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.
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.
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!
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.
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.
Too cozy syndrome? :)
I have some books that I use as melatonin.
> 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.
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.
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.
> I have never seen my brother fall asleep while occupied with something (walking, talking... driving?)
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.
> 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.
> 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.
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.
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
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.
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.
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/
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.
What are you prescribed? Similar situation; still trying to find the right meds.
* 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?
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.
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.
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.
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.
Iron deficiency anemia
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.
The excessive day time sleepiness (not the Cataplexy nor the sleep paralysis) aspect of Narcolepsy is bizarre and I think misunderstood. I was able with years of experimentation to control the fatigue. There are many variables so I wont go into it.
Still one experiment that seemed interesting was that a drop of Methelyne Blue reverted all fatigue (nearing a state of Narcoleptic slumber) but didnt work too well with continued experiments after a week or two.
What is bizarre is that its onset of action was ONE SECOND. That should tell you all you need to know, but this isnt medical advice.
> The effect is pretty mild and the effect usually only happens when I'm in bed and drifting off towards sleep. A few minutes before I'm fully out, while I can still hear and see everything going on around me, I'll start to dream. The dream can be either vivid or fuzzy, but it plays out in just the same manner as when I'm asleep, just kind of superimposed upon my normal waking senses
I absolutely don't have narcolepsy - quite the opposite, I tend towards insomnia unless I practice fairly strict sleep hygiene. But, this "symptom" is a common and enjoyable part of falling asleep to me. I think it's common for a lot of people, near sleep, to have a dreamlike state, and it's possible to make interesting connections that you wouldn't make while awake. Often, but far from always, nonsensical. Sometimes deeply meaningful. I've solved maths equations that I was stuck in this state, or rather, I've seen the final connection I was missing to be able to solve it. Salvador Dali was famous for using this technique to come up with ideas, taking a nap while holding something that would fall from his hand and wake him to aid in remembering the connections.
Far, far be it from me to tell someone that what they experience as a symptom of a disease isn't. But I don't think that this particular symptom is abnormal, or only experienced by narcoleptics, and I do think there's a risk for the sufferers of any disease, to attribute many of the weird, sometimes confusing parts of simply being a haphazardly evolved animal created by evolutionary pressure as aspects of their disease. As a migraine sufferer, I do that too with any headache or weird aura effect. But sometimes a headache is just a headache. Sometimes a dreamlike state is just a dreamlike state.
Author here:
> I absolutely don't have narcolepsy - quite the opposite, I tend towards insomnia
FWIW most people I know with Narcolepsy also have trouble sleeping at night, so that's not so much an opposing symptom as a fully compatible one.
Narcolepsy is generally associated with the following classic symptoms:
- Excessive daytime sleepiness and/or "sleep attacks"
- Sleep paralysis
- Cataplexy
- Hypnogogic hallucinations ("dreaming while awake")
But also, every narcoleptic I know, when untreated, has significant issues with sleeping at night. I myself had full blown insomnia (not sleeping at all) several nights out of the week back in high school for years on end.
Not all narcoleptics have all of the symptoms, for instance many will have E.D.S. but not cataplexy, or the reverse, or won't have sleep paralysis, etc. I'm not a doctor, and I'm not trying to diagnose you over the internet. But it is interesting that you have what pattern matches to 2 out of 5 common narcoleptic symptoms.
On the other hand, just having one or two symptom doesn't mean you have the full blown disorder. Plenty of people have a motor tic or too but don't have full blown Tourette's.
I write this mostly to clear up a misconception -- that many people assume Narcoleptics have no trouble sleeping at night.
Yeah on the opposite I'd say it's pretty clear that the insomnia and poor sleep during night contributes heavily to why we are so spent and sleepy during the day. Aside from general insomnia I also had so much night terrors. Terrible nightmare, then waking up, then resuming the terrible nightmare again. Sometimes I'd try to stay awake just not to experience the night terrors. I inadvertently learned lucid dreaming to handle them.
(N1 over here aswell! Although mine came from some unfortunate circumstances rather than from birth )
Pleasantly surprised to find an article/blog on narcolepsy on HN.
All of the described experiences sound familiar, except the vivid dreaming while awake. Sleep paralysis, been there, always having dreams when asleep, yup (although for me MOST dreams are also lucid, which can get kind of get tiring, as I feel like I don't get as good of a rest.)
Cataplexy is a side thought now aswell, thanks to medication.
I recently got diagnosed but i somehow managed to be very productive all the way until my 30s. I had a spinal injury and turned it up 10x and its ruining my life. Any advice? The medication doesn’t come close to keeping me awake and writing code… do i just keep taking more amphetamines and caffeine until i can? I exercise, eat well etc etc
I have narcolepsy as well. What really helps a lot is a type of medication called sodium oxybate. Different kinds of stimulants never did anything to me, they might (might) keep me awake more, but I never felt rested, and always had constant brain fog. Xyrem changed that for me. Now I get many hours of good sleep at night, making me feel rested waking up. I'm still more prone to fall asleep during the day than the average person, but it's mostly after I've eaten a big meal. Do yourself a service and look it up.
Author here. Xyrem is a miracle drug. Life was getting straight up unlivable, when I'm on it I'm extremely well treated.
Sorry to hear. There is a promising new class of drugs, orexin agonists, currently in clinical trials. Particularly, TAK-861 had excellent phase 2b results and is currently in phase 3 trials.
I don't have narcolepsy, but I wonder whether something like a yoga nidra/non-sleep deep rest practice might help.
I can relate. I got diagnosed a bit after taking the pandemrix vaccine, after I started showing the symptoms, back in 2010-2011. As mentioned by someone, sodium oxybate is one medicine to maybe look into, but I don't think it'll necessarily help with wakefulness, more so with sleep and cataplexy.
I got it after pandemrix vaccine as well. Sodium oxybate absolutely helps with wakefulness, turns out you feel more awake and are less prone to fall asleep if you get good sleep at night (although induced by medicine).
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...
(author here) Wait, we finally know the cause now? When did this happen? How did I miss this!!! How definitive is this finding?
not a narcoleptic but I remember reading about this, particularly the narcolepsy cases after pandemrix vaccine (a flu vaccine) there was a stromng correlation between upper respiratory infections and narcolepsy. This wikipedia article has some links to these: https://en.m.wikipedia.org/wiki/Pandemrix
interesting to see several people here mentioned they got narcolepsy after this vaccine.
> I'm in bed and drifting off towards sleep. A few minutes before I'm fully out, while I can still hear and see everything going on around me, I'll start to dream. The dream can be either vivid or fuzzy, but it plays out in just the same manner as when I'm asleep, just kind of superimposed upon my normal waking senses.
This happens to me often, but I've never thought of it as a symptom of anything. In fact, when I'm just on the edge of sleeping, I can sometimes switch back and forth between "normal thinking" and "dream thinking". I often try to remember my dream thoughts when I switch back to normal mode, but it is nearly impossible - they evaporate or are somehow incompatible with normal thinking.
> whenever I'm asleep I always dream, and I start dreaming the instant I fall asleep
This happens to me frequently as well (but not "always") and is basically another aspect of the phenomenon described above.
+1 here, no narcolepsy diagnosis, but I also have that exact same awake-dreaming experience semi-frequently, or at least enough that it's not distressing to me for the most part. I also assumed this was a universal sleep experience.
I do vividly remember one experience though, I was riding the bus to high school. It was a very long ride very early in the morning and I started to fall asleep. My head was doing the thing where it would droop suddenly from tiredness. Usually the feeling of suddenly falling like that would wake me up a little and I'd snap my chin back up, but this time I guess I was extra tired so my head stayed drooped down and I continued drifting asleep while mostly upright on the bus. The dreams started, but in one part of the dream I heard someone call my name. I immediately became fully awake again, because I was aware I was on the bus the whole time and had thought someone had called to me and I might need to respond. But there was nobody behind me. Freaked me out a little because I wondered if that was a hallucination, but everything about it just felt like falling asleep. I get hypnic jerks a lot too, so I am used to suddenly coming back out sleep halfway through, and about half the time that happens I can remember bits of dreaming.
(author here) Maybe you should get a sleep study done, especially if you have ever had trouble sleeping at night, or are excessively sleepy during the day! I went over twenty years without a diagnosis.
Thanks for responding! That's interesting. I'm a night owl and nap pretty much every day, but it's kind of my superpower, not something I consider a problem. I feel a million times better after a good nap.
Reminds me of a Japanese girl I met who told me that when she smoked weed for the first time, she lay in bed, and saw an entire episode of The Simpsons play on her ceiling.
I hope there's serious research on this to find out if it works for everyone and if not, whether there are alternative strategies:
> Whenever you are in the throws of a cataplectic attack, lying motionless and completely helpless, focus all your energy into "finding" the tip of your index finger (either one will do). Now, just try to wiggle it around in a small circle. [--] The wrist and forearm will follow, then the whole arm, and soon you'll unlock the rest of your body.
I don't think I have narcolepsy but I discovered that whenever I have a really bad dream and I start to be aware of it being a dream, yet not able to gain control over my body and wake up, focusing moving just my fingers and squeezing my hands helpa me regain that control of my body and eventually wake up.
yeah I do squeeze my hands when I wake up with sleep paralysis too. It doesn't take long to gradually gain full control.
Are you fully aware of your surrounding when that happens? That trick I mentioned works best for me when this annoying meta-dream of being sleeping/paralyzed in my dream (i.e. dreaming of being somewhere sleeping, usually around people and not being able to wake up to engage with them). I've often wondered if this is a sort of sleep paralysis or not because it doesn't quite fit neither what I read about sleep paralysis nor about false awakening but it's extremely annoying when that happen.
>The dream can be either vivid or fuzzy, but it plays out in just the same manner as when I'm asleep, just kind of superimposed upon my normal waking senses. I guess this is a combination of "I just thought this is how it was for everybody," as well as "I never stopped and paid attention to what was actually happening, and once I did I noticed how weird it was."
This was the primary effect I got from theta wave binaural beats. Superimposed but at same time not easily accessible as a memory even though it was happening at the moment. Like with a regular dream once a bit of the dream was recalled the rest of it would come back to memory.
Interestingly enough, in the movie Kill Bill: Vol 1, The Bride (Uma Thurman) does a similar thing as the author does to get out of the cataplectic attack: wiggle her big toe.
It's not normal to start dreaming as you fall asleep ? I thought that's how you know you're falling asleep? That you're starting to see the dreams?
What's "normal"? I don't start dreaming as I fall asleep. Well I might, but I don't remember. I either have "racing mind" and can't actually get to sleep or I ... just fall asleep.
On the other end though I sometimes wake up in a state where I sort of seem to know I'm awake but not really awake yet. I guess that's still dreaming. Sometimes I try to control the dream but it often fails because I actually move my real body and I wake up and I have that "daaang, I wanted to keep dreaming" sensation. But then it's too late.
However, as hard as I try, I can't remember more than the fact that I was in that state even just hours later, never mind now. Except for very few times. Like I still have one specific split second memory of a nightmare I had when I was a kid (like 30 years ago) and woke up from it. But I can't remember anything but some sort of vague "brown paper lunch box head monster" thing.
You might experience mind-wandering "dreams" while in shallow sleep, but they're not true dreams, and this stage is a brief transitory stage into NREM sleep, during which no dreams happen.
I can't speak for normal, only what I experience. In my experience, I rest and close my eyes. Scene change. There may or may not be dreams remembered, and then I wake up.
Generally, the earlier stages of sleep are categorized by more "deep" sleep, with REM (dreams) occurring later. Narcolepsy Type 1 (NT1) is characterized by inappropriately entering REM sleep, likely due to a deficiency in orexin-producing neurons.
It is atypical for REM sleep where most vivid dreaming occurs to start immediately or shortly after falling asleep.
.. definitely not for me. I just descend into progressive unconsciousness, dreaming starts way later when I'm already out cold for an hour. Not once have they started when I was falling asleep
As someone without narcolepsy, the description of cataplexy sounds a lot like sleep paralysis (which happened to me a couple times in my life), and so do the waking dreams.
Oddly the author compares their cataplexy experience to sleep paralysis and says they are not similar because in sleep paralysis "you can't feel" whereas in cataplexy "you can feel all your limbs and it feels like they're all ready to obey you".
I have experienced sleep paralysis several times, and I have always retained the ability to apparently feel my body/limbs as I think most people do. It would seem that the author's experience of sleep paralysis is different from most people's.
Author here -- I wouldn't describe it as being completely numb in a way fully equivalent to, say, anaesthesia (or having your limbs fall asleep), but it's very qualitatively different from cataplexy, for sure. It's hard to describe exactly, but it's a much more "total" experience than cataplexy is.
I have had multiple (thankfully rare) instances of sleep paralysis in which I am completely unable to move upon waking, with the classic feeling described in the literature of a heavy weight on your chest (presumably sleep paralysis is the experience from whence the Norwegian word "mareritt" -- meaning nightmare -- comes from; you are being "ridden" by an evil creature called a "mare")
The worst experience with Sleep Paralysis I had was paired with hypnogogic hallucinations of wasps flying above me. I was sitting there terrified and utterly helpless to move. None of my usual anti-cataplexy tricks worked at all.
Eventually the sleep paralysis wore off and I stumbled out of the room in my underwear. I cautiously crept back to see if the wasps were still there. Staring at the ceiling, I realized they weren't wasps, they were ... dragonflies? Then the dragonflies disappeared and I realized the whole time it was just a tiny hook in the ceiling, the kind of thing you'd hang a potted plant or decoration from.
This was all before I learned the finger trick for cataplexy, however. It's been over a decade since I had sleep paralysis, but next time it happens I will definitely give it a try.
In my experience cataplexy has been more of a numbed feeling, when you sleep on your arm or like you can't feel the muscle but you can feel the skin (which I guess makes sense since cataplexy -is- the sharp decline or loss of muscle tonus)
Sleep paralysis has been more of a tree trunk experience, where I can feel everything and use my senses, but not move (usually paired with hallucinations).
Their technique for getting out of cataplexy is the same thing I do to get out of sleep paralysis
> This method is so unreasonably effective I can't believe it works, but it's never failed me yet. Whenever you are in the throws of a cataplectic attack, lying motionless and completely helpless, focus all your energy into "finding" the tip of your index finger (either one will do).
Amazing, this is the exact method I found independently to escape sleep paralysis, which thankfully only happens before or after sleeping for me.
Narcolepsy and Aura Epilepsy / Absent Seizures are somewhat similar. Are their any practical differences to identify, or indicate a tendency towards one or the other?
A bit off topic, but Mr. Lars Doucet's personal blog was a nice interesting read. I liked the post about hiring interns and the story about the advanced AI.
I'm not diagnosed, but I always have REM before falling asleep. It's how I know I'm about to call sleep when laying in bed. I love the visualizations before bed.
I also routinely take 10m nap between 10-12 every day. Always hit REM then too.
When i went through the diagnoses process I was informed that this condition truly exists in a spectrum and what may be a minor dot point to your life one day can later shift into something more disruptive (or nothing at all). You should see someone if those naps start multiplying
sometimes when sleeping or falling asleep i "wake up" or so. Basically im awake but i start having hallucinations about my surroundings, kind of like the description of sleep paralysis but i can move. I only have experienced sleep paralysis twice in my life so i wouldn't really know.
But hallucinations while semi sleep are wild, idk if it is normal, i haven't really considered before
The waking up part is called hypnopompia and the falling asleep part is called hypnagogia. Hallucinations are known to occur during these phases between wakefulneas and sleep (e.g "I have hypnagogic/hypnopompic hallucinations") )
That exit strategy sounds suspiciously similar to a technique I’ve heard for lucid dreaming.
Wonder if they’re related?
I've wondered if I've had some mild form of narcolepsy for a while now because I often get hit with a strong and sudden urge to sleep and will fall into a deep sleep rapidly if I'm sitting down. I don't remember this happening when I was younger, but it started happening more and more often in my 20s to the point I'd normally have at least one 20-30 min nap a day.
The author also describes dreaming while awake, and specifically just before sleep. Surely this is something that happens to everyone, no? My mind goes crazy when I'm about to fall asleep, and that's how I normally know I'm going to be asleep in the next minute or two. Typically I'll start thinking about strange interconnected things and people, objects and voices will randomly appear in my consciousness. Is this honestly not normal? Isn't that just what happens when you drift off to sleep?
Surely the commonly referenced "food coma" affects more than just narcoleptics.
I imagine narcolepsy is only diagnosable when it causes major issues in your life.
In the same way that being "a bit obsessive" isn't OCD unless it materially affects your quality of life.
I was diagnosed as a kid with narcolepsy because of the daytime dreaming which I struggled to describe as anything other than hallucinations.
I knew they were dreams because they felt like dreams, yet they were happening at the wrong time. I actually thought I was going crazy and dying, so I didn’t tell anyone for a year or so. Haha.
Before it happened I would get sort of a cold sweat and—bizarrely—nauseating pain in my shoulders and elbows, then I’d fall into a chilling state of weakness or outright paralysis. I’d have a few moments to realize this awful thing was happening, then try to get myself into a sustainable position and tell whoever I was speaking to that I’d be incapacitated for a minute or two.
It felt absolutely awful. The pain in my bones was unbearable, and the visions I’d have would often give me nightmares later on.
One of the strange qualities of the dreams was that I’d often see “nothing” very vividly. Like looking into a black hole, but rather than seeing nothing, I could clearly perceive that absence. Much like you can feel the absence of heat as cold, I could sense the absence of light, but as much more than just “darkness”. It was a confusingly massive, horrifying, eternal thing that wanted to swallow everything around it.
One of the “nothings” I’d see was death itself, who would visit me only to terrify me and threaten me that it could take my family and friends away. Sometimes it would bring my dead friends to me.
Yep, I was pretty sure I was going insane. I’d try to snap out of it by screaming or running, but I couldn’t move or speak or anything. I can still recall all of it in what seems like vivid detail. I have some memories where I can tell my brain is doing some clever back-filling, but these ones seem to have a special place reserved. I suspect a lot of the dreams were traumatic (sometimes I’d shake and cry for a few minutes after because it seemed so real) and there’s some evidence that truly horrifying things really do stick around in clear detail, longer than typical memories.
For some reason it all pretty much stopped around age 25. I still get the odd sinking feeling and all the ensuing terror, but I don’t get as weak and no dreams come. The bone pains happen too, but it’s thankfully pretty mild.
Narcolepsy is definitely weird. I’m a bit surprised the author never realized it, haha. I had no idea I had ADHD until close to my 40s though, so maybe I shouldn’t be too surprised.
Wow this is so close to my symptoms as well it’s interesting to read and see their few differences.
I too have a mixture of full narcolepsy and cataplexy attacks - but more cataplexy like the article.
I am conscious I just can’t move, I also feel a sinking feeling before it starts so I get just a few seconds warning which can help a little. My partner knows my distinctive “uh oh” I always utter before I leave for a bit.
When it happens I am in a new space and I see a new colour, it’s similar to purple but also with a lot of black mixed in, it’s not one solid colour but it morphed and swirls like those animated Gaussian noise functions. Initially it was scary but I feel like I know this place now, I can hear everyone, but I cannot move or respond or feel anything, I enjoy the serenity of being there now, it’s a little chill out zone, gifted to me.
I also dream while I’m awake, but I know it’s happening (visual and audio hallucinations) because the transitions are instant and very high res (it feels like reality, it’s never been blurry like the poster says) and since I know it’s a dream I have full control, I can modify it willingly (I enjoy adding waterfalls everywhere for some reason, and also moving about in a flying car) it’s not a conscious driven narrative I came to that conclusion because things still happen that surprise me or I mispredict events that then am able to understand why they happen with logic, which I think is very weird, my subconscious is able to build a dream so elaborate that it can surprise my consciousness with unexpected events? Isn’t that mind blowing?
It has a lot of downsides though, I can collapse any time without much warning, sometimes 1-2 seconds. it can happen during business meetings, crossing the street, balancing on places you really don’t want to fall, and no driving of course.
I take medication which helps a little but gives me terrible headaches and other unpleasant side effects.
Every so often I will have a dream with a joke or pun that surprises me. And they even make sense after I wake up! I always wonder how my brain manages to do that.
A similar time was when I dreamed I was reading a blog post about a game that was abbreviated WoH. I was trying to figure out what the name of the game could be, so I looked it up (still in the dream) and it was “Whore of Honor.”
After waking up, I pondered the fact that both of those words start with a silent letter - so I never would have consciously guessed them from the abbreviation, but somehow that’s what my subconscious brain came up with.
I had to look it up in real life to make sure it wasn’t a real game that I was just remembering - nope, not the case as far as I can tell!
I have figured out and successfully used the exact same finger-hand-arm wriggling method to get me out of sleep paralysis, it always works as well!