#i've seen people say that their narcolepsy is characterized by not ENOUGH rem

[fortunatelyfresco]

Hi hi. Loved your post about Moist Von Lipwig and narcolepsy! I’m trying to learn more about narcolepsy since I suspect I may have it, and I noticed your post mentioned several symptoms I hadn’t read about on any symptom lists (but which I also relate to strongly)—can I ask what resources you used to learn about them? Thanks and have a great day

Hello, Anon! I'm glad you liked the post, and I hope you find some useful answers.

I have been on a fruitless quest for years to figure out exactly which symptom list made me go “!” back when I was tiredly googling sleep disorders. But I will gladly give you all the resources I can think of.

1. Narcolepsy Network. Specifically you could start with their About Narcolepsy page here https://narcolepsynetwork.org/about-narcolepsy/ though I will note a couple of things:

a) They say MLST instead of MSLT, though they get the full name correct. Just good to know if you want to google it because MLST is a real acronym for a couple of other things.

b) "PWNs [people with narcolepsy] typically have no difficulty initially falling asleep." Ehhh I'm being anecdotal, but not in my experience??? I struggled a lot with insomnia before medication, and I've seen other people say the same.

I haven't scoured the site so there might be other issues, but it's the organization that jumps to mind for me when it comes to resources and information.

  2. NN also has a list of support groups https://narcolepsynetwork.org/resources/support-groups/

The only one I have any personal experience with is their Facebook group. https://www.facebook.com/groups/narcolepsynetwork/

It's... useful. I would suggest searching it for keywords related to your questions before making any posts yourself. Most people on there are fine and I think everyone genuinely wants to help, but sometimes you'll get (unintentionally?) negative comments that don't actually answer your question. We're all tired, I guess.

At any rate this is the first place I would suggest searching things like "sleep paralysis" or "vivid dreams" or "insomnia" etc. if you're interested in hearing other people's experiences.

  3. The other FB groups I have any experience with are

https://www.facebook.com/groups/NarcolepsySupportGroup/ Narcolepsy Support Group

https://www.facebook.com/groups/760324190697068/ Narcolepsy Humor

https://www.facebook.com/groups/1611167005839496/ Zebra Butterflies (Ehlers-Danlos Syndrome and Narcolepsy)

https://www.facebook.com/groups/1508288736139122/ Service Dogs for Narcolepsy

https://www.facebook.com/groups/narcolepsyart/ N[ART] narcolepsy art

I'm in one more for a specific medication but I'm not sure if there's a rule about linking it publicly??? And you're almost definitely not on the medication without an N diagnosis, but feel free to message me privately if you'd like a link.

I don't use Facebook much these days and I'm not really active in any of these groups anymore (so unfortunately I cannot give you a clear picture of the overall attitudes within them), including NN, but I read through the posts that show up when I check my feed. Joining these helped me learn a lot about other people's experiences with narcolepsy, and other things like sleep apnea, circadian rhythm disorders, and idiopathic hypersomnia.

If you're an active Facebook user I would recommend limiting the number of groups you join, just to avoid becoming overwhelmed by strangers' vent posts, especially if you're already nervous or frustrated about the possibility of having N. Keep in mind people are often more likely to post about bad days than good ones.

4. If you're more interested in academic sources that you could cite for a doctor (or just because), I am no expert and am Too Tired To Read Things(TM) but there may be something for you in NN's Educational Materials https://narcolepsynetwork.org/resources/educational-info/ or Conference Materials https://narcolepsyconference.org/2019-materials

5. Finally I would honestly suggest just googling "Narcolepsy [keyword]" and clicking the newest articles that look trustworthy. New research is popping up all the time. I think a lot of what I've picked up over the years was just stuff I absorbed back when I had more time/motivation to google it every once in a while and see if anything had changed.

I would say to read as many sources as you can, because most of them will get some things right and some things wrong, or just have differing opinions on things that aren't settled or are subjective, or make statements about "typical" narcolepsy cases that might be statistically accurate but not apply to some people's lived experiences.

Like, I googled "narcolepsy vivid dreams" just now and found this page, updated February 18, 2021. https://www.sleepfoundation.org/narcolepsy/symptoms

It's got some interesting stuff about hypocretin/orexin, and atonia, and other stuff. It also states that narcolepsy doesn't typically worsen with age, which may or may not be statistically supported (I don't know), and which does not apply to some people's experiences and may make them second-guess things.

It also states "People with narcolepsy fall asleep quickly". I take issue with the entire premise of that, because I think it conflates sleep latency with sleep attacks, and can cause problems for people when they take the MSLT. This page does list insomnia as a possible comorbidity, but (like most resources in my experience) does not list it as a possible symptom.

Okay that’s probably enough of my own soapbox but please do feel free to ask me more questions if you’d like! Good luck!