United Brachial Plexus Network, Inc.

Our 46 year old daughter's neurologist has put her on Topamax for epileptic seizures (due to encephalitis at age five) and we need your help!
She is on 1500 mg. Depokote and 75 mg of Zoloft and 2oo mg of Topamax daily. THE NUMBER OF SEIZURES HAVE DECREASED GREATLY...BUT THE SIDE EFFECTS ARE HORRENDOUS! Side effects include very irritable, sleeps 4-5 hours in the day time but then sleeps well at night. Severe confusion, repetitive speech, unstable walking (has to have someone with her at all times) and can't perform daily activities.
The neurologist recommends that she go up to 400 mg Topamax daily and that there is “light at the end of the tunnel”! At this point we are very skeptical! Please let us hear from anyone who has had experiences, good or bad, with this drug for epileptic seizures. Does your brain activity return to normal after it adjusts to the 400 mg of Topamax, or if you totally go off of it? Help, advice please!

With 9 attempts to fix the problems with generalized seizures topamax saved me... but I have had problems with:memory loss, balance, sleeping problems, and finally the worst sweats in the middle of the night mostly about 5 or 6 a.m. This gives me the only option of washing my sheets and pillow cases every day .. religiousely ...

Please reply to my email address if you have any of the same effects or any suggestions for help!!!!!

thank you...

Hi My brother Paul age 50 epileptic due to brain tumour aged 15 yrs
he is on topomax he has suffered weight loss, peripheral visual field loss ( tunnel vision) agravation of existing skin condition (psoriais) shakes and poor memory loss, but to be fair his short term memory loss was there before the topomax to some extent.His seizures are better controlled with it though.
sorry can't offer any other advice.
Karen

I am on Topamax and Tegretal and I have a lot of the side effects from topamax. Im 16 and my legs hurt, they get numb so do my hands, My head is like a radio were i hear voices sometimes from this medicine and i cant turn them off I dont eat as much i dont really feel good, my mom doesnt think this medicine is for me but i want my seizures to go away i have had them since i was 10 and and I have absence seizures and they have never been in control.
ashley

I have benn eplieptic since 21. Been on everything. Went to Topamax 5 mths ago. Been very tough. I see the light, I think!!! I am finally off all other seizure meds, and only on 400 mgs topamx. No seizures, Thank-goodness, first time in forever. But the side effects are a real killer. I weigh my choices daily......Dead brain cells thru seizure activity (not to mention bodily damage and limited adult life) to adult acceptance of learnig to live with some very hard and unfortunate side effects (wierd voices in my head, powerful weight loss, depression, ) all of which any intelligent human being can teach themselves to deal with, especially if the only other choice is a possible epileptic death....I am sure you can see my point.
Things were worse last month, they are a little better this month and I have hopes they will be a step up next month.What is the choice for peole like us? I have tried all the meds, there are definatly worse choices out there. Actually, I was lucky in before I was prescribed this med< I saw the movie "A Beautiful Mind" and When the voices in my head started up I realized immediatly what was happening to me, and I knew that they were not real. So as scared as I was, I was also able to understand that I would also be able to be like the real "John Nash" and live my life even with this added "entertainment". It has made things easier.
And being seizure free for this long is a blessing.
I wish you all the luck in the world.

Hi Holly,
Wow, I just read your posting and I am so sorry about your seizures but am happy they are under control now with the addition of the topomax. I take topomax as well (for BPI pain) and I was wondering, when you say you hear voices, what do you mean exactly? I am slow, have memory issues. I have very irrational thoughts (suspiciousness), is it similar or are you actually hearing voices that tell you things? It's so interesting to me that a drug can have such a profound effect on our brains!! I know exactly what mean about not feeling like you have a choice.......knowing that the side effects are better than the pain, or seizures in your case. I hate not being me. And you feel like people forget the sharp you and only know the dull & slow you. CRAZY HUH?!

I have been on 100mg og topamax a day for about 3 months for primarily focal siezures due to a stoke I had @ the age of 34. I am now 36.One of the byproducts is that it is helping me with my major depression/bipolar2 or whatever they are calling me this week.All other anti-deprssants and anti-convulsants have been horrable if not life threataning for me due to a bad matabalic urea cycle disorder also.Which means I cant metabalize a lot of medicines my liver turns them into ammonia which gets me into encepholopathy which in turn gets me into seizures lots of fun. So the medicine that is supposed to treat me was making me worse (ie. Depakote,Klonapin,Dalantin)all allmost killed me)not the doctors fault its just that I have a very rare genetic disorder that is very hard to diagnose.University of Pa gave up on me and sent me to Johns Hopkins to figure it out.But anywayI can put up with a little but of spacyness for all of the other problems that topamax has resoved for me. The side effects are very livable considering what hell I have been thru with other stuff

NUMB extremities is very important to tell your doctor about. It could mean a lack of blood to your legs. I hope your doctors knows about this side effect.

I usually don't try to go against my doctor's advice, but I do research it...just to get an idea of where he's coming from. From what I understand, the dramatic increase in Topamax is the absolute worst way to get onto it. The more gradual you can introduce it to your system the better. Especially this one...I did find Topamax affected my thought processes, concentration, etc...very frustrating...plus the usual drowsiness...and interaction with other meds. I had a seizure a very short time after I started on Topamax.
So if I were you, I would seriously question my doctor and his reasoning. At the same time, make a serious effort to get a second opinion and find someone who may be easier to work with and less likely to just throw med at the problem. When doctors do that, they are not listening to the patient who is saying...I feel awful, I am practically disabled BY THE MED...because they are so focused on the seizures.
Good luck! C.

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!!!