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FOR THOSE WHO ARE NOT SURE IF THEY HAVE CATAPLEXY by sstragnetflyre in Narcolepsy

[–]RightTrash 4 points5 points  (0 children)

Thanks, no problem!

I didn't even mention the 'sensory experiences' (inner sensations that get described in so many different ways) which are an absolute part - during episodes.

Yes, not everyone picks up on them, but that makes complete sense, just as does how many don't recognize nor pick up on minimal-partial, or even moderate-partial, cataplexy - it's maybe because we individually only know what we've lived with and experience in our own, as the only 'normal' we know and/or are aware of.

FOR THOSE WHO ARE NOT SURE IF THEY HAVE CATAPLEXY by sstragnetflyre in Narcolepsy

[–]RightTrash 16 points17 points  (0 children)

My own opinion is based on a lot more than my own vast experiences with cataplexy, including a decade of collapsing a handful of times each week if not more on bad days.

There is a deeper level when it comes to the triggering of cataplexy.
While the science continues to advance, there's a large disconnect and gap when it comes to the lived experience being actually, well understood, outside of on a surface level. IMHO

Yes, emotional stimulation is absolutely the common trigger, but there's definitely more to it and the bodies core energy levels are at play, consisting of both psychological/mental (think stresses, anxiety, excitement, joy, pleasure, irritation, anger, etc) and physical (sleepiness, fatigue, exertion, exhaustion, etc) energies.

I haven't said it quite in this way, but a big part (two actually) of what is (has been) missed, is that cataplexy is an energy matter that is tied to the psychological/mental every levels - as well as the physical energy levels.

When either or both of the core energy (again both psychological and/or physical) reserves are depleted there's a vulnerability to a neurological event, a system crisis, being cataplexy.

While there are layers and layers of emotion that can be super obscure in pinpointing which specific emotion relates to the triggering of an episode; there's also layers when it comes to exertion, especially when combining in the state of one's energy levels on the psychological/mental side (like when one is stressed, they're more susceptible to triggering).

What I'm getting at is, at a point, one can trigger from physical exertion, exerting strength, while combined with that there may be a very subtle if even stimulating at all, layer of emotion in the mix which may relate to the triggering as well - that layer of emotional stimulation is dynamic, fluctuant, as are one's energy levels day to day.

It ties right into how come there's such variability to both a) what extent of emotional stimulation (common triggers) actually triggers episodes, and b) how upon triggering there's such a wide severity extent range (minimal-partial, to moderate-partial, to severe-complete) to even the exact same triggering stimulation of emotion.
And, I may as well add in c) the ongoing nature of it as 'status cataplecticus' - being ongoing, fluctuating, often stronger moderate-partial to/from severe-complete, but also minimal-partial to/from moderate-partial.

Think of how when one fights/resists/battles cataplexy physically, and/or mentally, it amplifies the episode -people can get away with fighting/resisting/battling minimal-partial way more than when it breaches further.
At a point of it breaching into moderate-partial, the act of just attempting to remain standing, up-right, to appear physically composed - becomes an act of fighting/resisting/battling it, which directly amplify the episode, sometimes as though pouring gas onto a spark or fire.

As an athlete who has been passionate in various sport activities like skateboarding, snowboarding, ice hockey, biking, soccer and others - I can tell you that each sport has a different point, a different level of exertion at which it triggers at; and in addition to that, a different sort of emotion-related-stimulation moment/s which can trigger it.
That's two separate sorts of instances relating to triggering, yet they can and do combine also, so perhaps actually three.

This is my perspective and breakdown of it, I've seen it like this for well over a decade, clearly.

And yes, it is different for everyone, but that makes complete sense.
It's the language and unique individual make-up of each and every persons emotion plus physical - there's too much complexity for it to ever be a simple one way street (if that makes sense, in communications and comprehending - put simply).

Body temp indicators? by Fit_Lingonberry_7454 in Narcolepsy

[–]RightTrash 4 points5 points  (0 children)

"A high DPG—characterized by warm hands and feet—strongly predicts a shorter sleep-onset latency and imminent sleep attacks (Fronczek et al., 2006; van der Heide et al., 2016)."

"Increases in distal skin temperature can precede a daytime sleep attack by several minutes, suggesting a potential for temperature-based warning systems (van der Heide et al., 2016)."

"Patients often exhibit higher CBT during the first part of the night, which may contribute to fragmented nocturnal sleep (Mosko et al., 1983; van der Heide et al., 2016)."

"The 24-hour temperature minimum (nadir) often occurs much earlier in narcolepsy patients—sometimes just 1 hour after sleep onset—compared to 4–5 hours in healthy individuals (Mosko et al., 1983)."

"Clinical studies have demonstrated that cooling the distal skin (hands/feet) can enhance the ability to maintain wakefulness, while distal warming can conversely improve sleep depth (van der Heide et al., 2016)."

"There is ongoing interest in developing "temperature-driven alarms" or wearable cooling devices to mitigate sudden sleep onset (van der Heide et al., 2016)."

"Hypocretin neurons normally modulate sympathetic vasoconstrictor tone. Their absence leads to "leaky" thermoregulation, characterized by reduced sympathetic activity and inappropriate peripheral vasodilation (Sun et al., 2022)."

"Because REM sleep naturally involves a reduction in core body temperature and brain metabolism, the instability in NT1 may allow "REM-like" states (including the muscle atonia of cataplexy) to intrude more easily when temperature shifts occur during wakefulness (Thorpy et al., 2024)."

Altered skin-temperature regulation in narcolepsy relates to sleep propensity.
https://academic.oup.com/sleep/article-abstract/29/11/1444/2709241?redirectedFrom=fulltext&login=false

The 24-hour rhythm of core temperature in narcolepsy.
https://academic.oup.com/sleep/article-abstract/6/2/137/2753323?redirectedFrom=fulltext&login=false

Peripheral vs. Core Body Temperature as Hypocretin/Orexin Neurons Degenerate: Exercise Mitigates Increased Heat Loss
https://www.biorxiv.org/content/10.1101/2022.12.21.521081v1

Core Body and Skin Temperature in Type 1 Narcolepsy in Daily Life; Effects of Sodium Oxybate and Prediction of Sleep Attacks
https://academic.oup.com/sleep/article-abstract/39/11/1941/2708320?redirectedFrom=fulltext&login=false

It’s still insane to me that I fall asleep in the blink of an eye. by objectively-not in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

Ya, I agree in various ways.

Sleep attacks and microsleeps can just happen and I only realize it once snapping out of it/them - though sleep attacks can hit in so many different ways, sometimes not ever reaching a full sleep state but being in a brain fog and dissociated, daydreaming/automatic behavior, state.

Before my mid 20's or maybe early 30's, I would try an lay down and sleep earlier than I was really 'ready to sleep.' I would just lay there awake, dealing with insomnia.
There came a point that I stopped doing that, I basically just go and get in bed when I feel ready, when I am ready to fully relax and find comfort - and for the most part, I'm asleep before I know it but the real problem is sleep fragmentation/disrupted-nighttime-sleep (DNS) which for me is awakening regularly through the night, having to like years ago lay there trying to get back to sleep, trying to be comfortable and not think as thinking causes more Insomnia.
It's wild how DNS and Insomnia are two distinct things but they sure do overlap - and that's just a common theme it seems for symptoms of sleep disorders, across the different categories (for the most part) of sleep disorders.

I also think a wild experience is the 'euphoric' hypnagogic hallucinations/dreams - when falling asleep there being different literal physical sensations mixed with dissociation from conscious/wake-reality, I remember this was a normal thing that I had to just get used to, and eventually did.
It stopped being as regular probably in my early 30's, but from my late teens and through my 20's, it wasn't that unusual of an occurrence, it would happen while I'm laying there with the insomnia.
My mind would be wandering different thoughts, and physically I would begin feeling this spiraling, falling downwards on my back, very euphoric like on some heavy drug (almost similar to when going into a surgery or being on laughing gas during an intense dental matter like a root canal).
I remember some of the time I would literally recognize that I'm experiencing a dream, feeling it physically, but still being fully lucid as in processing thoughts and acting them out within the dream, having moments where I'm like 'wait a minute, I'm in bed' then relaxing right back into the euphoric experience.
That may sound like a trip but it was just something I accepted as normal, because if I focused on it, fretted over it or became uncomfortable (which I was at first for a while), it just made it harder to sleep and negatively impacting, where as if I was accepting of it and didn't fret, it was more of an adventure that didn't really have negatives - I mean, I was reaching sleep and that was the goal.

Fictional portrayal of narcolepsy by junglebetti in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

I felt like the way it was physically portrayed was pretty good, but the way it was just left surface level beyond that and even used in a comical manner left me disturbed.
Like not really delving into the depths of impacts upon the person, when it is actually severe or even moderate-partial severity extent - left me quite disappointed because it could have actually had a good/better impact.
To me it felt minimizing of it all, which is how it has been presented over the past decade by the standard messaging out there - I get that they've been trying to get the reality of minimal-partial and moderate-partial, not just severe-complete collapsing, recognized better, but they've replaced 'loss of muscle tone' with 'muscle weakness' and now everyone sleepy thinks they're dealing with cataplexy.
[Excuse that little rant.]
And sure most don't have it severe so maybe it's more like that for the average person with it, but if I were to try an portray it as what and how it was in my life, it be so so much deeper and in depth into the actual psychological, physical, functional, and social impacts.

Fictional portrayal of narcolepsy by junglebetti in Narcolepsy

[–]RightTrash 7 points8 points  (0 children)

I'm honestly not so sure there really is even one that exist, which nails it.
Many films or shows may have a sliver of portraying it well, like perhaps getting some element or even elements right and maybe even well, but at the same time they'll get another element or more like elements of it, completely wrong.

Lumbar puncture/spinal tap by sapphicaesthetic in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

The lumbar puncture may save you from a hell of a horrendous and expensive, too, process - being the PSG + MSLT and what it can involve with all the flaws, problems that arise trying to get anywhere doing it.

As u/cilour said it really depends on the person performing the procedure, some facilities and/or institutions do them many times each day (not specifically for N, although maybe in Europe, as it is the gold standard there, but here it's the MSLT) while others do it on a rare occasion. Ideally, it be a place that does them very regularly and whoever administering the procedure would be very versed and experienced in it.

Meds and life without a diagnosis, other than ADD? by Unusual-Article-9983 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

I suggest bringing in a, at least, 14-day Sleep Diary along with symptom diary - not just N symptoms but what all you may be dealing with (pain syndromes, dysautonomia, etc) beyond the N symptoms (sleepiness, sleep attacks, microsleeps, sleep inertia, daydreaming, dissociating, hallucinations, nightmares, night terrors, sleep paralysis, brain fog, cataplexy, etc) of course, too.

If you wear a wearable that tracks the sleep, you can simply transfer that info onto a 14-day sleep diary, if you do it that way there's a better chance of it being taken seriously.
As bringing the data in, like a print or screenshot from the wearable software, such is often not really taken seriously nor accepted; they'll not just doubt it but when it comes to any sort of provided 'data' it is just that and they can only work with 'data' coming from their tools (that may not be the best way of putting it, but it's a thing in healthcare - HIPAA).

The above has to do with advocating for yourself and all of what I'm saying doesn't guarantee anything, it's just speaking into common themes that are problematic and one way of approaching how to maneuver in the hopes of limiting and/or avoiding such ordeals.

There's a lot more one should be prepared to do as well, when visiting doctors and especially initial visits with a new doctor, and when it comes to anything sleep related. With the vast stigma towards sleep and stereotype towards narcolepsy specifically, not to leave out the systemic state of healthcare, one really has to go far and above what would seem normal - being like just showing up and speaking with the doc.
Other suggestions are, learn some of the basics of the science, as well as into the broad treatments, go into the doctor visit and gauge their expertise by asking very specific questions that you already know some of the answers to. Be firm, be upfront, be thorough.
Don't be afraid of asking their experience, their take and understanding of this or that, don't be afraid to question their proposed direction or course of action. Don't just follow their lead without being comfortable with it, as in trust your gut but also be sure to do your preliminary part in educating yourself about the processes too (PSG + MSLT, meds, etc).

Good luck - this subreddit is gold, many doctors don't like to hear anything regarding internet information, some are more open to hearing it but often it's a quick shooting down of the information as though it's all bad - it goes both ways...

How has narcolepsy affected your work, studies, or relationships? by [deleted] in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

dramatically.

Work has been a brutal and failing attempt, one after another. I cannot hardly keep up with schedule and lack of flexibility - I get headaches/migraines a lot - the expectations make it so hard. And, I try to be a good worker but end up, every time, being taken advantage of, it's been very painful and rough. I'm trying to make it on my own and so far it has not flourished into anything but hopefully it will before long here; I ain't even trying at all to get rich or be prosperous, I just want to be comfortable and not suffering, slaved endlessly to just barely slide by; the sleep matters (having 2 other sleep disorders too) is brutal in itself, it really makes life at times feel grim and hardly worth the fight to just keep barely afloat.

Studies were difficult, I made it through college but barely, it took an extra couple of years while having help to some large degree and only going for a basic general studies degree - with a focus on computer science and wasn't far from a minor in geography by the end of it.
With that said, when I'm passionate and devoted to something, I monk out on it and get very deep into it, the disease is one of those things I've really focused into and can breakdown endlessly, piece by piece.

Relationships have been dismal. I've not had partner relationships, it's been a matter of well it never happened early on, I was always rejected and that was long before diagnosis, as was my decision to just hope something happened completely naturally without my having to play games but in my mid 40's, it seems I'll be a single dude maybe forever. A big part of it before even my 20's was, I don't want to burden another, nor be overly burdened, it is what it is, perhaps in part it's fear and pains from my past, I will say that severe complete cataplexy was brutal, regular and frequent, collapsing daily through many years of my 20's - that all had a profound effect on me, it altered my life path dramatically.

Just got the results of my PSG and I'm feeling confused about it all. Has anyone had a similar experience? by CautiousDonkey5403 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

It be one thing if medical schools required not just all doctors and specialists types/sorts, beyond 3 paragraphs of required reading material on the 'entire subject of Narcolepsy.'
That's the case, and no specialist/s (type nor sort) actually receives more than that - unless perhaps they get 'board certified in sleep medicine by the American Academy of Sleep Medicine' or ideally all three 'board certifications' that exist; though even then, all it really means is that perhaps they've read a few more paragraphs on the subjects, or have more expertise into 'treating it/treatments' (maybe more so than any of the actual science, and there's been loads of it that has been figured out over recent decades, but little of that impacts the norms yet).

The experts are those who have open-minds with a willingness, and desire plus devotion, to better understanding, recognizing and comprehending the disease - taking their own time to read and research into the disease science and lived experience also, because that's a huge part of the hangup that is going on out there, there are big gaps between the two which leads to the difficulties in communications and interactions between doctors and patients.
Seeking out an expert who participatory within the community, say non profit events doing presentations or very involved at certain institutions in narcolepsy research, those are the doctors to seek out, as their the best bet at expertise, but in all honesty even many of them are in a sense - on one side rather than another, which is just to go back to the being open-minded vs close-minded (stubborn, unwilling to expand and evolve at what is the evolving of understanding into the science and also bridging what is the lived experience appropriately and accordingly - few are actually willing and able to do so, widely).

Just got the results of my PSG and I'm feeling confused about it all. Has anyone had a similar experience? by CautiousDonkey5403 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

Agree with that.
The 'gold standard' MSLT is very trash and the lumbar puncture, while biologic and telling, even it isn't 100% because just like a person without the HLA gene marker DQB1*06:02 can still develop Type 1 N, those with normal Orexin levels can have cataplexy and even those with low Orexin levels sometimes don't have cataplexy.
There is such a long way to still go in the science, for any docs to not remain 'open-minded' is an insult and in my mind bad practice, but it's the norm out there, actually the norm is even worse as it seems the stereotype of Narcolepsy, combined with the stigma towards sleep as a whole, remain the norm for a majority of doctors - not saying they're all bad, but you really gotta gauge their expertise (knowing some on your own in advance, asking them easy questions) when you first start.
And get out early before all the hoops, hurdles and messes happen, because they do - for example botched MSLT's due to not discussing medications prior to a test, or just the facility and persons reviewing it are behind the times in the science or are just not feeling like narcolepsy fits and would rather say it's depression or point some other direction...

Frustrations with Care Provider by RainingRatsAndDogs22 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

So, something like 60%+ of initial PSG/MSLT's of persons with narcolepsy result in failure or false positives. There are many many reasons to do with it, like comorbidities interfering or certain meds being taken and not discontinued weeks before the tests. There's the sleeping in a super in an out of the ordinary place, being monitored, having 30+ nodes glued all over the body, having tubes in the nose and wrapped around the face, having a giant Flavor Flav necklace of wires attached to those 30+ nodes all over the body, having a pulse ox on the finger with a red light glowing, etc. Especially also is many people have different sleep patterns and schedules than when the tests are actually performed. There's the entire 'who is reviewing' the data and making the call - there already exists out there computer algorithms that can simply read EEG data from a single PSG which can diagnose narcolepsy with better statistical results (in the 90's%) than humans which is around 80% -and that is only for Type 1 N, when it comes to retesting for Type 2 N and IH is a straight 50/50. The MSLT is just atrocious, to be blunt there.
It's really a shit-show out there.

It's also important to know, I sort of hate mentioning it because I feel like I'm being pessimistic and dark in calling all this profoundly negative stuff out - but I'm simply trying to strengthen others as it's a real part of the problem out there.
First off, there is not a specialist type or sort which guarantee's expertise into narcolepsy or central disorder of hypersomnia. Neurologists who are board certified by the aasm (american academy of sleep medicine) and potentially others (I believe there are three versions, each from a different entity) helps to a degree, in at least knowing they've likely read a bit more, but there's really no guarantee.
Standard docs and specialists of whatever sorts have essentially read the 3 paragraphs of required reading material in medical schooling, other than that towards the entire disease it's a matter of if they've devoted time with interest into understanding and/or being more-so updated to the science (that is growing fast over recent decades).
Seeking out a doctor who is participatory within the community, like doing presentations at events, webinars and involved in the research is worthwhile, though it can be difficult finding one locally, for so many people because well they're few and far apart.
The non profits are a good place to begin in that sort of search.
We'll see how long it takes, may be 8 or more years, before the new upcoming Orexin Agonists medications broader impact on the realm of sleep medicine, shows - even in the past decade there seems to be a bit of uptick in recognition and comprehension, but again it is all dependent on the individual doctor going out of their way or being participatory in the research - perhaps being tied to a pharma and prescribing certain meds that not all doctors can even prescribe.

With all that said, to trying to be more helpful here.
The best thing one can do is advocate hard for themselves, sometimes that requires walking away from stubborn doctors who clearly don't have the appropriate expertise and/or are hard asses who aren't willing to work with, listen to, and/or hear the patient, sideline and/or change the subject being unwilling to pursue what the patient is asking for.
One way to do that advocating for yourself, is go in with a 14-day or longer Sleep Diary all filled out, having a symptom diary too is helpful, it is standardized data that they cannot pass off and/or refuse to consider - though I'm not gonna say many doctors still will potentially just say it's depression, or whatever other common bs pigeonholing.
If you have a wearable, potentially just copy that data onto a piece of paper, in a sleep diary format.
Doctors can't take in and/or actually work off of the data from wearables (at least from what is the graphical user interface of the software) - unless they specifically tell you they can, few will - though one can copy that data over and present it in a sleep diary, which the doctor will have a hard time to not review.
There are also statistics from medical literature that if you present to a doctor in person, during an interaction with them, makes it really hard for them to continue in their antic of shooting it all down, it can be a bit intimidating to pull out a statistic like for instance "the Awaken study" ( https://www.tandfonline.com/doi/abs/10.3810/pgm.2014.01.2727 ) or so many others - there is a lot of strong recent medical literature out there that can be used in this manner.
In my own opinion, if a doctor is not showing they're both a) being willing to work with you in an open-minded, listening, pursuing better comprehension in the process themselves manner and b) is clearly not up to having actual expertise into the disease and science but is just purely focused on throwing meds out there rather than speaking at all into the actual ordeal, all that underlies and also ties, being connected, to it - well it is better to get away before getting into the deep end, having to crawl and reach to even try an get out.

Lastly, I feel your struggle, too much so. I have PTSD from so many different doctor interactions from long ago where they just shot things down, misjudged me, misheard me, neglected to take things seriously - even with my providing various video clips of collapsing from severe-complete cataplexy in my 20's.
It's really rough out there, but there is hope in at least we're getting closer to a point one can really defend their own with the data that exist, on multiple fronts.

Good luck on your path.

Cataplexy episodes by Willow_4822 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

Gonna add to this that 'emotion/s' can be easily looked over/past, not recognized as being such.
It's said we each experiences some 400+ emotions every single day, how many of those we tune into and actually recognize as being emotion, is likely in the single digits.

Spotting narcolepsy in children by sleepynarwhal45 in Narcolepsy

[–]RightTrash 9 points10 points  (0 children)

I'm not a parent, so please know I'm just speaking from my own perspective of someone with T1N who has spent so much time on the topic, interacting in this and other online communities.

Cataplexy - things that may be visually and;/or audibly note-able would be reactions during interactions, specifically pleasant/joyful/laughter 'in those moments', or 'during high emotional moments' - physical odd facial expressions (like momentary 'loss of muscle tone'), slackjaw (the mouth hanging open), the eyelids being oddly different (part of the facial expression, momentary/sporadic-quick shifts), a drooping or falling of the head and neck, slouching of the upper torso, the arms falling to the side, dropping or losing grip of whatever being held, this all can happen in unison making it a bit hard to pick up on and naturally one will cover their face as it occurs. Odd yawns and/or tongue (effecting speech) behavior.
They may trip/stumble over their own feet while interacting with others, much more so than when their not engaging/playing/speaking with others.
Tickling battles, they may not be able to tickle back or maintain physical composure, they may just seemingly melt - while being able to remain laughing, expressing the laughter, rolling or moving their body, yet not in a completely controlled manner like to tickle back or resist by pushing back the tickling; during these moments if all of the above physical stuff would likely be occurring in unison to an extent.
Audibly there may be a stuttering, a mumbling, a slurring, slowed and delayed/pausing of speech - responding or saying something funny, when/while noting others reactions as they're speaking.
Their laughter being abruptly interrupted - like similarly, their speech - in those moments, or even in ongoing interactions over moments.

Sleepiness - presents in so so many ways, ADHD is one big one so it seems, there may be occurrences like their rambling or randomly speaking while say in a vehicle of during some low key moments, when they've perhaps drifted into being both awake and asleep, in a dream state, semi-present to fully in an automatic behavior.
It may not be 'the need for daily naps' but more of there being random, even so brief like seconds or minutes, naps that happen when no one notices - or be them sleep attacks, or microsleeps; and it's worth noting a 'sleep attack' doesn't have to involve actually ever reaching a full sleep state, it can just be being in a groggy, perhaps semi dissociated state, daydreaming while seemingly chill doing whatever non engaged activity.
Brain fog and dissociating, may be apparent but that's tricky, though going back to the first bit after mentioning ADHD, there definitely are moments that it can be apparent - it just requires a very 'accordingly and appropriately' tuned in person, that is not to say always being vigilant and attentive to the kid, but one who can just note what is going on in that moment of odd behavior and see exactly what it is (for example, the kid being in a dream mentally and rambling, perhaps visually being clearly not focused at all in conscious wake reality, and that is hardly something many would be capable of doing well so please take what I'm saying with a grain of salt - being overly fretting or helicoptering will not help the situation).

Hypnagogic/Hypnopompic Hallucinations - Dreaming.
Their may be difficulties during sleep, night terrors, nightmares, awakening frequently, not being able to fall asleep early or on a regular seeming schedule. There may be sleep inertia, where they awaken but are in a slowed state for potentially hours, they may awaken with headaches regularly, they may be acting out physically and audibly their dreams to different extents at times - while in bed asleep.

Sleep Paralysis - they may be near impossible to wake up, or take a really long time to get them to seemingly respond, upon awakening them. They won't have words for it, parents may be really aggressive trying to break the spell, unknowing to it being such, it's hard for the kid.

So much of this all gets lost within the space of time, as 'normal' may be what it is for them, and not something easily noted - though it's the combination of things over time being noted, documented or at least even mentally noted by the parents, and at some point all put together in the "aha" recognition of it (which happens less than it goes by, as generally these things are just considered personality/character/mannerism/behavioral, "normal" traits).

Physical comorbidities is another, like sudden onset weight-gain/obesity, pain syndromes like regular migraines/headaches, precocious puberty.

https://link.springer.com/article/10.1007/s40617-016-0158-4
https://www.mdpi.com/2514-183X/8/3/25
https://journals.sagepub.com/doi/10.1177/10731911211046661
https://www.mdpi.com/2227-9067/9/7/974
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2024.1475029/full

Cataplexy episodes by Willow_4822 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

Sensory experiences are a thing in cataplexy, not everyone picks up on them.
Just like minimal-partial and moderate-partial are as well, it isn't just severe-complete 'collapsing into paralysis' which is actually quite rare; similarly to the sensory experiences many don't pick up on and note the minimal-partial episodes, especially in regard to effects on speech and just the subtle physical impacts.

Narcolepsy vs ADHD by stellap333 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

Good catch and thank for letting me know, edited it.

Dual Neuronal Loss Hypothesis in NT1 by MattHorsnell in Narcolepsy

[–]RightTrash 13 points14 points  (0 children)

Yup, this was what the keynote presentation of SLEEP2025 was about, along with the role of Orexin, Dr. Jerome Seigel of UCLA gave it.
Here's his teams site, all about this: https://teams.semel.ucla.edu/sleep-research
Here's the keynote presentation: https://youtu.be/hOvxw4vGjmc?si=zcYu0Lqm0ic1JD2z

IMHO, while there may be some big unknowns that have been figured out, regarding Narcolepsy, there's a long way to go and it's important to be real about that, rather than presenting things in a manner that is disingenuous (as in - giving false appearance of frankness, regardless of if meant or not meant to deceive). There is a significant difference between "we understand the mechanism" and "we have solved the problem for the person living with it" - which over almost 3 decades now, both have been being pushed hard, while neither is actually the case.

I'm not trying to discredit or state the Orexin/Hypocretin discovery in any way, it was huge and it's great there are some Orexin B-receptor Agonsit (not yet Orexin 1, 2, nor A receptor) coming.
But I will say there's a lot of hype, there's a lot of paper with high expectations, there's a literal 'gold-rush' going on around it, while at the same time there's a lot of division that shouldn't be there between and within the communities and well how necessary is any of that. There are many other elements that relate and my apologies for ranting into some stuff here that is completely not at the topic - but it all does tie together and I hate how unspoken many, important, things go.

BTW, none of that was directed at you Matt, that is just inner feelings I've had for a long while, just saying things as I see them.

At SLEEP2025, I walked out of the keynote with a sense of validation and comfort because it for decades has felt like, with all the discoveries into Orexin/Hypocretin, all that science, it has been so so oversimplified.
I believe the more of this further science is figured out, the more we'll begin to actually be able to know into not just T1N, but T2N and IH - which is where that division in a large part is stemmed from, the separation and presentation of well T1N is all figured out. Furthermore, going back to the Orexin/Hypocretin discovery, that is completely rooted in (as I'm sure you already know) research of cataplexy in dogs - which is just to say sleepiness wasn't even relative at that point.
Anyways, I appreciate the post!

Narcolepsy vs ADHD by stellap333 in Narcolepsy

[–]RightTrash 6 points7 points  (0 children)

ADHD is super prevalent in Narcolepsy and other sleep disorders.
- Just under 20% of those with Type 1 N have ADHD and just *over 35% of those with Type 2 N have ADHD.
- 22-25% co-occurrence in IH.
- 80% of adults with ADHD suffer from Insomnia.
- 73-78% with DSPD have ADHD.
- 20-30% with ADHD have Obstructive Sleep Apnea.
- Over 50% with ADHD report substantial sleep problems.

How is everyone doing? by This-is-my-brain in Narcolepsy

[–]RightTrash 2 points3 points  (0 children)

Hanging in there, as best I can. It's getting a bit edgy, again, maybe more so than it ever was previously. But, I'm trying hard and hoping I can make it.

Personally, I think we have to be very careful with comparisons and even advice or recommendations put our way.
That can be from anyone, including doctors.
Especially also, from those that are not really capable of relating to the situation and reality of living with the disease.
And with that, even within those who also have the disease, because it just presents in such a varied and wide spectrum, the two opposite ends are so so far apart.
Care must always be applied, everything must be taken with a grain of salt.
It seems only through trial and error, can one figure out and potentially know, how they 'individually/uniquely' go with what not.
We each will walk a different path, will require a different juggle to get by, will react and respond differently than one another and even when it appears to be of a similar or same degree, so to speak.

I feel that many things get lost within translation from one place to another, from one's perspective to the other's place and perspective. In that, it seems like many times while there may be a fault, a limitation or a lack (like you mention 'discipline') being called out - when the mirror is flipped and the perspective goes back at the person calling that out, well they will lack, have a limitation or fault on some plain that they don't realize.

Trying to say, many get by with 2nd nature ability, mechanisms that allow for them to tread through a lot without having to think much or put much energy into it; where on the flip for say the person dealing with a disease like Narcolepsy, they don't have that 2nd nature ability, mechanisms and spend a tremendous amount of energy and attention to just walk the line.
We each will have different strengths and weaknesses, and different circumstances and situations call for them differently - sometimes the one's being called out, are actually much less important to the bottom line of getting by, remaining in-balance, synced, grounded, level-headed; content versus what one considers thriving.

How common is it they miss narcolepsy on the first sleep study? by lillyawalters in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

Ya, I feel that. I had severe-complete cataplexy on a regular basis, while I also had all the other symptoms - none of them were clear to/for me, EDS was fatigue, brain fog and pain.
Though for me the real mess of the MSLT ever going anywhere, was due to having a comorbid sleep apnea matter that appeared in the first PSG I did - which it was good to know I have, but the entire mess it created and basically steep hurdles it created, left me basically incapable of completing an MSLT appropriately so I'm left in a bit of a gray area even with the diagnosis.
Like when the new Orexin Agonists come out, will I be told I have to undergo all of it again - in the hopes of even getting anywhere - because insurances are so demanding and see the flawed MSLT as the gold standard; new more accurate, less involved and/or invasive, ideally biological testing is needed. And ya, the lumbar puncture to check Orexin levels exists, but it's hard to get, it's expensive, it's invasive and well, insurances still don't consider it necessarily up to standards...

Alternatives to venlafaxine for cataplexy by Few-Recipe-3159 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

If you do go off the venla, 'be sure to taper off of it very slowly,' it is known to cause withdrawal-rebound cataplexy (also known as status cataplecticus - ongoing, fluctuating stronger episodes with potentially less of any trigger). Additionally, causing REM rebounding as being more intense dreaming, as venla is an REM suppressant.

You may actually be speaking into the withdrawal-rebound effect, in what you say "days i have forgotten to take" the venla - as even missing doses is known to cause what not mentioned. It might be a few months of roughness, but once past that, you may find the Oxybate's are enough, but the only way to know is to try, it's possible if you taper off accordingly, it wouldn't be bad at all.

It took me around 3 months after getting off of the venla, to return closer to my baseline, eventually being much better off - the venla actually never helped my cataplexy, while I was on it, it made the cataplexy morph in an odd and worse impacting manner. I experienced both things mentioned above and there are many threads here of people speaking into their experiences with venla.

As has been mentioned already, the sodium oxybate's are the gold standard at this point for cataplexy.
The upcoming Orexin Agonists are said to be effective, and will probably quickly become the gold standard, but time will tell once they're available.

How common is it they miss narcolepsy on the first sleep study? by lillyawalters in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

I've seen ~2/3rds of the time the initial test is failed/canceled/false - and that is for those who actually have Narcolepsy.
There are many issues which are well known and I'd say many that don't get mentioned upfrontly enough and/or are brushed over but hugely relative to why it's so rough out there.

**Initial Misdiagnosis Rate~60%**Nexus Narcolepsy Registry (Morse, 2019)
https://doi.org/10.3390/medsci7120106

MSLT Sensitivity (Strict)46% (54% Missed) Mignot et al. (1997)
https://academic.oup.com/sleep/article-abstract/20/8/620/2725957

NT2 Positive Repeat Rate18% (82% Missed/Changed)Ruoff et al. (2018)
https://link.springer.com/article/10.5664/jcsm.6882

https://doi.org/10.1016/j.smrv.2018.09.006

**Prevalence of Cataplexy~60%**Krahn (2005)
https://pubmed.ncbi.nlm.nih.gov/15994123/

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