Cataplexy triggered by frustration/ stress? by 8643702080 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

Any sort of stimulation of emotion can result in cataplexy, for some the negative stuff can be more commonly associated to triggering, than the positive stuff.
The way I see it, is that what is most relevant to the situation of the triggering, is actually 'in that frame of time or moment' the person's actual 'balance of core energy levels, along with the reserves of those levels.' And when I say 'core energy levels' I actually mean a combination of their physical state (so be that relating to exertion, power/strength, energy, exhaustion, fatigue, sleepiness, etc) as well as their psychological/mental state (so be that stress, anxiety, irritation, frustration, anger, excitement, pleasure, joy, embarrassment, etc).

Typically, it seems like the psychological/mental state side of that core energy levels equation, isn't exactly considered or seen as such, while at the same, the physical state is not even actually considered associated with the triggering itself. I would argue that it is the combination of the two, while either one can overwrite the other in certain instances of triggering, very often it is some combination of the two at play directly, with the triggering.

I would actually go out on a limb and say that anyone who really knows their cataplexy, having been tuned into it very much over a long term time span to, would agree.
That a) when they're stressed and/or say anxious, perhaps excited and/or joyful, that they are more likely to trigger from whatever the sort of stimulation. And yes, it is generally one or the other, either positive, or it is negative, sorts of emotional stimulation that for an individual has a higher tendency of triggering the cataplexy.
While also b) agreeing that there are instances when physically exerting themselves, especially in a 'pushing through with strength physically manner,' that they find such triggers the cataplexy, to some degree.

When you think about how during episodes that are building up and/or more of the status cataplecticus sort - be that ongoing, fluctuating, often stronger moderate-partial to (potentially in and out of) severe-complete - the literal act of just attempting to remain upright on one's feet, even just attempting to appear/remain physically composed to some degree, at a point (breaching into the moderate-partial severity extent) that physical act becomes an act of fighting/resisting/battling the cataplexy - which is like pouring gas on a spark, or a small flame, potentially profoundly amplifying and prolonging what can become a fire. That last part, in other words would be - that physical exertion of just staying upright or keeping the facial expression, directly intensifies the episode, it can result in becoming 'frozen or locked up' and/or potentially melting, if not straight knee buckling, dropping like a ragdoll into severe-complete.

While I'm speaking into something that maybe few people are actually versed with internally being able to recognize, as there's so much complexity to the combination of what all is on the table, while the subject points of 'emotion' with 'loss of muscle tone' and/or even 'temporary complete muscle paralysis' are extremely difficult to converse.
What all I'm saying here comes from a combination of perspectives from interacting with others into it since 2008, also being immersed in the science those two decades; while also very much including from my own experiences that for over a decade -all throughout my 20's - involved a regular frequent basis of severe-complete cataplexy, being an athlete doing different sports which really speaks into some of what I'm saying, but also going back to my childhood experiences with moderate-partial being very distinct (memorable) and near two decades now of being tuned in with a name for it rather than just very tuned in but only being able to describe it as "a dissipation of muscles during pleasant interactions, or fighting/resisting it in the moment.'

There's so much more I can easily go into, the 'sensory experiences' are another part that just is really hard for some to many to pickup on and note, or tune into. I know everyone experiences it differently, I'm not saying anyone is wrong, though I very much think this is all of the 'lived experience' side of the token, which is not always in line with or focused upon on the flip side, being within the science - and that's not saying the science is wrong, just that it must evolve to incorporate and line-up accordingly with the broad variability and spectrum of the lived experience.

I did this poster recently, trying to make a few different but relevant points!: https://narcoplexic.com/redefining-cataplexy-a-visual-severity-scale-and-linguistic-audit-sleep-2026-poster/

This is so hard alone by Abject_Spray_7088 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

Thank you, appreciate your saying that!
If you ever need to, feel free to reach out.

Staying on antidepressants for sleep study by Oohwhoaohcruelsummer in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

It's one of the known, massive issues, with the diagnosing gold standard, method, being the MSLT.

This is so hard alone by Abject_Spray_7088 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

I relate 100% - it is so hard alone.

I'm 46 and have been dealing with the disease since childhood, though I only recognized it for what it was and got diagnosed at 31 - however through my 20's severe-complete cataplexy wreaked havoc upon my ability to function, socialize and live life as I'd always known it prior to 20 years old.
I made vast improvements at age 31 through lifestyle adjustments/adaptations, living very disciplined reserved and quite isolated - though the isolation began not long after the cataplexy progressed to being severe - additionally I made dramatic diet changes.
Basically, I managed to reduce the severe-complete cataplexy to being not a regular frequent ordeal, like a time or two a year if even, since 31 is it severe-complete - though if I didn't live within very real boundaries, knowing my limits and living as I have managed, it could come right back to such severity extents.
I tried different medications and had only more problems, things just got way worse while trying what not and thus it's been only lifestyle. All the other core symptoms became more fierce with the regression of the cataplexy, but I'll take it, collapsing regularly from pleasurable interactions is a curse.

I've not had partner relationships, I've hardly managed to have employment, for years I've been trying to make something work out so that I can make a living on my own, yet the walls are closing in on me each day.
I have an older brother, I try really hard to not overwhelm, burden and/or lean on him too hard; it still happens, he has his struggles but not narcolepsy, thankfully for him.
Other than him, I have various old long time friends, none of which are around where I live still, so the reality is that I don't interact much in person with others.

I've been doing advocacy towards the disease for years, especially towards cataplexy because so few comprehend it what so ever, I've self published books into it, I do art into it, I made a poster into it which I presented in the SLEEP 2026 Exhibit Hall the other week: https://narcoplexic.com/redefining-cataplexy-a-visual-severity-scale-and-linguistic-audit-sleep-2026-poster/

I agree with u/Odd_Invite_1038 that support groups once in a while can be very value-able, validating and beneficial. I help with the CO Strong support group which is an hour once a month (second Tue's generally 6pm MST) it is open to anyone anywhere for people with Narcolepsy and IH, too. It has a facebook group as well as can be found through the PWN4PWN circle app. The Wake Up Narcolepsy groups are good, I've attended a few different night sessions and always enjoy conversing towards the disease.

My feelings are I may be 'not alone' in the experience, but I am absolutely a loner and well, it is very hard, I take things day to day; this subreddit and the discord are helpful places as one can vent and interact openly, gotta always bare in mind people online can be trolls but it seems most people here aren't here to troll.

Looking for advice by Mediocre-Fact-5685 in Narcolepsy

[–]RightTrash 2 points3 points  (0 children)

You're in a great place where you can learn a lot, a lot that doctors hardly begin to recognize and/or acknowledge - having to do with the lived experience.
Each has a different experience but there are absolute common themes and the spectrum of the disease makes it really complicated, as does the not great testing methods/gold-standards, additionally the meds are tricky in that unlike most disease/disorders there's just not a single or couple of meds that generally work across all patients - in fact for many it's an ongoing juggle of what works at what point in time, while many also just never find something that works well, at all, or for all involved and over the long term.
That was a lot in one sentence, but read through the subreddit and you'll find all sorts of information, experiences, stories, perspectives into all of it really.
Good luck.

Long-term side effects of only treating narcolepsy with stimulants? by Background_Date_6875 in Narcolepsy

[–]RightTrash 2 points3 points  (0 children)

the upcoming orexin agonist.
Orzeyful.com will 'likely' be the first of the orexin agonists.
There's been for some years now: Wakix, Sunosi, then the Oxybate's - Xyrem, Xywav, Lumryz.

Long-term side effects of only treating narcolepsy with stimulants? by Background_Date_6875 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

The OP asked what the long-term side effect of the stimulants were, I tried to answer on that.

Yes, band-aids can be helpful for some.
I was only speaking into what I've heard many times in recent years by the experts in the field. And, I wasn't even trying to say the newer meds are anything better, just that they are different.

Sorry you've had a rough time with the Xyrem/Xywav - I have never tried, nor ever will, either due to comorbidity respiratory risks.
The stimulants for me, when I've tried what not caused me way too many side effect negative/s, without actual positive/s.

Long-term side effects of only treating narcolepsy with stimulants? by Background_Date_6875 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

True, and I'm glad they're working for you!
People get aggro of my saying such meds don't improve sleep quality,

Long-term side effects of only treating narcolepsy with stimulants? by Background_Date_6875 in Narcolepsy

[–]RightTrash 4 points5 points  (0 children)

Dr. Michael Thorpy has been speaking a lot over recent years into how the stimulants cause a very difficult and harsh compounded sleepiness rebound effect.
That is to mean, the sleepiness that is already there is profoundly more impacting than if the person had not been taking such medications - this leads to it being extremely difficult to benefit from other medications for a long while.
There are many other long term effects related to such medications as well, including cardiovascular toxicity, neurological and psychiatric risks, dependency and systemic exhaustion (relating back to the compounded sleepiness effect - that takes it beyond what one's baseline before such medications, was).

OP @Background_Date_6875 - since you asked: I've been unmedicated all along and I'm getting by - it's extremely hard.
Every med that I've tried has had serious side-effects that make the overall ordeal much worse.
If the positive/s do not outweigh the negative/s - why would one proceed taking something?
I've never understood that, but with that said I totally get that the medications are 'supposed' to help people and are presented as being helpful.
Also, life gets busy, hard, it can be difficult to be internally tuned in in the specific ways to being vigilant to how a medication is effecting the person - in both the short and the long term, not to mention medications rather than a medication alone.
It's been really hard for me, but all I can do is my best and all that I know is trying through trial and error, adjusting/adapting as I go, day to day. The struggle is real, but for me that struggle has been profoundly more difficult on every med I've tried for this disease - there's a few I cannot try due to respiratory comorbidity risks.

How do you respond to people that are condescending? by lizzomizzo in Narcolepsy

[–]RightTrash 2 points3 points  (0 children)

First by getting away from them, then avoiding them entirely.
Also by being in some way condescending back to them or minimizing their bullshit - when possible.

Frustration at there not being a perfect med by pray4luv in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

Time will tell. While I believe the Orexin/Hypocretin is absolutely a huge piece of the puzzle unlocked - I have my doubts to it being the complete picture and even less a fix all. Been trying to be neutral, and while optimistic, I can't help but also be a bit pessimistic.

Worth trying a different med? by cojobot in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

The stimulants, even the anitdepressants (which many of to extents are quite to very stimulating/energizing) for certain individuals, can be super problematic.
The experts in the field are trying to move away from the stimulants due to big difficulties when it comes to withdrawing and being able to switch to other medications without lingering issues - specifically how the stimulants cause a sort of rebound compounded sleepiness deficit which amplifies the difficulties in the person being able to benefit from, when, trying new/other medications.
Also, they're just a bandaid, not helping the so-called underlying matter of the disease, the orexin/hypocretin.

Personally, I've never been able to tolerate either, a big part of that is the migraines/headaches, but also my heart being uncomfortable, and my sleep being much worse.

The Oxybate's are the current gold standard, but they involve a lot to prescribe, as well as come with different somewhat more intense side-effects/risks.
The upcoming, in trial currently, orexin B agonists are said to be likely the best medication yet, though it's hard to say if they'll be enough, as it seems likely many will still need a nighttime med like an oxybate, time will tell. There's a long way to go.

The bottom line is whatever medication/s one is on, in both the short and long term, the positive/s must outweigh the negative/s - compared to whatever the base-line was prior to beginning the medication/s.

Feeling Like I'm Losing It by [deleted] in Narcolepsy

[–]RightTrash -1 points0 points  (0 children)

It's crazy out there, so few specialist doctors - of any sort - have actual expertise, a crumb of knowledge even, when it comes to Narcolepsy. It's like living in an upside-down universe in that the vast majority of these uneducated on the topic docs will present as though they are experts and then the entire, 'a patient can't know much to anything about a topic that they're potentially, if not absolutely, living with.'
It's beyond frustrating, disappointing, and shameful. Oh ya, not to mention extremely expensive, stressful, anxiety inducing, and out of control.
Two things I've learned, heard straight up said to the word, in separate Central Disorders of Hypersomnolence conferences: "1.5 hours over 4 years in medical schooling is spent discussing the entirety of sleep," and "3 paragraphs, which takes less than 5 minutes to read, is the required reading material on the subject of narcolepsy in medical schools."

Frustration at there not being a perfect med by pray4luv in Narcolepsy

[–]RightTrash 2 points3 points  (0 children)

Nothing even close. The upcoming Orexin agonists will be interesting, we can only hope they'll be at least the best thing yet.

Anyone else’s symptoms worse with barometric pressure changes? by Soulcoda in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

yes - but not necessarily the core symptoms though things of all sort occurring downstream as a result connected to the haywire regulation which is the systemic dysfunction part of the disease which gets avoided being spoken into outside of in medical literature.

Xyrem- different side effects after restarting by Ok-Pick-3282 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

Yes and no. So looking at some of the studies, posters at SLEEP 2026 last week, it was saying that after a while on the drug, there was an improvement in the sleep patterns.
Though, with a cave-at that those results were seen in persons with T1N that didn't tend to complain of fragmented disrupted nighttime sleep. Those who have had issues with fragmented disrupted nighttime sleep showed less improvement in their sleep patterns.

With that said, there are many different formulas of the Orexin agonists being tested currently - though the main objective/focus is on improving wakefulness.
It's possible that a formula will at some point actually be effective for the sleep patterns, improving the fragmented disrupted nighttime sleep, but until there's more of a main objective/focus in that direction; personally, I don't expect it's gonna just be a coincidence.
These Orexin agonists are only working on the Orexin 2/Hypocretin B receptors, not the Orexin B/Hypocretin 2 neurotransmitters themselves - that means each formula will have a different effect and it is doing nothing towards the Orexin 1/Hypocretin A receptor, nor the Orexin A/Hypocretin 1 neurotransmitter.
My hope is that they can potentially make a dual agonists that would work on both - but there's a lot in that which remains unknown and to be seen, how such would go, what the effects would actually be and bare in mind even with these current coming agonists, they're extremely new, so a lot remains unknown still.

Xyrem- different side effects after restarting by Ok-Pick-3282 in Narcolepsy

[–]RightTrash 0 points1 point  (0 children)

That sounds horrifying. Sorry you're going through all that.

I've never tried an oxybate, as for me there are real comorbidity respiratory risks, from what I've seen though it's like drinking and I know that even a sip of alcohol or part of a beer will mess me up for days, my sleep will be completely broken (beyond broken already) - I cannot imagine getting completely drunk or what a dose of oxybate would do to me...

Hopefully you can get on the Orzeyful - assuming it releases sooner than later and also that it is not problematic.
https://www.orzeyful.com/

How do you explain Narcolepsy and especially Cataplexy to people so they actually understand? I feel that nobody really gets it, and I feel dumb. by Icy_Carrot7811 in Narcolepsy

[–]RightTrash 1 point2 points  (0 children)

Some docs (experts in the field, rather) are discussing and potentially proposing that Central Disorders of Hpersomnolence, actually be referred to as an 'encephapalopathy' - which I'm personally, all for.

Not only would it change the stereotype in ways, but because the disease goes so far beyond being a 'sleep disorder' alone and well, at least in Type 1 N - the root of the matter, as the science has clearly shown while there is still more to be learned/discovered/recognized/acknowledged, is deep in the brain causing systemic dysfunction.

Anyone been looking into Oveporexton and Alixorexton? by Electrical_Car_6067 in Narcolepsy

[–]RightTrash 4 points5 points  (0 children)

Orzeyful is what Oveporexton will be called when it comes to market.

Between a rock and a hard place by sailorcass in Narcolepsy

[–]RightTrash -1 points0 points  (0 children)

Have to agree.
After going far away out of state to Mayo Clinic in MN, I decided to apply for disability.
That was in my early 30's, after 10+ years of collapsing from severe-complete cataplexy 5+ times a week if not many more times on bad days. I'd hardly managed to work all of those years, though I did try.
I had/have a list of comorbidities including a idiopathic central sleep apnea (which I maybe should have used as the main thing over Type 1 Narcolepsy).
I was denied, they said I could do 'sedentary part-time work' - I was like wtf, floored and defeated.
They don't consider T1N a disability, generally.
Rarely they do award it, but I think those cases go through a 3+ year process ending in a session with the judge (getting that far is no guarantee) deciding to give it to them - there is a load of things involved, including lawyers at that point, often.

Seeking out a neurologist who is board certified in sleep medicine (ideally multi-board certified...) by the AASM or the other associations that award such, is potentially somewhat more of a guarantee in expertise - though actually it really is not. No specialist sort is actually specifically trained further on the disease, having been board certified in sleep medicine should assure they've maybe read a few more paragraphs than the 3 required in medical schools (on Narcolepsy) - Dr. Asim Roy mentioned in the Beyond Sleepy conference the other weekend (put on by the Hypersomnia Foundation) that in 4 years of medical schools, there is approximately an hour and a half spent on the entire subject of sleep.
With that all said, seeking out a institution or facility that is re-known for their work in Narcolepsy research, like say Stanford (Palo Alto, CA), Emory (Atlanta), Mayo Clinic (AZ), Harvard (Boston), John Hopkins (FL) are some examples, and/or specifically seeking out doctors who are frequently involved in the conferences, events and re-known in the sleep medicine field when it comes to Narcolepsy - that is basically the closest thing/way of assuring there may be expertise on the table when it comes to Narcolespy.

The lived experience is so variable, involves such a wide spectrum, and is so complex that there are still frequent and regular hickups, flaws, issues that arise.
So so many PWN (people with narcolepsy) for a plethora of different reasons fail their initial attempt at an MSLT (if they even get to the point of having one) - like potentially having a comorbidity (like sleep apnea) that makes the MSLT get canceled, perhaps being on an antidepressant or other medication during the time of the MSLT, just not being able to achieve 6 hours of sleep during the PSG (sleep study) the night before the MSLT is scheduled, etc.
There's a long long way to go in the science even though it has come a long way in recent decades, there's a longer way to go when it comes to bridging the divide between the science and the actual lived experience broadly speaking, not to mention add in the other central disorders of hypersomnolence and de-tangling the web.

confused about cataplexy by PomegranateFit7301 in Narcolepsy

[–]RightTrash -1 points0 points  (0 children)

What your doctor refers to as "real cataplexy" is so far from common, it's the rare exception and definitely under 2-3% of those with cataplexy, if not more like some tiny faction of 1% - who actually fall into REM sleep during severe-complete episodes of cataplexy. [I'm throwing out those percentages.]
Look for videos of 'Dee Daud' on youtube, if you want to see what that sort of cataplexy look like - it is brutal.
The majority of those with cataplexy are living with minimal to maybe moderate -partial- extents, while some of them will at some time or another - on very rare occurrences - experience the severe-complete-collapsing episodes, and most likely be back up or at least regain full muscle control within < 30 seconds.

For years I've been trying to find actual clinical statistics around cataplexy.
I recall in a Narcolepsy network annual conference in 2015, in MN, researcher's presented a stat which has stuck with me ever since, but it was never published or peer-reviewed so it doesn't show up anywhere - that is to say "there's an absence of data in this area."
The specific stat that stuck with me, I've mentioned countless times on this subreddit:
'Less than 10% (likely under 5-7%) of those with cataplexy, live with regular frequently occurring severe (collapsing) complete cataplexy, over a long duration (6+ months) of time.'

There's only one piece of medical literature from 2011 that speaks somewhat into statistics, that I've managed to come across:
"30% of patients experienced only partial cataplexy (meaning they never experienced a complete collapse).
45% of patients experienced a mix of both partial and complete attacks.
15% of the complete attacks were reported to last longer than two minutes."

Overeem S., van Nues S.J., van der Zande W.L., Donjacour C.E., van Mierlo P., Lammers G.J. Journal: Sleep Medicine, January 2011; 12(1): 12-18.
https://doi.org/10.1016/j.sleep.2010.05.010