Narcolepsy is weird but I didn't notice

Tangential: The story of the discovery of the cause of Narcolepsy is fascinating [1], [2], [3]

TL;DR: Narcolepsy is an autoimmune disorder caused by the destruction of the approximately 70,000 neurons that are responsible for producing the neurotransmitter orexin. [2]

A key piece of evidence was data analysis that showed a correlation between seasonal flu epidemic in China and subsequent new narcolepsy diagnoses. [1]

[1]: https://med.stanford.edu/news/all-news/2011/08/study-draws-c...

[2]: https://med.stanford.edu/news/all-news/2022/09/emmanuel-mign...

[3]: https://med.stanford.edu/content/dam/sm/narcolepsy/documents...

As a narcoleptic I wish that the diagnosis was more accurate, or at least that the insurance companies were more holistic in their coverage of medication. The multiple sleep latency test hardly qualifies as science and has a terrible false negative rate. It’s also expensive so insurance is reluctant to cover it in the first place, and outright hostile to a second attempt.

Any neurologist will tell you that your first night’s rest in a new location will be of a lower quality and depth than at your home. Despite knowing that, sleep studies are performed at the hospital in a room so uncomfortable that it makes the Holiday Inn feel like the Ritz. You’re then hooked up to a dozen different monitoring devices and asked to sleep in an uncomfortable bed with a camera observing your most vulnerable position. You should have no trouble falling asleep!

The second day is peppered with six attempts at napping within a short window, and if you enter REM within a threshold, you’re official diagnosed as narcoleptic. Otherwise you get a consolation prize of “idiopathic hypersomina” i.e. “sleepy person syndrome.” This methodology only selects for the most severe cases of narcolepsy, and as a result, allows insurance companies to gate-keep expensive medication.

I’ve read that a patient’s suspicion of narcolepsy and their final diagnosis is estimated around 8 to 15 years! IMO there is a subconscious characterization of known-unknown diseases as personal failing of the patient’s virtue. Convincing your parents, teachers, and doctors that you’re not just lazy is near impossible until the symptoms become too frequent to explain away. It also stands that doctors cannot be perceived as lacking critical information, therefore it is Not Allowed for their patients to be fatigued unless they’ve earned it, or put through the gauntlet that is our medical system.

I have some of those minor symptoms.

One thing I have experienced is lying in bed and being unable to move, and I can't tell why. it seems like I'm just not trying to move, which I think is the feeling that distinguishes it from paralysis.

What I have found is I can open my eyes and move them around. Through this I discovered an exercise that helps. If I focus on the ceiling in the far left side of the room then switch to focusing on the far right, after about 5 to 10 if those switches, the rest of my body can move without issues. Whatever it was that felt like I was just being lazy simply vanishes.

My brain is weirdly configured. I have had MRIs, catscans, ultrasounds on though my eye (which is as it sounds,close your eye, pour some goopvon it, then waggle a gadget over the goop)

Some of those were before I had Touretts like symptoms turn up. All I really know at this point is there isn't a tumor in there. I have a feeling some of my doctors would have placed money on finding one.

I also had a thing where they covered me in electrodes and timed how long it took me to fall asleep, then immediately woke me up again to repeat the process

Separately I was diagnosed with ADHD and put on methylphenidate only to find it had no effect on anything (was like taking nothing at all). Now on Dexamphetamine with some benefits.

The dramatic difference in how it feels to do something that previously seemed to require insurmountable effort has made me wonder if laziness is not actually a real thing. Those who have not experienced it may feel like you should just put your head down and do the task at hand, but the way the ability or inability to do that seems to switch on and off like a switch really doesn't make it seem like a factor of willpower.

Too cozy syndrome? :)

Not the person you responded to, but thought y'all may be interested: there is a promising new class of drugs for narcolepsy type 1, orexin agonists, that are yielding great results in clinical trials. TAK-861 is in stage 3 trials now I believe.

As I understand it, the best theory of NT1 is that an autoimmune response kills the orexin-producing neurons. Orexin is a neurotransmitter that plays a role in healthy sleep architecture as well as wakefulness. In theory, orexin agonists are a much more direct treatment of the underlying issue than current treatments.

So hopefully there will be some better treatments available for y'all in the next few years. May even be worth trying to find a trial for one in your area.