So, I'm new to the site. I just signed up yesterday. I was hoping this would be a good way to meet other people with narcolepsy and discuss it. I was diagnosed in 2006. At the time I lived and worked in Louisville, KY at a mortgage company. The stress was getting to me of working long days for 100% commission. I started having frequent attack of cataplexy, but at the time I didnt know what it was. Turns out it is a dead giveaway that one has narcolepsy. Cataplexy is a sudden involuntary loss of muscle tone when one experience a sudden change like laughter or excitement. Its like the helpless feeling of being tickled, plus it looks like youre passing out so its kind of embarassing. Make that extremely embarassing. Additionally, I was starting to have sleep paralysis a lot. Thats a fun condition. It consists of your body awakening while your brain is asleep, and results in you lying there in your bed, half awake half asleep, unable to move and having vivd hallucinations like a hippy at woodstock. Seriously, I think people would pay big money to trip like I do naturally. It usually looks like I can see something out of my peripherals, think predator with his invisible camoflouge on, moving around or creeping up next to me and talking in my ear. Sometimes, when positioned where I cant really look around, it literally feels like something is crawling in bed next to me, scooting right up next to me, and whispering sweet nothings in my ear, usually about killing me and/or me going to hell. And since your brain is literally dreaming with your eyes open, it all seems very real but you cant convince your brain its just a dream. Scary stuff, really. So I'm prescribed Provigil to help me stay awake and Xyrem to help me sleep uniterrupted through the night. Both work okay, but the provigil makes me poop and also makes me lose my appetite for the next 8 hours or so. No complaints about the xyrem (liquid manufactured ghb) except the taste (kind of like I'd expect urine to taste). I had to quit that job since I couldnt handle it physically or mentally and I moved back to lexington and now work a job that requires me to be on my feet, and thus more attentive usually.
A few months back I was reasearching some stuff about narcolepsy online and came across a doctors name at the university of kentucky, which I can practically see from my front porch, and how he had done some type of research on the disease. Although he's a neurologist, I figured it couldnt hurt to call him. He was excited to talk with me and I met him at his office where he kicked me the idea of being in a study he was proposing at the time to a medical board. The study involves studying how the brain works with REM sleep when one faints or passes out, and I was apparently a prime candidate since narcoleptics spend roughly 3x as much of our sleep in REM mode. His study has since been approved and we should be proceeding with the expirement any day now (the equipment hes using is new to him and hes making sure its all working properly before we proceed- we want to do this right). I'm happy to do it because 1) I'm getting paid for it and 2) anything to learn more about my disease, which seems virtually unresearched according to what I've read up on it. Every site says the same basic things.
So, anyone else need a nap?
Narcolepsy!
Wednesday, August 20, 2008, 09:48 PM EST
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Right on bro! Youve told me that story before but its still cool to read. Good looking out on the site, check out my blog when you get a chance. See you at work tomorrow man. Stephen |



Hey Parker...Good luck with the new study! I'll be down for Eric's birthday. Do you want me to bring you anything?
Marti12:05 PM EST