[HN Gopher] Narcolepsy is weird but I didn't notice
___________________________________________________________________
Narcolepsy is weird but I didn't notice
Author : bfelbo
Score : 205 points
Date : 2025-01-10 07:10 UTC (2 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.
| larsiusprime wrote:
| Author here. Xyrem is a miracle drug. Life was getting
| straight up unlivable, when I'm on it I'm extremely well
| treated.
| morjom wrote:
| 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.
| Kathula wrote:
| 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).
| 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.
| Kathula wrote:
| 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 wrote:
| 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.
| 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
| morjom wrote:
| 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") )
|
| https://en.wikipedia.org/wiki/Hypnopompia
|
| https://en.wikipedia.org/wiki/Hypnagogia
| 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.
| bgnn wrote:
| yeah I do squeeze my hands when I wake up with sleep
| paralysis too. It doesn't take long to gradually gain full
| control.
| 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? :)
| kolinko wrote:
| 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.
| comboy wrote:
| I have some books that I use as melatonin.
| 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.
| larsiusprime wrote:
| 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.
| morjom wrote:
| 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).
| superb_dev wrote:
| Their technique for getting out of cataplexy is the same thing
| I do to get out of sleep paralysis
| 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...
| larsiusprime wrote:
| (author here) Wait, we finally know the cause now? When did
| this happen? How did I miss this!!! How definitive is this
| finding?
| bgnn wrote:
| 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.
| 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.
| larsiusprime wrote:
| > 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.
| 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.
| esperent wrote:
| > 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.
| larsiusprime wrote:
| 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.
| steve_adams_86 wrote:
| 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.
| evv555 wrote:
| >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.
| munchler wrote:
| > 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.
| larsiusprime wrote:
| (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.
| munchler wrote:
| 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.
| bitwize wrote:
| 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.
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