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partial complex seizures

Sun, 07/25/2004 - 16:24
Hi everyone, I'm new at all of this. I've never written in to chat rooms before but I could really use some information and advise, so I thought this probably would be a good place to start. My 25 year old son has been having Complex partial Seizures for about 5 years. He has Sclerosis of the frontal lobe. Until now his seizure have always been a lapse in time where he doesn't remember what happened in that time period. He has a strange look in his eyes but otherwise appears normal. 2 weeks ago he started what we thought looked almost like a muscle spasms in his left arm. By morning they were down his whole arm and leg. Now we know they were seizures and the doctors say he has epilepsy. He spent 12 days at Yale New Haven Hospital where his doctor was doing tests. The doctor says this is a new way the seizures are manifesting themselves. He is on 200 mg TOPAMAX 2x daily 1200 mg NEURONTIN 3x daily, 300 mg TRILEPTAL 3x daily. The TRILEPTAL is the new one they just put him on. I don't know anyone who has taken thid drug or if there are side effects. He was on Keppra before this happened. The Keppra didn't seem to help at all. He was just very cranky on it. He seems back to normal now. I found some wonderful websites with information about this and that has helped but there is nothing better than people. Has anyone had similar problems and can offer some advise. Sorry I rambled! ThanksPenny H.

Comments

RE: partial complex seizures

Submitted by e_nuffofthis on Sat, 2004-07-10 - 08:36
Hi Penny:I have heard of people being on three meds at once, although they usually try to avoid it. Maybe if it works they will try to take him off one eventually. Also, what they say about the seizures manifesting is true. They are finding new pathways in the brain to create havoc.Has he been tested to see if he is a surgery candidate? I have to be honest and tell you I have not heard good things about that neurology dept. I would consider taking him for another opinion.Here is a link to meds, click on for side effects:http://www.epilepsyfoundation.org/answerplace/Medical/treatment/medications/typesmedicine/

RE: partial complex seizures

Submitted by pennyhickey on Mon, 2004-07-12 - 09:17
Hi, They were testing him in the hospital to see if surgery was an option for him. They said sometimes it is not an option at all but maybe it would be and they could be the answer. Hartford Hospital reffered us to Yale New Haven. The said it was the best. Where would you go would another opinion? Thanks for the website about the meds! and thanks for the advice.Penny

RE: partial complex seizures

Submitted by tibet2 on Sat, 2004-07-10 - 12:16
((penny))your son has had epilepsy since he started having complex partial seizures. i'm kind of surprised it wasn't called "epilepsy" for the last five years.... but i guess it's a matter of semantics. some people are more comfortable with the term "seizure disorder". what do the doctors have to say about the frontal lobe sclerosis? the new seizures are classic jacksonian seizures. if you look very carefully the seiuzre is likely to start in the thumb or pointer finger and the "march" up the hand to involve the arm and, as you found out, they can eventually spread to involve the entire side. this seizure type is named after the 19th century neurologist john hughlings jackson who first identified the progression of this sort of motor seizure. i take trileptal... and i wouldn't want to take it in addition to the other meds your son is taking... that's a lot of medication. is the doc planning to reduce one of the other meds? the "gold standard" for treating epilepsy is still montherapy.... and if you think about it, the old meds weren't controlling your son's seizures.... so it there is a certain logic in eliminating them if trileptal works. deciding which med to eliminate is a tricky business - but i would hope the docs are thinking about moving in that direction.

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