE DR. IN THE BEGINNING IF IT WAS OK TO TAKE THESE TWO MEDICATIONS TOGETHER AND WAS TOLD YES BY THE DR. AND THE DRUGGIST.

I CAN'T UNDERSTAND WHY ANYONE WOULD FEEL SUICIDAL TAKING THIS MEDICATION. I BELIEVE YOU SHOULD CALL YOUR DR. RIGHT AWAY.

I am over 4 months pregnant, and I got diagnosed with Epilepsy on Valentines Day, and my doctor put me on Topamax 25 mg. to start off with. I was not having seizures that often, but now it is everyday.I feel comatose all the time, and the hot Flashes are so bad they will send me into a seizure. Also the nausea is horrible, and it says on the label not to take with antihistimines. Well Dramamine and Phenergan both are antihistimines. My doctor keeps assuring me that this is the drug for me. Pray for Me

I am on now 400mg of Topamax a day. I take it for epilepsy. I have some halluciations but I ignore them. I lost over 30 lbs. The weight loss was needed because of a seond medication I am still currently on that made me gain weight. The Topamax gives my legs and neck the worst pain and mucsle achs... I get blurred vision. I will be trying to talk and my speech will start to slur or I forget words that I will need help remembering that are right on the tip of my tongue. My short term memory, that is not so good, I forget things most of the time. The medicine is for migrane relief but since I have been on it I have had the worst headaches ever! Along with the rest of you I do have gas problems also......The only reason I do not get off this stuff is that I have tried over 10 different medicines that didn't control my seizures, this does. I have had all the tests, Just went in for an MRI, what else can we do?

I have been having temporal lobe partial complex seizures since I was 5. Was put on Topamax as solo therapy for use also for migraines in 1999. Controlled both well. Gradually I developed severe depression. It was so subtle I was not aware it was my medicine. I did tell my neuro. and he added different antidepressents to the regime to no avail. My life continued to deteriorate. I also had the tingling fingers, toes, twitches on my face, confusion, could not remember anything. I finally became suicidal and a regular MD decided told me to switch neuro and get off the meds in 2005. 1 month after coming off the med I was my old self again. My memory everything came back. I felt like i had lost all those years.