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Hard to Diagnose.
Thu, 06/24/2004 - 10:58Topic: Family & Friends
Is there even one person out there who DIDN'T know what was wrong from the very start? I have seizures, usually, in my sleep. It has been 12 years now. They started 9 months after a serious car accident. After about 5 years one Neurologist witnessed an episode and stated that it "looked like a Complex Partial Seizure" We tried Tegretol and Rivotril, nothing. We have read quite a bit on this type of seizure and it fits my behaviour. I have to live in a ground floor or basement apartment due to the danger of a balcony or stairs. After 9 years they finally put me on dilantin. It seems to work. But we still don't know 100% what is wrong with me. I have met a few people with epilepsy. Most of them were extreme. Without medication it was 100% noticable. Not with me. They happen when they want to. Has anyone else experienced this??? It would help to know that I am not the only one. That I am not crazy. Any response would be greatly appreciated. Thank you Stacey.
Comments
RE: Hard to Diagnose.
Submitted by mexican_fire on Wed, 2004-06-23 - 15:42
How about a Tonic seizure??Those can cause this stiffening up yo uwere describing.They cause stiffening in the face, jaw, neck, back, and limbs. They only last less than a minute. Not everyone experiences all of the areas that can be stiffened. You might only get stiff in two places, while someoen else stiffens in 4 places.Those are just the common places that stiffening occurs.Just trying to be of some help. I hope you are not mad or offended by any of what I have said.I would feel bad if I did that.Nancy
RE: Hard to Diagnose.
Submitted by USMALE on Thu, 2004-06-24 - 10:58
Stacey,You're not alone. sometimes I wonder why it takes so long and so many different doctors to diagnose a seizure problem. I could try to put all the maybe it's this or thats together, but that's exactly what was done in my case before I was properly diagnosed. I was on a number of different meds and combinations of them before finally hitting on the right one. I was lucky. I found a doc that I was comfortable with and trusted completely. He included me in all decision making discussions from the beginning (I was 14). Would we have found the right combo without trying different ones? No. It wasn't the first or the second one we tried. We got there though. He's gone now, but I seem to have found his female counterpart. If you trust your doc, stick with him. If that trust ever leaves and you can't get it back, it's to your benefit to to do what's best for you, not what's best for your doc. (There I go singing that song again). I'm not going to attempt to "diagnose" the type of seizure. I'm not a Neurologist. I'm just one of the "lucky" people in the world who has epilepsy who has also done a lot of research. But I Might be able to help with some info. I have to go through my files, so it might take a while (my filing system is so organized that I can't find anything without a search warrant). I'll email it to you as soon as I dig it out.
RE: Hard to Diagnose.
Submitted by momof1 on Wed, 2004-06-23 - 15:32
No they are not complex partial. I have those. I scream, run, you name it. My post-itcal period lasts for hours. I'm thinking these feelings are actually simple partial. I get the same feeling, but nothing happens. I do know what a complex partial feels like. Thanks though