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narcolepsy anyone?
2 Replies
dkarssen79 - February 7

So I had my first sleep study and was told that I had little cardiac disturbances in the 3 hours I slept that night. The dr is very concerned with some of my scores. I will now be tested this coming friday and saturday for narcolepsy. At first I didn't think it could be that. I mean we've all seen shows that make light of it where the people just pass out cold in the middle of any activity anywhere. Well once I read more about it I am beginning to think maybe this is what my sleep problem is. Just wondering if anyone else on here has narcolepsy.

I seem to have 3 out of the 4 major symptoms. I have extreme daytime drowsiness/fatigue, insomnia and waking a lot at night(sleep apnea has been ruled out) and sleep paralysis. The only thing I don't have is cataplexy. I often take naps easily and while im falling asleep see things almost like dreaming but a little different. I also almost always dream during naps no matter how short the nap.

Just wondering if anyone has this diagnosis and how it is treated. Part of me wants it to be this just so I can finally have an answer and be treated properly, but part of me doesn't want it to be this. I'm sure you all know that feeling when being tested for different things. I just think if it is this maybe I can finally get my sleep under control and start to feel better. I was very hopeful for a while but starting to lose that feeling. There has to be a reason why I'm having the sleep problems that I am. I've had so many tests done that have all come back normal I don't know what to think anymore.

Well if any of you have any experience or info on narcolepsy I would appreciate some input. Thanks!!


Noca - February 8

I have extreme daytime fatigue but I assign that to using Fentanyl and having depression.


shelbel46 - February 9

Hi, I am new to this site. I help facilitate a fm grp in No. Michigan. We have several of us on C-pap machines for sleep apnea which tends to run high with fm and cfs. With that said, we all suffer with fatigue and tend to drop off to sleep , been known to happen as one of us is talking to another on the phone,lol. One of the sleep docs. some of us see, also teaches at U of M in Ann Arbor, MI, they are studing the effects of taking Xyrem at night and provigil during the day.

Xyrem is sodium oxibate (GHB-or the date rape drug) it puts you into stage 4 rem sleep, which we usually have problems staying in and therefore not repairing our bodies and causing fatigue and deppresion. it also relaxes the body and you wake up more refreshed. the provigil helps you stay awake during the day.

There are side effects to both, but so far the ones who are able to partake, they are working well. please be careful and make certain you keep track of any side effects.
There are clinical studies with xyrem in the states. not sure in Canada. I know our health care systems vary greatly, My dad and Stepmum live in Canada.

Good luck, and blessings



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