Posted by catherine
on October 23, 2000 at 18:14:46:
It has been two years since I suffered a period of complex partial status lasting three days. I am still frightened of it. I have had grand mal epilepsy since I was seventeen, it's genetic in me: my sister has it also, but had never had any complex partial seizures. My family were very frightened, of course, and there were situations I see echoed in other messages at this site of the hospital not understanding what was happening (it took several hours, apparently, to convince them that I was not into recreational drug use). I can't remember any of the things I did and said - refusing to swallow, referring to my sister as Bill Clinton, not being able to say anything other than yes, etc.- but I can remember starting to come out of it. I remember being in what was clearly a hospital, at night, with a pain in my arm (a drip) which I interpreted as a broken arm. I had also clearly wet myself, which horrified me more than the broken arm. But I had no memory. I did not know who I was, or even what I was. I had no memory of family connections or human experience. I was totally alone. It was the most frightening thing I have ever experienced.
Since then, I have been unable to let it go. Now, when I have seizures or, even worse, days of twitching and being unable to think straight, there is part of me that is convinced that this is just the first step back into that limbo that I was in in hospital. My neurologist has done nothing other than point out how rare complex partial status is, and I don't think I have ever spent more than five minutes at an appointment with him before I was hurried out the door.
I want to find other people who have been through a period of complex partial status. I need to find somebody that knows the total fear that I had, and that I am still gripped by.