Narcolepsy in addition or instead of...

[Rachael]

When I was first seeing a sleep doctor she believed I had narcolepsy because I have several of the signs of it, hypnogogic hallucinations, sleep paralysis, etc. (but no cataplexy, thank heavens.) After my psg I was diagnosed with "Sleep Apnea/UARS" and started on cpap. I have improved greatly, and had another great leap in my well-being when I went off of gluten. But I am not 100% and have started thinking about narcolepsy again. I read an article from 2005 that actually listed apnea as a sign of narcolepsy, which I hadn't seen elsewhere.

I was wondering if anyone had a narcolepsy diagnosis as well as sleep apnea, if so what have your experiences been? Which was diagnosed first?

Thanks.

[kteague]

Hi Rachael.

I have seen posts by a couple members on here who have OSA and Narcolepsy. Maybe they'll see this and jump in.

When my OSA and Periodic Limb Movement Disorder were not therapeutically treated, I exibited symptoms of narcolepsy, even attacks of what seemed like cataplexy. My sleep doctor's perspective was that one needs to be getting good sleep on a regular basis before considering attributing the symtoms to narcolepsy. I understand that because as my sleep improved, my symptoms did also.

I still fall asleep anywhere anytime, but I take multiple meds that say they can cause drowsiness, and I have other medical issues.

Have you had an MSLT, where you take several naps during the course of a day? They look at how quickly you fall asleep each time and if you reach REM. This is the test doctors usually order if narcolepsy is suspected.

You didn't say much about your cpap treatment. Any chance it is not as therapeutic as it could be?

Hope you soon find out how to feel even better.

Kathy

[Wulfman]

When I was first seeing a sleep doctor she believed I had narcolepsy because I have several of the signs of it, hypnogogic hallucinations, sleep paralysis, etc. (but no cataplexy, thank heavens.) After my psg I was diagnosed with "Sleep Apnea/UARS" and started on cpap. I have improved greatly, and had another great leap in my well-being when I went off of gluten. But I am not 100% and have started thinking about narcolepsy again. I read an article from 2005 that actually listed apnea as a sign of narcolepsy, which I hadn't seen elsewhere.

I was wondering if anyone had a narcolepsy diagnosis as well as sleep apnea, if so what have your experiences been? Which was diagnosed first?

Thanks.

Make sure you're not leaking your CPAP therapy air out your mouth, first......and that your pressure is doing its job. Got software to make sure your therapy is working?

Narcolepsy and sleep apnea share some of the same symptoms. I actually thought I had Narcolepsy before I was tested for sleep apnea......I'd never heard of SA before the end of January of 2005.


Den

[Rachael, not logged in]

Thanks guys.

My therapy is pretty good, no leaks, AHI around 1 at most, sometimes 2, I do track with software. And, I haven't had many paralysis incidents or halucinations since starting cpap, so I may very well be barking up the wrong tree. Your doctor makes a lot of sense KTegue. I didn't get the MSLT that my doctor ordered because I didn't actually sleep enough at my sleep study, you need at least 6 hours and my sleep efeciancy was so bad they couldn't nap-test me.

It's just as well, I don't much fancy trying amphetamines, and that seems to be all they will offer if you have Narcolepsy.

[KenC]

IIRC, narcolepsy can be definatively diagnosed by having an EEG done as you fall alseep. A person with narcolepsy goes immediately into REM sleep.