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my misdiagnosed epilepsy

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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!

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