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Newsgroups: alt.support.narcolepsy
From: Tim J. <tj66...@usa.not>
Date: Mon, 20 Aug 2007 14:51:51 -0400
Local: Mon, Aug 20 2007 2:51 pm
Subject: Re: I'm just recently dignosed with narcolepsy and at first I thought I was going to be okay but I need to talk to someone
On Mon, 20 Aug 2007 10:44:52 -0700, smaj2...@aim.com wrote: Sorry to hear about your problem, but I'd glad you finally got a >Hi, I'm a 17 year old girl who is narcoleptic. I run cross country and >track at my high school and during a race I passed out cold only later >to find that it was acutally a sleep attack with paralasys? [I can't >spell]. It's scary. At first I think I was so fustrated with trying to >find out what is wrong, a normal, in extreamly good shape, healthy 17 >year old doesn't pass out randomly. I'm always tired. I've been tired >every day of my life. I can sleep 20 hours straight and still be >tired. I got a CT scan, MRIs, X-Rays, I was hospitalized after that >whole episode that was also extreamly embarassing, EEG, I almost had >to get a bone density scan. Finally my Dr. ordered a sleep study. That >was horrible. So many wires. All my life I thought that sometimes at >night I couldn't fall asleep or stay asleep. Even with all the wires >and sticky things I slept a soild 8 hours without moving. The next day >I did the nap thing, with 4 naps for 20 min. 2 hours apart. I slept >every one and fell asleep in about 2.3 min. for the average. I hate >pitty and I hate talking about things with people because I feel that >they don't wanna hear it or understand it ["why are you bitching about >it?"]. I missed so much school all my life and still am, I had so many >lates my jr. year I was on disiplinary probation and I almost wasn't >allowed to run at states. I'm now on provigil and the first few days I >took it I go so sick and I upped my dosage [with my drs. permission] >to taking 3 a day [600 mg]. I don't know what to do.... diagnosis. I too have narcolepsy and was on Progivil, but had to go off of it because it made me so sick. I hope to get on Xyrem at some point (when I can afford it). I had never heard of *increasing* the Provigil in response to making me sick. Is 600mg. keeping you awake enough? I quit at 400mg. and it didn't seem to do much for my sleepiness, and kept me so nauseous that I could only stay in bed. Then, I'd still fall asleep anyways. You must Sign in before you can post messages.
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