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Cannabis and Narcolepsy?

First off, I don't have an official narcolepsy diagnosis. I have been suffering from sleep problems on and off for about 20 years now, though. When it's bad, it's really bad. I can sleep all night, but still get sleep attacks in the middle of the day. My sleep attacks don't generally involve falling asleep while mid-action like some people describe. I just get painfully, horribly tired, like I cannot take another step or move at all. I must lay down as soon as possible. When I do, I fall asleep immediately, and then I can sleep anywhere from 20 minutes to 4 hours. When it's at it's worst, I have to take three >=1 hour naps over the course of the day. However, I'm often awake multiple times throughout the night. In the past, doctors said that I was sleepy in the day because I just wasn't sleeping well at night, but even sleeping pills that keep me asleep through the night don't fix the sleep attacks during the day.

So, a couple of years ago, I started tracking my sleep using an app on my phone called "Sleep for Android" that purports to track the different types of sleep you get through the night either by being on the bed next to you or by connecting to a fitness watch or other wearable. I noticed that even when I was sleeping a full night, I didn't have many REM cycles. But then I noticed that on the days that I had cannabis, I had MORE REM cycles than normal. (At that point, I would only have cannabis once or twice a year.) This is weird, because all the research I've seen says that cannabis causes people to have less REM sleep. My doctor and I laughed about this, "Ha, ha! Well, we knew I was not neurotypical!!" (Nearly everyone in my family has ADD, autism or both.)

This year, when I started having a really bad time with the daytime sleepiness and not being able to sleep through the night, my doctor gave me two different prescriptions. One was hydroxizine, which is an antihistamine which is also used as a sleeping pill, and the other was THC. He said that he preferred that I use 2.5 to 5mg of THC about an hour before bed, because it would have fewer systemic effects than the antihistamine, but that I should try them both and maybe use one for a week and the other for a week to see how things went. 5mg of THC won the contest by a long shot.

Not only did it stop my daytime sleepiness, it also gave me regular REM cycles. Again, I want to reiterate that this is the OPPOSITE effect of every study I've been able to find. This is weird.

So, a short while ago, I was talking to a friend with narcolepsy and they said something that clicked in my head, so then I went looking for symptoms. Hypnogogic and hypnopompic hallucinations. Check! Trouble sleeping at night. Check! Sleep attacks in the day time. Check! REM sleep right after falling asleep and then no REM until several hours later. Oh... dear. Check...

I went back and looked over the sleep cycle records from when I wasn't using THC every night. My first REM would be 5-15 minutes into sleep, and then I wouldn't have another REM sleep until 4 - 6 hours later!!! Then I'd have two or three REM sleeps in close succession, almost always waking up in the middle of REM. (That explains the hypnogogic hallucinations. Cool.)

So, my question to you all is: Are any of you aware of THC having this effect in narcolepsy patients? Is there any research that shows that this is a thing? Or any community knowledge of anecdotal evidence that THC might improve or fix REM problems in narcoleptics?

Post Script:
I would like to maybe, possibly pursue a diagnosis, but the idea of having to go off the THC and suffer through a return to the sleep problems in order to get that diagnosis is a little scary. It would mean declaring two to three weeks lost to any sort of productivity just to get a diagnosis. For now, I'm thinking that it makes sense to just be happy that things are managed, but I'm not sure if that's a good strategy for long term in case I need other medication or even ADA accommodations if things get bad in the future and THC no longer manages the problems.

  1. thanks for sharing about your experience. Although I have not used THC for my narcolepsy symptoms, I know there are some people that do. I understand your fear of having to stop THC in order to be diagnosed, but I can say from personal experience, having the diagnosis was the best thing to happen to me. I have been dealing with extreme sleepiness my whole life. I never really experienced the hollywood style "fall asleep with your face in your dinner" thing. However, after being misdiagnosed with thyroid problems and depression and trying SO many medications with no success, getting the diagnosis of narcolepsy was exactly what I needed to help get me on the track to fixing my symptoms.

    I agree with your thought of not wanting to stop what you're doing currently. You know, if it ain't broke don't fix it, right? However, when thinking of long-term solutions, this may not be the one. Having a doctor who specializes in sleep disorders could potentially find something that works even better than what you're currently doing. Once I found the right "medication cocktail" for me, I was shocked how I ever lived a productive life before!

    Anyway, I wish you luck on your journey to diagnosis. Keep us in the loop!
    Xoxo/Zzz, Gabrielle

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