Tuesday, August 5, 2008

pseudo seizures

I have had pseudo seizures since 2002. It is a fact of my life. It invades every aspect of my life and prevents me from doing many things that I would normally do. I have learned to do some things to lessen the frequency of them. And when they do occur, my wonderful husband can help many times to lessen the intensity or duration of them.... I don't know what I would do without him.

The worst part of having these pseudo seizures is that many people, friends, family, doctors, acquaintances.... think that I am making it all up to get attention or that it is an effect of depression and that I should be able to just "snap out of it".... it is heart breaking. And there was a point when hearing all of these people tell me that it is all in my head made me think that I was a worthless person who wasn't strong enough to deal with stress, or even worse, to actually entertain the thought that somewhere in my head I really was just making it all up..... thank GOD that I have a support network who believes in me and knows that I couldn't make this stuff up. People who were there for the whole thing and can tell me objectively that super ventricular tachycardia can't be faked, that the discoloration on my heart could not have been the result of a person who was "faking it", people who have seen me have seizures, who have been there to see me get knots worked out of my muscles from the involuntary spasms that sent my body into contortions that could not possibly be faked. Pseudo seizures are scary and absolutely REAL.

A friend of mine gave me a link to a website at the University of Michigan that talks about pseudo seizures and dispels many of the myths and misconceptions that people have about pseudo seizures. I think that every person who thinks that pseudo seizures aren't real should read this before they hurt someone by telling them that they are faking it.

http://www.med.umich.edu/opm/newspage/2003/pseudoseizures.htm

also, please visit http://www.non-epilepticseizures.com/information_about_nes.html

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