my daughter switching from dilantin to topamax, need help - Epilepsy Message Board

natasiatarot · 05-10-2002, 08:57 PM

my daughter is 17 and has seizures since age 5, not many, not daily, but enough for constant meds and worry. she has been on dilantin because she is allergic to tegretol. she is having complex partial seizures for the past 6 months, since a grand mal in january. the doc is switching to topamax and it sounds like a good thing, but i would like input. does anyone else take it? how is it working for you? and i would also like info on complex partial seizures. i am new to this web site, but have read alot of the postings and it is nice to know that there are others out there with this awful thing called "epilepsy". i will be glad to hear from anyone out there that can help us. she is very upset and i am worried

Piano · 05-12-2002, 02:58 PM

Hi, I had terrible reactions to Topamax, but then again, I've heard some people call it a "miracle drug." My most bothersome side effects were numb and tingling hands (painful), vomiting 5+ times a day, headaches, b*tchiness, and confusion. There were others, but those were the worst. Some people I've talked to never had issues with it, tho. Good luck and keep us posted.

Piano

natasiatarot · 05-12-2002, 04:14 PM

thank you for replying. i am hoping that she does well, she has been on it for 3 days now, weaning off the dilantin, and the headaches are lessening and so far, knock on wood, no complex partials today. she is still very tired, is resting now. so far so good. thanks again for the reply. nice to know there are others out there

rsorrentini · 05-13-2002, 04:09 PM

hello my son is 10 years old now, and he has Lennox-Gastaut Syndrome, he suffers from many types of seizures, he has been on most of the medications, now he is no depakote, neurontin, topamax, and diastat.
we now have him on the topamax in the morning and zonegran in the evening. Topamax makes you lose your appetite, so watch out for that. It has side effects like all medications, but like everyone is different so well the effects of the medications be to your child. Be strong, always ask questions, take notes, remember you are your child best advocate.

PatM · 05-14-2002, 01:31 PM

Everyone with epilepsy is different. From my own experiences with complex partial seizures, i would tug at the neck of my shirt or play with my lappel. Durring the seizure, i will be unaware of my actions and i am told that i make a grunting noise. Durring my simple partial seizures i am aware of tugging at my clothing and i am aware that someone may be talking to me but i can not coherently respond to them. i do not make a grunting noise durring the simple partial. my side effects with topamax was an awfull mood swing. others i have spoke at a monthly group meeting in real life have experienced simular side effects. i am now taking dilantin and lamictal. don't forget everyone is different.

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