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Joined: 07/14/2010
My Story:
Many of you know my a lot of my history. When I was 1 yr old, I was standing, playing w/my older brother, when I let out a strange sound, went rigid, stopped breathing, fell & started thrashing. Mom picked me up & ran to the neighbor's to call for help. By the time we got there, I came out of it & she took me back home. I had several of these episodes until I was 5. We had no money, so I was never taken to a doctor to confirm these as grand mal seizures. Also during this time, I had what were probably absence seizures. I would be playing or talking & suddenly start staring into space. People would yell my name, clap their hands or shake my shoulders, but get no response. After a couple of minutes, I'd come out of it like nothing had happened. These continued until I was about 5 or 6. During my school yrs, they all seemed to stop.

At 18, I started college & started having strange things happen. I would start out for class & just stop in the middle of the sidewalk not knowing where I was, where I was going or how to get back to my dorm. This would last for up to 5 minutes & then I was suddenly clear again. I got married at 19 & these episodes continued to occur occasionally. I got pregnant & spent the last 3 months in the hospital to prevent premature birth. When I was first administered, I was given magnesium sulfate & went into horrible convulsions. But I had my son later, on time & he was fine. I had 2 miscarriages after him.

A few yrs later, the "lost" episodes got worse, I would be driving, not knowing where I was or how to get home. I was in several close calls accident-wise. About 5 years later, I had a nervous breakdown & was diagnosed with bipolar II. Then I started losing consciousness. The scariest time was when I had my son & nephew w/me. I lost consiousness, at 55 mph, approaching a bridge over the lake. I came to on the opposite shoulder w/just enough time to whip back onto the road, thankfully w/no traffic coming in either lane. I stopped driving for a while, but kept losing consiousness as a passenger, going out in midsentence. I told my neuro/psych & he ran an eeg & told me I had a seizure disorder, but didn't explain anything about it. He put me on neurontin, which I think treats both bipolar & ep. Over the yrs, more odd things would happen & my doc ran 2 more eeg's, each time saying I was still having seizures & changing meds. In my 9th year with him, he put me on depakote. It caused severe tremors & he sent me to another doctor who stopped the depakote & put me on Trileptal. It took 2 yrs to completely stop the tremors, in which time I had to switch doctors - only the doctor I was seeing was just a psych & apparently didn't know I had seizures. After 6 months, he released me, saying he couldn't treat the bipolar. About the same time, I lost my insurance & weaned off my last bottle of trileptal, not thinking anything about the seizures, that they were gone.

In 6 mths, I started feeling like my body would explode. My PCP thought muscle spasms, gave a relaxant, w/no help. Another 6 mths, I felt I was being electrocuted. My PCP sent me to my neuro who wanted to run an ECG. I said NO (I've had 3 - extremely painful), so he let me go. Then I started having like a sensory overload. My PCP thought I was having seizures & sent me back to my neuro who said if I wasn't losing consciousness, I wasn't having seizures. But he ran the 24-hr EEG - extreme seizure activity.

The last 6 mths have been trial & error w/almost every AED there is. Vimpat is the only one I've been able to tolerate fairly well, but doesn't control the seizures at all. I currently have 8 types of seizures - all active despite med. I start seeing an epileptologist in Feb & hope for better results. I have CPS, Myoclonic, Tonic, Atonic & SPS-all 4 types.

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