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Flipping the model presents a new way to treat sleep apnoea (flinders.edu.au)
120 points by belter on Aug 19, 2023 | hide | past | favorite | 96 comments



Totally agree. My journey started with TMJ disorder. Turns out bruxism (teeth grinding) is common in sleep apnea patients; I assume because it forces the lower jaw forward. I started with a mandibular advancement device and it was amazing. It completely relived my debilitating TMJ jaw pain and fixed my sleep apnea. I couldn’t believe how amazing I fet every morning. Unfortunately, and which was clearly communicated to me by my sleep dentist, after about 8 years my lower jaw stopped resetting back to a normal bite during the day. So I switched to CPAP. I love my nasal pillows plus chin strap CPAP, the sleep quality is unbeatable and my light-sleeping partner would have left to sleep in another room permanently if not for it. Along the way I have tried many other ideas—a tongue suction pull forward thing, a rear tongue electro stimulation device, prone sleeping, wedge sleeping, just the chin strap, and I looked into the pace maker thing and participating in an oral small molecule trial but didn’t follow through with it (also, I’m already thin, just a weak jaw line). Nothing compares to CPAP at high humidity and medium temperature. What has made a major impact was seeing an ENT, and the discovery of sinus blockages, so I recently had major sinus surgery and it’s improved my sleep apnea about 75%! Turns out “negative pressure” is a major cause of airway collapse. So I’m going to try some of the non-CPAP stuff again to see if my partner is able to deal with at most some loud breathing.

Sorry for the long post, but my advice to all is see an ENT if you need a CPAP and are already thin.


I want to emphasize the importance of seeming an ENT. I also saw an ENT, but very early in my journey. I also had sinus surgery. After recovery was the first time in my life I could breathe fully through my nose. I had no idea - it was like being blind and being able to see for the first time, except I had no inkling others could see. That actually opened up a realization that the sinus issues they fixed had led to chronic infections, which upon over a year of various treatments I finally cured, leading to an incredible uptick in life quality. Turns out some non trivial percent of people have chronic sinus infections due to poor nasal air flow, and having an infection next to your brain doesn’t make you feel very good. But they’re also very hard to diagnose.

The ultimate treatment that worked was daily sinus irrigation plus a treatment of sinus irrigation with a specific type of topical antibiotic that can break down biofilms. I would mix the antibiotic with saline and topically irrigate the sinuses. The benefit was it wasn’t a systemic antibiotic so it didn’t screw up my entire system. I eventually read this book:

Harvard Medical School Guide to Healing Your Sinuses (Harvard Medical School Guides) https://a.co/d/dpDZwba

And they had a brief section on topical antibiotics. I asked my ENT and he said it’s a vastly superior treatment but most people refuse to do sinus irrigation so he just gives pills - which he said are usually partially effective, and thus temporary, due to the presence of biofilms.

Anyways long story - I recommend everyone assume they have a sinus infection and visit an ENT for a check up, and to take up the practice of sinus irrigation as a preventative measure especially during and after an upper respiratory infection. Apparently when baths were the common way of cleaning (especially before modern plumbing, using rivers and lakes), sinus irrigation was generally part of the routine by just dunking the head and filling the sinuses then expelling the water and other stuff. There’s a now lost English word for it that I can’t recall any more, but with showers and modern Victorian hygiene that dispensed with a lot of traditional hygiene, we’ve lost the practice.


It's worth knowing that, according to some recent research, taking a topical antibiotic like this might have permanent impacts on microbiome in your nose (and lead to drug resistance.)


Yes, but systemic antibiotics are substantially worse in this regard as they change your entire systemic micro biome, and a chronic sinus infection is a permanent highly negative micro biome in your nose. Sometimes it’s better to hit the reset button than endure misery for the rest of your life :-)


Just to add this, my ENT prescribed a nasal probiotic prior to my surgery due to staph risk. I used it for 6 months prior to the surgery and now I continue to use it because, either it's a placebo or something special, it seems to improve the airflow in my nose beyond what I'd expect from just squirting some buffered water up my nose. Additionally, I seem to have fewer head-colds that also seem to resolve more rapidly (I have two small children, so my house is literally an incubator for infections). This is the product: https://liviaone.com/collections/probiotics/products/probiot... in case you were curious.


it's important to point out that sinus irrigation is said to be able to cause a brain infection itself.

hence the need to sterilise your water by heating it first.

i have been doing sinus irrigation with a syringe filled with water straight from the tap for years; i was horrified when a friend pointed this out to me.


Yea, this is why I just pay for the sterile sensimist nasal saline spray: https://www.amazon.com/Simply-Saline-Adult-Nasal-Original/dp...


Now I’m curious what the lost English word is.


What’s the antibiotic?



Have you had any experience with nitroxoline?


>What has made a major impact was seeing an ENT [...] Turns out “negative pressure” is a major cause of airway collapse.

The cause of snoring & apnea, from my own searching online and seeing various anecdata, is that there are several common causes but it can vary wildly.

I've also tried many similar treatments to yours, short of CPAP, and including trying tongue & jaw exercises and mewing to try and get my default sleeping jaw & tongue position to be the same as when I'm awake (never had success after months). I had my deviated septum corrected and a turbinectomy alongside it, and it made absolutely no difference to my snoring (but I do breathe better in more humid climates now).

The only other main factor I've noticed is weight, or rather visceral fat. Being overweight often comes with lots of visceral fat, and this includes near the airways, thus constricting the space your airways have to operate with. Perhaps that contributes to this whole negative pressure thing.

A side benefit of having your partner sleep separately is that there is far less sleep disturbance, even the kinds you wouldn't notice. My sleep quality has gone up.


Is "mewing" a typo? This sounds incredibly cute.


“ Mewing is a technique in which the tongue is placed on the roof of the mouth in an effort to make the jaw bigger and more square. This may be done for aesthetic reasons and/or to correct orthodontic, breathing, and facial structural issues.”


> I love my nasal pillows plus chin strap CPAP

Speaking of chin straps - I could never get one to work, but “Caldera Releaf Neck rest” collar worked a treat.


Omg, I purchased one of the Caldera neck rest collars and slept with it on last night instead of my chin strap. Wow is all I can say. Normally my AHI is around 2, it was 0.2 last night. What is this black magic!? Thanks so much internet stranger!


You’re welcome.


Totally agree! I went through tons of them. The one that finally worked for me was this one: https://www.amazon.com/PRIMADA-Premium-White-Support-Industr...

It's basically a 4 inch wide soft elastic band with velcro on the ends.


Can you elaborate on “oral small molecule”? Googles failed me.



Thanks.

“AD109 targets two neurochemical pathways which control the upper airway musculature during sleep via a dual mechanism of action”


The number of people that are using a CPAP is honestly mind boggling to me. The number that have gotten one, and then refuse to wear it is even crazier.

I remember when I first got one, I assumed it was some niche thing that was going to be unheard of from everyone I talked to. Turns out, not so much.

I don't think it has been a miracle device, by any measure. But I'm curious what makes it so hard to stick to for so many.


Mine is a pretty high pressure, and a full face mask. The high pressure means the mask has to be strapped pretty tight. It also makes it tough to get into a regular breathing pattern, making just the act of breathing a major chore. You can't talk, or cough. You have to stay in certain positions to prevent the air from leaking out. The air echoes down the tube. I was a stomach sleeper before, which is impossible with the mask, so had to learn to sleep on my side. Every now and then, I do skip the mask occasionally, and it's words can't explain how much better it feels to sleep "normally". So I can see why a lot of people skip it.


Once you're above 15 cmH2O, you probably qualify for BiLevel, which some people tolerate better than CPAP.


See if you can turn on EPR where it lets off the pressure during an exhale.


Some of us are just unlucky and face a bunch of challenges with CPAP.

I was first prescribed a full face mask. I didn’t tolerate it well. I swallowed air and woke up every morning feeling like I was going to vomit.

I had to teach myself to breathe through my nose while sleeping (with no help from the sleep clinic, of course) and then switched to a nasal mask. This was extra challenging because I have a deviated septum and can only really breath through one nostril.

I’m a side sleeper and it took me a long time to find a pillow and sleeping position that didn’t hurt or break the mask seal.

Along with all that, I just find it uncomfortable to have a thing strapped to my face all night. I still really can’t fall asleep without some sort of sedative.

It’s just hard for me.


For me, I have an unrelated sleep disorder that makes sleep extremely important, and sensory issues that made sleeping with CPAP difficult to impossible. I tried lots of kinds of masks at my expense, but got no material support from the providers involved. After many months of trying I found that I have far better sleep without it, and got sick less frequently as well. I cleaned it fastidious and fiddled with it regularly but couldn’t find a sustainable way forward with it.

The mechanical sound of breathing, the mask getting stuck in my long hair, the intentions posture and breathing form… and dear mercy the pooling moisture on my face.

I shaved a sick beard for it. I stopped sleeping with my partner. It was a saga that I had tried a decade earlier with the same outcome.

Ultimately it turned out that simply staying hydrated and adding a little incline to my mattress is all it took. My O2 concentration has held steady and the snoring has stopped. I’ve taken my alcohol consumption down to near zero, and I have to imagine that helped as well. My weight and body fat have been pretty stable throughout.

I’ve kept my gear in case I have an occasion to try it again. Also they wouldn’t take it back and have got legislation passed to ban CPAP resale. Maybe one day I’ll get around to hacking on an IoT smell-o-vision project and have a decent use for the thing.


Wear the gear every time you have had alcohol, and you will definitely feel much better the next morning. Bonus points if you can crank the humidifier to help keep you hydrated while sleeping.


How are you measuring O2 levels?

I’ve also been experimenting with a slightly elevated mattress recently, it seems to help quite a lot for my OSA.


I've gotten a full bed foam wedge in the past. I can't find the original one I bought before but I think the below is similar. Its much better than a short wedge pillow if you are a side sleeper. The only problem is initially you will slide down slowly but it gets better over time. I used it for a different reason because I used to get GERD issues in the past and elevation would help a lot.

https://www.amazon.com/stores/page/20D27239-CBE7-4150-BEA7-A...


Is it really difficult to understand why people don't like sleeping with a mask that makes noise?


It isn't that it is hard to believe it can happen. It is so many people, though, that it is hard for me to comprehend.

And yes, the mask can make noise, but typically not as much as the person makes snoring for your partner. Modern ones, in particular, are fairly quiet and can be tucked under the night stand such that they make about as much noise as basic forced air venting systems do. Which is not much.

The mask can be uncomfortable some nights. They do have a variety of masks to try, though. And if it isn't working, they have other options.

That last point is actually refreshing for me in this story. So many bounce off a CPAP into nothing. Hopefully efforts like this story will help people find something that can work.


My swift pillow on a Resmed A10 is 0db. I can’t tell if it’s running sometimes. It’s not for everybody but people should expect to have to experiment for a few weeks.


If you are asleep, can you hear it?


Your partner hears it, you may hear it when it has moved a bit and the air is leaking, you hear it when you try to go to sleep and the overpressure safety valve is next to your pillow and making a wheezing sound, when you end your sleep cycle and could go to another one except that the mask moved a little and it's bothering enough to wake you up (and then you have to find sleep again), you worry about keeping it and yourself in just the right position that will allow you to go back to sleep, effectively preventing you from falling asleep because of the stress...

And I have a few reasons more,if you really need.


Falling asleep with noise might be difficult for some.

Also, some people have parters in the room where they sleep and the noise might bother them as well.


When I wear it I wake up in the middle of the night and feel like I am suffocating. Like it’s smothering me in my sleep. Even the expensive biPAP makes me feel this way. I have no such issues when I sleep without one.


That sounds like you’re not using it properly. Let me guess, a doctor set it up for you and set the pressure to 4cm or something ridiculously low. They love doing things like that.


I went through that phase a couple weeks after starting and it lasted for a few weeks. That was almost 5 years ago and now I love my CPAP.


Not as mind boggling as the obesity rate.

I’m very aggressive towards friends about cpaps. I bother them until they do a sleep study. It is life changing for many of us.


Agreed, and one does not preclude the other. :D


I'm muy experience with a Reamed one, on one hand, the noise. It took a lot of time for me to get used to it and fall asleep. I did some adjustments to the machine using the hidden medical menu to improve it (basically, disabled "Expiratory pressure relief (EPR)™" which "maintains regular airflow pressure while you inhale and reduces pressure to make it easier when exhaling")

On the other hand, the masks. I started with moderate success with a nasal pillows one and at some point I started opening my mouth having the worst dry mouth experiences in life.

Then I switch to a full face mask that covered my nose and it itched so hard at night that I woke up just to scratch.

Then I switched to another full face one that left my nose out, but couldn't get it to not leak (I have a lot of facial hair).

Then I got back to the nasal pillows one but I'm taping my mouth close. I've finally had moderate success with this.

I took me like 3 years to get here.


I sweat where the mask contacts my face, so that's one issue. As others have said, it can be noisy. I find the noise highly variable based on how it sits on my face and if there are things (a pillow, a sheet, my hand) in front of the discharge vent. At times it feels claustrophobic. I feel vastly better in the morning if I've used the device for more than half the night, so I'm very motivated to make it work.


They make a stupid number of different masks, so it is worth trying the different types. Also worth pursuing the dental ideas linked in this story. Looks fairly promising.


CPAP causes a sense of suffocation, nasal congestion, face masks are weakly effective while nose masks often run into the issue of switching to mouth breathing during resistance. It also prevents total airway collapse but not increases in effort. Basically it's way less effective than people assume, while introducing its own sleep disruption


For myself I noticed reducing my own bodyweight helped a lot (so from 108kg to 100kg was already helping me a lot). Which also means that I know that I cannot allow myself to regain this weight again... ;)


Not every apnea sufferer is overweight, but it’s at the top of the list of causes by a very wide margin.

Weight reduction is extremely effective for most (though not all, there is a small minority of non-responders) in this situation. The challenge is that patients hate to hear it from their doctors so many doctors won’t even bring it up. Doctors are increasingly dependent on patient ratings for their performance reviews so difficult topics are often avoided.


Agreed, I know when I've crossed the 98kg mark because I start snoring.


Can anyone with access to the actual paper share the treatment regime they are suggesting, preferably with the names of actual devices they used? The summary and conclusion was unfortunately light on details. Please, and thank you!


Oral appliances for sleep apnea are such a step forward. Have been using one for a few years now, never had to go the CPAP route. Plus stops me from grinding my teeth at night.


I started using a CPAP with a nose facemask almost two years ago. My doctor ended up also prescribing a low dose of Ambien because wearing the mask triggered a claustrophobia reaction in me. It was enough to get me to sleep with the mask on most nights, but I almost always pulled the mask off after 3-4 hours (or less) without even waking up. I haven't worn the CPAP for about six months because I have allergies that keep me just congested enough that I can't breathe through my nose with the mask on anymore. The thought of a full face mask terrifies me.

After all that, my sleep seems fine (it never seemed bad at all to me) and I have some amount of dependence on Ambien which I have no idea how to kick.


It's not about fixing poor sleep. Chronic sleep apnea causes other downstream effects like pulmonary hypertension and right-sided heart failure, which are the main things we're trying to avoid by using CPAP machines.


> It was enough to get me to sleep with the mask on most nights, but I almost always pulled the mask off after 3-4 hours (or less) without even waking up.

That's pretty common, but you get used to wearing the mask longer and longer, it may take multiple weeks. Me and a lot of users on /r/CPAP will give you similar feedback.

As for allergy congestion, have you tried Claritin, Flonase, others? May need to check with the doctor.


The only reason why CPAP has such abysmal failure rates, is because followup is an absolute joke. Patients are titrated in a sleep centre, typically for one night, and are then sent home with a machine, probably the shittiest mask the sleep centre had on hand, and a kick out the door. With some luck, patients have to come in once a year, usually to prove that their therapy is compliant with whatever harebrained scheme their insurance has set up. If they're really lucky, the physician will actually look at the machine's data, and if they really strike gold, they might even adjust therapy as needed.

One initial visit, then once a year. For something you have to wear every night for the rest of your life. It's a joke. Everything else, you'll have to figure out on your own. Is it any wonder people give up? They're likely on the wrong pressure, using the least comfortable mask, and have no idea how to make things better.

It's a good thing there are resources like Apneaboard [1], Lanky Lefty's youtube channel [2], and software like Oscar [3] to help people out. If these didn't exist, failure rates would be even higher. And if the medical industrial complex would get their heads out of their arses and actually tried to help patients, compliance would be through the roof.

[1] https://duckduckgo.com/?t=ffab&q=apneaboard&ia=web [2] https://www.youtube.com/@Freecpapadvice/videos [3] https://www.sleepfiles.com/OSCAR/


I know some medical professionals in this domain who would disagree with your assessment. The hardest part is convincing patients to come back for followups and to comply with treatment.

Even my primary care doctor said he has abysmal compliance rates with apnea treatment because so many people decide that wearing any device every night is too much to ask.

I half suspect that apnea is being diagnosed so aggressively that people with even mild apnea are getting treatment. This would explain why patients are willingly giving up a treatment that is life changing for the better in patients who are suffering severe symptoms.


That's a catch-22, and it's exactly why followup is important. And why physicians should talk to patients, instead of just sending them on their merry way with a cheap CPAP and a shitty mask. "Here's a shitty mask and some random pressure, good luck, and remember to use it for 4+ hours each night and byebye."

If you're unfortunate enough to require a stoma, they don't just randomly attach a bag and send you home. You're sent to a stoma nurse. You're educated on the life changing effects of having to use a stoma. Your nurse will help you find a type of bag that's right for you and can help you deal with complications. But with OSA, we slap a mask on people and don't even tell them that there are dozens of kinds.

Now, I'm sure this all depends heavily on where you are, how shitty the healthcare system is over there, and even who you see at which sleep centre. But in general, CPAP would be very well tolerated if we could help people to optimize their therapy.


Honestly, I'm very sorry that you've hard a horrible experience with this.

My sleep analysis itself was 2 days worth of data that the doctor reviewed. I came in .... the next day? Later on in the day of turning in my at-home test? I forget. Anyway.

My CPAP machine came in about a week later; and I had a full hour or so visit with the doctor as he described each individual step, and we tested out a TON of different masks. I had a follow up visit after ... not very long(?) where we reviewed a different couple of masks because the first one wasn't working. We had another officially scheduled meeting after like 3 months? And, now I see them every like 6 months (admittedly, I schedule these meetings), when one of the masks starts to get old, etc.

I recently bought a travel CPAP as well, because setting up the CPAP in multiple locations is an absolute pain; but even that was a painless process once I said I wanted it (and paid out of pocket because insurance only covers the big machine).

Then again, my sleep apnea is so bad that I would wake up every 1-2 hours at night (I actually use that power to take naps now, lol), and I was starting to fall asleep during everyday activities, so maybe I have better compliance out of the understanding of danger.


My experience was also very similar to the GP’s, and I’ve gone through it twice, at two different sleep clinics. I definitely don’t have routine follow-ups and the one (singular) follow-up I had was useless.

I’ve had to essentially figure it all out on my own. I still find wearing the mask miserable but I don’t have much of a choice because OSA was slowly killing me.

You were lucky to have such attentive care! I wish I could find the same.


I love wearing my CPAP. Not because it's comfortable; it's certainly not. My mask pillows are slowly stretching my nasal orifices, so it's ruining my face aesthetically

I love it because if I even nap 20 minutes without my CPAP, I wake up as if a freightliner had hit me. My apnea is that bad. I have never skipped a single night since being diagnosed 4 years ago.

One night I went to a friend's house and couldn't drive back because I had a couple of beers. I didn't have my CPAP, so I preferred to stay awake the whole night instead of sleeping.

I would probably be dead if CPAP didn't exist.


Yup. This was my experience, more or less. I was lucky enough to do an "at home" test, and so I wasn't given whatever they had on-hand. But when I was prescribed a CPAP the adventure began...

First the insurance adventure. They wanted to rent me a machine at rates that qualify at rates that would violate the geneva convention for war crimes. $327 for the 1st month. $50/mo for the next 10 months. Then I'd be eligible to buy the unit for some unspecified price. Total of AT LEAST $827 in rental fees PLUS whatever the sale cost was. Told them to fluff off and bought a top-of-the-line unit online for $499.

Did my research and got the mask that had the best reviews for someone like myself.

In advance, I had done a little research about CPAP's but I had no realidea what to expect. When I met with the sleep doctor, when he prescribed me the CPAP, he asked if I had any questions. I told him directly, "I don't really know much about them, what should I know?". You'd think whatever spiel he gave me would be a solid basis for life with a CPAP? Hah.

Did my own research on how to get comfortable and used to using it. First night I use it, I wake up in the morning and my chest is ON FIRE. Fortunately I didn't jump directly to heart attack, which apparently a lot of people do. Turns out my chest muscles were just sore - super duper common. A side effect almost everyone has the first few times they use a CPAP. Guess what my doctor DIDN'T Tell me about? And that about summarizes how useful my doc was.

My Primary Care was way more useful than the sleep doctor. But I never tolerated the CPAP well. Because I'm technical, I had OSCAR pulling data the very first night. Reviewed it every day, learned how to get into the CPAP service menu and make adjustments to the system. Still had problems with it and eventually gave up using it. (Note: I did have heated and humidified, played with those settings a lot. Tried several different masks. Putting the mask on or keeping it on wasn't the issue, my body would just freak out in the middle of the night - every night, when wearing it. Even after weeks of trying. My sleep was worse with the mask than without.)

You know who I never heard from again? The sleep doc. It's been 3 years (almost to the day) since I got the CPAP and they've never contacted me. Could I have reached out to them? Yes, but what good were they? They didn't set me up for success. They didn't follow up even one. Their use was to write me a prescription and that's it.


[flagged]


While losing weight can improve OSA, studies have shown that, in most patients, it does not eliminate the disorder.


Ah this old chestnut. It's a load of garbage. CPAP is effective, as supported by many studies and many patients.

Obesity, as mentioned elsewhere in this discussion, is a tricky thing in relation to OSA. Having OSA can make you obese. As for allergies, they can certainly worsen symptoms, but they're only a small piece of the puzzle for many people.

TL;DR; the science supports CPAP.


I am completely shocked that this discussion does more or less not include the issue of noise. I was diagnosed with 100 AHI last year and from day one it was impossible for me to sleep with the noise the mask makes.... The first night in sleep centre with CPAP was hell for me. I couldn't fall asleep even though it was 4 a.m. and I had only slept 4 hours the day before.

At home I can only fall asleep with hearing protection, because of which my ears are permanently inflamed.

The doctor, referring to the high AHI, did not even consider trying other forms of therapy. > You can sleep with hearing protection, right? Then everything is good.

To me, CPAP doesn't feel like a solution. Rather, it is a bad temporary solution with which a lot of money can be made through rental fees.


That’s an astonishingly loud machine - I can barely hear mine. I sometimes lay and try to listen to it, but quickly I find the sound of my breathing makes up the majority of noise in the room.


It is not the machine at all. I have a ResMed AirSense 10 AutoSet. Bystanders tell me that they hear next to nothing. It is the sound that is made in the mask (ResMed AirFit F30i) when I inhale that drives me crazy. Every time I breathe in, it sounds like Darth Vader.


If sounds on your face and in your head are that noticeably loud, you may have obstructions in your ear canal, such as impacted earwax. Does your humming sound louder when you plug your ears, or does it stay the same?


It sounds louder.

I figured, since hearing protection solves the problem, it's not a problem inside the head. Well it might be after all as I am apparently super sound sensitive.


When I was first diagnosed with sleep apnea I asked my doc about alternatives to CPAP because I didn't think I'd be able to sleep with that thing on my face. He sent me to a dentist who specialized in making those oral appliances for Oral Appliance Therapy. I did the adjustments for a couple of months (you move a screw just a bit further every few days which pulls your lower jaw forward in the device). After a couple of months he had me do another sleep test - it was actually worse than it was before without the device. Soon after I got a CPAP and after a 2 or 3 week adjustment period I was sleeping just fine with it.


I’ve done the oral appliance route and it fixed it for me, so it might be a YMMV thing.

I really recommend everyone get tested for it tho, good sleep is the biggest game changer.


This was about 15 years ago and I got the distinct impression that the oral device they gave me was still pretty experimental. I remember making a few suggestions to the dentist for ways it might work better and he thanked me for my feedback. Maybe they're better now?


I tried a CPAP and could not sleep with it. So the therapist went for plan B, which was a dental appliance. Just enough to make my lower jaw jut out a bit. Problem solved.


1000 times, yes. I also couldn’t sleep with CPAP. I tried about 3 different mouth pieces (and tongue extensions that looked like pacifiers) until settling on one that also had a strip that held my tongue down - which was a total game changer.


...i may be stupid but i could have sworn endotyping was already a thing. i talked to someone last week who brought it up. does anyone w more expertise know what the specific innovation is?


I was curious about the term, too. I found this [1], although it focused on asthma. I found it interesting, and the money quote is ”The term asthma is now considered an umbrella diagnosis for several diseases with distinct mechanistic pathways (endotypes) and variable clinical presentations (phenotypes)."

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6411459/


When you see a paper like this, what, if any, path is there to seeking this kind of treatment? I know someone who would likely be interested in this, but I know from prior experience of my own that just trying to reach out to the researchers listed is a long process that can be fruitless. Is there an intended/better way? I know about clinicaltrials.gov, but that’s only helpful if there’s an ongoing study of the thing you’re interested (which is less likely if you’re reading about findings).


If you're in the US, then you have to be the primary driver of your health care. In this case, research oral appliances on your own, buy one and try it. You can use something like a wrist mounted pulse oximeter to gauge its effectiveness. If it works, great.

I'm not familiar with the article's 'phase 2' options like oxygen therapy. There again though, you are able to purchase a home oxygen concentrator on your own and try it out.


Has anyone used an oral appliance off the market? I googled and found this thing called snoreRx. Any recommendations or reviews?

I would prefer to just go get something like this which I can pay for directly rather than have to navigate insurance etc. so if there's a DTC brand that has worked for someone that would be a great plus.


Tried 4 kinds, 3 built and bites and one based on dental impressions.

I would recommend trying out a boil and bite just to see if it helps at all. The cheap ones wear out faster but with SnoreLab and such you can evaluate the difference for the first couple of weeks. They also fall out of your mouth easier and are pretty bulky.

The one I would recommend is VitalSleep, it just seemed to have a nicer build quality and it has adjustable screws for different jaw sizes. No major complaints.

I also had success with SnoreRx but it caused a bit more discomfort, sometimes got stuck on my lip, and I woke up with way worse dry mouth / drooling.

I'm using ClearGuard now which is a way sleeker build. I wouldn't say it works any better or worse but it definitely feels better.

For the record, my best results were with one of those things that stuck on your tongue to keep it forward but they fall out if you look at them funny and your tongue feels pretty beat up so I was concerned about long term effects.


I found three or four different products branding themselves as “ClearGuard”, and they all look pretty much like my old anti-bruxism splint - hard and very uncomfortable. Do you have any links to the one you had success with?


I tried it, and it seems to work.

However, I was informed that lacking professional supervision this sort of thing can permanently damage your jaw after prolonged use. From which I deduced that using one occasionally, e.g. for travel, is acceptable. Still, see a doctor and don’t take safety advice from me.

And be sure to shop around, prices for the professionally made device range from $1100 to $4000. If you can justify paying a couple thousand for a newer laptop then an oral appliance might be an even better investment for you.


From the discussion with my doctor and dentist, I ended having both the cpap for home usage and the dental appliance, made by the dentist, for when I'm sleeping elsewhere. In my case (just above mild apnea), sleep is incredibly better with the cpap, and mildly better with the dental appliance,so the second one is good for temporary measures. And I resent forgetting it when it happens, as a week of poor sleep really affects my behavior.


There’s a reason why this sort of thing is managed through someone medically guiding you and that’s because it’s complex, and there is a lot that snoreRx is not suited for. Unless you feel like you have a firm physiological foundation on which to base your need for some sort of treatment, you’re really doing yourself a disservice. There’s also no harm in discussing this with your doctor either


And as someone who's dealt with the ins and outs of CPAP and sleep apnea, increasingly, I believe that reason has very little to do with safety or expertise.

I'm not saying experts can't be valuable, but there's too much obvious bullshit in this space to take at face value what is supposed to be "best practices."

The price fluctuations, the differing bits of information, the restrictions on who can and cannot get what without a prescruption, etc are often quite absurd (when, e.g. compared to the potential danger of MUCH other OTC stuff.)

Example: that it's made condescendingly artificially difficult to adjust your own pressure in a CPAP. It's a damn fan with a release; if you're otherwise healthy, it strongly appears as if the worst possible dangers here are, your sleep will continue to suck and/or you'll fart more.


I had both obstructive and central apnea and have been totally fine with the CPAP from day 1. Sounds like I’m an outlier. As for the other options, they may not have worked for me.


Worked fine for me, too. I was in bad shape with sleep and it was very much impacting my health. The CPAP was literally a life saver to me. That was in 1/2021 and been using it ever since. I even took it on vacation recently.


I use a nose mask and my CPAP is great. No snoring anymore, the mask doesn't bother me, and I wake feeling much, much better than before.


has anyone used an oral device and love it?

The ones I've tried I always take them out while sleeping without knowing. Been trying for years to find one that I'll keep in. I know you need to keep trying but its never in my mouth when I wake up


Reduction is sleep apnea seems like a likely second-order effect of GLP-1 drugs.


Maybe. I'm not convinced. There is some correlation between obesity and sleep apnea, but skinny people can develop sleep apnea just as easily as fat people. It is very difficult to lose weight (and very easy to gain weight) once you do develop sleep apnea for a variety of reasons, so the causal relationship might even be reversed.

That being said, if you suffer from OSA and have a lot of fat on your chest and around your airway, losing some of that fat might help. Maybe GLP-1 drugs can do that in spite of OSA.


That's a fairly convoluted way of saying "GLP-1 agonists help you lose weight, and losing weight reduces your sleep apnea".


We've known since at least 2016 that GLP-1 drugs would have a massive impact https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4973216/


"Massive"? The intervention group went from a mean AHI of 49 to a mean AHI of 37. While the control group went from 49 to 43. It's something, but it's still very much in the "severe" category, and I wouldn't call it "massive".

Proper CPAP usage would reduce this group's AHI to <2 events/hour.


Agree, but many of us got sleep apnea while skinny.

Definitely interesting to ponder the far reaching changes of GLP-1 drugs though.


I think the solution is a stent inserted into the airway to prevent it collapsing during sleep. This would permanently treat the condition with no side-effects and no daily upkeep.

Unfortunately I have no way of implementing this so I’ll never know for sure.


Such stents exist, like the Nastent [1]. They're expensive, more or less single use, and shoving a tube down your nose sounds very unpleasant. CPAP seems a lot more attractive to me.

Unless you mean a permanent stent, in which case I doubt it'll happen. You need the airway to be flexible (including for speech) in various places. It's hard to pinpoint which bits of airway are responsibe for an individual's apnea. And surgeries, especially in the throat/neck/airway area sound very risky.

[1] https://www.breathewellmedical.com/product/nastent-classic/


Facebook recently started to show me this nasal stent product https://alaxousa.com/how-it-works/ Basically they sell expandable metal mesh tubes that are inserted though the nose and go down to throat when installed. And they are rather expensive - $395 and according to FAQ last up to 18 months.

I’ll ask my ENT about these stents when I’ll visit them next time.




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