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Posted by Dana on October 30, 2000 at 01:26:26:

In Reply to: complex partial status, fear of posted by catherine on October 23, 2000 at 18:14:46:

Hi. my daughter has them. And I was told they are a very common seizure. She has starring episodes, lip smacking (like gum chewing) sometimes a one arm twitch. They can last from 10 to 90 seconds. She comes out confused and has memory problems too. She sleeps after each one. I had to video tape an "episode" before a neurologist believed me. So I got a second opinion. That really helped. Make sure you have a doctor that you are confident with. And one that will sit down and listen to you. This head honcho of UCLA actually gave me his home phone number as a last resort. Good luck to you, hang in there, God Bless, Dana.

: 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.

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