United Brachial Plexus Network, Inc.

Jack here again.
I'm up to two hundred milligrams of topamax per day for my epilepsy and, yes, I did have some harrowing side effects(erractic memory, tingling in the extremities etc.), but they have subsided with time. I read a web page called Web Md. and looked up the side effects of Topamax and I seem to be a typical example. The effects are lessening every day, I have not had a siezure in over six weeks now...something that I have not expierienced in over ten years ... so I have to say that for me, Topamax has been good so far.

On Topamax for 8 months. 50mg/day. NO WEIGHT LOSS. I think that this is a bogus selling point for the drug an only a small amount of people actually loose any significant weight. Was warn of kidney problems and to stay hydrated. I installed a water cooler in my office and drink approx a gallon o purified water a day. Several weeks ago I started with urinary problems. Possibly bladder infection, possibly urinary tract infection. Was treated with consecutive potent antibiotics. Symptoms persists. I was told I don't have an infection. Now I have to see an urologist.
Other side effects have been bearable until now, like: eye problems, aggresiveness (got disciplined at work several times for this), memory lapses, lack of sexual appetite, back pain, hair loss.
Unfortunately, the urinary problems are hell and make me non-functioning. The whole idea of taking this medication was to improve my functioning, so the whole purpose is defeated if I had to start to get treated for another illness. If this medication comprimises my kidneys because of long term use, this is serious. I'm tired of being a test rat for the pharmaceutical industry. And, I'm done with Topamax. I'm just grateful for the Internet. Now, we are less likely to have to die because of lack of information. We can communicate with each other and fight back instead of becoming helpless victims of our health care system. Armed with information, we can advocate for ourselves instead of being passive victims of negligent health care providers and greedy pharmaceutical companies.

I've heard Topamax may be a promising treatment for alcoholisim. Has anyone had the experience of not wanting to drink alcohol while on this medication?

I HAVE been having sexual side effects fromt his drug!I am only 23 and have migraines- at first the drug helped tremendlously but now I am getting just as many headaches and am realizing that my sex drive is zilch and there has been no orgasms at all since this drug has come into my life about 6 -8 months ago. After talking to my fiance about it last nite I am stoppping taking it tonite. They say not to abruptly stop though but how else do you stop?

Hi Mary I was so happy to see one more peron on this site who is taking Topamax for migraines. i havent noticed any "voices" or "radio" inside my head but the thought of it scares me. What do you think? I just started taking Topamax last week I am only on 50mg. I will start taking 100mg next week. Only side effects I have noticed so far is tingeling in my extremities, frequent urination, and this is the weird one when I drink a soda now I can feel the carbonation in my mouth but I cant taste it. The soda tastes flat. So I am turned off of soda. Please write back and tell me more about yourself and how you feel. I scared about this drug. Thanks, Fayla

Hi Mary I was so happy to see one more peron on this site who is taking Topamax for migraines. i havent noticed any "voices" or "radio" inside my head but the thought of it scares me. What do you think? I just started taking Topamax last week I am only on 50mg. I will start taking 100mg next week. Only side effects I have noticed so far is tingeling in my extremities, frequent urination, and this is the weird one when I drink a soda now I can feel the carbonation in my mouth but I cant taste it. The soda tastes flat. So I am turned off of soda. Please write back and tell me more about yourself and how you feel. I scared about this drug. Thanks, Fayla

Hello my name is Valerie I am 30. Im epileptic since the age of 9 months old. Ive been controled with dilantin for many years (27 years). My neurologist decided to change my medication to Topamax ( the 2 first weeks 25 mg, 2 weeks after 50mg... up to 100mg. The first week with the 25 mg (I was tired, anxious...) When I went up to 50 mg. I started to have weekness and pain in my legs and arms, everything was numb, I was crying all the time, had anxiety attacks... I went th the hospital and Dr said to stop it. Since then, Its been a week and I dont feel much better. I feel I am going nutts.

please answer me something

Valerie

I went to the ER me to because of the same sumptoms. My Dr. told me to stop Topamax and told me that the side effects could be in my body for a couple of days to a couple of weeks. (I was taking topamax 50mg and Dilantin 100mg).

me too but the doctor made me stop it. Now ive been off for 8 days and I still have side effects but its a 50% better.

I am trying to find anyone else that has had short term memory loss when taking Dilantin. My friend had a brain injury 15+ years ago and has been on Dilantin ever since then. He is trying to convince the doctors to take him off Dilantin, but the doctors feel short term memory loss is not a side effect. He is paralized from the chest down. Regaining his memory would be so helpful.