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Looking for some answers

Sat, 08/11/2007 - 14:04
I have a bit of a long story to tell so I hope all will read and help me out Thanks Tammy Ok here it goes my boyfriend Eddie started having seizures 4 years ago he is now 31. He came home from work with a bad head and the next thing I new he was on the floor shaking like mad. I called 911 and he was taken to the hospital were they did an EEG and catscan. we were told that he had epilepsy. From there on he has continue to have seizures to dispite all the meds he takes. Nothing seems to work. There are times he has seizures fo 30 days in a row. Is there anybody out there like him? Is this the way it is? He has been in hospital a couple of times but they seem to say nothing. Change his meds up his meds ect. His neurologist tells us that he can't even figure out whats going on. We live in Canada and we have been told that he is on the second last med that is out there.Why is there nothing working. His EEG shows a slight mark there but they say not enought to be causing all these seizures. They are saying it might be deep down and they can't see enought of it yet. He is booked for another MRI in 3 weeks. He just seems to be sick all the time he can't work most days he can't even get out of bed. Forget to mention we have 2 small kids one who is 6 and the other who is 2. He feels bad that he can't watch them grow up. Most of the time he feels the seizure come on he tells me. H usually gets a bad head,a faint feelng,tingly, sometimes I just have enought time to get to him and get him to the floor. There are times when he has them in his sleep and there are times he can be getting a glass of drink out of the fridge and he just drops. Most all the time he shakes at all four limps for abut 30 to 120 sec. Then he stops it takes a bit then for him to come 2 and he is confused then for a couple of mins. he is even after pushing me away trying to get away from me. Then when thats all over I get him to bed and thats were he stays for hours asleep. There are times he don't shake he just tightens his body up and twists around on the floor for a few mins then its over. Is there anybody else like that?Is this a seizure 2? I forget to say the he wets himself most of the time and is usually stomach sick after. Just looking for some answers on whats going on is this the way seizures are is there anybody else that don't have any control at all ect. Just looking to chat. Anybody can email me Thanks so much Tammy tammypower_74@hotmail.com

Comments

Re: Re: Re: Looking for some answers

Submitted by GodivaGirl on Sun, 2007-08-12 - 08:52
Really quick - it's interesting you say he's tried "Topomax, Keppra, and Clobazam".... Has a doctor ever thought to try a combination of meds? I've always been on at least 2 meds since I was 16. Most recently it's all 3 of those. Often times one med alone doesn't work. It also helps to pinpoint triggers and manage those (i.e. I can't have aspartame). I've also seen a great stress counselor in the past. Keeping a seizure journal to find & manage the triggers has helped me just as much. Another thing perhaps may be alternatives & complimentary treatments - but I'd talk to a neuro while he's doing that. i.e. Omega 3 foods seem to help me (this I just cook with - no evidence really either way, from what I know) Some people get into other things like valarian root & other herbal remedies. That's what I'd talk to a neurologist about. Good luck! Erin

Thanks for answering me. He

Submitted by tammyp on Sun, 2007-08-12 - 14:23
Thanks for answering me. He has been on combos of drugs right now he is on 2 Gabapentin and Dilantin. Has been on up two 4 different ones at one time.

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