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Old 01-25-2005, 01:19 PM   #1
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encarrasco HB User
Question Anyone been to Epilepsy Center for Eval?

I'm going to an epilepsy center for a 24hr 3 day evaluation. Has anyone been through one of these? I just want to know what to expect. My 2nd opinion doctor doesn't think I just have epilepsy, he thinks that a car accident I had 4 months before my symptoms appeared is the cause of the seizures, back head pains, migaines, muscle pain, etc. etc. Do you think this evaluation can confirm that?

 
Old 01-25-2005, 10:50 PM   #2
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Anyone been to Epilepsy Center for Eval?

TBI can be the cause of epilepsy (re:car accidents). This can confirm what region of the brain the seizures are comming from.

Have fun wearing the wires GLUED to your head. (grin)

Bring books to read, or crafts to do when in there, whatever your hobby is. It's not a whole lotta fun, but if you can have people visit you it helps kill time. If you are on meds, they MAY bring you off meds in some clinics to see if that will trigger seizures; or LACK OF SLEEP (to trigger seizures) so they know WHERE yours occur exactly. By monitering you, they know your seizure mannerisms and what you tend to do. It's all on tape except the bathroom.

It is VERY HELPFULL in a better treatment (more effecient medication) for patients.

ONLY RECOMENDATION: Have family friends bring in real food. You'll be thankful after eating hospital rubber.

Fingernail polish remover works WONDERS for removing the glue on your scalp/hair. You'll be washing your hair 3 times to get it all off when it's over.

--Travis

 
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Old 01-26-2005, 07:52 AM   #3
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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.
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Old 01-28-2005, 07:43 AM   #4
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Re: Anyone been to Epilepsy Center for Eval?

I've stopped having seizures, thank god, but I have noticed they peak right before my period. They scheduled it so that I'm in right before I'm supposed to start. I was taking Keppra, but that didn't seem to work on me, so they've started lowering my dosage and I'm on the Lamictal Starter pack right now. I hope they can find out what is wrong. The neuro thinks I may not have epilepsy, that there might be something else wrong that is triggering seizure activity. He said if my EEG didn't come back abnormal, he wouldn't be so worried. But it was abnormal, I guess that's why they are going to admit me. Thank you for your help, I feel more prepared now. My parents are coming to town to be with me while I'm in the hospital and to help my husband with my kids. They took vacation time, I love them!

 
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