[HN Gopher] Narcolepsy is weird but I didn't notice
       ___________________________________________________________________
        
       Narcolepsy is weird but I didn't notice
        
       Author : bfelbo
       Score  : 105 points
       Date   : 2025-01-10 07:10 UTC (1 days ago)
        
 (HTM) web link (www.fortressofdoors.com)
 (TXT) w3m dump (www.fortressofdoors.com)
        
       | morjom wrote:
       | (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.
        
         | slurpyb wrote:
         | 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
        
           | nosefurhairdo wrote:
           | 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.
        
           | Kathula wrote:
           | 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.
        
       | ElijahLynn wrote:
       | 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.
        
         | slurpyb wrote:
         | 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
        
       | dusted wrote:
       | 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?
        
         | op00to wrote:
         | 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.
        
         | Mo3 wrote:
         | .. 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
        
         | tharkun__ wrote:
         | 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.
        
         | Llamamoe wrote:
         | 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.
        
         | Zak wrote:
         | It is atypical for REM sleep where most vivid dreaming occurs
         | to start immediately or shortly after falling asleep.
         | 
         | https://www.sleepfoundation.org/stages-of-sleep
        
         | nosefurhairdo wrote:
         | 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.
        
       | mrngm wrote:
       | 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.
        
       | photon_rancher wrote:
       | That exit strategy sounds suspiciously similar to a technique
       | I've heard for lucid dreaming.
       | 
       | Wonder if they're related?
        
       | RevEng wrote:
       | 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.
        
         | exhypothesi wrote:
         | 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/
        
           | slurpyb wrote:
           | What are you prescribed? Similar situation; still trying to
           | find the right meds.
        
             | exhypothesi wrote:
             | * 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 wrote:
               | 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 wrote:
               | 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.
        
           | RevEng wrote:
           | 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.
        
         | binary132 wrote:
         | 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 wrote:
           | 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.
        
       | Snacklive wrote:
       | 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
        
       | tuukkah wrote:
       | 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._
        
         | almog wrote:
         | 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.
        
       | MrJagil wrote:
       | 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 wrote:
         | 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 wrote:
           | 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 wrote:
             | 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.
        
               | pizza wrote:
               | Too cozy syndrome? :)
        
         | paulryanrogers wrote:
         | 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.
        
           | skylurk wrote:
           | > I have never seen my brother fall asleep while occupied
           | with something (walking, talking... driving?)
        
           | saghm wrote:
           | 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.
        
       | owl_vision wrote:
       | 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?
        
       | malux85 wrote:
       | 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.
        
         | PebblesRox wrote:
         | 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!
        
       | etaioinshrdlu wrote:
       | 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.
        
         | boole1854 wrote:
         | 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.
        
       | exhypothesi wrote:
       | 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...
        
       | throwaway284534 wrote:
       | 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.
        
       | Lerc wrote:
       | 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 wrote:
         | > 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.
        
       | b3lvedere wrote:
       | 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.
        
       | sudosysgen wrote:
       | 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!
        
       | ewired wrote:
       | > 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.
        
       ___________________________________________________________________
       (page generated 2025-01-11 23:01 UTC)