Narcolepsy is weird but I didn't notice(fortressofdoors.com) |
Narcolepsy is weird but I didn't notice(fortressofdoors.com) |
But hallucinations while semi sleep are wild, idk if it is normal, i haven't really considered before
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.
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.
Technical papers aren't THAT boring, after all!
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.
> 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.
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.
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.
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.
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 don't have narcolepsy, but I wonder whether something like a yoga nidra/non-sleep deep rest practice might help.
What do you mean that the cataplexy is a side effect of medication? Did you not experience it before treatment? And which medication causes it for you?
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.
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...
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.
> 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.
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.
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.
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.
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!
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?
> "Although experiencing a hallucination might prompt confusion or fear, hypnagogic hallucinations are relatively common. Hypnagogic hallucinations are a common symptom of narcolepsy, but can also occur in people who do not have narcolepsy. In fact, one study found that 37% of people report experiencing hallucinations as they fall asleep."
Source: https://www.sleepfoundation.org/how-sleep-works/hypnagogic-h...
Their association with narcolepsy is one of several features, and it occurs more frequently and often during daytime naps in patients with narcolepsy:
> Hypnagogic states are not only an associated feature of narcolepsy, but they also are favourable for a diagnosis. Accordingly, the prevalence of hypnagogic states was higher in patients with narcolepsy than controls (Bosch et al., 2012; Fortuyn et al., 2009). Moreover, patients with narcolepsy are also more prone to experience daytime hypnagogia (Fortuyn et al., 2009), most likely due to excessive daytime sleepiness.
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.
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.
I also routinely take 10m nap between 10-12 every day. Always hit REM then too.
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.
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.
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.
Amazing, this is the exact method I found independently to escape sleep paralysis, which thankfully only happens before or after sleeping for me.
What if he fell facedown on something like a blanket and couldn’t breathe??
Wonder if they’re related?
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 level of learning or skill training that's possible to change your amount of laziness or drive
There are also things that don't require training. Music with tempo above 90 BPM (or better above 100) temporary increases the amount of excitatory neurotransmitters.
Be careful about reading too much in to the early effects of stimulant treatment. The short, medium, and long term effects of stimulant treatment on perceived effort are different, so this will change as your brain adapts to the medication.
Reduction of perceived effort after taking stimulants isn’t unique to people with ADHD. It’s why people have used caffeine, nicotine, or harder stimulants for centuries. As everyone discovers eventually, those early effects are not durable for years.
The attention-promoting effects of stimulants are more durable. That’s why people with ADHD can derive benefits for a long time. However, people who get hooked on the ability for a pill to make it easier to do unpleasant work can get into a tough spot when that effect wanes over time and those tasks are back to requiring a lot of effort again (although concentrating on them is still easier). Consequently, the discontinuation rate for stimulant treatment is much higher than people would guess after their first few doses.
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.
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.
I realize your symptoms are different and probably not eating late won't change anything for you, but for the slim chance that it does I wanted to share my experience anyways.
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
> The tryptophan found in hydrolyzed whey binds to a different receptor than normal dietary tryptophan, thereby allowing your body to reuptake it and produce serotonin as usual. (This is all in the study.)
Took me a bit to find the quote.
> If tryptophan uptake was abrogated by poly(I:C) treatment, tryptophan supplementation should elevate serotonin levels even during viral inflammation. To corroborate this, we used a diet containing a glycine-tryptophan dipeptide, which bypasses the need for B0AT1 and enables tryptophan uptake via dipeptide transporters.33 This diet compensated for impaired uptake in poly(I:C)-treated mice and led to an increase in both tryptophan and serotonin levels in systemic circulation
Now I need to ensure that whey protein contains some glycyl-L-tryptophan. The study used a lab rat diet "TD.210749" (unsearchable, maybe a custom diet) from Envigo/Inotiv. The citation used pure glycyl-L-tryptophan "G0144" from TCI Europe (~$100/g haha nope).
I can't find anything on glycyl-L-tryptophan content in hydrolyzed whey (maybe you can help?), but found one on other tryptophan dipeptides, alanyl-tryptophan and tryptophanyl-tryptophan. The ACE receptor inhibition seems relevant, too. The PepT 1 protein appears to transport the dipeptides.
"Selective release of ACE-inhibiting tryptophan-containing dipeptides from food proteins by enzymatic hydrolysis" Diana Lunow et al. - https://doi.org/10.1007/s00217-013-2014-x
I'll try this out for my early waking insomnia, mildly reduced energy, and digestive problems (started after I got Covid, almost exactly 2 years ago). I need to find one without artificial sweeteners (hate the taste). I'll report back in exactly 2 weeks (sets calendar).
> 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/
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.
> 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.
https://en.wikipedia.org/wiki/Emmanuel_Mignot
He shares extremely deep insights and latest state of the art information on N in layman terms on YouTube.
Simply enter his name and enjoy his latest talks from 2023 and 2024 from the Wake up conference.
He discovered the mechanism behind N. And there is hope for a causal treatment for N1.
It seems it's possible to get it from hypocretin deficiency via other routes like brain trauma, but they are confident enough to put this explanation in the DSM-5:
> Narcolepsy-cataplexy nearly always results from the loss of hypothalamic hypocretin (orexin)-producing cells, causing hypocretin deficiency (less than or equal to one-third of control values, or 110 pg/mL in most laboratories). Cell loss is likely autoimmune, and approximately 99% of affected individuals carry HLA-DQBl06:02 (vs. 12%-38% of control subjects). Thus, checking for the presence of DQB106:02 prior to a lumbar puncture for evaluation of CSF hypocretin-1 immunoreactivity may be useful.
https://ia800900.us.archive.org/0/items/info_munsha_DSM5/DSM...
pg 374, par 4 (pg 409 if using a PDF reader).
interesting to see several people here mentioned they got narcolepsy after this vaccine.
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).
If normal or not I can't say...
* 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?
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'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.
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.
Adding bromelain to mix might help.
Bromelain cant harm though, is cheap, hydrolization is certainly not perfect, and it has other positive effects on body such as anti inflammatory, pain reduction etc.
In a fair world the patent would be voided and it would not cost more than 20 dollars a month.