Narcolepsy Forum Posting

Posted by Deb on December 09, 2000 at 17:18:54:

In Reply to: narcolepsy and sleep apnia posted by db on December 06, 2000 at 22:29:30:

db,
I also have Sleep Apnea and Narcolepsy. I was surprized to see the number of us that carry both disorder. Why this is I don't know. But there are a bunch of us who do have both. MDC is right in that the first job is to get the apnea under control. Your doctor should of been able to tell if it was corrected with your second sleep test.
Usually what they look for is any periods of apnea
while being tested with your CPAP on. If this comes back OK then they usually do a MLST which is the nap test to see how fast you fall asleep during the day. My test came back as EDS. I basically have the same symtoms you described. But after seeing a Neurologist I was diagnosis with Narcolepsy after the gene test came back positive.
It seem if you have the symtom of cataplexy they consider you Narcoleptic on the spot. For myself
I don't show cataplexy but the medication they give to help relieve these symtoms I've been taking for a long time. So I could have them but the meds are keeping them under control. But I do
want to share that not every one as all or the same symtoms. We're all very unique that way. To control my sleepiness my doctors have me on a CPAP
every night when sleeping. And Dexedrine during the day to stay awake. I read a couple of months
ago that doctors were going to start using the new
drug called Provigil to help those with daytime sleepiness dispite the use of the CPAP. Provigil was first brought out as a kind of wonder drug for Narcolepsy. Personally I tried it for a year and a half and had no benefit from it. Why did I try so long? My doctor decided it just had to work. But it didn't. Some people it works great for. They have no problems at all with it. I'm finding that with Narcolepsy finding the right medication can be a real struggle. But once you find one that works it like night and day. I use to sleep all night get up unlock the door in the AM, set on the recliner and pass out again untill 1-2pm. After
starting the dexedrine once up I was able to be on the go. Within a week I secured a job and was doing great. I share all of this because I know how fraustrating it can be to have both much less one of the disorders. I hope I was able to give you some hope. I would also suggest that you talk to your doctor. And if you don't get the anwsers
your looking for try to see a certified sleep doctor. Sleepnet.com has a listing of some on this site. Best Wishes and keep in touch.

Deb
under control with

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