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New to the site
Fri, 03/10/2006 - 13:47Topic: New to Epilepsy.com
Hello everyone, I just registered today and I am quite impressed with the amount of people that are members to this site. I do not have epliepsy but my husband does. His seizures were basically contolled until he fell 10 ft. of a ladder at work when the ladder shifted in June 2005. He was knocked unconcious and since them his seizures have become uncontrollable. He has about 200 seizures a month, partial and grand mal. He has a VNS, that does not work, he has been on EVERY medication, and can not have surgery becuase it is in the left temperal where his vision, speech, memory, etc. is. They have basically told us that there is nothing else that they can do medically. His short term memory has started to slip, and that is really scary. He is on Dilantin 600 mg. Lamictical 300 mg. Lyrica 1200mg and Ativan 2 mg a day!!! NOTHING IS WORKING!!!!He is 27 with a full life ahead of him. We have three girls 11, 7, and 5. He can not drive, be left alone for long periods of time, and can not work. He has applied for disability, and we are waiting for the outcome, hopefully soon. It is the hardest thing WE have ever been through. It's hard on me becuase everything is on me now, I am so frustrated that I can not do anything for him. I can only watch and pray. He will not let anyone else do anything for him but me because he feels like he is a burden. He also feels like he is a burden to me no matter how many times I tell him he's not. I just wanted to know if anyone else has or does expereince uncontollable seizures, and if you do what has been doen to help them? Does anyone know of any other treatment that we could try?
Jacqueline
Comments
Re: New to the site
Submitted by marj20012003 on Fri, 2006-03-10 - 15:03
You are not alone. My husband has epilepsy too. We have four children-11, 10, 4, 2. As a matter of fact I just came home from work because the paramedics called me and said he had a seizure and they were taking him to the emergency room. He is a veteran so they are taking him the VA hospital, which by the by won't allow children, so all I can do is sit here and wait. I feel the same frustrations. He can't find work and when he does the seizures always have an impact. Can't leave my younger children with him out of fear. I am thinking of you and will keep you and your family in my thoughts and prayers.
Re: Re: New to the site
Submitted by Jacqueline Hill on Fri, 2006-03-10 - 15:28
Jacqueline Hill
Thankyou very much, I to am thinking of you and your family, and my prayers go out as well. It's just so hard to deal with at times. I am use to being able to fix things, no matter what hey are, but I can't do anyting about this, only pray. It is so scary at times, because I don;t know what to expect with each seizure, will he come right out of it, what if this one is so big that he doesn't come out of it? I hate to feel that way, and I am FULL of faith, I guess that's what scare's me the most; fearing the earthly and not totally relying on God, but no matter how hard I try, that small feeling of what-if is still there. Thanks for your reply, it's nice to know that I'm not alone out here!!
Jacqueline
Re: New to the site
Submitted by benji on Fri, 2006-03-10 - 14:25
hi jacqueline my daughter has uncontrolled epilepsey but hers are when she sleeps has them every night 15-20 been on lots of different medication but nothing works they started when she was 18 months old she is now 24 years she has to sleep on a mattress on the floor because she ofen falls out of bed none of us much sleep because wehear her she cannot spend any time away from home because of this so far she has been on tegretol toprimate lamict al keppra cloazapan clobzam is the only one where there is some improvment but she only can bup toe on them for 7 days during a period because her fits are even worse then up to30 a night andclobzam is addictive