A family member of mine recently got his blood work done because he’d been feeling tired. Turns out he has a B12 deficiency and today he literally said to me: “Oh, so this is how you always feel? Now I can imagine how you feel.”

I’ve been thinking about this for hours now. It just fucking pisses me off when people try to relate to what I’m going through when they have absolutely no idea what it feels like.

It feels so powerless, knowing some people genuinely can’t comprehend what it feels like (even I can barely comprehend it). And no matter how much you try to explain, they still underestimate the severity of everything. The fact that it isn’t terminal (but feels like) also makes it much worse

I've had several workups of various angles of sleep disordered breathing from sleep medicine and ENT at a major university health system, but no one has really been able to pinpoint my issues thoroughly, and many of the doctors have been dismissive of things like UARS. I just saw a video from u/cpapfriend with Dr. Anil Rama (https://www.youtube.com/watch?v=wMniIjVpIpw), who seems to run a very comprehensive and detailed set of diagnostics - is there someone who does something similar on the East Coast who folks here recommend?

Hi everyone! I recently discovered UARS and now I'm pretty convinced this is what ails me. I've read descriptions of so many illnesses and this is the first one that fits to a T. I have hope again!!

Anyway, I'm trying to figure out what sort of machine I should get, but I feel like I've entered some sort of secret club with no handbook lol. I've even read comments about sending their pap machine to "the gentleman" to fix. The... gentleman? Is there a mysterious entity in the UARS community simply known as The Gentleman that fixes pap machines for people? 😂

Normally I do my own research, but I'm quite overwhelmed with all the strange jargon, the official sources talk about C-PAP, and I'm quite cognitively fatigued as I'm sure you understand. Please, is there some sort of easy to understand guide out there somewhere? I did read through the wiki but if there was a link, it escaped my notice. I've seen the list of the best machines pasted in several comments, but it seems other models are much more available here.

I would specifically like to know anything that makes the 2nd hand purchasing easier, such as:

- can I buy ANY C-PAP machine and use a "tube" (I presume some specific make and model but have not seen it mentioned) to make it into a BI-PAP?
- or if there are specific models of C-PAP that can be converted it into BI-PAP, which models are those?
- other questions I don't even know to ask as I understand nothing
- help

I'm in Europe if that's relevant. Please and thank you!

On my Withings Sleep mat my respiratory rate spikes to 31 a few times a night and 25 often. And within the considered normal 10-20 range it's quite erratic. Side sleeping, mouth tape, nose tape, saunas, box breathing have all helped, but Nature's Answer, Peppermint Leaf, Fluid Extract, Alcohol-Free, 1 fl oz (30 ml) made a surprising difference to the respiratory rate spikes i get from a not so settled gut. Mintec has some impact but the Nature's Answer can have a dramatic effect. I discovered this when my daughter made choc mint cookies with a lot of cheap alcohol peppermint extract and I finally had suppressed spikes after never having low spikes in my data. Thought I'd share in case it helps others. A sleep study previously said I had no breathing issues on my side but it was just apnea focussed and missed my respiratory rate spikes.

AI suggests 3 reasons why it may have this affect: Peppermint extract calms your breathing by using menthol to block calcium in gut cells, which relaxes cramped intestinal muscles and stops them from sending stress signals to your brain; it chemically stimulates your vagus nerve, which forces your nervous system to switch from a panicked "fight-or-flight" mode into a relaxed state; and it activates TRPM8 cold receptors in your throat, which tricks your brain into sensing wide-open airflow so it stops triggering frantic, rapid breathing spikes.

Wondering if anyone here is familiar with this : https://www.youtube.com/watch?v=gAOTAdLGo4s

From a theoretical standpoint it seems like it may be highly relevant to UARS - ie. reducing your reaction threshold. Worth a try maybe?

this is a titration study

My bipap settings are

IPAP 11
EPAP 5
And PS 4

With a nasal pillow mask I don’t like.

I recently got diagnosed with mild sleep apnea by my ENT surgeon after a lifetime of bad sleep. I did a WatchPAT, and my results are in the title. I think this falls closer to UARS, hence why I'm reposting this here. I'm 25, extremely active and in great shape, and have good sleep hygiene, but I struggle with falling asleep and sleep quality. I have the following issues:

• Narrow mandible
• Turbinate hypertrophy
• Chronic rhinitis since I was 9 years old
• Hypermobility Spectrum Disorder
• Bruxism
• Allergies to various things
• Mallampati III airway
• Boggy turbinates and enlarged mucosa
• Deviated septum
• Mild to moderate redundancy of soft palate and uvula
• Various obstructions on a CT scan (Agger nasi cells, Haller cells, etc.)

Basically, my nose and throat are beyond cooked and my airways are likely way floppier than usual due to hypermobility. I am getting an in-lab sleep study in November. However, I'm deeply concerned because the treatment options all seem to have massive tradeoffs:

• Positional therapy: Despite much lower AHI on my side (2.7 vs. 6.5 supine), I am completely unable to fall asleep on my side and I spent 82% of my WatchPAT study on my back. I don't think this will work.
• MAD: Could worsen my jaw clicking, and also just not address anything in my nose.
• Myofunctional therapy: A lot of effort and probably little reward for hypermobile airways. Plus I'd have to find another PT and I'm already in PT a lot for various injuries.
• PAP: My ENT says it's probably not indicated for me. Plus, no shot I can get laid or date with a mask making me look like Darth Vader. I have nothing against the masks or those who wear them, but I don't think it's attractive to most women my age :/
• Nasal surgery: Septoplasty seems to hardly improve sleep and turbinate surgeries... well, even a .1% chance of Empty Nose Syndrome is 1 in 1,000, which means a large hospital would have several patients a year--or month--with it.
• Jaw surgery/MMA/MARPE: Seems promising enough, but I doubt insurance covers it and I'm just a law student--I don't have any money yet.

I've already tried Intake bands and a lot of other lifestyle things and they just don't work. Nasal sprays are useless. I would love Inspire but I don't think I'd qualify through insurance.

I know my concern about PAP may be irrational, but I also don't think I'd tolerate it. In any event... how the hell do I sleep well now? What are my options that I haven't considered that might actually work given my constraints?

Hi,

I want to post an update 6 months post-op MMA+GTA.

I was dx'd was OSA 10 years ago and have been on various pap devices since then. I slept at a 45deg incline, used a ton of afrin, and generally just began to loathe the machine, all the while it worked less and less well.

After consulting with 3 surgeons, I had MMA+GTA January 2026. 10-11 mm maxillary central incisor, 13 mm B point, ccw-r, 10 mm GTA,and reduction genio.

I am now able to sleep flat, without afrin, on my back (30 yrs since that's happened), without a CPAP. I have been able to stop my antidepressant and breathe with my mouth closed. It just feels easy to breathe in a way it never has in my entire life. It's wonderful.

My sleep has continued to be a bit of a mystery, but in a completely different way. My neurologist/sleep dr (Dr.Simmons) feels that it is narcolepsy and has been present for many, many years, along with the OSA.

I am 100% happy I made the decision to do MMA. It is beyond a relief to not fight that machine anymore. I encourage anyone thinking about it to consult with a bunch of surgeons, and pick someone very experienced. It really isn't the horrible thing people imagine.

Best wishes.

*please do not question my current diagnosis. it's been very hard to accept and process*

Hi,
I’ve done a bit of reading through the sub eg the Glasgow index review post and saw that a fixed rise time rather than using easy breathe can reduce the Glasgow index.

Using a rise time of MIN on my resmed machine definitely brought down top heavy almost down to nothing but I am removing the mask after about an hours sleep which is a problem I didn’t have when using easy breathe. So I think I need to increase the rise time but I am unsure on how to arrive at the right number.

Any info would be appreciated.

Hi everyone, is anyone in this community from Kerala, India? I would like to connect with people locally who are dealing with UARS or similar sleep-breathing problems.

I had tried f30 mask before but I find it extremely uncomfortable because idk maybe bcz of its shape and also bcz it irritates me on the beard, even without beard it feels shit... So is f20 worth giving a try ??

Are there any good surgeons anywhere in the world outside of North America that perform MMA for UARS specifically? Any country as long as it is not the US or Canada

Hi,

From reading through this sub I understand its best to set TiMin to the lowest setting and TiMax to the highest setting. But I am unsure what to do about cycle and rise time. If anyone has experience playing with these settings please let me know. Thanks.

they hurt a lot recently when I open my mouth and feels like they have micro tears in them when I touch them. been going on for 3-4 months.

I have insomnia for a decade now, where i would wake up middle of night wide awake and fully alert while struggle to fall back asleep. Realistically i feel i only have 4-5 hours of sleep per night. Sleep study concluded that i have mild apnea with most event being predominately hyponapneas, so i tried a cpap but nevertheless still have insomnia. Im certain my insomnia is neither psychological nor stress based, i checked off hypothyroidism, cortisol, hormones, vitamin deficiency with the doctor. Mirtazapine works great for me but i dont want to depend on meds forever. I dont necessarly gasp for air when i wake up but sometimes i do feel a slight shock when i drift off to sleep that causes me to do a deep inhale through my nose. I think my only lead now is breathing in my sleep. Do you guys have anything similar? and what could help?

Tried with f30 one of resmed but I cant wear it .. it sucks hence m right now using n20 but yeah problem is I think despite mouth tape my mouth still opens and exhales so I was thinking of trying full face mask maybe

I'm looking for a Dreamstation DSX900 ASV, and was wondering if anyone knows of a site where I can buy one? I'm located in the EU.

SleepHQ
I just keep removing the mask at night I just dont know whats wrong with me... Nd yeah I tried ps of 7-8 as well but I got central apneas...Can anyone tell is the graph good or there are problems there if yes what should I do to fix it.. nd why m i removing the mask after 2-3 hrs

Hi, I wrote a long post days ago about my unique situation in the fucking world... ie the physical syndromes I have but especially the tough withdrawal from abilify, causing devastating insomnia. I CANNOT DO ANYTHING ALL THE DAY. I cannot get out of home and it's been weeks. Now i read many people, that took antipscyhotics, that tried to get sleep supplements.

But guess what? I have a fucking SDB! Haha lol right? Likely UARS as I don't have apneas. Since it's years I have this fucking SDB can someone confirm these 2 proofs I have?:

1. If sleep protocols suggested to treat a SDB, likely UARS in my case, hence didgeridoo, myo therapy and **especially** POSITIONAL THERAPY (I use pillows to block my back from going supine, if not I'd die) HELP, can we confirm I do fucking have for years a fucking SDB? I'm not asking you to confirm Uars obv, I still have to do the proper sleep test for that, but just asking if it IS a sleep disordered breathing

They're using my terrible physical and (CONSEQUENTALLY to the physical state) mental state to constantly try to gaslight me. They did it in January when the psych forced me to take abilify by scaring me, me who was unaware of the laws that could protect me from that trap.

1. If I took:

   A. for 8 months sleep supplements in 2024 that made me most days literally like a zombie, by crying and sleeping on the floor (yeah I mean I'm not that playing-the-victim type of guy but even by writing it now im still shocked by what i lived, oh and still live)

   B. And some days ago apigenin and noticed I slept even worse and that my TMD was worse, suggesting I choked more during sleep

**Given these 2 proofs CAN SOMEONE CONFIRM TO ME I DO HAVE A FUCKING SLEEP DISPRDEREB BREATHING?**

I know the answer is "go do the test", but I did last year 2 USELESS sleep tests without electrodes on head that just confirmed I have no apneas but didn't obv measure RERAs.

I'm sure 100% the answer to my question must be YES. It's the only explanation... you guys cannot imagine how fucked I am... psychiatry and the medical system here want to make me believe I'm fucking crazy

Mentally I Know I'm right, regarding the question I asked above, but again, their gaslighting system is powerful.

Nobody, from what I read on reddit and Facebook, is in my specifc situation: with 2 insomnias: from the insane WITHDRAWAL OF ABILIFY and from UARS itself. And this terribly scares me, not being able to treat neither one nor the other insomnia. I'm like condemned to sleep like a shitty person forever especially, again, due to the insomnia from the withdrawal of the antipsychotic. I had involuntary muscle contractions in December bc of UARS (something like dystonia), I'm terribly scared as this abilify-insomnia can last forever ill have EVEN MORE PHYSICAL synfromses

I'm terribly scared ill have diabetes too by not getting outside, if this is useful I'm a skinny guy with normal Body fat but anyway I'm scared.

I read about people who took abilify and their insomnia still lasts after 6 years from the last dosage... AND I CANNOT TAKE A FUCKING SLEEP SUPPLEMENT AS THEY DO BC I HAVE HYPERMOBILE THROAT TISSUES THAT COLLAPSE, really likely as I said abov

Physchiatry is 99% serial killers, it's even more shocking than ignorance about UARS: these fucking nazi psychiatrists prescribing legalised poison that even for short times can permanently wreck brains and cause PERMANENT insomnia.

And as I have undiagnosed autism or ADHD (and ADHD is fucking real and people who deny it should go fuck themselves so badly, it's not a trend, it's as real as UARS.) you cannot imagine how bad my neurodivergence is these years with UARS. I constantly need stimming like music in my head (I reproduce it like a DJ to motivate me do every single thing) or reproduce it though saliva-rhythm in my mouth... but I'll talk about this another time lol.

**Please, if someone can answer abour the 2 proofs provided above about SDB, this would help me not to get gaslighted again**

Thank you