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DrAwdeOccarim · 2 years ago
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.

fnordpiglet · 2 years ago
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.

avivo · 2 years ago
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.)
tpoacher · 2 years ago
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.

selimthegrim · 2 years ago
Now I’m curious what the lost English word is.
monkpit · 2 years ago
What’s the antibiotic?
TheCapeGreek · 2 years ago
>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.

klyrs · 2 years ago
Is "mewing" a typo? This sounds incredibly cute.
DenisM · 2 years ago
> 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.

DrAwdeOccarim · 2 years ago
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!
DrAwdeOccarim · 2 years ago
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.

DenisM · 2 years ago
Can you elaborate on “oral small molecule”? Googles failed me.
taeric · 2 years ago
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.

gmiller123456 · 2 years ago
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.
elric · 2 years ago
Once you're above 15 cmH2O, you probably qualify for BiLevel, which some people tolerate better than CPAP.
thedougd · 2 years ago
See if you can turn on EPR where it lets off the pressure during an exhale.
jnovek · 2 years ago
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.

reilly3000 · 2 years ago
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.

callalex · 2 years ago
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.
mfgs · 2 years ago
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.

TheBlight · 2 years ago
Is it really difficult to understand why people don't like sleeping with a mask that makes noise?
taeric · 2 years ago
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.

hindsightbias · 2 years ago
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.
JimtheCoder · 2 years ago
If you are asleep, can you hear it?
wincy · 2 years ago
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.
MagicMoonlight · 2 years ago
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.
01100011 · 2 years ago
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.
hindsightbias · 2 years ago
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.

taeric · 2 years ago
Agreed, and one does not preclude the other. :D
salzo · 2 years ago
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.

lcuff · 2 years ago
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.
taeric · 2 years ago
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.
Llamamoe · 2 years ago
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
Tarsul · 2 years ago
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... ;)
Aurornis · 2 years ago
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.

stavros · 2 years ago
Agreed, I know when I've crossed the 98kg mark because I start snoring.
sheepscreek · 2 years ago
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!
king_magic · 2 years ago
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.

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themadturk · 2 years ago
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.

sxg · 2 years ago
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.
cocoa19 · 2 years ago
> 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.

elric · 2 years ago
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/

Aurornis · 2 years ago
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.

elric · 2 years ago
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.

ShakataGaNai · 2 years ago
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.

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