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I'm not on drugs I'm having seizures!

Fri, 03/16/2018 - 14:44
I am a 30 year old man from Pennsylvania. I started having seizures around the age of 14, I came home tired one day and when my family couldn't wake me for supper they realized something was wrong. Unfortunately it would take years for the doctors to believe my mom and I when we said I was having seizures. They said it was depression, that I was faking or that I was on drugs and no one believed us until one woman at the doctors refused to give up until we were believed. The only medication that works for me are Topamax and Lamecel which I take once a day. 4 years ago I received a depth electrode implant and I recently had the battery changed and a wire switched. This past summer my depth electrode started shocking me, the doctors thought I was crazy because you shouldn't be able to feel anything but they tested it and I really felt it. They said they took out the broken lead but when I went to interrogate the other night it was the worse pain I have ever felt it was like burning hell. I have left temporal lobe scirosis and most of my seizures are on the left side. I am having a Wada test done next month but I'm not really feeling up to having the my left temporal lobe cut out especially since they have no way of knowing how I will be afterwards and my memory sucks as it is. They also say it won't stop my seizures 100% We don't know why I started having seizures I used to have nose bleeds all the time until the seizures started and I fought with high blood pressure until the electrode was put in. I've only been triggered by flashing lights once but if I play video games to long I'll seize up. Most of the time if I fall asleep listening to music I'll seize up the next day. When I feel one coming on my stomach will hurt or my chest I used to get weird tastes or food would taste off but not since the depth electrode went in. the DP is really good for me I don't sleep all day after a seizure and while I still have a least one that is caught every week it's no where near as bad as having them everyday. I just wish I could be normal and be able to drive and work without fear that I'm going to seize up and burn my hand again or end up in cuffs again because they think I'm O.Ding. I have a great support system my mom handles my medical stuff and my girl helps her out and me a lot. I just feel like it should be me supporting them rather than them taking care of me all the time.

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