I now feel I have had epilepsy a long time before the obvious convulsive seizures reared their ugly selves, but of course they are the ones that will always come to mind when remembering back. I had gotten out of bed, walked a few steps and had an atonic (drop) seizure. It scared me silly. The last thing I remembered was taking a step. I got up, took a step and went down again. Okaaay, this was freaking me out big time and I was scared. The third time I yelled for my mom. I told her I couldn't stand up. I didn't know any other way to explain it. 

She went to help me up and it felt like someone stood behind me and jerked me backwards hard. My arms flew up above my head at the same time my upper body went back. I was terrified to even try to move again. My mom called my stepfather and then our doctor and described what was going on.

The doctor told her that he would arrange an EEG, that it definitely sounded like seizures. My mom brought me a pillow and blanket and told me to stay where I was and try to relax. I remember feeling totally keyed up inside and my stomach hurt really bad. I couldn't relax, my mind was all over the place...I thought I was dying to be honest, I really did.

After what seemed like forever, my mom let me try to get up to move to the couch. I was jerking mildly, no big deal to me now when I do, but then it convinced me further that I was dying and no one wanted to tell me.

My stepfather had a son die young due to repetetive grand mal (tonic clonic) seizures and calmly explained I was having seizures, he didn't know why but we would find out and I would be fine.

In the days and weeks to come, my seizures increased, my world as my teenage self knew it fell apart, I learned the cruel lesson of finding out who my real friends were, the EEG came back normal, no meds were prescribed and my parents fought for someone to listen.

It took a little over a year, a trip to MCV in Virginia after total desperation...and the very first sleep deprived EEG showed epilepsy. I was given my very first dose of meds before I left the hospital that day. My stepfather took a copy of the tests to my neuro where we lived that had told them nothing was wrong with me - I was merely seeking their attention, and told the neuro he was in the wrong profession. He had never showed the keyed up anger until then. My stepfather knew too well the danger that seizures could bring.

Silly me thought the meds would make the seizures completely stop. That didn't happen but it did decrease them.  Still, it was so great to know the medical field was listening. I still had oodles of tests and observations they wanted to do and even though they were exhausting...I was so glad they were being done.

After becoming a member here and reading about Simple seizures, I realized I had been having seizures alot more years than I had realized. The non-convulsive seizures are so easy to talk yourself into ignoring. Like the smells, tastes, sense of doom ( once it is over anyway), etc. Absence seizures lasts a short amount of time and you are able to resume what you are doing afterward so a kid would ignore this unless, of course, it was an extreme amount a day which some people do have to deal with. I don't know how many times I was accused of day-dreaming when I knew I hadn't been.

I do know that the simples and absences go back at least as far as when I was ten. And it felt good to realize there was an answer for all the weird tastes,odors, etc.

God love this site and the people here...they have answered so much for me.

-Spiz 

~ We all matter, even when we haven't the slightest clue why ~