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Comment by Llamamoe | Hacker News Reader

The problem with CPAP is that 40% of patients don't tolerate it even for the 4h/night defined as treatment compliance, while most of the rest use it less than the full duration of the night, with studies demonstrating that treatment compliance depends on efficacy.

And this is for traditional OSA in men - people with Upper Airway Resistance Syndrome(mostly identical mechanism as OSA, less oxygen desaturation, more arousals, slightly different symptoms) which is how SDB tends to manifest in women and younger people, the problem is way, way harder. In a community I used to hang out in, I'd say maybe 1 person in 10 actually benefitted from CPAP/BiPAP more than it hurt their sleep quality.

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I never had a problem with adopting CPAP. It's been transformative for me, sleep quality is literally 10 times better than without, I wake up feeling awful if I have a nap without it. Why would someone keep a mask on for 4 hours, then take it off? does not make sense to me.

Congrats to you. 40% of people probably wish they could tolerate it.

restlessness, semi wakefulness doing dumb actions.

also, I think the default cover-the-whole-nose mask for sleep apnea isn't really good. Maybe people pull it off. I found the nasal pillows a significant improvement (maybe that's what P10 is?

It took me a year to get used to my mask, and I use a pillow mask. The difference with and without is night and day, yeah, but man adapting fucking _sucked_.

I know someone who snored like crazy, would quit breathing at night and was diagnosed with sleep apnea. She got a CPAP and tried to use it for a year. Snoring was worse although it helped her not stop breathing. But it gave her some form of pneumonia or some such and she began coughing all night! Then it spread to daytime. Then everyone around her started getting the cough. I had to take antibiotics to shake off the infection I got from being around her.

Believe me the introduction of CPAP into this person's life was a f*ing disaster for her and everyone who was around her that year! She went to see ~11 doctors, finally quit the CPAP on her own, without any doctor's suggestion. Things got better immediately. Then out of desperation she went to a Chinese herbal doctor. Somehow after that the cough began to die down. I make no claims for Chinese herbal cures - I'm amazed anything worked after that year.

While apnea is real, CPAP looks like a scam to me, for the sleep clinics and especially for the CPAP makers and suppliers.

As someone who has used one and who has family members that use one, I can tell you they 100% work and it would be insane not to use one once you discover how different your sleep is. You immediately notice a difference, and there is no question the treatment is effective.

Your claim is that CPAP gave this person a _communicable_ chest infection, which was then cured by herbal medicine? How could that possibly happen unless your local distilled water supply was contaminated with tuberculosis bacteria?

Improper cleaning maybe. People get Legionnaire's from shitty motel rooms with AC units that don't drain correctly, so it isn't that farfetched for a closed loop respirator full of moisture to harbor nasty pathogens all the same.

Yes, you can get infections from poorly maintained CPAPs (or respirators -- are those a scam, too?) but that's not going to spread to your whole family.

What part of "I make no claims for Chinese herbal cures" did you not understand?

It just underscores how batshit crazy people are and the low quality of some so-called "medical cures". Sometimes that includes "snake-oil salesmen", a category into which I now put CPAP vendors.

> While apnea is real, CPAP looks like a scam to me, for the sleep clinics and especially for the CPAP makers and suppliers.

100% not a scam. Was life changing for me, and the two other coworkers I know who are on it.

*"100% not a scam. Was life changing for me, and the two other coworkers I know who are on it."&

Yeah, but so is Jesus to some people.

Well... instantly measurably dropped my blood pressure and stopped me nodding off to sleep while on the way to and from work. But I guess Jesus performs all sorts of objectively measurable miracles too.

I would say that CPAP is more of a Holy Spirit miracle, but why place limits on that?

What? No, CPAP makes my sleep measurably (literally) better. But yeah, different people react to them in various ways. A relative couldn't keep hers on all night for a month, while I put mine on the first night and slept like the dead, better than I had in years.

That said, I find the pneumonia story a little tough to swallow. Correlation is not always causation. CPAP machines don't spontaneously spawn new diseases. Does she use the humidifier? What water does she use? Does she change it every day?

1) People who are not fully awake often do things for no clear reason -- I regularly wake up finding that I have no memory of removing my mask after 2-5 hours.

2) If you're prone to nightmares, waking up with something covering your face that causes bizarre sensations when you try to breathe through your mouth or speak may disturb you enough to tear it off.

I pretty regularly take my socks off while sleeping and occasionally take my pants off, no way is my sleeping self not going to take a mask off.

> Why would someone keep a mask on for 4 hours, then take it off?

I started CPAP about a decade ago and in the beginning I would take the mask off in the middle of the night, while sleeping-- completely unaware of what I was doing.

My doctor said this is common with many patients.

Frustrated, I started taping the mask to my face with medical tape.

I only stopped taping up my face when I was able to make it through the night without waking up to my sleeping self trying to rip the mask off.

> 40% of patients don't tolerate it

Tough to know how much of this is patients not being able to tolerate vs doctors giving people barely calibrated machines and next to no support or training. It’s very common to be given your cpap at the default pressure range (4-20). When I told my doctor I still wasn’t sleeping, she offered to refer me to a shrink.

I was in the hospital for a month and was specifically prescribed BiPAP while I was there. I was completely unable to tolerate it and the technicians sent up to adjust it for me did not know how to access the clinician settings -- they just fiddled with the patient-facing controls, which are very limited. These were people who I am sure have lots of experience working on respirators and oxygen, but at least three different people clearly had no idea how to begin adjusting a ResMed BiPAP. Eventually, I was strong enough to get out of bed and adjust the settings myself, and finally I could get a good night's sleep.

That is to say that I agree: basically nobody outside of sleep clinics seems to know how they work, and even they don't provide much more expertise than you can get from publicly available information and tools.

Sounds right, and even with the clinical settings, you need to experiment. It took me a year of obsessing over my OSCAR data to dial it in.

I’ve started with a cpap recently and my biggest issue is that it interferes with snuggling with my wife, that may seem trivial but it can have a big impact on my mood

I will keep beating this horse to death, but the vast majority of those who cannot tolerate CPAP are improperly titrated and/or have a mask that isn't right for them and/or are having leaks. Often all of the above.

That 4 hours is just another symptom of a medical establishment that's not interested in treating patients, but is only interested in numbers. If you want maximum benefits from CPAP, you have to wear it all night every night. If you can't do that, there's a problem that needs to be addressed.

It would be more accurate to say that 40% of people who are offered CPAP are not receiving proper guidance and followup. This is not their fault. This is not CPAP's fault. This is one of medicine's biggest failures.

And yeah, UARS is an entirely different shitshow. It's finally starting to be recognized, hopefully that will lead to improvements for patients.

I don't know why you're so insistent that anybody who can't tolerate CPAP its a titration or fitment issue. I've talked to people who have loads of interaction with sleep doctors, mask fitment specialists, trying different CPAP/AutoPAP/BiPAP/auto-titration settings and I'm one of them. I'm glad medical science is pursuing other treatments that can help the 40% who can't tolerate CPAP and maybe help some of those who don't want to be tethered to a machine every night.

Because it usually is an issue of titration or mask fit.

There are some cases of people have complex sleep apnea, or having awfully non-compliant airways that require uncomfortably high pressures. But the vast majority of people can tolerate PAP just fine.

There are certainly improvements to be made. And thankfully some of them are being worked on (e.g. VCOM or KPAP). And some people could benefit from bilevel or even ASV, and it's a shame that those are often way harder to get. But even if we're being generous, the article's suggestion of 22% of patients who can get by on just the drugs is incredibly underwhelming compared to PAP.

>Because it usually is an issue of titration or mask fit.

I think it may be in some cases, but not the majority. Talking to my sleep doctor recently I don't think she thinks so either. She starts everyone out on AutoPAP with 5-20 ramp as the standard now. Either way I think people who can't tolerate CPAP will welcoming having a drug as an option before more extreme measures like the Inspire device and Maxillomandibular advancement.

What are the side effects of cpap and does it cure sleep apnea or do you have to use it forever?

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