Re: Anyone been to Epilepsy Center for Eval?
Oh my, this thread brings back memories of nightmares !
First experience with VEEG- they tried to make me have a seizure. Couldn't get me to have one to save my life. Tried sleep deprivation (2 days straight), the bike (you all know what I'm talking about!), video games, even stressing me with math problems. Left place without ever having a seizure. They told my dad I had pseudos, but my neuro back home didn't agree. Then not two weeks later, ended up getting second VEEG for a different reason. My father would not send me my meds ( I was a dependent of his, using his insurance, but lived with mom- they sent the meds to him, and he had to send them to me). Ended up in an episode of status warranting being put in a coma. They put me on VEEG following that to monitor activity. Continued to have sz.
As for the actual VEEG- boring as hell. It is so frustrating being tethered and resembling some kind of alien. I used to pace my hospital room because I was about to go crazy. Ended up just driving the techs crazy trying to follow me. Then I kinda got stupid with the camera. Had fun making faces at the techs and such. Definitely amused my neuro. They brought in a stationary bike for me, video games, movies to watch, crossword puzzles, even some of my homework, anything to keep me amused. I had several friends who worked at the hospital, so it helped with giving me interesting things and with the visitor situation. Make sure you bring stuff that buttons up rather than pulls over. Bring comfy clothes because it definitely will help. You'll just be video taped 24 hours a day, and you can't so much as sneeze without them knowing about it. You'll learn to love when something triggers the seizure alert stuff and they come in asking you about blue dogs and where you are. Mine went off every time they saw potential epileptic activity, even if I wasn't having a seizure. I had my first one done at Univeristy of Alabama (worthless place, would NOT recommend it), second was done at Vanderbilt (could not have asked to be treated better). Really gave good info, even if it came at a pretty high cost. Really enjoyed having the turban deal going on (they wrapped my head due to severity of my sz), they don't always do that though. Ended up washing my hair about five times to try to get all glue out. Washed, brushed, then went through with a fine tooth comb to get it all out. Nail polish remover really does help though. Best wishes, and I hope you get some much needed answers.
Loving life and living every day to the fullest.
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