United Brachial Plexus Network, Inc.

my sister was recently on topamax and is now bein hospitalized because she was delusional and talking to people who no where in sight.i my self have never seen anything like this before and its pretty scary and dangerous. ive been doin research on this medicine and everyone seems to be saying the same thing about hearing a radio in your head.i don't understand how a medicine can be on the market like this.my sister is really really doing bad to the point they had to put her in restrains.my question is can she have a malpractice suit against this?i would appriciate any info any one has for me thanxx!!!

I'm so sorry to hear about your sister and personally have not heard about such side effects. However my doctor put me on Topomax for Fibrodmyalgia ,,he claims one of the side effects of the drug reduces the pain of this condition. I've been on topromax now since the 10th of June and have so far worked my way up to 150mg a day. So far the only change I've noticed is being very drowzy during the day,I was hoping for weight loss as that is one of the side effects and that's not happened yet. Can anyone tell me how long or at what dose the weight starts to come off? Apparently loosing weight will help my chronic pain ,,

Patricia, Toronto Canada

I have been taking topamax for approximately 6 months now. I noticed weight loss immediately. I am not overweight and have lost about 8 pounds so far. I am only on 50mg per day and I'm gradually working up to 100mg per day. I take topamax for migraines. I have experienced numbness, memory problems, and minor depression at times. However, I'm willing to tolerate these side effects if my migraines subside. I'm interested in hearing from people who "think" they are hearing a radio in their head.
I thought that the other day but never made the association between topamax and the radio playing. Mary

I take 100mg a day in an effort to prevent my migranes. What I've noticed so far is nausea and a painful tingling in my feet--like the "pins and needles" feeling, but to the extreme, to the point where it hurts. Why does this happen?? Does it go away does anyone know?

Thanks! =)

hi my name is wanda i just started topamax 100mg about 2 weeks 2x a day and i also expiriece tingiling ang like needle in my feet and my hands and also confususion too. i also thought i was alone on this too but after reading all this letters .. off all this people here im not alone any more...my mind all off a sudden gets blocked and i just cant think . and go num like cant spell at all its like i cant it verry dificult ... please let me know how you been doing ok take care and god bless you ...

my wife became TOXIC on topamax and was taken off of it
after we went to Nuero Dr.in N.Y.This was may 2002 and
still suffers from Anorexia, Memory loss, Orientation/
Balance, Speech problems. I also do not know what to

Re: limbs being numb,,,my doc told me that was a normal feeling or side effect he told me not to worry as the tingling feeling in my hands and feet just meant the topomax was indeed working. Since I wrote my last reply a month or so ago I've taken myself off of the drug as it didn't prove to be a great weight loss med. for me and the other side effects were very troubling for me the confusion,,my mind going blank ,,,the drowsyness,,,and I found it did not help the chronic pain due to fibromyalgia . That is why he put me on the drug as he said it would help me a great deal,,well being on it for 6wks I didn't see a positive change and I'm on enough drug's not only that I knew I could not afford it as it was not covered on my drug plan and every month it was going to cost me roughly 250.00dollars a month!!!!!! Canadian,,good luck to you all,,

Patricia, Toronto,Ontario, Canada

Hello, I've been taking topamax for over a year. It has helped my headaches. I had terrible headaches. I was in and out of th the emergency rooms, and the hospitals for over a year and I took all kinds and medicines until a doctor finally put me on topamax. I went from a size 7/8 (135) to size 14 (170) now back to 7/8 (138). My delimna is I'm now getting swollen lymph nodes under my arms pits and groins area a rash on my neck that hydrcodizone will not clear up. My blood work show that my crt level in my kidneys is elevated. Is this a side effect of the prolonged use of the the topamax? I haven't found anything else that will handle my headaches. I'm also taking allergy shots because of mold allergies. But I can't find and details of what topomax can do to your kidneys. Does anyone know?

the same as with your liver, long term use can result in permanent damage to all your organs.
Any skin rashes or existing allergies will be greatly exacerbated whilst taking this drug.
Hair and nails will become thinner and more brittle
long term memory loss and tremors are also a problem.
Double vision and loss of peripheral vision have been reported also.
To check on side effects of this drug you need to look under its many names such as topiramate.

My husband just passed away on 7/29/03 at atge 55-1/2...the only new medication he was taking was topamax to treat bi-polar (started on 25mg bid and worked up to 75mg bid - never made it to the 100mg bid they wanted him to take). The NYC ME's office reported an enlarged heart, enlarged thyroid and hardening of the arteries. Could you share with me they symptoms your wife was suffering from? If there needs to be someone accountable for the side effects, and if there are others out there who are in danger of toxicity or other deadly side effects, this stuff needs to be off the market and the maker penalized. I know I'm coming off harsh, but he had no physical health problems other than the bi-polar. He had a complete workup in August/September 2002 after being jumped in NY and being treated for that.