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partial complex seizures
Sun, 07/25/2004 - 16:24Topic: Surgery and Devices
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 seeker2 on Wed, 2004-07-14 - 18:37
Hi again.Thank you for the kind words in your post,all of which I agree with...(Not that you are an idiot.,they don't read I should imagine.)You are so right in that,there needs to be more understanding, research, that is modern and ongoing.It will be needed in the future for the families that are still to come,so they can read and learn.Hopefully with the work that is done by the various organisations that do work on a charity basis-as well as the official ones,then that day will be sooner than later.We can but hope and pray to the Heavens,or,if of a different faith as we are all drawn from various places,whatever Gods we worship to put an end to the myths that still surround the topic under discussion.If you liked those links and found they helped,then please try these?(Everything you need to know in one spot.)and might give you the answers that you and your family need,if you use the search engine within them as well as the ones-and articles upon this site and others in your quest for knowledge.http://search.nlm.nih.gov/homepage/query?FUNCTION=search&PARAMETER=epilepsy&DISAMBIGUATION=true&START=0&END=25&MAX=250&ASPECT=0I'm sorry to read that his hospital testing experience was as it was.I hope his doc/neuro were understanding about that after what he went through when you told them about the side effects? I read that yours were pretty torrid as well,though glad to read that you toughed it out with the painkillers(seemed that you had no choice there from reading your post.) and am so glad that one of the articles that featured Imitrex was helpful in giving you insight.This might help as well in giving you knowledge as to the various med combinations and what to expect from taking them that can happen.Though I think you know all there is to know from the last links.Still,it might help.http://www.migrainehelp.com/ I'm sorry to hear about your son and the way you feel about him is plain to see,as is your description of how he feels regarding being scared.I mean that,it's not a pleasant feeling, and it's tough when as a grown man-which he will see himself as,that he has to try and handle this.The pressure that goes with it and amongst his peer group,and the pressure with that as well.I just wish there were more research articles written for men? No disrespect given,but has he tried talking about this himself in a forum.I know that EFA has various articles aplenty,and do good research and fund projects with the money they raise- and they do have forums as well as that.Your son could try posting there if he felt up to it,and talk through how he does feel?This organasation as well does good work and campaigns to further knowledge.I've been hearing a lot about it today.http://www.epilepsy.org.uk/links/index.html
RE: partial complex seizures
Submitted by pennyhickey on Thu, 2004-07-15 - 13:32
Hello, The hospital testing at Yale was fine. Actually they treated him really well there. Everyone was really nice to him. they just could finish testing because the seizures stopped. It was Hartford Hospital that was awful. They just doped him up and sent him home. He is really scared. We talked for a long time last night. He said, what if i get a job a i have a seizure at work in a meeting etc? It is embarrasing for him. It's not like having a headache. But I think the more he reads and the more people he meets that have seizures, the more he will realize that he can live a normal life. The deacon at our church has seizures. He is also a teacher at the catholic high school in our area. I didn't know he had seizures until he told me. I can only imagine how he feels. We also talked about causes for seizures and he wondered if the video games could be what was causing his seizures. He hasn't played the games since he came back from the hospital and he hasn't had any more seizures. He use to play the games quite a bit. I told him how i started posting and how it helps me. Maybe he will decide to do the same. Thanks for the sites.
RE: partial complex seizures
Submitted by pennyhickey on Wed, 2004-07-14 - 10:41
Hi, Thank you for the research article and the websites! They are great. I like to read anything I can get that might help us understand. The Topamax side effects are a lot less if you start out taking it at a lower dose. It takes longer to get up to full strength but it's worth it. He experienced the weight lose (38 lbs which is 18% of his weight), a slight slowness of speech, and that seemed to be it (that enough). When he went back on after his hospital testing they put him on all at once and he had the change in taste problem also and the fatigue. They seems to be wearing off some. We never had epilepsy in the family that I know of, but who really knows. You know how weird people were years ago. Heaven only knows what they might have thought. My migrains were awful. When I first had them 30 years ago there was nothing but pain killers to take, and they just drugged me up. I would only take them if I was ready to die from the pain. Now I am on 100mm of Topamax daily and I also have the Imitrex tablets that I can take when I feel one coming on. Sometimes I wake up with a full blown one. I read the article where it said you can take the Imitrex even then and it will help some. I didn't know that. So thank you for that article. I started slow, 25mm, but still had the typical side effects. I had the taste change, the tingling of hands and feet, I lost 27 lbs (17%), fatigue, confusion, but all of that but the weight lose disapeared after about a month. Shawn is a really great guy and he is being so patient with the whole driving thing. I know it must be really hard on him to have to let others drive him around. He was always the designated driver because he didn't drink because of his meds. He has to wait till he hasn't had one for a certain amount of time. I think its 3 months. I know he is also very scared. I am very proud of him.You are right, the reading and research helps to understand about the meds and the desease. At least I don't feel like a complete idiot when I'm listening to the docs. Thanks for your help!