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Old 07-22-2004, 12:51 PM   #1
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maggie39 HB User
my misdiagnosed epilepsy

Hi everyone. I was misdiagnosed with epilepsy, but now I'm fine, and I want to share this in case one of you is also misdiagnosed.
About 20 years ago, I was diagnosed with epilepsy. Grand mal kind of seizures. I would get very sick to my stomach, hot, sweaty, short of breath, then unconcious. I would wake up shortly after hitting the floor and while I would still feel pretty sick (often would need to throw up or have diarhea) I was never "confused". People would say I was very pale, usually appeared to be "fainting" but sometimes was described as having a little movement - like twitching, occasionally a "tonic" state with the stiffness and arching back, lots of sweating. At least once I did "cry-out" as I went out.
I was put on dilantin, but continued to have these events. Finally after 10 (miserable) years on the dilantin, I went off and just didn't take anything. I continued to pass out. Then one day, when one of these events occured, there just happen to be a paramedic there. He said I fainted. When I explained that I had epilepsy and that my seizures just look like fainting, he insisted that he thought I fainted. Since I was never totally convinced of the diagnosis, this prompted me to do a little research on the internet. I found something called "neurocardiogenic syncope" and bingo - symptoms are very similar. I went back to my neurologist (mind you this is the 3rd neurologist who ALL said "epilepsy") and I asked him about my EEG. He said it had some "blips", so I asked him more pointedly about whether there was a "spike wave pattern" indicative of epilepsy, to which the answer was no. At my prompting, he sent me to a cardiologist who felt that it was neurocardiogenic syncope - basically under certain circumstances, my blood pressure drops precipitously and I pass out - if I'm out long enough, some seizure like movements can happen. I've been treated for that and sure enough - after 20 years of passing out 3-6 times per year, I've now gone over 18 months without one episode!!
Most of you probably really do have epilepsy, but if you have doubts, follow up on those doubts!
Maggie

 
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