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Narcolepsy is weird but I didn't notice

283 points by bfelbo 1 week ago | 105 comments

MrJagil 1 week ago

My brother has narcolepsy. It is interesting how it presents itself in different people. I have never seen my brother fall asleep while occupied with something (walking, talking...) but I have seen him fall asleep so many times when he is not. The moment he gets in a car and it starts driving he falls asleep and very deeply. He would fall asleep in class all the time. The first time i really saw his narcolepsy expressed was during a daytime dinner. He had just had a big meal and while we were all sitting and talking, he just kinda nodded off.

The sad part is he has felt quite embarrassed by all this growing up. These are not dangerous situations, but it just feels awkward for a teenager. He also talks and walk in his sleep. Even worse is that no one believed him when he suggested he might have narcolepsy. Our mom is a doctor but figured he was just tired like all young, growing boys. It took a brain scan to get it sorted.

He's been prescribed Ritalin or something similar, but manages without.

lisper 1 week ago

Heh, I often fall asleep reading technical papers. I always thought that was normal, but now, hearing all this, I'm starting to wonder. Maybe narcolepsy is another spectrum disorder.

PeyTy 1 week ago

Your eye muscles maybe just tired from constant staring, or neck tension causes brain blood flow problems or something. I struggled with this all the time, but supplementation and exercise helps a lot.

Technical papers aren't THAT boring, after all!

lisper 1 week ago

No, they aren't boring at all. I love reading them. And I don't fall asleep reading other things, like news articles or fiction. But my brain's response to seeing Greek symbols is to fall asleep.

kolinko 1 week ago

I have it similar - but when listening about math/physics. Usually play it to fall asleep. I think it's due to my adhd (diagnosed) brain getting the right amount of stimulation.

pizza 1 week ago

Too cozy syndrome? :)

708145_ 6 days ago

For me it is if in a cosy position and doing something cognitively demanding. Fell asleep very often during my university studies reading literature. It can happen also if trying to learn something new technical at work, but only if I don't sit at a desk.

If normal or not I can't say...

comboy 6 days ago

I have some books that I use as melatonin.

onemoresoop 6 days ago

Me too but also use some youtube channels, eg. Monotone voices do that for me as well

crooked-v 6 days ago

> but figured he was just tired like all young, growing boys.

I feel like this assumption, at least in the US, is more of a failure of our school system than anything else. There have even been studies that show that teenagers have natural rhythms hours later than the 8 AM start times.

paulryanrogers 1 week ago

Edit: please disregard. I didn't read carefully enough. Obviously it's not dangerous to fall asleep when someone else is driving.

> The moment he gets in a car and it starts driving he falls asleep and very deeply

> ...

> These are not dangerous situations

Falling asleep while driving sounds quite dangerous, even with automatic breaking.

saghm 1 week ago

Describing this as "he gets in a car and it starts driving" seems like a pretty intentional decision; I suspect that either the brother doesn't drive, or this only happens when someone else is driving.

skylurk 1 week ago

> I have never seen my brother fall asleep while occupied with something (walking, talking... driving?)

omgwtfbyobbq 6 days ago

Can you wake him up after he falls asleep in the day time?

Lerc 1 week ago

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.

brianpan 1 week ago

> has made me wonder if laziness is not actually a real thing

I think a lot about the insane drive that professional athletes (especially at the highest levels) have and how it's not possible for me to have the same drive. I'm sure it's complicated and there's some level of learning or skill training that's possible to change your amount of laziness or drive. But, like physical abilities, there's probably only so much you can change.

KETHERCORTEX 6 days ago

It's regulated by excitatory and inhibitory neurotransmitters. Former start and support the actions and thoughts, latter prevent or stop them. It's more complicated than that, but this explanation good enough for quick summary. And it's not only about the actions we think about, but also usual body function

> some level of learning or skill training that's possible to change your amount of laziness or drive

There are also things that don't require training. Music with tempo above 90 BPM (or better above 100) temporary increases the amount of excitatory neurotransmitters.

Aurornis 6 days ago

> The dramatic difference in how it feels to do something that previously seemed to require insurmountable effort

Be careful about reading too much in to the early effects of stimulant treatment. The short, medium, and long term effects of stimulant treatment on perceived effort are different, so this will change as your brain adapts to the medication.

Reduction of perceived effort after taking stimulants isn’t unique to people with ADHD. It’s why people have used caffeine, nicotine, or harder stimulants for centuries. As everyone discovers eventually, those early effects are not durable for years.

The attention-promoting effects of stimulants are more durable. That’s why people with ADHD can derive benefits for a long time. However, people who get hooked on the ability for a pill to make it easier to do unpleasant work can get into a tough spot when that effect wanes over time and those tasks are back to requiring a lot of effort again (although concentrating on them is still easier). Consequently, the discontinuation rate for stimulant treatment is much higher than people would guess after their first few doses.

larsiusprime 6 days ago

> Some of those were before I had Touretts like symptoms turn up.

Author here. For what it's worth, I have BOTH Narcolepsy AND Tourette's syndrome, both formally diagnosed.

I'm not a doctor, but what you described about lying on bed does sound a bit like cataplexy to me. You might have a doctor who specializes in Narcolepsy specifically check you out.

RevEng 1 week ago

This is fascinating. Three years ago, after recovering from COVID, along with many long haul symptoms I developed several similar to but still distinct from narcolepsy. Even now as the CFS-like symptoms have mostly faded, the narcoleptic symptoms are still present. Unfortunately I've not been able to get a positive diagnosis of any sort because it's atypical.

There are two main symptoms I experience. First is that, often without any clear provocation, I will become very fatigued and weak. This usually occurs over about 20 minutes, but the initial onset is a distinct event I've come to recognize. It gives many of those same long COVID symptoms: brain fog and drowsiness, weakness to the point of struggling to stand up or keep my head up, uncoordinated movements, and a feeling like I've been up all night and I desperately need to sleep. This often subsides after an hour or two, but it may last several hours.

The second which is perhaps just a more extreme case of the first is a complete inability to wake up. I may be slightly aroused and fade in and out of consciousness, but I have no ability to control this. I typically cannot move during this: everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head. Depending on how conscious I am at any moment, I may realize I'm in this situation, or I might imagine that I'm just really tired or depressed and that's why I can't move. These episodes tend to last many hours, often 8 or more. They can happen as an extension of my random bouts of sleepiness, but often they occur as an extension of my normal sleep, resulting in me not being able to wake up - even when physically aroused by someone else - until well into the evening.

In both cases the sleep is not restful. Instead I often feel it come on again a few hours later, though less extreme.

binary132 1 week ago

It sounds different from what I’ve been dealing with, but I got diagnosed with sleep apnea in 2023 and getting on a cpap has made a world of difference to my health and energy levels, including making my chronic migraines go away basically completely since starting cpap therapy. I am simply writing this in the hopes that possibly exploring this diagnosis might help you. I used to often wake up exhausted and feeling like I’d been hit by a truck or as though I had a bad hangover. This also no longer happens to me.

RevEng 1 week ago

I appreciate the suggestion. They tested me twice for sleep apnea.

The first time it was borderline so we decided that was unlikely to be the cause. That was also just a few months after COVID when my symptoms were extreme and persistent and I was also experiencing major insomnia.

The second time was a year later when I was supposed to be getting the multiple sleep latency test for narcolepsy. I had an awful time getting to sleep and only had a few hours. They didn't complete the narcolepsy test because they said I had severe apnea. The doctor prescribed me a CPAP and insisted it would fix everything. They went so far as to say that it's never narcolepsy and that in 10 years they had only seen one case, which is concerning given that narcolepsy is not that rare in the general population and it should be much more common among people who are tested for it. The doctor's over confidence and condescending tone made me greatly question the diagnosis.

I did try the CPAP for a little over a month. I simply couldn't make it work. I started with a nasal mask but the first time I opened my mouth I awoke in a panic as air was rushing through my nose and out my mouth. It happened a couple more times and it was clear that wasn't going to work. I then tried a full mask and while that wasn't as bad, I found it extremely hard to fall asleep. Even though I didn't find it uncomfortable, I simply didn't feel sleepy while wearing it. The moment I took it off I would be exhausted and would fall asleep. I also had trouble breathing with it. When the pressure started to rise I wasn't able to breathe out against it so I would suffocate. It woke me many times. Much later I was told that there should be a release valve for that and a different mask might help, but I had already given up on it.

Other circumstances also make me doubtful that sleep apnea is the cause. It has slowly but steadily been improving over the last two years, which shouldn't happen with SA. I have also used various sleep trackers, including recording myself, and with rare exception there haven't been any significant signs of apnea. I snore, but not loudly. I never stop breathing for any length of time. I cough occasionally but I also do that regularly while awake in bed because of post nasal drip. Even the CPAP when I was using it recorded only a few significant events. Aside from that single test, all other evidence has suggested against it.

My wife does have significant sleep apnea. She struggled similar to me with wearing the CPAP but she was recently prescribed APAP and it has worked well for her. Even with the CPAP there was a clear difference when she used it.

I have no doubt it works for many people, but unfortunately it didn't seem to help me.

binary132 4 days ago

Yeah, I really had a hard time getting the hang of the mask and pressure and didn’t think it would work out either, but I was eventually able to figure out settings and accessories that made it work well for me. I dunno, maybe worth it to pursue, maybe not.

MaKey 6 days ago

Did you try not eating late in the evening (= after 6 pm)? In my youth I often felt tired and stapled to the bed in the morning, barely being able to move. The sleep wasn't restful and I always had weird dreams. Turns out that it was due to a combination of eating late and having (then unknown) food intolerances.

I realize your symptoms are different and probably not eating late won't change anything for you, but for the slim chance that it does I wanted to share my experience anyways.

duncancarroll 6 days ago

For what it's worth, I've had some success treating my Long Covid symptoms with a specific form of Tryptophan found in Hydrolyzed Whey Protein (a standard bodybuilding protein powder.) You can get it OTC from Amazon [1]. My symptoms are slightly different from yours but sound close enough.

A recent study showed that persistent viral infection can block normal tryptophan receptors [2] which causes a diminished ability to synthesize serotonin, which it turns out is pretty essential for a lot of things including alertness & sleep, etc etc.

The tryptophan found in hydrolyzed whey binds to a different receptor than normal dietary tryptophan, thereby allowing your body to reuptake it and produce serotonin as usual. (This is all in the study.)

A word of warning: If you do this, take only a very small amount to start, maybe a quarter serving, because even though the body rate-limits serotonin production your tolerance will likely be extremely low from not having much for years. I didn't know this and I took a couple servings per day (after all, it's just protein powder right?) but by day two I was hypomanic which was unpleasant and it took about a week to return to normal. So start with maybe a quarter serving, wait a few days, and repeat until your serotonin normalizes.

Also DON'T TAKE THIS if you're on any medication that interacts with serotonin such as an antidepressant, SSRI, MAOI, or what-have-you. I am not a doctor and this is not medical advice, just something that helped me after many years of difficulty.

[1] https://www.amazon.com/dp/B002QZORGK [2] https://www.cell.com/cell/fulltext/S0092-8674(23)01034-6

amavect 6 days ago

I just read through the study. I corroborate your summary.

> The tryptophan found in hydrolyzed whey binds to a different receptor than normal dietary tryptophan, thereby allowing your body to reuptake it and produce serotonin as usual. (This is all in the study.)

Took me a bit to find the quote.

> If tryptophan uptake was abrogated by poly(I:C) treatment, tryptophan supplementation should elevate serotonin levels even during viral inflammation. To corroborate this, we used a diet containing a glycine-tryptophan dipeptide, which bypasses the need for B0AT1 and enables tryptophan uptake via dipeptide transporters.33 This diet compensated for impaired uptake in poly(I:C)-treated mice and led to an increase in both tryptophan and serotonin levels in systemic circulation

Now I need to ensure that whey protein contains some glycyl-L-tryptophan. The study used a lab rat diet "TD.210749" (unsearchable, maybe a custom diet) from Envigo/Inotiv. The citation used pure glycyl-L-tryptophan "G0144" from TCI Europe (~$100/g haha nope).

I can't find anything on glycyl-L-tryptophan content in hydrolyzed whey (maybe you can help?), but found one on other tryptophan dipeptides, alanyl-tryptophan and tryptophanyl-tryptophan. The ACE receptor inhibition seems relevant, too. The PepT 1 protein appears to transport the dipeptides.

"Selective release of ACE-inhibiting tryptophan-containing dipeptides from food proteins by enzymatic hydrolysis" Diana Lunow et al. - https://doi.org/10.1007/s00217-013-2014-x

I'll try this out for my early waking insomnia, mildly reduced energy, and digestive problems (started after I got Covid, almost exactly 2 years ago). I need to find one without artificial sweeteners (hate the taste). I'll report back in exactly 2 weeks (sets calendar).

majkinetor 6 days ago

If its dipeptide transporter, seems like any dipeptide would do.

Adding bromelain to mix might help.

amavect 5 days ago

Yeah, thinking about this a bit more, shouldn't stomach proteases break the protein sources into dipeptides? I found a few comments online arguing that hydrolyzing doesn't matter and may cost more. If that's true, then we should only care about the protein types of whey, especially the alpha-lactalbumin content (higher tryptophan). I think bromelain would only help people with reduced protease production, and it likely won't break apart hydrolyzed protein any further. Of course, theory requires a test, but I won't add bromelain to my hydrolyzed whey test.

majkinetor 5 days ago

Thats correct.

Bromelain cant harm though, is cheap, hydrolization is certainly not perfect, and it has other positive effects on body such as anti inflammatory, pain reduction etc.

amavect 5 days ago

Can you share a few studies, please? I'd like a good theory for the effectiveness of bromelain, first.

majkinetor 5 days ago

Its potency is measured in Gelatin Digesting Units (GDU), I think thats telling enough.

Mo3 6 days ago

Aw, too bad I can't have whey because of my lactose intolerance. :(

exhypothesi 1 week ago

Wow I'm sorry to hear that, but it's also refreshing to hear from someone with a similar experience.

> just a more extreme case of the first is a complete inability to wake up.

> everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head.

I've tried to describe this feeling to others, but it's difficult. I call it my "death sleep," not to be dramatic, but because it's like waking from the deepest, most complete unconsciousness I can imagine. The heaviness in my body and chest make it feel a burden even to keep breathing; so I fall back asleep quickly.

After months of this, and visits with many specialists including a cardiologist, endocrinologist, and pulmonologist, an MSLT [1] gave the diagnosis of Idiopathic Hypersomnia [2, 3], which makes me laugh when you break it down: ("idio" = Unknown, "pathic" = Cause, "hyper" = Very, "somnia" = Sleep).

That diagnosis, while frustratingly vague, has at least allowed me to be prescribed medication that has made a big difference in my day-to-day alertness.

[1]: https://stanfordhealthcare.org/medical-conditions/sleep/narc... [2]: https://www.mayoclinic.org/diseases-conditions/hypersomnia/s... [3]: https://www.hypersomniafoundation.org/ih/

RevEng 1 week ago

That's the best guess my family doctor can come to as well. I've not been given a formal diagnosis, but we have proceeded assuming that is the case. Unfortunately that doesn't lead to many options for treatment. Modafinil helped to keep me awake but laying awake through those major episodes was a special kind of hell that I didn't want to live through. Methylphenidate has helped to keep me more alert and capable during the minor episodes, though it doesn't seem to have affected the major episodes. The only other treatment available seems to be Xyrem but it's really expensive and the side effects don't seem worth the risk - there's a very real chance of dying in your sleep. I find it funny that I would be trying to treat an ailment where I'm unable to move or wake up by taking a drug that will ensure I can't move or wake up.

The only other diagnosis that seems plausible is Klein-Levine syndrome. I'm hesitant to believe it's that because it doesn't explain everything and it's quite rare, but the major episodes sound similar and that's a rather unique symptom. I would say I also experience the increased hunger during those episodes. They do tend to last at least a day with periods in between where I will be awake but groggy for a few hours and I'm usually insatiably hungry during those breaks. However, if that's actually what it is, it's even less understood and treatable than idiopathic hypersomnia is, so other than having a name to put to it, it doesn't really help any.

That's why my doctor and I have just kind of left it where it is. We have tried the available treatments for these conditions with some limited success, and otherwise there isn't any benefit to having a formal diagnosis. In fact, the sleep pathologist suggested I may not want to pursue a formal diagnosis because, if diagnosed with something like narcolepsy, I may lose the ability to drive. My symptoms aren't such that I would become incapacitated without warning, but even just putting that name on it could lead to being treated as if that were the case.

slurpyb 1 week ago

What are you prescribed? Similar situation; still trying to find the right meds.

exhypothesi 1 week ago

* Modafinil (400mg, 1x daily) - Started with 100mg and tried several variations of timing/dosage. Currently, 400mg upon waking in the morning has worked the best.

* Duloxetine (30mg, 2x daily)

My PCP prescribed the Duloxetine early in the process when they suspected I had ME/CFS. It did not seem to do much other than make me feel calm in situations that would normally cause anxiety, but later I got the IH diagnosis and was also prescribed Modafinil. My PCP offered to help me stop the Duloxetine, but I decided to stay on it because: 1) I was so grateful for the relative energy I had after starting the Modafinil that I didn't want to do anything to compromise that, and 2) I was enjoying the anxiety-reducing effect.

The Modafinil has not completely relieved symptoms; I still have fairly bad sleep inertia and will crash with a "sleep attack" about once a week, but that is far better than before, when I was sleeping 11-18 hours _every day_.

Sorry--I'm sure that's not too helpful to you, as it seems Modafinil is doctors' standard starting point for IH "treatment" (at least in the US).

Edit: Oh, and despite the "warnings" in the Modafinil instructions, I also drink about 3 cups of coffee a day (stopping at noon), and I feel that has been a vital supplement.

What has your experience been?

nosefurhairdo 1 week ago

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.

RevEng 1 week ago

I was prescribed Modafinil, and while it did keep me from falling asleep, it didn't help with my wakefulness otherwise. When I had a serious crash, instead of sleeping through most of it, I would be awake through it all, with all the discomfort of the extreme fatigue and mental fog, but with no ability to fast forward time by sleeping through it. After a few months I decided it wasn't worth it.

I'm on methylphenidate right now, and while reports are that it makes CFS worse, I find it helps me to remain more aware and capable when I start getting quite sleepy, to the point where I can often wait it out rather than having to actually fall asleep. It doesn't seem to have changed the frequency of attacks nor did it prevent the really big ones, but I was able to at least work most days whereas before I was regularly too foggy to do much of anything.

The other medication my doctor suggested was Xyrem. While the research is promising for treating IH specifically, the effects and risks are worrying enough that I don't think it's worth it. It's also very expensive and it seems unlikely that my insurance would cover it, since it's off-label usage.

Kathula 1 week ago

I'm not a regular poster here, so sorry if I don't follow the rules or etiquette correctly, but I gotta go to bat for Xyrem. I have Narcolepsy, so our situations aren't exactly identical, but it seems to me IH and Narcolepsy have a big overlap.

First of all, the benefit of taking Xyrem is so, so big. It doesn't compare to any other medication or stimulant. You can get quality sleep at night. No more insomnia, lying awake, or constant night terrors and waking up 30 times a night. You feel refreshed when you wake up, like a weight has been lifted from your shoulders. Like a veil has been revealed.

The risks aren't that great, if you take it as prescribed it shouldn't cause you any trouble, at least not anything major. Nausea usually only happens when you titrate up the doses too quickly. It happened to me, maybe 5 nights, or 10 at the most. Hasnt happened now in 10 years I've been on it.

You should look it up more. You can check in the narcolepsy reddit, there's always questions and discussions around Xyrem/sodium oxybate every day.

I do sympathize with the high cost and insurance problem. It certainly isn't a medication most people can afford on their own.

nick__m 6 days ago

There are no reason, except greed, that explains why Xyrem is so expensive! It cost almost nothing to produce. It's an old simple molecule, GHB was know for it's restful sleep since at least the 90's and so was it's safety profile.

In a fair world the patent would be voided and it would not cost more than 20 dollars a month.

throwaway284534 1 week ago

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.

fallingknife 6 days ago

Unless your condition is obvious or catastrophic, you're SOL with doctors. If they do not immediately know the diagnosis they either guess or decide you are just a complainer. Your description of symptoms means nothing. They do not research anything if they do not know it immediately. I have narcolepsy and was able to diagnose myself off Google after every doctor had failed. I finally went to a sleep specialist at Stanford and he confirmed with testing.