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Narcolepsy Without Sleep Attacks


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#1 cristichick

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Posted 05 November 2012 - 12:39 PM

I have a 2nd sleep study coming up after years of extreme sleepiness throughout the days, but I have never fallen asleep suddenly. I had a sleep study 4 years ago and was dx with moderate OSA. The cpap was a disaster as it aggravated my allergies (extreme dust mites) and asthma. And, I still had extreme sleepiness. I went to this new doc to ask for the dental sleep apnea appliance and he suggests another sleep study for narcolepsy. So, my question: Since I take nuvigil for sleepiness and it helps a bit, I still have to nap and go to bed early, what else can they do if it IS narcolepsy too?
I just wonder if anyone out there with both OSA and Narcolepsy, has an improvement in sleepiness by treating the sleep apnea...Or am I destined to sleepiness forever that never changes even after I treat the OSA? THanks much!

#2 DeathRabbit

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Posted 05 November 2012 - 03:26 PM

I have a 2nd sleep study coming up after years of extreme sleepiness throughout the days, but I have never fallen asleep suddenly. I had a sleep study 4 years ago and was dx with moderate OSA. The cpap was a disaster as it aggravated my allergies (extreme dust mites) and asthma. And, I still had extreme sleepiness. I went to this new doc to ask for the dental sleep apnea appliance and he suggests another sleep study for narcolepsy. So, my question: Since I take nuvigil for sleepiness and it helps a bit, I still have to nap and go to bed early, what else can they do if it IS narcolepsy too?
I just wonder if anyone out there with both OSA and Narcolepsy, has an improvement in sleepiness by treating the sleep apnea...Or am I destined to sleepiness forever that never changes even after I treat the OSA? THanks much!


The sleep attacks rarely actually result in a person being unable to control their sleepiness, at least, anymore than a normal exhausted person. Microsleeps are common, but full on frequent random naps agaisnt one's will is pretty rare. Narcolepsy is widely misrepresented in this way, most likely, due to people mistaking the cataplexies for sleep. My sleep attacks will be really sudden, and I get really sleep, foggy, and derpy, but I rarely fall asleep. In fact, there's a high incidence of insomnia amongst narcoleptics, due to our tendencies to bounce between REM and an easily disturbed alpha wave sleep. Out of curiosity, did you try a bipap? One of my friends had OSA with CSA events, so when he went on CPAP he would have occasions where he would still get central apneas, because the constant flow of oxygen made his brain think he was hyperventilating. A bipap will adjust for this; if it detects a cessation of breathing, it backs down the pressure. Now, he sleeps like a champ.

EDIT: But to answer your question, it's rare but not unheard of for narcolepsy to present only with EDS. Usually there's sleep paralysis, hypnagogic/hypnopompic hallucinations, memory/cognition issues, or something else accompanying it.

#3 cristichick

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Posted 10 November 2012 - 12:51 AM

The sleep attacks rarely actually result in a person being unable to control their sleepiness, at least, anymore than a normal exhausted person. Microsleeps are common, but full on frequent random naps agaisnt one's will is pretty rare. Narcolepsy is widely misrepresented in this way, most likely, due to people mistaking the cataplexies for sleep. My sleep attacks will be really sudden, and I get really sleep, foggy, and derpy, but I rarely fall asleep. In fact, there's a high incidence of insomnia amongst narcoleptics, due to our tendencies to bounce between REM and an easily disturbed alpha wave sleep. Out of curiosity, did you try a bipap? One of my friends had OSA with CSA events, so when he went on CPAP he would have occasions where he would still get central apneas, because the constant flow of oxygen made his brain think he was hyperventilating. A bipap will adjust for this; if it detects a cessation of breathing, it backs down the pressure. Now, he sleeps like a champ.

EDIT: But to answer your question, it's rare but not unheard of for narcolepsy to present only with EDS. Usually there's sleep paralysis, hypnagogic/hypnopompic hallucinations, memory/cognition issues, or something else accompanying it.



Thanks so much for your reply! I had my sleep study and mslt last night and today. I woke up with a whopper headache for the mslt so really curious about it's results. I only slept 2 of 4 naps because my head hurt and the sheets smelled of fabric softener too much.

I do have these weird halfway awake dreams that perplex me because I am half falling asleep or waking up when I have them. I thought that was normal til everybody I asked said, no they don;t recall that kind of dreaming. I get the consult on Tuesday.

I did try cpap/bipap but the severe dust mite allergies (maybe) and the room air (even filtered) aggravated my mild asthma, and I never got the feeling of restfulness and increased alertness. I did like the bipap for that self adjusting feature.

So I went to a new doc. this year (1st study was 4 years ago) to ask for the dental appliance for sleep apnea and he wanted to check again and investigate narcolepsy. Thanks for explaining all of that . It helps the pieces fit a little better. I'd be suprised if it's narcolepsy but that seems kind of possible now.