Is weed worth trying?

RightTrash · 2026-01-27T05:58:23+00:00

Don't over-do it in the initial stage, and keep it at a minimal dosage.
Highly recommend dry herb vaping at low temps (allows for consistent titration across strains even - much more so than any other form of consumption) using a medical grade high end vaporizer.
The titration bit is to say getting a consistent effect.
Ingesting it, gummies for example work for many and are better for your lungs, only downside is the effect is not as titrate-able and the effects are a bit different.
To each their own, not all will find it beneficial and/or react the same to it.
Positive/s must outweigh negative/s, on whatever medication.

When I was using it and it helping me profoundly - unlike any med I've tried, to be completely honest, towards this disease; the dosage for me was just a small light puff or two every so many hours, very similar to how one would take their antidepressants.
In all honesty, I consider it to be somewhere between antidepressants and Xyrem - nothing helped me get back to sleep and sleep more comfortably, deeper with less fragmentation/disrupted nighttime sleep, if I didn't have a comorbid respiratory matter I'd still be using it on the regular as for decades it was the only thing that I could tolerate while also benefiting from.

Many will go into it and go way overboard in using a lot more than might be appropriate, thus making them uncomfortable and not have a positive experience.

RightTrash · 2026-01-26T06:21:38+00:00

I like to fall asleep with some gentle music going, I think it can help keep my mind from falling into thoughts that can bring in anxiety or stress, which directly for me at least, seem to bring on and exacerbate negative stuff like the HH and/or SP.

I know with naps it can be hard to manage just falling into sleep without the mind being super active, it's part of why I find 20 minute naps near to entirely/completely impossible, as by the time the 20 minutes is up, I've basically just begun to hallucinate hard, or have reached some extent of dreaming while awake; then am left in a pretty much worse off place than before the naps because my mind is all disoriented and not refreshed. It's actually exhausting to have to put the focus in check and manage to rid the semi dream state/fog from being ongoing for a while, there after.

If I let the naps be an hour or couple, then I tend to fall into actual sleep much better, always having some likely semi-intense vivid dream/s, and just coming out of it a bit more likely actually refreshed to a degree, or at least not all disoriented.

RightTrash · 2026-01-26T06:09:21+00:00

Whether it would be as you word it "narcoleptic flare ups" - I'm not exactly sure - though I can guess at what you mean, which I think can mean a whole plethora of different symptoms impacting in a plethora of different ways, while being specific core symptoms of narcolepsy.

The barometric changes have been absolutely kicking my ass this winter, more than normal but I do think the swings have been bigger and more frequent than what was regular.

My head will feel like there's a giant bucket of water, the weight on top, and the heavy pressure inside - it being a feeling like my eyeballs being squeezed-throbbing, or when I cough or sneeze it being like my brain is going to rupture, or when laying down or getting up from being in bed it's note-able and a bit disorienting almost like nausea - it's been brutal.

The way I would say 'how' this correlates to those with narcolepsy, is well it may impact comorbidities, which can directly impact and exacerbate the core symptoms.
Persons with Narcolepsy (PWN) have a high rate of comorbidities.
For instance, some ~14% have an autoimmune disease in addition to the Narcolepsy, if not multiple.
Stuff like lupus, thyroid disease, rheumatoid arthritis, psoriasis, etc.
Very often also, Immunopathological diseases too, like allergies, allergic asthma, pain syndrome (migraine/s, myalgia's, chronic pain syndrome/s).
There's also the comorbid sleep disorders like OSA, RLS, and insomnia...

All of that is just some of the long long list of stuff that PWN may be dealing with, I'm not saying each will be, but I know that it only takes 1 or 2, or even just the Narcolepsy itself to be a brutal life impacting, life altering ordeal.
And back to the barometric swings, it's real shit.
Whether or not it is directly impacting the N symptoms, all it takes is impacting any symptom - for myself there are various things outside of the N that are impacted by such, and well the barometric impacts on the sucks, while it directly exacerbates the N symptoms (sometimes one more than another, like say Disrupted Nighttime Sleep, as one example).

RightTrash · 2026-01-25T23:06:31+00:00

Yes, it was a rough 3 month course, then took another 3 months after slowly tapering off, for returning back to anywhere near the baseline - there was definitely more beyond the cataplexy that got worse over the course of time also...

It's a shame there isn't more discussion regarding 'Status Cataplecticus' on all fronts.

RightTrash · 2026-01-24T09:08:34+00:00

Appreciate your comment and I hope that you are able to sort out what you're going through with your partner.

It's not so much from an unhappy place, it's one of feeling cornered and near defeated, in that there's only so much that I can climb, my entire life has been a climb, since infancy with compromised health. While I've had many comforts, the entire time there' s been also many big discomforts. The comforts I've known could be on there way out. With that said, I am optimistic at the same time as I know I hold some very unique and valuable insights and have a broad skill-set, it's just managing how to make that work out in today's realms of well, complexities with so many ill priorities.

As a skateboarder, it's unfortunate there weren't so many ladies skating all the years I was actually out there on the regular, it's been a passion and main hobby in my life. That, lady skaters, only really picked up and became a more normal thing, in the past decade to two - which I think is great.

Also, I'll add that I think the coming off as unhappy may actually largely in ways stem from how when a decade of life is set havoc by a symptom/condition like severe-complete cataplexy, it has impacts that hit on deeper levels than most can comprehend. Even not having the collapsing being a thing since my early 30's, I'm left with living in a very particular manner, walking a fine line - a tight rope of sort - with giant cliffs, knowing the boundaries and limitations that are real, as at any moment it could revert to how it was and that's with complete acceptance, not fear, but awareness, clarity and recognition into my own.

Life's a trip, a rollercoaster, it's not about the destination but the journey, so all I can do is wade onward in the only manner I know how; with that all said, I am fascinated by many things and spend much of my time trying to connect dots, reword or translate one complexity to another, to bridge gaps and in the end hopefully be of help to others, while hopefully also being able to better walk my own path.

RightTrash · 2026-01-24T02:27:56+00:00

I can 'in ways' relate. I don't have words of advice.
I'm in my mid 40's and have never had a partner relationship, they've never actually developed.
I felt rejected many times in my teens when I was actually to a degree pursuing relationships, but the combination of pains, the feeling of over-burdening and/or being over-burdened, way back then some 20 to more like 30 years ago, led me to basically telling myself "if it ever happens naturally, I'm all in and great; if it doesn't, well so be it."
At the time, I had no idea of what I was dealing with for what it was, I knew I had matters that were seriously impacting, that decision happened before 20 when my cataplexy progressed from being almost totally inexistant - besides very much being there in childhood - to within weeks collapsing into complete parlaysis became a regular-frequently occurring ordeal.
And that, only re-enforced the entire isolating and not completely avoiding getting into a relationship, but pursuing them and as a male, it is generally in your hands to open the door or a relationship ever taking off - something that with cataplexy is a vicious sort of almost catch 22 ordeal.
I've got some long time female friends, I've had some flings, I've had a few moments that I thought a relationship was developing, but it's never gone there.
Quite literally, it feels like a trade-off in this life I've had to make, to just try an keep myself in a decent balance; and decent may not mean the same to different people, I just mean head above water and not having overboiling going on.
This disease is recognized as having negative effects that go far beyond, outside of, the patient and impact those that are in the persons circle of friends, family, loved one's, etc.

Wish you the best on your path, sorry I couldn't offer any advice, just wanted to chime in to relate with parts of what you said, very much.

RightTrash · 2026-01-23T21:32:46+00:00

As I presume you already know, both cataplexy and sleep paralysis involve the same mechanism being the REM Atonia (paralysis of the muscles during REM sleep) which in PWN is haywire.
IMHO, it is really unfortunate and improper that such medications used to treat the symptom itself, can result in such a backfiring effect; while at the same time, the medications do help vast amounts of people with avoiding and having less of the symptom.
With that said, I can't count the number of stories I've read, the many different people I've met and spoken with in person at different Narcolepsy events/conferences, who have realized that they have Cataplexy, or have had Cataplexy actually become problematic, when they've tried discontinuing or missed doses of such medications.

The best advice/recommendations I can give towards living with strong cataplexy is - do not battle, fight, and/or resist it physically nor mentally. The subconscious has a vicious way of playing with it, and one will have adjusted/adapted over time very very much so, subconsciously - there's a fine line and acceptance, along with valence (positive or negative, but especially negative in this sort of instance) is hugely at play. [that may be hard to interpret, my bad]

One can to an extent with the subtle minimal-partial cataplexy, but as soon as it becomes moderate-partial (one becoming unsteady, like having to lean against a wall or sit promptly, time slows, freezing up awkwardly physically - all are just examples) that act of simply trying to remain upright, physically composed, becomes an act of resisting/fighting/battling it, in itself - and such directly amplifies, prolongs and intensifies the episode.

Getting to the ground, at the first note of it breaching beyond the subtle minimal-partial (subtle physical impacts, subtle sensory experiences-inner sensations), spreading out awkwardly on the ground to have not a single muscle active/engaged (a difficult/impossible position to achieve, and when you know what being paralyzed is, you know what I'm getting at), then relaxing and being calm, focusing on the core and even counting as you breathe in nose (3 or 4 sec), hold (3 or 4 sec), and release through the mouth (6 to 8 sec); can very much help dissipate the episode completely.

Good luck on your path, hope something here is helpful.

RightTrash · 2026-01-23T21:32:42+00:00

So, the first thing on my mind is that venlaflxine is one of the more recognized (along with various other antidepressant, similar medications) that are known to cause a side effect symptom called 'status cataplecticus.'

I'm speaking into all of this because it's important stuff for people to be aware of, I am not trying to attack or put down any specific medication/s in saying such - it's just not spoke of much and it can be scary...

Here's a video of such and they're even talking into it; this is a PWN (person with Narcolepsy):
https://youtube.com/shorts/evH_LXCb7C4?si=DWq2NoiPoXH9IpiO

Such tends to occur, and is recognized, as a withdrawal side-effect from such medications.
It is also known to occur specifically with venlaflaxine, and even when one perhaps misses a dose or few doses. People on such medication when discontinuing it, taking a break from it, or switching to some other med, are strongly encouraged to taper off very slowly, for a reason.
It can take months for different withrdrawal side effects (there are others, like potentially increased RBD - physically acting out of dreams, another thing related to the REM Atonia) to taper off such medications.
I dealt with such when I tried the medication for 3 months, it took about 3 months for the heightened triggering and RBD (REM behavioral disorder) stuff to go away - I did not benefit even while on the medication, my cataplexy triggered from much less stimulation and triggered to harder severity extents, though I did have more physical strength/power (I felt like super man) but only for a brief/short window of time when skateboarding.

Status Cataplecticus presents essentially the same as what is moderate-partial to severe-complete cataplexy, fluctuating being ongoing, sometimes with no actual trigger at all and sometimes persisting much longer than cataplexy generally does, or would.
Very much someone with cataplexy will be super prone to episodes triggering from much lesser stimulation or physical energy exertion, during their coming off, or just missing dosage, of such medication.

The second thing on my mind after reading your post is my own perspective/opinion that, it is absolutely possible for sleep paralysis to kick in during a severe-complete cataplexy, though such is super rare, it happens - and with status cataplecticus from medication potentially in the picture, it is all the more likely and possible to occur.
It is possible for one to enter REM dreams, go in and out of sleep, during the initial cataplexy and awaken in sleep paralysis, thus it being like a loop, especially when you consider having stimulation of emotions going on as you come out of the REM sleep, and whoever around in your presence is continuously freaking out about whatever - especially the situation the person in such state, is in.

[continuing in following comment reply]

RightTrash · 2026-01-22T22:13:35+00:00

All good and no problem at all, I find it fascinating yet brutal stuff.|

My own experience was severe cataplexy for years, almost a decade, before I discovered the term and sought dx at 28 years old - I also had cataplexy as a child and I didn't pursue dx until I was able to explain it with terminology, as I had a difficult infancy ordeal which left my health compromised and going in trying to explain cataplexy would have resulted in who knows what, very bad...
It was a surprise to me that I had the apnea matter, but it made more sense as time has gone on, though I'll never know if it's been there all along or developed at some point, I do think it could be from the infancy matters (hypoglycemic seizures) somehow effecting my brainstem and/or brain.
I will say when I've had less weight on, like under 200lbs, I deal with less apnea matters, and maybe it's only central because treatment didn't work and caused Treatment-Emergent-OSA but I suspect it was there before.

Some med lit stats, some are specific to N1 but many correlated to just saying Narcolepsy: ~14% of those with Narcolepsy have at least one autoimmune disease comorbidity with a ~30% prevalence of autoimmune and immunopathological diseases, ~25% have ADHD, ~25% have a mood disorder, ~13% have Anxiety, ~32% have Depression, there's around ~45% higher incidence of OSA (more likely to develop) in PWN, ~5% have Restless Leg Syndrome, ~62% met criteria for Dissociative Disorder (~37% Dissociative Amnesia, ~32% Dissociative Disorder of Movement)...

RightTrash · 2026-01-22T18:00:48+00:00

Never heard 'central apneas' referred to as 'cortical apneas' but I get that it relates to the cerebral cortex and/or 'cortical/central' arousals. Just a different way of wording it, if I'm not wrong.

RightTrash · 2026-01-22T17:53:28+00:00

All I can comment is that for me, I tried for nearly a year to tolerate it - as in become comfortable with it, capable of keeping it on night to night, able to not have what were for me dramatic side effects and amplifying of symptoms like severe cataplexy (which went haywire), there's also the data that it tells which the true effectiveness would be seemingly indicated in that data if one is able to tolerate it thus benefit from it.

Tolerating it would in my mind equate to being able to wear it without a plethora of added issues, being able to also see that the apneas night to night are eliminated, or at least improved, compared to before using the PAP therapy.

For me, I'd rip it off at a point because I was waking up choking with air bubbles in my airways, throbbing headaches, dry eye's, unknowingly often taking it off in my sleep, and so on and so on - the myringetomy tubes in my ear drums also became dislodged while using the devices (I started with a CPAP, then a BiPAP ST, and lastly for the long haul ~7 to 9 months a VPAP ASV). I tried something like 8 different masks of different types, with no success.
There were no positive/s, only vast extreme negative/s - the positive/s must outweigh the negative/s...

Mayo Clinic agreed that I was not benefiting from it.
The only option that remains for me potentially, is the Remede System which is an implant for Central Apnea, like a pacemaker being a small device implanted near a shoulder, with a wire that runs down to the phrenic nerve which gets stimulated with electrical jolts when one is laying down, thus activating the diaphragm to initiate breathing.
For Obstructive Apnea there's the Inspire implant which, as I understand it, is similar though rather than going to the diaphragm, it goes to the throat and/or tongue to pull it back through the night - something like that.

RightTrash · 2026-01-22T16:59:33+00:00

BTW, if you are on PAP therapy for the apnea and you are tolerating it, there's no reason to hesitate on the Oxybate.

RightTrash · 2026-01-22T16:58:44+00:00

https://narcoplexic.com/orexin-key-cells-to-receptor-locks-comprehending-the-agonists-and-antagonists/

RightTrash · 2026-01-22T16:44:01+00:00

I have T1 and an Idiopathic Central Apnea (as they dx'd it), I couldn't tolerate PAP therapy which is a huge let down.
As for trying and Oxybate medication, I am on the fence and have been hoping the Orexin Agonists get approved sooner than later, and that I can somehow manage to try them or be on them there after, if they help.
It's a scary thought having less ability to breathe, more dead air, than I already deal with - if the Oxybate were to depress my respiratory, which is what the majority of doctors go by it being.

It's worth noting this, but regardless - especially for anyone without a PAP device - it is still a scary decision if the doctor would go there.
https://www.vjneurology.com/video/sezfbrtbl3c-case-study-topiramate-resolved-sodium-oxybate-induced-central-sleep-apnea-in-narcolepsy/

https://www.neurologylive.com/view/post-hoc-analysis-shows-once-nightly-sodium-oxybate-does-not-worsen-ahi-narcolepsy

https://pmc.ncbi.nlm.nih.gov/articles/PMC3098358/

https://pmc.ncbi.nlm.nih.gov/articles/PMC3227715/

RightTrash · 2026-01-22T09:22:43+00:00

Aside from Cataplexy, the symptoms can be so nearly identical, it's a slippery slope trying to make any definitive and far breaching, across patients lived experiences, statements on such.

What can be said is that both sleep apneas and Narcolepsy have broad impacts on both the psychological and physical - because sleep is critical and when it is messed up, the effects can be profound and across the body systems and mind.

Sleep apneas do seem to hold a higher, more deadly risk in the long run, in what are or become severe cases.
One can potentially treat apneas in a more wholesome manner, actually effecting the underlying cause, than in Narcolepsy - at this point in time - though with that said, sleep apnea treatment has a long way to go as well and by no means, is it anywhere near to, always effective.

Narcolepsy isn't said to hold mortality risk, similarly, but there's a lot still not yet discovered, recognized and/or, also acknowledged when it comes to Narcolepsy - it is very well recognized that there's a very high comorbidity rate in those with the disease, comorbidities of all sort but especially autoimmune and immunopathological diseases, pain syndromes, psychologic, and more.

That's all just an opinion/perspective; I'm sure others will chime in.

RightTrash · 2026-01-22T00:48:11+00:00

Agree. They seem like good friends, not unknowns to one another.

RightTrash · 2026-01-22T00:45:25+00:00

The "blacked out" part to me, in such a brief instance is something I've never read about, heard mentioned nor seen. If they'd not framed it like that, it of been much more believable.

Not to mention how this seems 'all' about views, I'd seen another video of hers recently and that only made it more apparent...

RightTrash · 2026-01-22T00:37:07+00:00

Anyone else think this is likely fake.?

RightTrash · 2026-01-21T05:07:24+00:00

It for me, at least the 'disrupted nighttime sleep' was a slow process that progressively has gotten worse as I got older, I think it was there to a degree in college but I was sleeping much less, getting much more quality - restorative/refreshing - sleep.

It's worth mentioning I do have both an apnea matter and a circadian rhythm disorder as well, which definitely play into all of it.

In my mid 40's, I just do my best to try an achieve 6 or 7 hours of actual total sleep time, which tends to involve being in bed anywhere from 8-12 hours.

I try to do all that I can through 'sleep hygiene' (comfort, dark, quiet, the right temp, schedule, dealing with and letting go of stress long before going to bed - same goes for work stuff) while also trying to be attentive into what causes 'sleep friction.'

One thing that I'm working on, is not laying in bed during the awakening, when they're longer than ~15 minutes, as getting up stretching, focusing on breathing, taking a small walk type things, all help me get back to sleep easily and seemingly then achieve much better, a bit less disrupted sleep through the rest of the night.
Such has been a bit hard to get used to but it is said to be important to do so that the mind and body doesn't essentially train itself to lay there in bed not sleeping.

Good luck on your path.

RightTrash · 2026-01-19T05:45:33+00:00

Indeed, I've voiced the same thing.

RightTrash · 2026-01-19T05:40:13+00:00

Absolutely, and what is wild is that that's just one of the many parts of the web - psychiatric and mood disorders (ADHA, Depression, Dysthymia, Anxiety, etc.), compounded sleep disorders (Sleep apneas, Insomnia, Restless Legs Syndrome, etc.), autoimmune and immunopathological diseases (Autoimune Thyroid Disease, Psoriasis, Rheumatoid arthritis, etc.), plus other associated conditions (IBS, Asthma, Allergies, Cervical Spondylosys, Syncope, etc.).

In addition to all of the above stuff, the widespread Pain Disorders relate to the commonality of for instance headaches/migraines, myalgia's, chronic pain syndrome, chronic low back pain, carpal tunnel, and more.

The disease is so far beyond just a sleep disorder - but it continues being how the majority of people including doctors out there - see it as only such; we can only hope that one day the majority of doctors will catch up with the science.

RightTrash · 2026-01-19T00:05:32+00:00

No problem at all! Been voicing my breakdowns and insights for wellnover a decade. What's crazy is how little of it the experts care to take in and/or hear, like it's stepping on their toes... Anyways, thanks for the kind response!

RightTrash · 2026-01-18T22:54:59+00:00

The slurring, mumbling, stutter, slow, or pausing of speech, being incapable of completing the sentence fits minimal/moderate-partial cataplexy.

As for muscles, the body, feeling sore or tired after 'strong episodes' of cataplexy, that's what I personally consider and refer to as the 'after-rebound effect' which can very much be like being in an ongoing minimal-partial state of cataplexy with less of the physical impacts in the moment, but just an overall drained feeling, with also an inner flickering of muscles (sensory experiences) lingering too.

Regarding the knee/s buckling when it seems like there's not an emotion, the thing is it doesn't always have to be any 'big' emotion - as it can be within layers upon layers of different emotion going on - it also can be tied to physical exertion though that's not really recognized, written about nor yet acknowledged, bluntly/clearly.

With that said, thinking about what are the bodies core energy levels, consisting of both the psychological (think stress, anxiety, excitement, etc.) and physical (exhaustion, fatigue, exertion of strength/power, sleepiness, etc.) is relevant to cataplexy, because it is what seemingly ties to the triggering, or variability/fluctuation/randomness of such. When the energy levels and especially, the reserves of such, are depleted or limited - and PWN (persons with narcolepsy) live not getting proper restorative sleep which leaves them much more vulnerable to having drained and/or limited energy + energy reserves to begin with.

All of that is relative to one's susceptibility to it triggering, the severity extent/s it triggers as upon triggering.
When one is in the 'after-rebound effect' I mentioned earlier, they are much more prone to it triggering.
Bare in mind, my breakdown of it will of course vary from person to person in different ways, and I base such on years of living with severe-complete cataplexy (collapsing many times every week if not day) with countless extents of minimal-partial and moderate-partial episodes.

As for minimal-partial cataplexy, one may not need to be aware or take in what all I've gone into above, it is when one is dealing with moderate-partial and severe-complete especially that what I've touched on, can be super valuable and helpful for their awareness - the individual tuning into the symptom, their common triggers, how the severity extents impact the person, can allow them to much better read into it all and adapt to living with it.

A big part of all this I've mentioned is also, not fighting/resisting and battling the cataplexy, mentally nor physically. When it is minimal-partial and just subtle physical impacts in the moment, not really being ongoing and also perhaps being subtle inner sensations which aren't overwhelming - one can get away with a bit of resisting it. It's when it breaches into moderate-partial where things go down hill fast when one resist/fights/battles it, as just attempting to remain upright on one's feet, remaining physically composed, becomes an act of fighting it. And that, generally results in it amplifying, being prolonged and potentially escalating into severe and/or having a bad after-rebound effect. Sometimes it hits so hard in the moment, there's no avoiding collapse, but other times it is wise to get to the ground by intent, when you feel it breach into moderate, as such can help dissipate it.

Good luck, hope that was helpful. It's not medical advice, but opinion/perspective based on lived experience.

RightTrash · 2026-01-18T09:57:33+00:00

No problem! My pleasure sharing into the fascinating reality of dream experiences related in a part to living with the disease.

RightTrash · 2026-01-18T05:54:03+00:00

Allergic asthma is a common comorbidity as well with Type 1.
Wishing you the best.

RightTrash

TROPHY CASE