Flipping the model presents a new way to treat sleep apnoea
news.flinders.edu.au
news.flinders.edu.au
Sorry for the long post, but my advice to all is see an ENT if you need a CPAP and are already thin.
“AD109 targets two neurochemical pathways which control the upper airway musculature during sleep via a dual mechanism of action”
Speaking of chin straps - I could never get one to work, but “Caldera Releaf Neck rest” collar worked a treat.
It's basically a 4 inch wide soft elastic band with velcro on the ends.
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.
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.
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.
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.
Also, some people have parters in the room where they sleep and the noise might bother them as well.
And I have a few reasons more,if you really need.
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.
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.
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.
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.
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.
I’ve also been experimenting with a slightly elevated mattress recently, it seems to help quite a lot for my OSA.
https://www.amazon.com/stores/page/20D27239-CBE7-4150-BEA7-A...
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.
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.
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.
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/
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.
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.
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.
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 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.
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.
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.
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.
I really recommend everyone get tested for it tho, good sleep is the biggest game changer.
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.
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.
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.
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.
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.
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
Proper CPAP usage would reduce this group's AHI to <2 events/hour.
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.
Definitely interesting to ponder the far reaching changes of GLP-1 drugs though.
Unfortunately I have no way of implementing this so I’ll never know for sure.
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/
I’ll ask my ENT about these stents when I’ll visit them next time.