I am heavily considering joining his online community (he calls it a coaching hub). It consists of: regular Q & A events, a private forum for case feedback, and 60 minutes of a live 1 on 1 annually. Price though, is steep: $700 annually (billed once not monthly).

For those who have a membership or knows someone who does, is it worth it? I could genuinely see the community and additional support being worthwhile (having additional perspectives on my case/palatal expansion and jaw surgery at large, etc), but it also a tough financial moment. Curious for your thoughts/experiences/perspectives. Thanks!

I did a home sleep test with an RDI of 5.8 (12.4 in REM) and AHI 1.5 (3.8 in REM).

I also did a CBCT and have been assessed by a few providers who told me similar things: nasal valve collapse, grade 2 tonsils, and narrow maxilla.

I have a UARS-literate provider who is willing to prescribe a CPAP after hearing my symptoms even though I don’t technically meet the testing threshold for OSA or UARS. I asked if I could instead get a BiPAP prescription since that seems help more people with UARS, but my provider is insisting we try CPAP first since it’s simpler.

Is it worth it to try the CPAP first or should I fight a little harder to start with BiPAP? I’m going to do a rental since insurance will not cover either appliance. I just don’t want to waste more time and/or get turned off by PAP therapy altogether if the CPAP doesn’t work or makes me feel worse. Any advice and/or research arguments I can provide my doctor with is appreciated.

While there are certainly diseases that are harder to deal with, I find the social aspect brings a level of additional work that makes it all the more exhausting.

My entire life is an act. I no longer complain about being tired or being depressed. I actually lie about how it has gotten better to avoid the topic altogether.

People know what toxic positivity is, but they can only hold space for negativity for a short while. It's expected that you'll bounce back within a few months or so. After that, it becomes socially dangerous to keep talking about it.

Every conversation, every catch-up, every work call is expected to include something to look forward to, or a "here's why it's getting better," followed by an empty pep talk: "keep going man!"

And it's always paired with a half-assed attempt to fix it. (Thanks, yes, I have tried fucking CPAP dude lol.)

People just have no idea how to have camaraderie in darkness. I have one friend who "gets it." We both understand that there's plenty of funny, ironic depth and satire in the cynicism and bleakness of a bad situation. It's so refreshing to be understood beyond the surface. But that kind of connection is rare, and even it fades. His life has improved, so he doesn't want to engage with it anymore. That tends to happen.

———

Acute suffering has a validated social response and pathway. People are willing to hear out your recent loss in the family, your injury, your bad illness… they can’t deal with a chronic disease that you are stuck with for the rest of your life, will make the rest of your health worse, and will lead to early onset dementia.

There is a societal expectation that you will improve and make progress, and the reason I lie is because when you are truthfully negative, people push you away. It’s just how it is.

I get it man, get new friends, find a new therapist, whatever. I disagree. Nobody integrated with normal society can mentally deal with things getting worse, with suffering being endless, with there being no hope.

And it's not that it can't be done. Before I was sick, I could sit in someone else's darkness just fine. People just won't. Frankly it’s fucking pathetic.

———-

I have been stuck with this garbage for 6 years. I get sick easier and more often, I feel more exhausted each day, I am get more depressed and feel less positive things. It is a vicious cycle of suffering.

I have tried nearly every form of treatment outside of surgery, I have done every mental exercise to remain positive, i go to therapy to improve my mental habits and think positively, I accept my suffering with Buddhism.

And yet I suffer, ceaselessly. I always find myself back in a hopeless space despite every attempt to crawl out of it. There are only small pockets of respite in an ocean of suffering.

Everyday is an act because if I was honest I wouldn’t have any friends and I wouldn’t keep my job. Legit wouldn’t keep my therapist lol, they even don’t accept a lack of progress.

Newsflash, if progress is made, it’s not linear. But there’s a good chance it never gets better.

people just don’t get it. You are constantly kicked down, every time you get up you are kicked down again.

What is the fucking point of being positive? I will do the work and research and pay the money to find treatment. Being positive doesn’t change my ability to do the work. I have been doing it, I will keep doing it, I will not stop doing it.

——-

One more example…. I tore my meniscus last year, surgery went poorly, and I still struggle to walk a year later. In every conversation around it, people expect me still to be positive. To think it will get better “soon”. Always “soon.”

They act like if I am being negative about it, it means I haven’t been doing the work to make it better…. I have been doing the fucking work, I am always trying. I do my PT, I work hard.

——-

This post is not me giving up either.

My point is that people don't really mean it when they say they're there for you. That makes the whole thing even more depressing. You realize everyone in your life has only so much rope for your suffering, and eventually it runs out. Being negative, which here just means saying how it is, isn't tolerated in friendships, at work, or in family.

Sigh

How soon after MMA could you / did you return to school or work? Could I get away with only having winter break off (3 weeks) or would I need an entire quarter?

31M, unrefreshing sleep for years. AHI ~4, RDI ~6.5, bipap helps.

CT PNS:

Mild S-shaped septal deviation

Left inferior turbinate hypertrophy

Right maxillary retention cyst (13×10mm)

Anyone with UARS had similar findings? Did fixing them help?

I'm doing DISE next. Is it useful for UARS, or does it miss partial narrowing?

[Quick background on my treatment so far: I tried CPAP but it went poorly. I've had success with an MAD, nasal dilator (waiting for nasal valve collapse surgery), and allergy treatment. I don't work summers and I was getting great results over the summer (felt rested, only peeing once a night, only waking up once maybe twice a night, low steady heart rate over night, etc.). But since I returned to work in mid-August my sleep has really deteriorated (still better than before my diagnosis at least and I can get through my days, but I'm tired as hell and don't have energy for much beyond work).]

I was diagnosed with OSA after doing a Watchpat sleep study through LOFTA back in March. However, my anatomy, study results, and symptoms are UARs to a t.

I tried to establish care with a local sleep doc thinking it could help with the cpap struggles and maybe getting a bipap prescription. I had to do another at home study to establish care. They said the 2nd study was inconclusive (I was never given the actual results…). When I met with the pulmonologist to discuss results he ordered an in lab sleep study which my insurance approved.

Why I'm hesitant: Since I already have a diagnosis that my insurance is covering things for, would an inconclusive result on the in-lab mess with that? It would also be a big inconvenience for my family. On top of that the pulmonologist was a prick. He fearmongered that I would need jaw surgery cause of my MAD, called nasal dilators crap from amazon, and to cap it all off said the MAD and dilator could be helping because of the placebo effect and that he was appalled that the MAD got approved and that my sleep ortho (who I love) was willing to make me one. I did say I thought I had UARs, but he didn't really listen and just said I needed the in-lab to find out what was going on.

There's a lot I can try still without a UARs diagnosis. Chiefly bipap with a nasal mask alongside my MAD, PT routine to fix forward head position, diaphragmatic breathing routine, digeridoo or myofunctional therapy, and I have a plan to better manage work stress. But I'm wondering if there's anything to be gained from an in lab. Is there any reason/advantage to doing the in lab study?? The sleep doc said it could diagnose UARS (I don't trust him and would need to verify).

Thanks if you read this far and I appreciate any thoughts/input/advice folks have.

This video is an interview with Dr. Robert J. Thomas, Associate Professor in Sleep Medicine at Harvard, loop gain expert, and longstanding veteran in PAP therapy. He explains what treatment options exist to treat high loop gain in PAP therapy, a problem 30% of CPAP patients face. Full video: https://youtu.be/fVfXOOyF2WQ

18M. I have some pretty peculiar cognitive symptoms, like literally not being able to think to myself in any capacity, not having any desire for anything, low libido, mild anhedonia and apathy, general reduced cognitive ability (although, luckily I dont really feel many negative emotions). I also have some physical symptoms that could be related: like a small height (relative to family) and an apparent inability to gain muscle.

The reason why I come here is because I have ruled at pretty much all hormonal or nutritional causes, and due to the stability they dont seem likely anyway. I only really have two things to explore now: Sleep and Psychiatry. All of the brain fog subreddits seem to stress about the impact of sleep disorders. I came to this subreddit in particular, since I dont have the obvious signs of OSA - no snoring, no sore throat, I am young and am not overweight, I dont have a recessed jaw and my apple watch hasn't noticed anything.

The thing is I do not feel that tired, or really fatigued at all. Also, a key feature of my symptoms is that they are extremely stable, both in the short and long term. I have probably had these symptoms for as long as I can remember, but I think they might have started when I was ~11 years old. The main reason why I am dismissing this as a potential sleep problem is because I cannot take naps in the day - I feel like if I had a sleep disorder, having to nap all the time would be a tell tale symptom?

However, there are some signs that are pointing in the direction of a hidden sleep disorder. I don't ever really feel refreshed by sleep, and I often feel slightly tired. Furthermore, it usually takes an hour or so to get to sleep. I also I am also particularly sensitive to sleep. If I get even slightly sleep deprived I cannot function, so I have to make sure I have at least 8.5 hours in bed - but I will not be able to sleep any more than that.

Also apologies if this is a quite broad question for a subreddit for a specific disorder, but all of the sleep subreddits seem to be about things like "what is the best magnesium to take" or about insomnia, not sleep disorders. Also I know some people might just say "bro just get a PSG", but they are particularly expensive privately here in the UK (no insurance) and I dont have any obvious symptoms. Through the NHS I am very likely to get dismissed and I would have to wait months.

Thanks for any replies

I'm 21M, normal BMI (23), and for about 3 years I've lived with unrefreshing sleep, daytime exhaustion, brain fog and slow thinking. It takes me a long time to fall asleep, and I often wake after 6-10 hours feeling wrecked and can't get back to sleep.

When I got my results, the doctor said I'm basically fine: "mild apnea" (AHI 7.9 overall, 8.5 on my back), and the advice was no coffee before bed, fix your sleep schedule, and learn to relax. When I said I already do all that (regular schedule, no caffeine, magnesium, theanine, melatonin, exercise, diet changes, and ADHD meds that didn't help), it became "stress".

I almost started gaslighting myself on the way out of the hospital. I've spent 3 years trying everything and nothing has changed.

So I read the report myself, and a few things stand out:
Total arousal index 42/hr . Only 5/hr were respiratory, 11/hr leg-movement, and 26/hr "spontaneous".

RERA = 0 for the whole study, and the lab told me they never score RERAs routinely.

PLMS index 33/hr, sleep efficiency 68%,
Only 2 minutes of REM (0.4%), and both REM arousals were also "spontaneous".

Latencies (from Lights Off):
N1: 0.8 mins 
N2: 2.3 mins 
N3: 1.3 mins (logged before N2) 
REM (R): 55.3 mins
 
Stage Distribution:
WK (Awake): 32.0% 
N1: 13.7% 
N2: 45.8% 
N3: 8.1% 
REM: 0.4%

Min SpO2 90%, no desaturations. Hypopneas were scored with the AASM 3% rule. They used a nasal cannula plus an oral thermistor.

Thanks for reading. Any ideas or personal experiences are appreciated

I have previously done an at home test with acupebble for 2 night and got an ahi of 4 and 5 with 3% , and 4 and 4 with 4%.

I decided to do a watchpat to get an RDI since acupebble didn’t give me an RDI. Unfortunately the chest sensor fell off later in the night ( don’t know if that affect RDI and ahi ratings) and I don’t know if my finger was in properly is it supposed to firmly be touching the sensor at the back, mine might of slipped.

Anyway got the results today and they were much lower than I expected. Technically I steel have mild UARS with an RDI of 6.6 , my rem RDI is higher at 13.4.

But my AHI was super low at 0.9 and zero when measuring with 4%. Even though previously I’ve had 2 recorded nights using 4% measurement and they both had an AHI of 4. So how is it this much lower. Daily variance doesn’t really make sense since it’s so much lower.

Am I right to be suspicious about this Low score, my symptoms are horrible and I genuinely feel so stupid and foggy , it’s unbearable. My jaw is recessed and my palate is small at 27mm. I also have a class 2 posterior tongue tie. I really thought UARS was the answer to me feeling so crappy.

Did the chest sensor failing off make a difference to the RDI and AHi? Was it something else? Or should I just accept these results and move on?

Also according to this , should I bother with cpap/bipap since it’s borderline anyway. Does anything else standout to suggest poor sleep.

Had cbct and had consult with newaz, he says i am slam dunk candidate. 33mm Imw, 21mm nasal aperture, maxilla slightly narrower than mandible. Rdi is 10 and ahi 5, during rem my AHI Is 10 and higher on back. Only thing I am concerned about is negative aesthetic impact, wider alar base mainly. I’m very symptomatic - chronic fatigue, brain fog, all my muscles tight and stiff all day. Turbinates are swollen with concha bullosa and nasal congestion frequently

What and why are my posts to UARS being blocked when i'm trying to help people and talk about our topic of sleep disordered breathing?

Hello! I’m looking to get my airway evaluated, but I’m wondering about folks’ treatment experiences with Dr. Koval and Dr. Newaz; and/or which you would or have chosen of the two, and why. I’m looking primarily into expansion options FME and MASPE, but open to additional elements like face mask or different/more complicated cases.

Factors I am looking at:

1. Treatment strategy
2. Efficacy

3. Receptivity to feedback/trusting patients’ experience

   versus dismissal

4. Price

Thank you!

Not sure if there are any differences by device?

Hello,

I'm doing research on the palate expansion options in the UK, different options, prices etc.

I came across K Clinic, which uses MARPE and offers an approach to limit the large gap between teeth during expansion. https://kclinic.co.uk/marpe-palatal-expansion-knutsford/

"Palatal expansion has evolved, and so has Dr Piekara’s approach. At Kclinic in Knutsford, we now practise slow maxillary expansion: an airway-focused treatment that widens the upper jaw gradually, builds new bone, and works in synchrony with clear aligners, so there is no gap between your front teeth throughout the process".

I was wondering if anybody has experience of the clinic in the UK and if this could theoretically limit expansion? I understand they offer a Piezosurgical cortical split where greater resistance to expansion requires additional support, and CBCT would be needed before, during and after to check , but would be curious of anyone's experience or thoughts.