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Hard to Diagnose.

Thu, 06/24/2004 - 10:58
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 mommy2kyra on Mon, 2004-03-15 - 14:32
Stacey,I had complex partial seizures for 6 years before they were recognized (and that was only because I had a grand mal and was sent to the hospital). Complex partials are historically difficult to recognize and are most often mistaken as panic attacks (like mine were). The last 2 or 3 years before diagnosis, I only had them while sleeping..usually pre-menstrually or if stressed.I would assume that since you have a neurologist, that you've had all sorts of tests (EEG, MRI...). All have come up normal? Have you also done a sleep study? That, if you haven't done it already, might be your best shot at finding some abnormal brain patterns. Sleep-deprivation often brings on seizures, so maybe sleep short nights for a day or two before..that ought to do it.Just from my own experience, Dilantin wasn't enough to control my seizures. I still had occasional nocturnal seizures (around hormonal fluctuations or high-stress), and needed something more. Depakote worked great...you might want to try that one. Phenobarbital has been my med for the last few years, but it has drawbacks too.Heather

RE: Hard to Diagnose.

Submitted by momof1 on Tue, 2004-03-16 - 11:07
Heather, You have replied to my posts twice. I would like to be able to email you personally. my email is Kdzrcool@yahoo.com. I am still trying to understand how I feel and I am going through alot at the moment. Getting to know someone who knows exactly what it feels like would be very nice.Thank you. Stacey

RE: Hard to Diagnose.

Submitted by T.Bob on Thu, 2004-03-18 - 23:20
Hey momof1, I have had seizures for 29 years, starting at age 14. At first I had no idea what they were. My mother witnessed one and that got the ball rolling. I don't know what kind of seizures mine are classified as. It's like a combination of absence and clonic. Staring spells with or without a jerking of one arm. Some last just seconds, some for close to a minute. I don't lose consciousness and am aware of my surroundings when I have them. Neurologists have no idea why I have them. I had a head injury to the right front quadrant of my head that required I think 7 stitches back when I was about 10. I have no idea if the two are related. I, like you, have the bulk of mine in my sleep. They seem to be triggered by a lack of sleep on my part. If I don't get exhausted and get my beauty rest, I am OK. The days that they do bother me, I usually have one first thing when I wake up, and then fine the rest of the day. They are definitely sleep related. I haven't been to a neurologist in over 13 years because they can't seem to help me any more than they have. I take tegretol now and have been for about 20 years. I started on dilantin but it reeked havoc on my gums. I pray that one day they will leave me alone. I just found this site and now I know I am not alone, imagine the irony. I've always kept this to myself and never discuss it. My employer doesn't know nor do my closest and dearest friends. I don't want to be treated "special", just equal, that is the main reason I keep it to myself. Just understand that you are not crazy and you are not alone. Take care and God bless........

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