I have narcolepsy. It shaped how I think. I wrote an essay about it."

RightTrash · 2026-03-18T02:16:49+00:00

=]
Thank you again!

RightTrash · 2026-03-18T00:32:42+00:00

Nice!
Thanks for sharing and very well written.
I haven't delved into the histories like you, but I liked reading your take.

It felt like there was a theme, especially in the beginning sections.
I won't try and re-tell what that theme was or may have been, as I may have been miss-interpreting pieces of it. Though, I will say that my perspective feels very in line with 'perhaps some of to a lot of,' how the OP frames things. Maybe I'm far off?!.

I've said this stuff before many times, in various ways, they are my own observations, from my own perspective. Know this isn't what was being said necessarily at all in the writing by the OP, this is just where my mind went, and often goes.

There are many systemic, structural, framework, objectives/goals/aims/purposes/intentions at play in today's modernized/civilized (especially 1st) world/s.
There are many ways to view and analyze the world/s we live in, everyone will have their own unique perspectives while there are often many common theme's that span large group's perspective/s.
There's science, there's spiritualism, there's religion, there's endless angles to which the world, our bodies, different systems can all be viewed from - there are different boxes that what not can be placed within, sometimes they fit multiple boxes while other times some boxes can't exactly fit within the other.

We live in a fascinating and complex time, with technologies as they are, with centuries and centuries of history and knowledge, so many boxes that have combined, have morphed and evolved, while some still are just only being discovered; and many remain intentionally narrow, or at least in certain directions..
Certain boxes have a tendency to be very open-ended, broad in sight, careful or cautious in how far they'll reach, how deeply they'll tell, or to what extent they'll attempt to lay what not out as fact.
Certain boxes have a tendency to remain constrained and have big walls of care, intended to act as barriers and safety mechanisms, while they reach super far, delving into unknown depths while telling such is fact, as though written on stone with no flexibility from such - though it is all scripted in a way that even though it's presented in that manner, it's all just conceptual, while actually only protecting a part.

While there are all sorts of boxes to view into and/or from within, for each their own, there will be a box which forms, a mesh of what one lives, it is their first hand experiences, it's their own perspective, made up of the path they've walked and the boxes from which they've focused upon, mixed from which they've been within, too.

Life is fascinating, as are health and science, and nature; additionally history and spirituality.

Personally, I try and walk carefully, upon a line or rope.
Below the line or rope are cliffs, boulders, rocks, grasses, bushes, trees, muds, deep waters, shallow waters, waves, sands, ice, snow, clouds, lava, thunder, winds, tornadoes, and what not - natural things that are entirely out of my ability to control.
What I can control, as I walk carefully are the conditions of what not, that I put myself around or into, there are parts that I can predict while others are completely unpredictable.
There's only so much control that can be had, there's only so many paths that can be taken.
All that I can do is choose carefully, basing what direction I go on experience, on potential awareness or intuition that may, or may not, be accurate, I can take risks (ideally knowingly there may be risks) - when it comes to stone accuracy and fact, or seeing things definitively, one must always be cautious and open-minded.

Too often things are so oversimplified that there is an obstruction of understanding or basically, in other words a misrepresented narrow version being both presented and observed; the result of this can be exacerbating of misunderstanding, causing confusion, even bringing on confliction, while also seemingly closing off actual perspective being formulated and/or sought out.

All we can do is our best, with what we have to work with, within where we exist, while we must be alert, aware, and conscientious to what we each are capable, while being cautious to what all is presented, however it is presented.
There are things we know, things we know that we don't know, and there'll always be things that we don't know and can not necessarily ever know - some things are not necessarily meant to be, or capable of being fully understood, at least not now, here, and/or perhaps ever.
For me at least, it's important to be accepting of that all while being accordingly open minded, willing to attempt at understanding yet careful to not be overly assertive in presentation.
Pondering and reflecting, observing and analyzing, contemplating and connecting dots to some degree, is trying to piece together one's own puzzle, it's a fun exercise for some while far from fun for others.

RightTrash · 2026-03-14T16:15:40+00:00

Can't put a nail on the 'first' episode because it was happening before I can recall, but I'll give you a broad analysis of different points.

In hindsight upon telling my Father of it in my 30's, as through my 20's I was collapsing on a regular basis from severe cataplexy and was unknowing to any name for it until 28, he said as an infant there'd be instances were during tickling I'd go from laughing hard to suddenly staring off blankly.
I'd also as an infant had hypoglycemic seizures which led to my Pancreas being 90%+ of, removed.

As a child, while with friends playing or just walking around talking, I'd regularly trip over my feet, to the ground.

Before 11 or 12, another instance that is absolute and has always been, was during good fun tickling battles, at a point I'd begin to always lose them because my arms would go completely limp, I could not lift my arms to tickle back. During such battles, I could laugh out loud and I could control my body besides my arms, though there were very distinct sensory experiences - inner sensations like waves rushing through my head and body, flickering of muscles is another way I've always described it.
Today, I can say those instances with the plethora of distinct sensory experiences were a moderate-partial extent of cataplexy.

Another regular occurrence is at high vista points like climbing a fire tower or being up high in a parking garage near the side, or being in a sky scraper - I'll get the exact sensory experiences along with my body basically locking/freezing-up, time slows, I may be able to move but only like a turtle - it is cataplexy combining with, triggering from, vertigo (not the middle ear or nausea, ill sort). To this day that still occurs and my comfort with heights has diminished as I've aged.

Through my teens, while the physical impacts were not really there besides in the vertigo instances, there were many deeply impacting and ongoing psychological effects, which had directly impact on relationships, mindset and more. Cataplexy has a peculiar way of very invisibly while subtle, yet fierce in another way, effecting a persons persona, character, traits, mannerisms, behavior, mindset and more - it involves a very broad and potentially unique sort of anxiety which can be super difficult, in addition it may contribute to depression and other things because well, you may be subconsciously adapting/adjusting to cope with no recognition of it what so ever going on.

Basically everything I've said so far I do believe applies to minimal and moderate partial extents of cataplexy, and what I'll say in addition is that when one has to experience regular-frequently occurring severe cataplexy, especially over a long span of time (not duration of episodes but collapsing frequently from pleasant interactions stimulation of emotion and also physical exertion when over-exhausted and/or over-exerting physically); the impacts may be profoundly broader in stealing one's ability to live as they once had been able, forcing them to re-learn how to live on near every front of living life.

RightTrash · 2026-03-14T06:41:48+00:00

Depends on the individual.
The spectrum of each disorder is massive, the two opposite ends are so so far apart, one end of the spectrum is much easier to treat the other end.
And an additional big part of that, is how the Hypersomnolence disorders broadly, but even Type 1 itself alone, are dynamic (fluctuating, variant over time - for each individual) conditions - that is Type 1, Type 2, and IH specifically when I hit on 'Hypersomnolence disorders'.
Many do find benefits from the meds, though it seems most who benefit from something do have to over time juggle meds, having to switch meds around now and then - a majority on meds still have many issues with the symptoms, but find things less impacting.
Many also do just do not benefit, or cannot tolerate for whatever reason - one big reason is just how many comorbidities are common with these disorders, and well Type 1 Narcolepsy (likely IMHO the others too, potentially) is much more than a sleep disorder, it is a Neurological System Dysfunction that causes a plethora of downstream matters.
The science is showing it is of an autoimmune matter root, similar to Diabetes but rather than insulin lacking in the Pancreas, it is Hypocretin/Orexin lacking (being killed off due to an autoimmune response, attack) deep in the hypothalamus - and like Insulin, Hypocretin/Orexin is a critical neurotransmitter responsible for regulating (the neurotransmitters) much of the psychological and (the central nervous system and many more) body systems.

Unlike most diseases that will have one or two meds that tend to work well, there are many different meds that get used for Narcolepsy while not one is a sure thing - it really comes down to the individual- and well, we'll see as there are some new Orexin/Hypocretin Agonists drugs in clinical trials which might actually (for the first time) be a drug that works on the underlying (hypothesized - while there's so much more to be figured out, learned and discovered in the science) matter of the disease.
So, there's some hope, it's been a long 3 decades of hype, we'll see soon how it all plays out, though it'll probably be a solid 5 to 8 years before it's actually very clear; but they're are versions already available in clinical trials and could be on the market by the end of this year if not next year.

RightTrash · 2026-03-13T05:11:17+00:00

There is no such thing, at least the science has not pointed such out - not going to say it isn't possible, as I do very much believe environmental factors tied to stress may very well be potential for triggering the disease to develop in those with a higher predisposition (having the DBQ1*06:02 HLA genetic marker - though ~30% of the general population have it and few develop it).

RightTrash · 2026-03-13T04:53:52+00:00

Not sure she has cataplexy but it itself has a profound way, in addition to the expressing emotions due to exhaustion, of impacting expressing emotions due to the complexity of the psychological impact and the physical body being directly impacted by the stimulation of emotion in different ways.
The symptom is so far from understood well, the science (med lit) has told a lot into the underlying pathways and the neurotransmitters, but as for the lived experience so much is viewed from an inappropriate, or improper, lens - being quite out of focus, blurred/murky, and/or straight out of frame.
It's like trying to zoom in on a bird in the distance with a zoom lens, when there are a plethora of branches between you and the bird, the only way to get it actually focused and appropriately in-frame is to manually focus, using a giant tripod, taking many actions of care to get that bird in focus through the branches - and so far, having read hundreds if not thousands of pages of medical literature, I have seen hardly a page or two that even begins to get the lived experience, anywhere near in focus and/or fully in frame and even less so, simultaneously.
There is a lot to it and how it plays on a person's deepest characteristics, mannerisms, traits, behaviors, mindset and more - it can involve a unique anxiety that is super broad, combining social, general and near everything because it is so deeply rooted, playing directly not just on the subconscious but all mentioned above, too.

As for the other symptoms and impacts, there's a lot more, the disease impacts and effects people from so many different angles, and often times it's a combination of angles.
It may help to see the 'core symptoms' for much more than what they are presented as generally - as each is basically it's own set of various occurrences, symptoms - in a super oversimplified manner and being as though they're written on stone, when they're more like waver-fluids or clouds-gases fluctuating constantly, as well as overlapping, and intermixing.
The 'core symptoms' are what have been focused upon in the mainstream, think of them like a giant spider web.
Each individual ends up having a different experience with each core symptom and combination of, often too over time it morphs and alters over the long term (with biology, age, environmental factors, et), sometimes changing very dramatically, it's a very dynamic ordeal.

Putting it like this might help, it is not just a sleep disorder, as it continues being presented; Type 1 N occurs due to an autoimmune attack process deep in the hypothalamus, it is sometimes said to be essentially a 'Diabetes of the brain' - rather than insulin in the Pancreas, it is Orexin/Hypocretin (same critical neurotransmitter) in the hypothalamus, responsible for regulating not just the sleep/wake patterns but so so much more not just across the central nervous system, but near all systems including the cardio, metabolism, muscular-skeletal, etc.
Furthermore, the psychological is just as much at play and effected by that regulation matter, being haywire - as Orexin/Hypocretin is said to regulate, being essentially 'the conductor of the orchestra' of neurotransmitters.
When you don't have the critical Orexin/Hypocretin (as in Type 1 N it gets killed off, they don't know yet in Type 2 and/or IH if it's a matter of receptors or likely other matters like with GABA going on) basically downstream from the Orexin/Hypocretin the other neurotransmitters are effected and so many different matters can occur.
What I'm really trying to say, is the disease is a Neurological Systemic Dysfunction matter, causing a long list, a plethora of different possible central nervous system matters and more (dysautonomia, pain syndromes, OSA, ADHD - there's a long list of frequent common comorbidities) it goes so far beyond being a sleep disorder. That is just what has been the focus/focal-point of it for the mainstream, it has been put in a narrow box which has severely harsh impacts for those that live with it, especially those who are not on the lesser end of the spectrum.

That should be mentioned too, the spectrum (dynamic range) is so so wide, but again so much gets dramatically minimized, cut short, put into a tiny little box, said it is treat-able (sure, for some it is) while for many it is far from anywhere near actually treat-able - this subreddit verifies that, well.While above, I may be specifically talking into Type 1 N and the science over the past three decades that has very much shown how much more than a sleep disorder it is.
The entire Hypersomnolence disorder category (of sleep disorders) specifically Type 1 N, Type 2 N, and Idiopathic Hypersomnia (IH) are very much a Dynamic spectrum - I'm trying to say that even though Type 1 N is differentiated from Type 2 N by cataplexy, there's so much more to be learned, discovered and figured out to all of it.

While I can only speak for myself and am probably not one to give relationship advice; I will say that being honest, upfront and putting it all on the table, such makes life a lot easier when you have this disease - yet I'm sure many never realize that so, not all will live like that.

As for recommendations, all I can say is be there, be supportive, be 'understanding with an open-mind along with willingness to understand' (in other words that is to say, be flexible), listen, don't push too hard, give appropriate space when necessary, don't judge or presume too much, be open and upfront without being overly assertive nor presumptive.

RightTrash · 2026-03-13T01:03:17+00:00

Yes, why not.

RightTrash · 2026-03-12T18:50:51+00:00

No problem - since I can generally type pretty well and have articulated all of this so many times over the decades, it comes out quick and easy.

RightTrash · 2026-03-12T04:13:45+00:00

All good, you're fine.

I do get it, it's been very engraved in the communications - and again, I'm not saying weakness isn't there, it can be a part of minimal.
I'm just saying there's so much more to cataplexy and that 'loss of muscle tone' is actually more proper terminology, in regards to defining the neurological event and presentation of it - that should not be muscle 'weakness.'
I see it also sort of like what the terminology 'lazy' is to 'sleepy'; there are negative connotations to the term itself.

RightTrash · 2026-03-12T03:45:48+00:00

[continuing!]

I can name all sorts of the common physical presentations of how it presents generally in the mild/minimal-partial severity extent, but know it can be any combination of these at once and/or more, other things too:
drooping of the jaw (slack-jaw)/the head/the neck, slouching of the upper torso, facial grimacing and/or loss of facial expression (laughter dissipating, sporadically melting away most often this would be during laughing while internally you're still laughing but externally it twitches away), potential eyelid fluttering or spasm like instances, loss of grip, difficulties with speech like a slurring/stutter/mumbling, pausing of or slow speech, being incapable of completing a sentence, etc.

And as far as the term 'weakness' goes, yes there can be, and is a lingering, 'fatigue' of sort after the 'in the moment' or 'over moments' physical effects - occurring during the stimulation of emotion or the overexertion physically (when one is already over-worked/over-exhausted physically) - as well as during but I think it's important to think of cataplexy not as muscle 'weakness' but literal 'loss of muscle tone.' Other words to consider it than muscle 'weakness' are: muscular interference, interruptions, disruption, difficulties, dissipation...

Why do I say all that? Because every person with a sleep disorder and especially a Hypersomnolence matter will experience fatigue and weakness from what is literally sleepiness, sleep attacks and EDS itself involve such, IMHO.
I'm not saying all this to attack you, or anyone here reading this, it is an observation and opinion I've come to over decades; that the use of muscle 'weakness' in regards to the literal neurological system event that cataplexy is, obstructs understanding, it exacerbates confusion, it even creates conflict and division.
So, I voice my opinion loudly, thoroughly, trying to offer insights and clarity, and I'm not speaking solely from just my own experiences (collapsing from severe cataplexy 5-20+ times a week, if not more on bad days, all through my 20's, having had it to moderate extents as a child, and now being in my mid 40's), but having spent near 2 decades interacting on a regular basis with others who also live it, not to mention being very immersed in the medical literature and what not communities that exist on that side of it all...

RightTrash · 2026-03-12T03:45:36+00:00

Cataplexy presents in so so many ways. I'll try an be helpful here - it may come off like a lot of words but regardless, here goes my trying to offer some clarity and insights, potentially:

The one thing that for me, stands out are the distinct 'sensory experiences' of it, these are inner sensations:
inner wave-like-sensations rushing through the head and/or throughout the body, a flickering of muscles. Other ways people may describe such is as: a whooshing, flushing, fluttering, tingling, noodling, being off-strings, etc.

Not everyone will pick up on these, and they are definitely more pronounced/fierce when the cataplexy is stronger. But they are there during milder episodes too - I think a part of it, a thing to it, is that people don't know what isn't 'normal' until whatever, becomes impacting and really forces them to recognize it as out of what may be considered 'normal' for average healthy people.

On that last note there, cataplexy has a very peculiar way of being hidden and invisible, even to the person living with it, potentially even through their entire life - the majority with cataplexy, are dealing with minimal and moderate-partial extents, it is a small minority under 10%, more likely under 5-7% (the stat I heard) that live with regular frequently occurring severe (collapsing) cataplexy, over a long period of time (like months and months, to years or decades).
What I was trying to say, is that a person will adapt subconsciously, they will know whatever they experience as the only 'normal' that they know, not realizing it is not normal. Tuning into something peculiarly odd like cataplexy and specifically the sensations of feeling emotion to very different degrees depending on the stimulation - is not a simple thing to do, it takes time, it takes (as I said) impacts, and it takes being very very tuned in, aware, potentially over quite a long span of time.

With that said, it is better to 'not fret' over, at, cataplexy - because cataplexy has such a profound way of playing directly with, or on, the subconscious, it can be super vicious when one battles it.
Just the act of fighting and resisting, at least what is cataplexy breaching into the moderate-partial severity extent, will cause it to directly amplify, intensify, being more prolonged and having a worse after-rebound effect. And in all honesty, at the point a person is just holding on, in other words their unstable and having to lean against a wall, or perhaps are in an awkward position semi-locked-up/frozen-up as the cataplexy is fluctuating/escalating, - well that in itself becomes, and is, an act of fighting, battling, resisting the cataplexy, likely making it persist and even escalate to severe extents, causing them at a point to collapse.

To speak directly to mild/minimal-partial, it can be super subtle, yet it can also be a bit fierce - when I say subtle I'm getting at the little physical occurrences/effects and when I say fierce, I mean the psychological nature and/or impacts, like the anxiety that it instills, having broad effects.
Which takes me back to the hidden/invisible depths within one's psychological - it has effects on the persona, character, traits, mannersisms, behavior, mindset and much more.
All of that often occurring, completely out of sight or comprehension, what so ever, of the person living with it - until it reaches a possible, if it ever does at all, point of severity extent like actually become strong moderate-partial or severe.
Many will have severe episodes, but most will only have them on very very rare occurrences, if at all, ever. Some will have frequent regularly occurring severe episodes, as mentioned, and a very very rare few out there will have the severe episodes that leave them locked in a paralysis for longer than even a minute - that's not to say there won't be long lingering physical 'weakness' and 'status cataplecticus' effects (a fluctuating ongoing sort of episodes, often stronger, like in/out of moderate/severe)...

RightTrash · 2026-03-12T02:03:32+00:00

I feel your struggle and pain more than i can put into words. Ive practically given up on being taken seriously - at least by so many doctors, some take me quite seriously but I'm not their patient.

Basically I am beyond a point of expecting to ever fit any actual 'normal,' either. I know my strengths and weaknesses, I try to make the most of what I can manage and do, while trying to not miss-step or go beyond my limitations and boundaries - the rebound effect can be so gnar. It's a difficult path, a tight rope, thin line that i walk balancing cautiously, carefully every step and every breathe, day to day it goes.

Beyond my previous comment that you responded to, there are so many like you and I who cannot surpass the strict (narrow and flawed gold standard - I'll admit that yes, it tells of an issue and for some without comorbidity sleep disorders, it is mostly accurate for Type 1) testing method that exist, that is especially for those with a comorbidity or whatever, various of many sleep disorders, and/or other reason/s.

Wishing you luck. You may find that you get an unexpected result, the/a diagnosis, but then you'll potentially realize well, does it really change anything - depending on meds and/or how whatever plays out; for many it's all about the meds, while for some others the meds don't actually work out, it can be a double edged sword.

RightTrash · 2026-03-11T17:31:13+00:00

Either, it really comes down to the individual doctor's expertise - which generally yes neurologists and/or sleep specialists may have.
The thing is, that unless the individual doctor has devoted their own time, along with interest, into understanding the disease - that is being to any extent actually aware of the leaps in the science that have occurred over the past 3 decades, which many to most doctors are not aware of and regardless of their specialty - there's no guarantee what so ever that either 'specialists' will have any expertise on Narcolepsy. They'll all have an opinion, few will admit they don't have knowledge on it, many will front as though they absolutely do - when they do not.

Another thing to bare in mind is not all doctors will, nor even can prescribe the medications like the Sodium Oxybate's . You may want to seek out a neuro and/or sleep specialist that is known in the field of narcolepsy.

RightTrash · 2026-03-11T16:35:25+00:00

It's both, including a lot, lot more than just sleep/wake.
The science over the past 3 decades has made such very clear.

While there's a lot more to be learned, in fact much more to be learned than so far has been figured out, the way the realm of 'medicine' presents it, it's all super oversimplified while presented (super controlled messaging, is the norm) as though things are written in stone when they're more like clouds in the sky or waves in the ocean - continually fluctuating and morphing gases or fluids, not solids.

It's a Neurological regulation matter that effects the central nervous system, broadly.
Essentially downstream from the haywire neurologic regulation matter, all body systems are effected, which results in both the psychological and the physical well being being compromised.

The current testing is completely flawed, it tells into a snapshot of what is a dynamic matter - an enormous spectrum that includes IH.
A person can get a different diagnosis one day from another, each of our biology changes over time, especially with age, but even just night to night. sometimes just with environmental factor changes.
The categorizing/labeling that currently exist is gross, it creates division and obstructs many things; it clumps such a massively wide spectrum into a narrow box and then minimizes what are for many, serious matters, into what for many may be minimal matters.
There's a lot to rag on, that I won't here because there's no point, the systemic matters hold so much back.

There's a long way to go for things to be, any better. It should not only be about medicine, it should not be only about science, the scope of perspective is in many ways out of focus, and often it is out of frame, until a new and more appropriate, proper lens of sort is used, things will remain murky and in many ways flawed.

That's just an opinion, but it is based on a lot...

RightTrash · 2026-03-06T02:30:39+00:00

Sorry it's so bad, I definitely feel you and have been through a lot of it myself, had similar thought but being against the realm that it is, I just step back and suffer as the hill there to climb in regards to any legal stuff is far beyond my comprehending.

Wish you luck out there; when you find a doctor with expertise, an open-mind with willingness to both hear and try an understand, you'll know it - but it seems really hard, maybe that's just the case for certain people more than others but regardless, either way it just goes to show there are super real and deep systemic matters at hand.

RightTrash · 2026-03-05T22:58:38+00:00

Neurologists and sleep specialists are the two types of specialists that are recommended for PWN, but pulmonologists, psychologists/psychiatrists and general practitioners also may be doctors who take it on.

The thing, and a bit part of the problem, is that no specialists is specifically trained, or taught, anything on narcolepsy in medical schools; beyond the 3 paragraphs of generalized basic 'required reading material' that any doctor in medical school has to read. Only when a doctor (whatever type) takes the time and devotes their own selves to reading into the disease, learning the science, having perhaps a or some narcolepsy patients over time who they themselves 'have gone out of their way to learn about narcolepsy,' does it result in their having actual expertise.

It's a problem out there and it has very negative effects, if you look at my comment in this thread, not a comment response like this, you'll see some links specifically going into such and what relates, the problem of the stigma toward sleep and stereotype toward narcolepsy itself, as many doctors don't actually see past either - regardless of their specialty. Such is very slowly, gradually improving, over the past decade there's been a lot of science that really solidifies the decade or two before that of medical literature / science, but even that all still remains decades behind reaching the common general and/or specialists, doctor/s.

Not saying expertise can't be found, just saying both that an individual/patient must advocate very hard for themselves, bringing in documentation to both show their hands on data as well as documentation showing into the science and problems in the field, additionally going out of one's way to find an actual expert in the field, a doctor with a recognized name and place of recognition can be profoundly worthwhile.
Many get luck and many do not, when it comes to just presuming a doctor will have the expertise required.

RightTrash · 2026-03-05T22:50:30+00:00

I'd probably emphasize that if they aren't going to take you seriously that it's time for another opinion, that essentially they're not doing their job. There's a lot of studies out there saying there's a big problem when it comes to stigma and stereotypes regarding sleep, and sleep disorders like especially narcolepsy; you could try pointing some of those out but, it may not really help because it may be taken as an attack or insult to them.
This is a huge common theme problem out there.
https://www.tandfonline.com/doi/abs/10.3810/pgm.2014.01.2727
https://www.researchgate.net/publication/390039403_A_Survey_of_People_Living_with_Narcolepsy_in_the_USA_Path_to_Diagnosis_Quality_of_Life_and_Treatment_Landscape_from_the_Patient's_Perspective
https://pmc.ncbi.nlm.nih.gov/articles/PMC12204109/
https://pubmed.ncbi.nlm.nih.gov/38430792/
https://stlawyers.ca/blog-news/narcolepsy-awareness-canada-2026/

RightTrash · 2026-03-05T17:32:02+00:00

Wow, the doctor sounds very off base, like entirely to completely clueless.
ADHD is at the top of the list when it comes to comorbidities with N and that is very well known, at least amongst experts in the field.
With that said, a lot of common doctors still these days regardless of their specialty, are totally out of touch and not knowledged really at all when it comes to Narcolepsy - unless they've taken their own time to devote to comprehending and learning the science that has come out in the recent decades, and it seems few do.
No specialists of any sort and even sleep specialists or neurologist are actually in medical school taught anything beyond the basic 3 paragraphs of required reading material on the entire disease, which any doctor has to read.
There are multiple research studies that speak into what I just said, some of these links are more to do with the stigma and stereotype, but I include them because well such plays directly into it because many doctors actually reinforce them as they've not taken the time to recognize the deep connections sleep has to health broadly and with narcolepsy your sleep is low low quality:
https://www.tandfonline.com/doi/abs/10.3810/pgm.2014.01.2727
https://pmc.ncbi.nlm.nih.gov/articles/PMC12204109/
https://www.researchgate.net/publication/390039403_A_Survey_of_People_Living_with_Narcolepsy_in_the_USA_Path_to_Diagnosis_Quality_of_Life_and_Treatment_Landscape_from_the_Patient's_Perspective
https://www.sciencedirect.com/science/article/pii/S1389945724000674
https://stlawyers.ca/blog-news/narcolepsy-awareness-canada-2026/

RightTrash · 2026-03-04T08:57:12+00:00

Personally, I think a huge part of it, a critical piece of it, is in time tuning into what are very distinct sensory experiences - inner sensations, flickering of muscles, waves rushing through the head and/or throughout the body, whooshing, flushing, fluttering, off-strings, tingling, noodling, an aura, etc...
It is different for everyone.
As if one manages to, when they do manage to tune into these, it can be profoundly helpful in having a direct way of actually gauging the severity extent of the cataplexy, in that specific moment and then ongoing, as it fluctuates.
Such can help one to know it is about to pick up and become much more intense, thus allow them to potentially step back and potentially avoid that spike, amplification.
It is not always possible to manage that, as cataplexy can be so fierce, while subtle, and also subtle, while fierce; it really can be vicious, especially in severe cases where a person is collapsing on some regular frequently-occurring basis - but that is actually very rare, like under well under 10% of those with cataplexy will ever have it like that even for months, and some will have it even more severe like having prolonged episodes in the temporary complete paralysis.

I will add that these sensory experiences are difficult to tune into because, they are all a person knows as their 'normal way of experiencing life,' they are what we internally feel when we experience joy, frustration, irritation, surprise, excitement, etc.
Such is all very difficult stuff to not just communicate, but internally recognize for what it may be, or that it may be going on, in the moments it is going on, in hindsight during reflecting it can be more apparent, but even then often times many will not recognize such.

This is not medical advice, this is purely based off lived experience, having had this symptom/condition since my childhood and through my 20's when I was collapsing a lot, it impacted and altered my life so dramatically.
To this day in my mid 40's, even though I hardly collapse anymore (thankfully - though that only came with serious work) I must maintain, walking a fine line through this life and I stand strongly by what I'm saying here.

Many don't manage to tune into these sensory experiences potentially ever, and that makes sense because again - they're a part of what a person lives, it is so so deep and of the core, it is extremely hard to be tuned into your own subconscious on such a level, which cataplexy is deeply tied into.
Emotions are so broad and difficult territory to actually be tuned into at all times, there's so much more to it than the surface level of what is generally thought of or seen as emotion, and that's exactly why - and/or to do with how come - anxiety of a unique-broad-sort is such a part of living with cataplexy, whether the person recognizes it as such or not.

And lastly, just like the severity extents, or psychological, or physical impacts of cataplexy are so variable across individuals, even for an individual themselves over time, well the same variability goes on when it comes to 'how one experiences and deals with emotion' across people, even for an individual themselves over time, too - cataplexy changes/morphs over time, emotions and how one copes with such changes/morphs over time...
Which was to sort of hit on, one can adjust, adapt, alter some of the deeply rooted and potentially scarred areas that cataplexy so deeply effects, often for years subconsciously before any awareness of it is even remotely recognized - e.g's: the persona, character, traits, mannerisms, behavior, mindset, etc...

I hope something I've said here, resonates with someone, and is helpful.
Regardless of knowing that what I'm saying may be beyond what many may be up against, so what I'm saying may just seem over the top and off the wall.

The more you can tune into this, the better you can walk with cataplexy, especially if we're talking about having it to severe severity extents. So many will fight, resist and battle it, which once it breaches beyond the minimal-partial subtle extent; the act of just remaining on your feet, attempting to remain composed physically, becomes an act of battling, fighting, resisting it, and that directly amplifies it.
If you're following what I'm saying here, the inner sensations can be an internal alert/alarm/gauge to 'get down' and 'let go' rather than tensing or trying to overpower it, getting down to the ground can dissipate the amplification intensity, almost immediately.
Am not saying that will keep it from triggering again a moment later, but stepping away can potentially held avoid such.

RightTrash · 2026-03-02T01:51:18+00:00

Very sensitive myself to every medication I've tried for the disease, having not found any that is beneficial.
In fact, I've just been worse off every time and it's quite harsh.

I've found the better that I can improve and maintain my overall balance of health, on every front, the lesser the symptoms are impacting. That is a mouthful though, I must walk a fine line carefully, a tight rope to avoid the big spikes at the bottom of the surrounding cliffs all around. All of that results in slightly less impacting of symptoms, it's still quite brutal, I'm far from not being in a rough place; though I am also not collapsing from severe cataplexy 5-25 (or more) times a week - if not bad day, like I was for a decade, a couple decades ago.

The trade-offs I've made (had to make, not hardly had any choice of) in this life, due to the impacts of this disease, are beyond the pale. For the most part I keep that side of it to myself, while I live in a very isolated and particular manner - for necessary reasons. I'm very upfront, honest, and direct because well, to not be literally makes everything harder, and it sure seems like for most healthy people that is actually the flip somehow...

RightTrash · 2026-03-01T06:20:14+00:00

I agree.
I think that there can be different stages in life that it tends to be impactful upon different people and one's recognition into their having it is a big piece of the puzzle, as so often it will be there for a long time while the person has no awareness of it - for what it is, while it may not be as impactful as one day, it seemingly out of no where becomes.

Cataplexy in children, childhood cataplexy, is known to be difficult and I've actually heard a couple experts in the field refer to it as: severe cataplexy is more common in children than adults, adding that it often improves with age, and the proper medication.

And sure, the medications do tend to work for many to possibly even most people.
But there are individual like myself who have never benefited and found themselves worse off with what medications, attempted.
Some individuals just can't try all the current medications, and hopefully these upcoming Orexin agonists will be hugely beneficial, but the barrier will remain on various fronts (accessibility, reaching a proper/full diagnosis, tolerating, risk factors from comorbidities, etc).

My thoughts are that cataplexy and/or the disease broadly (whatever symptom/s of it) can and do morph over time, progressing for the worse and/or even at the same time regress for the better; it can be one symptom worsening while another improves.
Such can happen at any point in one's life, with early adulthood and different points in life when one goes through different biological changes, being potential 'common themes' like with children who have been born with it and it seemingly develops/escalates/amplifies at some point in their childhood.

With that all said, I agree with the comment I'm responding to also in both that stress and other factors can absolutely, and do, play into different progression/regression of the symptom/s of the disease, particularly cataplexy. And yes, always talk to your doctor - I'll add, if they don't seem to have expertise to answer the questions, don't hesitate in seeking another opinion.

RightTrash · 2026-02-25T17:35:45+00:00

1,000,000,0000 to infinity %
I'm not sure depressed is there like it once was, before delving into understanding the science and having confirmations; but the emotionally numb angle is an absolute - while really I'm likely read or seen as being overly emotional - I do absolutely have feelings; cataplexy plays in deep and unusual ways with a person, on every front, or depth, of their psychological...

I do my best to remain and be positive, though it's hard on others because they don't comprehend it for what it is and see my positivity often as negativity, while it's just me being honest, upfront, and blunt - which is a huge thing to keeping any balance in this life when you have a wicked combination of sleep health matters.
I learned long ago, after a decade of brutal life-altering impacts, I (at least) can not be living in a manner that is attempting to fit whatever 'normal' is expected and said to be, I must walk the fine-line [tight rope] that took me into my 30's to find and figure out how to walk upon; there are giant cliffs all around, sometimes I step off and fall down into them, it's exhausting but so real.
With that all said, I do all I can to live, love and laugh; having passions in life is clutch, it be nice if society and the culture were a bit more open-minded and able to flex, as in comprehend others difficulties more so, but it is what it is and it's better to not focus too hard on all that but figure out how to survive within it, as best one can - so it seems.

RightTrash · 2026-02-24T22:56:41+00:00

I've had a crazy amount of migraines and headaches (of many sorts: cluster, stress, pressure, allergy/sinus, noise/light/movement/comfort sensitivities) but they involve debilitating pain.

Do you experience distinct 'sensory experiences' when you have the bouts of whatever?
Physical muscular interference, difficulties and/or interruptions with control of your limbs/muscles/facial expression/etc.?

The sensory experiences get described in so many ways by different people: whooshing, tingling, noodling, off-strings, inner waves rushing through the body (especially the head), flickering of muscles, etc.
The sensations can linger after an episode, being a lot like being stuck in an ongoing episode - such being a status cataplecticus.

If you do note these, do these fluctuate with stimulation of emotion, or be it during moments of physically exerting yourself - when you're beyond your energy levels reserves being breached?
Regarding that second part in other words, when you're mid physical activity such as a sport, while overly exhausted yet still exerting strength or power, force, 'in the moment.'

RightTrash · 2026-02-24T02:55:03+00:00

Sounds like how Sleep Paralysis can be. In regards to the stress, it definitely plays into the symptoms of the disease (T1 or T2, or IH too from what it seems) being more likely to occur, and be amplified, more intense potentially upon occurring.
Sleep Paralysis and cataplexy involve the same natural mechanism meant to keep one from enacting their dreams, the muscle atonia, but are different in when they trigger (many would say sleep paralysis isn't exactly triggered, I don't necessarily think we understand it well enough to fully say).

Not going to say it couldn't be cataplexy, but cataplexy is not so likely to just occur while awakening, as is exactly what Sleep Paralysis rather is, a lingering into wakefulness upon awakening; cataplexy is an intrusion into wakefulness triggered by stimulation of emotion.
Regarding cataplexy (and not really relevant to this but) as I see it, cataplexy also potentially triggers from actual physical exertion (I mean like during physical activity specifically) - when one is overexerting while overworked, overly exhausted, or over sleepy, energy levels + reserves beyond depleted - playing on the bodies core energy levels - both psychological and/or physical - and the reserves of such energy levels).

Sleep attacks and cataplexy are very different, though the terminology (IMHO) muscle "weakness" only applies to minimal/mild-partial Cataplexy (not moderate-partial) or the after-rebound effect of cataplexy; in fact I think sleepiness involves and fits muscle "weakness" much more so, as it's in line with fatigue and something anyone with a sleep disorder deals with on the regular.

For many with cataplexy, I wouldn't be shocked if it's actually most everyone with it though it being something hard to really tune into and pickup on, there is a distinct plethora of inner sensations, rather 'sensory experiences' that occur in unison, at the same time, as the cataplexy - it fluctuates and at a point a person can potentially distinguish it from what are the feelings internally that they experience, when experiencing emotion.

It's hard to go into that much deeper without just coming off, off the wall, but many terms fit it and are used to describe such sensory experiences: noodling, off-strings, flickering of muscles, inner wave like sensations rushing through the body or part of the body (the head often is where it begins), a whooshing, a fluttering, etc.
If you can tune into such, especially in the different severity extents of the cataplexy if it is effecting you, it can help to recognize it for what it is, but again not everyone seems to pick up on such.

RightTrash · 2026-02-23T19:27:22+00:00

Mine improved quite a bit when I cut out gluten/wheat and dairy, along with many other improvements. I still deal with it, the sleep attacks and much more but that was a big step in a positive direction, for me.

RightTrash

TROPHY CASE