Topamax and epilepsy

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'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?

I am going on topamax for the second time. I think the drug is going to be the best choice for me, personally. I am on it to treat both, epilepsy and chronic migraines. The first time I went on it, I titrated partially to my dosage (400mg) and had to stop because my potassium dropped dangerously low and I was pregnant at the time. I have since had my daughter and am giving it another go. I am having the loss of appetite, redness and tingling of hands and feet, some irritability. I am up to 100mg now and am titrating up to 400mg. I hope that it will subside after a while. I already don't care for carbonated beverages and you are supposed to avoid stimulants if you have migraines and epilepsy anyways people! So figure it a blessing that you can't drink carbonated beverages that MOST contain CAFFEINE aka STIMULANT!!! HELLO!!! As for the other symptoms, i guess you have to weigh the benefits to the risks. I certainly hope it works for me and everyone else. Last time I took it, it could have caused heart failure. That was a biggie! So I would say, Get your routine labs and so long as you can withstand the side effects and the reason you went on the medication is being controlled...... Thank you topamax!

Like most of you all I am on Topamax 100mg. I am a 27 year old female that has suffered from severe migraines for over 20 years that would last up to 2-3 days and completely debilitated me. I would bleed from my tear ducts from the extreme pressure and I would need to be in a quiet, cold, closed off room to be left alone until the migraine was gone to continue on with my life. It was ruining my life and taking over my day to day routine. I could never really commit to anything without the constant worry in the back of my mind about a possible migraine until I found Topamax. Now on Topamax I went from 4-5 migraines weekly to 1-2 monthly, it is truly amazing, however there is a catch. Although the medication is wonderful and I will never get off of it at the rate of success that I am at, I do have side effects. I have extreme tingling in my extremities, (hands, feet) along with my face. It feels like they are constantly asleep. I also have noticed the poor tasting carbonating drinks along with my taste buds changing with certain foods that I use to be so fond of. I also have a very smokey haze where it almost feels euphoric if I wake up in the middle of the night. I have horrible nightmares of people that I have not seen in or thought of in years, memory loss and spelling issues-all goes away after 3-4 months of uses. I had shortness of breath, however that subsides as well with the use of the medications along with several other side effects. I have lost over 30lbs that is along with diet, so I can't say it is all Topamax. I have noticed little nodules that have been showing up on my hands since I stared taking the medication that I am in ? about I have a call in to my neurologist to see if he has heard of any such thing. Other than that I love the medication, because if not having migraines is one of the side effects-lol I can handle the side effects. I hope that this will help anyone that might have anything similar to what I am going through. If you can shed some light on my nodule situation please let me know. Thanks

since starting topamax in may 08, 50mg twice daily, i have had constant pain under my right rib, feels like something is eating a hole straight through to my back where the pain wraps around. also have some trouble breathing, constipation. have had gallbladder ultrasound, hida-scan of gallbladder, endoscopy, cat scan of chest and abdomen and chest x-ray, along with a zillion blood tests all showing normal. no one can find the source of my pain, the only thing is how the time corresponds with my pain and when i started the topamax. can anyone tell me of any similar side effects they have had, is it the topamax causing this? and should i stop. i'm feeling as if i'm poisoning myself. i need help. thank you for anything you can tell me.

My doctor prescribed 25 mg Topamax every evening for headache prevention. I had headache and nausea for several days before starting the Topamax, then after starting the Topamax, the headache pain got worse and I also had pain in my back and ears. I did not get the tingling in extremities but noticed some decreased sense of feeling in my face for a few hours after taking the medicine. The pain got progressively worse then I became depressed and suicidal. I was convinced my life was so bad that I wanted to die. I take 100 mg Zoloft daily for depression and still feel a little depressed and was hoping Topamax would help with this, too. I took Topamax to help with headaches and depression and it made both much worse to the point where I was seriously suicidal. I stopped the Topamax after only 5 days and the pains and nausea have gradually decreased to the point where today I have been virtually pain free most of the day for the first time in 2 weeks. I read on the internet that there is an increased risk of suicide while taking anticonvulsants, but it's rare. I am convinced I am one of the very unlucky people who becomes suicidal on this medication. I have 2 beautiful children, a great job, excellent health other than headaches and depression, and plenty to live for. I still can't believe that less than a week ago I just wanted to die and didn't care about seeing my children and family ever again or ever getting back to my job that I love. It's so hard to believe a drug can cause that kind of thinking. I'm pretty sure my doctor doesn't think the Topamax caused me to be suicidal and has no intentions of reporting my case to anyone. I suspect it's not as rare as they say to become suicidal on this med, it's just not reported enough. I wouldn't be typing this if I were still taking Topamax because I would be lying in bed suffering in pain, sleeping, thinking about how good it would be if I would just die. I went for a CT scan of my brain soon after getting off this med and I remember thinking that I hoped I had a tumor or anurism so I could die. I found out today I don't have a life threatening illness and I am happy about that now and can't believe I was thinking such bad things only a few days ago. I hope doctors take more care in prescribing this medication to people who have a history of major depression because I'm afraid people are going to feel like I felt and kill themselves on this med. I think this drug is great for some people and should be available, but people need to be warned that they may become suicidal and given instructions on what to do if that happens. I had no idea if I should go to the ER or call someone or what, so I just got people to watch my kids and called in sick to work and stayed in bed for a few days. I don't miss work often and am very committed to my job and my children are first in my life, so not being able to care for my kids or go to work made me feel so much more depressed. My doctor referred me to a neurologist and I hope to find some way to get relief from the head, neck, and back pain and the nausea. A few days ago I thought I would kill myself if my doctor couldn't find what was wrong with me and I felt terrible for no reason. Now I have hope. It's just not right that a drug can take away the ability to have hope.

I am on 300mgs of topamax a day for epilepsy, and my side effects are the flat tasting carbonated beverages. But the worst side effects is the feeling in the bottoms of my feet. They feel as if my sox are all bunched up and stuffed between my toes, and knotted up under the balls of my feet. It is a miserable feeling. I get the tingling feelings as well. My wife and I love hiking and I a try to stay in shape by doing 4 miles a day on my treadmill. I am 60 years old. I have to really push myself mentally. I hate this feeling. I don't mind the flat tasted, as I can do without the carbonation anyway, but the feet stuff has got to go.

Hi I've been on topamax for 4 years . Had all the side effects...weight loss,tingling in hands and feet,no memory and speech problems! I was taking 600mgs a day! I take it for epilepsy! I was on the highest dose. my doc then weened me from top. to zonegran 600mgs. It's very similar to topamax. For me it is not helping me as much as the topamax. I think it's a great drug!!!! I did not loose hair, no constipation, no rapid heartbeat for me! I am going back on it . Yes sometimes I would get in a hostel mood and can't spell shit , but for me it's all GOOD !

I had a few of ,what I now know, to be side effects of TOPAMAX. I asked the doctor for help in getting rid of them & he changed me from CARBAMEZAPINE (for my EPILEPSY) to LAMOTRIGINE. This was like pouring petrol onto a fire to try put it out (!!!) as one weakens TOPAMAX & the other STRENGTHENS it. I went from a few mild problems to being tired out, forgetting the name of a town I lived for 2 years, shaky hand, eczema, spots, sinusitis, throat infection, vivid dreams & before fits seeing bed buds crawling all over the bed & big lumps growing inside me. After fits ,whilst still in a daze, walking round falling everywhere!!

I am approaching 8 mos on Topamax. I take it for Epilepsy vice Migraines so my situation is less discretionary. Caffine is a definate no-no on Topamax, it makes you feel confused and crappy immediately after you drink / ingest it. That is the first lesson I learned. Drink plenty of water, that helps your kidneys work through the medicine. I take 75 mg in the morning around 7:30 and my heavy med time is around 11:30 (lunchtime) and then 50 mg at night so I am asleep during my evening heavy med time. Topamax is a miracle and has kept me seizure free for 8 mos. Side effects are light, I just plan accordingly. I would never take Topamax if I did not have to. I just take plenty of notes to overcome my high med times / confusion and seem to be doing pretty well. The big one is CUT OUT CAFFINE. Man, caffine will make you feel really bad.

I took it for severe epilepsy. I had two children on it fine, no problems. It put my epilepsy into complete remission, but for all the years I took it my life was destroyed by the emotional and mental side effects. Ended up homeless and in a domestic violence relationship, which I got out of when I stopped taking the poison pills. Coming off it felt like waking from a bad dream, but without epilepsy.

The effects which never went away were the dry mouth and no sweating, the enamal is stripped off my teeth. The mood swings and depression and exhaustion and memory loss and cognitive damage never went away. The loss of appetite and extreme weight loss(92lbs at 5'1" at first, 98lbs after tolerance) never stopped, nor did the constipation and resulting hemorrhoids.

Initial dose increases caused what I understand to be myoclonic spasms, which was a change in my seizure pattern, and other seizure pattern changes. The spasms came immediately after the final dose increase, were incapacitating in severity and lasted for about a half hour, and didn't fade for a week or two.

Did put epilepsy into complete remission.

I have been on Topamax for four months for epilepsy and I love it. I do experience some of the above mentioned side effects but my seizures were not grand mal seizures they were absence seizures. so the memory loss thing is a non issue for me, as far as depression, didn't get that one, weight loss; glad to have it, tingling; not that bad; the coldness; really only bothersome at bedtime so I take a bath at night, a really hot bath. Confusion, I was confused a lot because of the seizures so, again don't know which is worse. For me I feel this is a miracle drug. I'm not sure about the abdominal issues that is my only concern right now, that is what I am dealing with constipation and maybe some menstrual issues??

I'm on my first month of Topamax and going to work for the first time in two weeks! Someone mentioned feeling like a box of rocks on this stuff, its true, but in my case the dosage increase might have been too abrupt. I take it for epilepsy, 100 mg. I was completely non-functional during the transition! Not only was I so tired I couldn't move, so sick I couldn't eat (I've lost a lot of weight), but I was constantly dizzy. I would often get icy to touch and pass out, mores after eating.

Cognitively, I was severely depressed, and had a constant "noise" sensation in my head which I started yelling at during odd moments. I believe I even hallucinated at one point that the room was expanding. Mostly, people thought I was stoned because I would just stare at the wall and have difficulty talking to them without slurring my words.

It's been a truly terrifying couple weeks, however I've settled pretty quickly out of the major side effects. I think thats pretty much what happens for everyone. I'm happy to have my brain back.

Hello to all! I have been taking Topamax 200mg twice a day for eleven years for epilepsy. I have had all the symptoms previously mentioned. You will get your apetite and taste back! I still get the tingly sensations in my feet at times, but no longer in my face nor hands. I still have trouble remember really easy words; for instance, answering machine and sometimes have trouble explaining what I mean. About two years into the medication I developed anxiety, never corralating it with the medication. About three years later I decided to get treated by a physician and began taking xanax. I am begining to wonder however, if the topamax is the underlying factor. I am going to taper off the drug to see. I hoped this helped. Good luck to all.

i started taking topamax because of my migraines which i would wake up with them daily. the first week i started topamax 25 mg.(once a day) i was dizzy, lightheaded, silly, "drugged" sleepy (all day), stumbled over my feet, my head was "cloudy". now is my 5th week and i am 25mg in the am and 25mg at bedtime. i don't feel silly anymore. no migraines!!! i am happy now. i get tingly fingers and toes but that is nothing compared to my head throbbing every day all day long. sometimes my chest feels tight but i don't know if thats related to the drug or not. overall, i am satisfied after i got through the initial start-up phase. i did have to stop taking my birth control pills though because they wont be as effective. :(

My wife has been on Topamax for 6 months and I feel our relationship is in the gutter. Lack of affection , no sex drive and she zones me out (like a zombie). Doe anyone have the same problems with their loved ones?

My 56 year old son. Jim, is Bipolar. He was taking three medications, one of them being Topamax. The Dr. that prescribed this medication died and the new Drs. thought Jim was doing fine so they continued on with the same medication. Jim became fecal incontinent. We did numerous medical tests to see if this had any basis. None was found. Over a years period (Jim's third year using Topamax) Jim began losing his memory. This doesn't sound too horrific unless you know that Jim has 160 IQ and total recall memory. He never had to read anything more than once and he could quote verbatim almost anything from any page. Total recall of phone numbers and names, etc. At first the Drs said this was early onset of Alzheimer’s. He was being cared for by this time with a battery of Drs. Neurologists, medical, psychiatrists and doing some very extensive testing. Finally it was judged that no, Jim does not have Alzheimer’s. However he continued to quickly decline. He by now was both urinary and fecal incontinent. His speech was slurred and he was unable to bath himself. He required around the clock help. He would ask me questions like, did I go to school? Did we live as so and so town? Then he asked, is my name Jim? This was hard to hear but then he quit talking altogether, was staggering and would respond to telling him walk this way or sit here but little else. Finally the Neurologist told me he was almost certain that Jim had a rare brain disease and it was always fatal within a year. He determined that Jim was in the advanced stages and probably had 2 to 6 weeks to live. I was devastated! Jim was sitting in the office when the Dr. said this and he made no recognition that he heard or understood anything.

I started talking to friends about this and one of them said call her friend a paralegal nurse practioner. I did and she asked me "Why is Jim taking Topamax"? My answer I consider rather stupid now but then it was the truth, I answered "because the Dr. prescribed it". She said, titrate him off Topamax and then call me. I went to his Dr. at the time and the Dr. was most reluctant to take Jim off this medication. He accused me of "playing Dr" and was most insulting. I persisted and said if he wouldn't I would change Drs. Later I understand he took Jim off much too fast and we did have really serious side affects. We halved his dosage every two days and in 6 days he was off Topamax. Jim went into a catatonic state for several hours at a time about four times. There was about 4 days and nights that neither of us got any sleep. He had repetitive thoughts that nearly drove him crazy (His words). The sixth day Jim started talking but then would go into these catatonic states for hours. When he came out of them he would talk and explain some things, then he would quit talking again and he later explained the thoughts were going so fast in his head this was the only way he could preserve his sanity was to just "blank out".
After about two weeks of this intense illness and no help from his Dr. and Jim refused to go into the hospital, in his talking moments he said they would just fill him with sedative drugs and he wanted to get as clear as possible from these. To make a very long story short this was one year ago, three Doctors ago and Jim was relieved from his repetitive thoughts by Fluvoxamine, but that spiked him into a manic phase and eventually he went into the hospital. He is on a complete new regime of meds now but we always research any new med BEFORE taking it. It will never be just "because the Dr. prescribed it" again. By the way, Jim was taking lithium at the time Topamax was originally prescribed and gaining a lot of weight. His original RX was for weight control~! It didn't work but it nearly killed him. I called the paralegal back to thank her but she had left the law firm and no one can locate her. Our Guardian Angel????

I just began taking taking 25 mg of Topamax 3 times a day for about 1 week. I have the general side effects: loss of taste, tingling in feet and hands etc... however, my doctor insisted I would be much calmer (I am fairly hyper) and would be able to sleep better. I feel as though I am much more irritable with my young children ( less patience) and I am not sleeping all that great. Has anyone else had these side effects? As far as the headaches, at first, I actually was getting MORE migraines, butthey and the daily headaches seem to have subsided. However, I have not yet experienced the typical menstrual headache/migraines which are the worst for me.

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've been on Topamax (for seizures) for almost 2 years now, gradually increasing my dosage from 150 mg/day to 400 mg/day when I learned that 150mg is a migraine sufferer's dosage and not a Epilepsy dosage. I mention that because at 150mg, the side effects were present, but tolerable. I had the tingling fingers, eye twitching that was only behind my right eye (seems everyone only has it behind their right eye...why is that?), I can't find the right words in conversation, memory loss , constant sleepiness, backaches, depression, etc. At 400mg, I was an emotional wreck...I could not handle my emotions anymore. I would cry hysterically when talking for no reason, I couldn't concentrate on my work as an analyst, I had to read and re-read instructions in order to understand them, and sometimes read them out loud....and this is the kicker...sometimes when I'm buying something and at the check-out, it'll take forever to do something as simple to count out change. I have given the wrong change to cashiers a few times and then told them something to cover up my embarrassment like "Oh, I thought I gave you a quarter!", when in all actuality, I thought I gave them the correct change.
I feel like a moron pretty much all of the time. I used to pride myself on my intelligence and speaking ability but on Topamax, that is seriously diminished.
I don't know if this is related, but because of my inability to concentrate, I lost my job in Nov. '06. I thought I lost my insurance too, so I made the decision to stop my seizure meds, thinking that I was "cured". Well, I had another seizure in Jan '07 and am back on Topamax...depressed, twitching eye, the whole gamut. But you know what? The entire month of January, before my seizure...before Topamax...was the happiest I've been in sooo long. It's not worth losing a few pounds for.

Im only 16, and ive been on topamax for about 6 months. Im on it because i have epilepsy, and because of my headaches. Just recently in December i got put on 100mg and ive been noticing alot of hair loss. I also get alot of tingling in my hands and feet, sometime in other places. Sometimes it is really painful. Yesterday, i was wondering if hair loss was a side effect of Topamax so i decided to look it up on the internet and i found this website, and i read what everyone else had to say, and now im kind of scared to see if any thing else happens. I haven't had anything like Soda Pop tasting bad but yeah.

<3 Sarah :)

Myhusband has been on this mdeication for 4 weeks now,, He suffers from epilepsy and was on dilantin for almost 2 years. Unfortunately he wasnt able to maintain the correct level for the dilantin to be effective and is now being weaned off of it and onto the Topamax..Myself and my whole family have noticed a significant change in his personality and moodiness, he is always tired and seems to be more depressed then before.. After some of his comments today that he has said to be and reading the postings on here, I will be contacting his neurologist on Tuesday (like I'll be able to get in touch with him on xmas,, NOT) and get him off this and onto something else.. As far as the weight loss, I haven't noticed any difference, he has commented about the tingling in his fingers.

I was given Topamax about 2yrs ago because I have epilepsy. It seemed to be working pretty well at first, all I had noticed was that I lost about 10 to 15lbs and that the medication seemed to be controlling my siezures fairly well-and who was going to complain about that right? As time went on both my family and I began to notice that my weight wasn't the only thing I seemed to be losing. I'm only 20 and I'm losing both my memory and my hair. At first I just seemed a bit more flighty than usual, and I was finding my hair everywhere-but at this point its really just impossible to deny the difference in me or the amount of my hair thats consistently in my hands, sink or tub. I don't care how thin I am, it's not going to be worth anything if I end up without any hair.

Hey it's me again. Just wanted to add something else too. I know that we're not idiots here or anything like that. Of course we know there are going to be side effects. I've worked in a pharmacy for 7 years and some of the stuff I wouldn't give a snake! We have to remember that this is a DRUG- meaning that a foreign body, a chemical, so our body has to adjust and/or reject it. Some of us can take it or simply cannot take it at all. I know for a fact a lot of Dr's get perks from Drug companies for promoting certain meds...such as topamax; topamax is a calming inhibitor, we're supposed to feel more sedated, so there in turn they throw in the line, "well if you start to feel depressed let me know". I'm going to try and do the best i can on just topamax for now. i've heard too many people complain about reactions with effexor/zoloft and topamax. Also I want to say the my side effects are subsiding with time, as they usually do. Because I have epilepsy I feel I have to be on this, but i hope everyone out there doesn't.

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?