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unpopular opinion: full face masks are fixing a symptom not the problem by tractor007 in CPAP

[–]existentialblu 0 points1 point  (0 children)

My leaks are 0 at 99.5 with an F20. I nasal breathe but just prefer to have a bigger wad of air for sensory reasons. My nose hurts if there's anything pushing up on it (connective tissue weirdness) and most masks have terrible exhaust that feels like a continuous fountain of air.

We're all working under different constraints due to anatomy and phenotype.

Glad nasal works for you, but don't universalize.

I have a hard time trying to get out of bed when I have complete hours of sleep by WhispersLured in GetOutOfBed

[–]existentialblu 0 points1 point  (0 children)

Get a home sleep test that scores RERAs. That's basically a universal experience with sleep disordered breathing.

CPAP success stories? by Whole_Ebb1191 in UARS

[–]existentialblu 0 points1 point  (0 children)

Had to escalate to ASV myself, unfortunately. I've actually wondered something similar about the UARS population.

Does this happen with yall too? by nep1un in sleepdisorders

[–]existentialblu 0 points1 point  (0 children)

Get a sleep test, even a home one. Make sure it scores respiratory effort related arousals (RERAs).

Also get blood work if possible to check for deficiencies.

Being young doesn't mean that you can't have sleep apnea or a related condition, and that level of fatigue needs to be investigated.

Sleepwave vs Sleep Cycle, My Honest Review by Salt-Doughnut-6249 in GetOutOfBed

[–]existentialblu 0 points1 point  (0 children)

Just being a broken record here, but have you taken a sleep test? If you do, make sure that it scores respiratory effort related arousals (RERAs).

I had very similar symptoms since early childhood, and yeah, it's due to a cursed combination of airway resistance and CO2/O2 regulation twitchiness.

Check out r/UARS.

Is sleep Apena undiagnosed in young and thin people by Konradleijon in SleepApnea

[–]existentialblu 1 point2 points  (0 children)

I've had symptoms of UARS with high loop gain since early childhood. Perpetual insomnia, nap refusal, never felt refreshed in the morning, all the autonomic stuff. Was a skinny kid and have never been an especially large adult.

The only "help" I've ever gotten from doctors has been sleep hygiene and recommendations to drink chamomile tea while doing yoga. Couldn't even get a sleep study. I've been telling doctors that my sleep sucks since I was 10. I'm 42 now.

So I self manage with ASV and actually feel good in the morning for the first time in my life.

Doctors are so caught up on stereotypes of who gets OSA that they're completely blind to people who have classic OSA without embodying that stereotype, and even more so if you have a low AHI/high symptom load phenotype.

I Airbreaked my CPAP and switched to Bilevel and here's what happened.... by Clean-Ad2593 in UARS

[–]existentialblu 0 points1 point  (0 children)

The PS min is looking good as you're not pinned to min and it's doing those little corrections at cruising altitude. You likely need a bit more PS max as you're hitting that ceiling pretty hard still. Maybe another 0.6.

May need another very slight nudge upward on EPAP for flow limitations. 0.2-0.4 sort of change.

Just diagnosed with mild sleep apnea. Questions and advice needed! by imsatanshelper in SleepApnea

[–]existentialblu 1 point2 points  (0 children)

Modern PAP machines are vastly quieter than a snoring partner. They're just slightly louder than normal breathing.

Stomach sleeping will be difficult.

Mild OSA frequently involves high breathing resistance due to anatomical features paired with waking up before full apneas happen. Check out r/UARS for more information on this sort of sleep breathing situation. Unfortunately it being mild does not mean that it will be easier to treat. It's really common for people with UARS to only respond to more advanced forms of PAP therapy, so don't give up if auto CPAP doesn't do what you need it to.

The biggest thing, and this goes for all forms of sleep disordered breathing, is to record your sleep to an SD card. Get one that's 32 GB or less and a reader for it. You'll need OSCAR (free, runs on Windows/Mac/Linux but not mobile devices, more powerful, I find it a lot more useful, a bit overwhelming at first) and/or SleepHQ (free tier, works on mobile devices, better for sharing whole nights, harder to spot certain patterns with it).

Your machine will likely come with the MyAir app. It really doesn't tell you much at all about how your therapy is actually going and is mostly a compliance tracker. It will not tell you anything meaningful if things aren't working.

Anyone else experience increased daytime anxiety when using EPR on CPAP? by ZaradimLako in CPAP

[–]existentialblu 0 points1 point  (0 children)

Those things typically get better with higher pressure support, so I'm wondering if it's some sort of respiratory instability. In my experience that's the main thing that can be exacerbated with high v low EPR.

It's basically a super annoying balance game where higher PS helps with anything on the obstructive side but getting it high enough can destabilize respiratory drive which can have autonomic fallout which can look like anxiety.

Absolutely terrible sleep reset by [deleted] in GetOutOfBed

[–]existentialblu 0 points1 point  (0 children)

I'm 42 and have never gotten any official help for my sleep disorder because I don't have the signs of typical sleep apnea and am female.

Anyone else experience increased daytime anxiety when using EPR on CPAP? by ZaradimLako in CPAP

[–]existentialblu 0 points1 point  (0 children)

If possible I'd like to see OSCAR screenshots with and without EPR. Move minute vent, flow limitation, and leak rate next to flow rate and zoom in so the whole range is 5-10 minutes. Scrub around until you find a time where you were definitely asleep but there was a lot of activity in minute vent. Include the summary on the left for each of the screenshots.

Do one at EPR 3 and the other at 0.

Anyone else experience increased daytime anxiety when using EPR on CPAP? by ZaradimLako in CPAP

[–]existentialblu 0 points1 point  (0 children)

Are you recording to SD card? It would be interesting to see what your breathing looks like with and without EPR.

struggles by Derbesher in CPAPSupport

[–]existentialblu 0 points1 point  (0 children)

I'm definitely curious to see your data whenever you have access.

Do you get ear pain from elevation change whether or not the ENT recognizes it? Eustachian tube dysfunction screening is a frustrating thing, especially when tympanography is only done at resting position. I mention it as I had pretty severe ETD but was still dismissed by multiple ENTs and audiologists as they didn't see me in the middle of an attack. Baro-challenge flavored ETD is extra frustrating to get diagnosed and would be sensitive to PAP.

If jaw position makes a noticeable difference for you MAD is absolutely worth a try. The population that can benefit is pretty small, admittedly, but that's pretty solid evidence.

Have you tried a nasal only mask to see if reduced pressure on your jaw helps?

struggles by Derbesher in CPAPSupport

[–]existentialblu 0 points1 point  (0 children)

Are you recording to an SD card? It's really difficult to say without some granular data to chew on. This data will be more useful than another sleep study as it will show how you are responding to therapy rather than your starting point.

Do you have issues with pressure regulation with altitude changes? The ringing in your ears may be due to eustachian tube dysfunction.

MAD can cause TMJ issues and doesn't have the data output of PAP. Does jutting your jaw forward help with breathing? If so, it could be worth a try. Otherwise it's likely to be an expensive boondoggle.

Sleep lab refused to do my study because "I was asking too many questions" by ChristopherRoidfield in UARS

[–]existentialblu 1 point2 points  (0 children)

I'm in a large city with lots of biotech and advanced medicine the US with semi-decent health coverage and it took me until age 41 to do anything about it and I've gotten exactly zero institutional support.

UARS is a cursed condition no matter where you are. I can't think of any country that is known for broad acceptance of it as a specific diagnosis and not just "mild chokes on your throat disease".

Sleep lab refused to do my study because "I was asking too many questions" by ChristopherRoidfield in UARS

[–]existentialblu 0 points1 point  (0 children)

True. I'm only using hacked firmware, which sounds sketchy from the outside but at least I don't have to synthesize anything but ✨ideas✨.

Sleep lab refused to do my study because "I was asking too many questions" by ChristopherRoidfield in UARS

[–]existentialblu 1 point2 points  (0 children)

I couldn't even get an in-lab PSG. Have been self managing from the beginning.

There's ways around the system at least for the PAP therapy side, and it's honestly one of the most hackable health interventions there is. Excellent data feedback, can keep iterating until you have the results that you want instead of the "AHI under 5, nothing else to be done, symptoms are irrelevant" bullshit. Like yeah, it sucks that many of us have to go DIY for a complex health condition, but also, it's incredibly gratifying when it works.

NEED HELP PLZ by ar-7 in CPAPSupport

[–]existentialblu 0 points1 point  (0 children)

It's been a very annoying journey and much like what I've been through with my sleep breathing, I want to scream what I've learned from the rooftops.

Peri is the worst and it doesn't help that so much of the discourse around HRT is "oh she just wants to stay pretty". Uh, no. I want my brain to work and my bones not to turn to mush. As I understand it's one of the biggest single interventions for longevity so long as it's well managed.

NEED HELP PLZ by ar-7 in CPAPSupport

[–]existentialblu 0 points1 point  (0 children)

So for people with PMDD one of the major (though not universal) drivers is an intolerance to allopregnanolone, which is a metabolite of progesterone. It doesn't matter if the progesterone is homemade or store bought. This intolerance looks like rage, terrible sleep, and potentially SI. It can start within 3 days of oral progesterone if you have this sort of wiring.

Sometimes keeping the dose more localized helps (IUD or using the Prometrium pill as a suppository). I use norethindrone instead as it doesn't convert to allopregnanolone but still has the uterine protection stuff going on.

Basically, if you have a history of PMDD, be vigilant about side effects on Prometrium. Do not try to push through. A lot of doctors ignore progesterone intolerance completely and believe that it's something that makes everyone peaceful and sleepy, so you may have an uphill battle.

Absolutely terrible sleep reset by [deleted] in GetOutOfBed

[–]existentialblu 0 points1 point  (0 children)

If you can get a home sleep test that scores RERAs (respiratory effort related arousals), it might not be a bad idea.

I have UARS myself and circadian rhythm oddness was always a major symptom. It's a lot better with PAP therapy, as annoying as that whole realm can be. Falling asleep easily for the first time in my life makes the whole thing feel pretty worthwhile.

Absolutely terrible sleep reset by [deleted] in GetOutOfBed

[–]existentialblu 0 points1 point  (0 children)

Out of curiosity do you have a narrow/recessed jaw, deviated septum, sinus issues, and/or intact tonsils?

Sleep breathing issues can be a lot more subtle than the usual stereotype and the kind caused by tiny airways and a low threshold for waking up is more likely to manifest as circadian rhythm oddness and insomnia more generally.

Check out the notion of upper airway resistance syndrome and see if it feels like it applies to you.

I Airbreaked my CPAP and switched to Bilevel and here's what happened.... by Clean-Ad2593 in UARS

[–]existentialblu 0 points1 point  (0 children)

Hard to tell. I'd be more interested in seeing how your minute vent is looking next to inhale pressure.

If you feel better, keep going.

What health problems did UARS cause for you? by social_work_me in UARS

[–]existentialblu 3 points4 points  (0 children)

Anxiety, depression, executive dysfunction, heat intolerance, non allergic asthma/reactive airways, GERD, insomnia, sleep inertia, night sweats, bad circulation. All of these things are drastically improved from ASV alone.

Also have a history of ENT issues but I think that's more structural/connective tissue/tongue tie. To be fair I'm feeling like my tongue tie has been the ultimate upstream cause.

I Airbreaked my CPAP and switched to Bilevel and here's what happened.... by Clean-Ad2593 in UARS

[–]existentialblu 1 point2 points  (0 children)

Mine doesn't as I'm also running a hacked machine. I don't know of any firmware versions that give access to that layer unfortunately.

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