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Comment by elric | Hacker News Reader

I'll keep saying it: sleep apnea is vastly underdiagnosed and undertreated. I had so many weird symptoms for so long, which all gradually started to disappear as I started to get my sleep apnea treated.

Unless you're fat, doctors will rarely even consider the possibility. And once you do get a polysomnogram, the usualy course of action is to throw a CPAP machine at you and send you on your way, without much followup. This, predictably, leads to abysmal compliance and the perception that PAP-therapy is awful or innefective.

And while I'm on my soap box, I really wish the PAP-manufacturers would dislodge their collective head from their collective arse. Trying to lock down machines and preventing patients from accessing their data (and settings) is plain evil. And maybe put some money into R&D for better machines? There's literally hundreds of millions of people with sleep apnea, there's bound to be a market for better devices ...

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I'm not so sure, my experience tells me differently..

I am a thin guy with very low body fat. As soon as I told my doctor that I had woken up 2-3 times with my soft pallet dry & semi-collapsed, also that I would wake up regularly with a dry mouth, he immediately sent me for a sleep test. I went and did the test and the results were that I had mild sleep apnea. The sleep doctor told me that they were ordering a CPAP machine for me. I asked why I needed it for mild apnea and also told them I wouldn't use it. They ordered it anyway and told me to take the issue up with my doctor.

While all this was going on I was in the process of reducing the amount of meds I took (bad accident in 2010). I also started reading up on & studying sleep apnea. One of the first things I learned, and that worked, was keeping my mouth shut during sleep (many ways to accomplish that). The other thing I learned is that Big Pharma/FDA does a horrible job of listing medication side effects. I say that because "causes sleep apnea" was not on the list of side effects for carbamazeine (used for my peripheral neuropathy). As soon as I stopped the carbamazepine the apnea symptoms vanished. I have no need for a CPAP, it was ordered and I've received many calls about it, but there it sits at the sleep doctor's office..

This seems to jive exactly with what OP was saying.

In that they diagnose you with apnea, throw a CPAP machine at you, and then do no follow up.

I’m curious what part of this you are saying is not aligning with OP?

I'm not fat. I was immediately diagnosed and rushed to a sleep doctor.

I had the same experience.

Sleep study was a complete joke - I slept in a creepy hotel like room in a clinic for maybe 3h total. Uncomfortable and totally different sleep then at home.

AHI of 5, given CPAP with no follow up. It really felt like this sleep Doctor got paid to hand out machines.

Hacked the settings, used it for 8months then quit cold turkey as a test. Felt the same.

My sleep improved more from:

Drastically reducing alcohol, smoking, weed. Septum correction and tonsil removal. Sleep alone in bed in complete darkness in a cool room.

> The other thing I learned is that Big Pharma/FDA does a horrible job of listing medication side effects. I say that because "causes sleep apnea" was not on the list of side effects for carbamazeine

Having designed and run clinical trials, I think your assertion based on a single experience is unreasonable.

Companies are very interested in unexpected events, particularly bad ones (called “adverse events” in the jargon). Viagra was “discovered” because of an unanticipated side effect of a drug being tested for a heart disorder.

That long list of side effect warnings? The companies love that list because it reduces legal risk (and marketing risk: doctors will tell patients what to look for and/or will avoid giving it to patients at risk of effect X).

While it seems plausible to me that sleep apnea could be a side effect of a drug like carbamazepine (though it’s not a benzo) it was not reported to any statistically significant extent.

since you have to report all AEs, the FDA will, in some cases, zero in on one that was reported at a minor level for additional study, because someone in the review panel thought worthy of investigation due to some scientific issue in their specialty. Drug companies hate that of course, but that’s one reason why there’s a review panel rather than a single reviewer.

While I respect your expertise in the field, I disagree.

>Companies are very interested in unexpected events, particularly bad ones (called “adverse events” in the jargon). Viagra was “discovered” because of an unanticipated side effect of a drug being tested for a heart disorder.

Tell that to Moderna and Pfizer. They, nor the FDA, have shown any interest in adverse events reported by both patients and doctors to VAERS [1], unless whatever hypothetical minimum number of people report it. I've had, as well as Dr. Greg Poland [2], a pretty severe adverse reaction to the mRNA vaccines but our problems remain unaddressed because not enough people have reported it, science knows little about our reaction, or it doesn't monetarily benefit anyone (liability or profit). As for the Viagra discovery, it was a monetary benefit.

Scientists and researchers in the medical field need to realize everyone is different and we have different reactions to various drugs. I guarantee you that carbamazepine was causing my apnea problems. It also caused two other adverse reactions that are not listed as side effects.

Now that I think about it, your entire comment screams pharmaceutical marketing to me.

[1] https://vaers.hhs.gov/ [2] https://www.mayo.edu/research/faculty/poland-gregory-a-m-d/b...

edit: mRNA

> Scientists and researchers in the medical field need to realize everyone is different and we have different reactions to various drugs.

You really think that they do not realize this? The whole reason for phase 3 trials is to have a candidate drug tested on a sufficiently large and diverse population that represents the treatment population in order to look for these very variations.

If there is anyone who doesn’t want to recognize this, it would be the actuaries at the insurance companies.

> I guarantee you that carbamazepine was causing my apnea problems.

I never suggested otherwise. I merely said that a statistically significant number of such cases did not show up in trials so it wasn’t listed as a side effect for doctors to look out for.

Your comment about vaers doesn’t make much sense either. Vaccines have absolute insurance coverage provided by the government so that companies will make them at all. Vaers is a postmarket surveillance system for the government. Both Moderna and Pfizer’s Covid vaccines have been through the full phase 1,2,3->NDA process (i.e. no longer under emergency use authorization) including ae surveillance.

I followed your route. Got the machine, hated it, didn't accept it.

I ended up getting a "boil-and-bite" mouthguard thing that kept my lower jaw from slipping backwards when I sleep.

That helped for about 6 months, but eventually I would wake up throwing up in my mouth. What happens is that you fall asleep, your throat collapses, you go to take a breath and since you can't bring in air through your mouth, instead you try to bring the stomach acid from your stomach up into your lungs.

eventually went through the hassle of getting a machine, found the nasal pillows mask was *much* better than the default mask, and have been good.

Two relatives in my family who are highly symptomatic were turned down by their primary care when they asked for a sleep study. One for being too skinny and the other for being "too cheerful".

If you want to criticize the pap manufacturers, there's a lot more than just that too. There's a shortage of machines because of the negligence of the Philips company. Documents have shown that they knew their machines were causing problems for years before finally doing a recall.

This is a huge problem! If they are in the US most insurers allow you to go straight to a specialist. Unsure if that helps them but for anyone reading this, if you can, go straight to a sleep specialist. My treatment was delayed for 3 years because I didn’t snore (another common reason for rejection of a sleep study).

I recently did a sleep test because i was really sleepy and tired during the say an my apple watch is telling me i have too many wake ups. My AHI score is 33 which is quite bad. I immediately got A CPAP (auto) and after a week of using my AHI is now 1.3. And my brain has become so clear and alert. I can't imagine how I lived before once i got the taste of normal brain.

What symptoms did you have, if one may ask?

(Not OP)

I would call it the no booze hangover. Sometimes the symptoms would be like a mild hangover. You wake up with a headache, still tired, and a little bit of a “what happened last night?” vibe.

Except that “what happened last night” was drink plenty of water and go to bed at a reasonable hour.

A wide variety of non-specific things. The most frightening of which was palpitations and skipped beats. Then panic attacks. Occasional ice pick headaches. Brain fog. Strangely, daytime sleepiness was not a symptom for me.

>Trying to lock down machines and preventing patients from accessing their data (and settings) is plain evil.

Which means it's profitable and they will double down on it

How did you get it treated? I've heard of the machines for this, but its not a very appealing option. I've also heard of exercises for neck/throat/jaw region, but do they work?

In regards to your last question, Yes, the exercises can/do work with helping to strengthen your throat area. Tying your jaw shut at night with a scarf, or taping your mouth shut, works as well. Another thing I learned, through a comment found here on HN, is how to force your sinuses to open up. Even if you are congested, close your mouth and try to breath through your nose. Eventually (usually not long) your body's need for oxygen will take over and open up your sinuses. Hope this helps but remember that I am not a doctor.

With a CPAP machine, a lot of patience, OSCAR [1], and the help of the kind people over at Apnea Board [2].

I was given the machine, which was titrated to the wrong pressure settings, with the cheapest mask that was too small for my big nostrils. If it hadn't been for the fact that I had a friend whose life was greatly improved by CPAP, I probably would have thrown in the towel on the first night. But I stuck with it, asked for help on Apnea Board, tried to learn as much about apnea and PAP-therapy as I could, and eventually got to a point where I'm pretty happy with it.

[1] https://www.sleepfiles.com/OSCAR/ [2] http://www.apneaboard.com/forums/

isn't sleep apnea usually related to another problem, like diet (most of the time), or smoking/drinking, another is the position of your jaw (the teeth shouldn't touch)

...the teeth absolutely should touch, and besides, that's guided by tooth contact points and not habit/lifestyle factor. Sheesh.

facts https://vadentist.com/a-hard-nights-sleep/#:~:text=You%20may....

It's a blanket term that describes a condition where your airway collapses while you sleep, but there are lots of causes. Smoking, drinking and other substances can cause your muscles to relax and bring on apnea, as can being overweight. Lots of body builders suffer from it as their necks become developed.

The biggest "cause" once you remove factors like alcohol is heredity. You get the shape of your face from your parents, why not the anatomy of your airway as well?

oh shape right, like for bulldogs (artificially created by humans)

why treat “sleep apnea” and not the actual root cause?

if you’re not fat and have sleep apnea, the other major cause is alcohol consumption/smoking.

seems odd to treat the symptom eg sleep apnea and not try to cut out alcohol and smoking and then reevaluate.

Doctors aren’t typically incentivized to treat things with lifestyle changes. For better or worse, that’s something you need to self advocate for.

That's because nobody listens, doctors have more or less given up. People want meds, they always want a quick fix not to exercise and eat better

that isn’t true. i’ve never received nutritional advice from a doctor, and if i did i doubt it would be much more than “eat fruits and veggies and exercise”

the “official” food pyramid put out by the government still tells people to eat mostly refined grains and carbs.

Your statement is not at odds with my claim, not to mention eating more fruits and veggies is an improvement for 85%+ of Americans so yea that's actually solid advice. I don't know why you think it isn't

Most Americans are also sedentary and don't exercise at all so again, even just walking more is an improvement for most people.

All that being said, I also have not had a doctor who didn't first ask me what my diet and exercise are like before making suggestions

a doctor giving generic “eat fruits and vegetables” doesn’t mean anything. it’s just generic words an 8 year old could tell you

you don’t take nutrition in medical school. doctors wouldn’t be able to prescribe a more personalized nutritional plan even if they wanted to

whether or not they say this or don’t won’t change anyone’s life

Eating fruits and vegetables is not typically good medical advice when we’re talking about acute issues.

Advice for a healthier lifestyle, more energy, longevity, etc? Yes of course. Advice for sleep apnea that’s already set in and affecting a patient nightly? Not at all.

I wasn't aware that sleep apnea is an acute issue, I could have sworn that's chronic

I am not a doctor so it’s entirely possible I am misusing a term here. But afaik chronic is something that cannot be cured. This is not the case with sleep apnea. It just can’t be cured with vegetables.

A condition is described as acute when the onset is sudden and duration is short, a condition is chronic when it persists over a long period of time. It has nothing to do with curability

One of the major causes of sleep apnea is being overweight, so it can definitely be helped with a change in activity levels a diet modification

https://medlineplus.gov/ency/imagepages/18126.htm

> the “official” food pyramid put out by the government still tells people to eat mostly refined grains and carbs.

Apparently this isn't true anymore. The Food Pyramid was replaced with the current "MyPlate" model in 2011 [1]. That said, grains still feature prominently on the plate and the details say up to half of those can be refined [2], which still seems high.

[1] https://www.health.harvard.edu/blog/crumbling-confusing-food...

[2] https://www.myplate.gov/eat-healthy/grains

Maybe in part. But it’s also because medical practices are for profit enterprises and don’t make any money by telling patients to stop drinking alcohol, but make a bunch of money charging out CPAP machines to insurance companies.

Doctors “have given up” implies there was a time when doctors would dish this stuff out as a treatment plan. At least in the US, I don’t know if that’s ever been true.

Believe it or not, most doctors don't own their own practice and don't make more money for giving out treatments. Most of them did get into the field because they want to help people and it's a pretty small minority that profits off handing out treatments

Believe it or not, I am not blaming doctors. I respect doctors, and go to them frequently. But it's useful to go in with open eyes.

Even doctors that do not own their own practice are incentivized by the people who do own the practice. In the same way that a store clerk is incentivized to sell high margin items over low margin items. Or a Facebook engineer is incentivized to get users to engage in unhealthy social media addiction. There's nothing wrong with the individuals, its the incentive system that they are operating within.

What is the evidence for your claim? As far as I'm aware, insurance shoots down as much as possible

When a physician works for someone else's practice or hospital, generally they're pressured to see as many patients as possible

My claim is as simple as the claim that for-profit enterprises are incentivized by profit and will prioritize profit-making activities over not-profit-making activities. If you have even a passing belief in capitalism then you have all the evidence necessary.

Every single doctor (in the US) profits off of handing out treatments. It's a pivotal part of how the economics of medicine works in this country. The entire thing would, quite literally, fall apart if doctors/practices did not profit from handing out treatments.

Note that I am not claiming that doctors are out there prescribing medicine they shouldn't be prescribing just to line their pockets or whatever...you seem to be convinced that I have some sort of negative view of doctors and I don't. What I am saying is that they operate within a system that literally requires them to prescribe medicine in order to stay in business. So given the option of "prescribe medicine, bill insurance, and see the next patient in line" or "suggest a lifestyle change and work with the patient over the course of months and years to monitor those changes"...they all choose the former. AND THAT IS FINE. But to be blind to it is simple ignorance.

Hell, it's what most patients want. Most people go to a doctor for medicine, not lifestyle advice.

> generally they're pressured to see as many patients as possible

That is because this is what maximizes profit for the parent company. It is a business like any other.

Doctors get paid for seeing patients, not specifically for giving out treatments and I'm not sure where you got that idea from

Yes and engineers only get paid for writing code. The money just appears from the employer. I honestly can’t tell if you’re just being purposefully obtuse.

Engineers get instructed to implement features, doctors do not get instructed to hand out treatments

Bit rude of you to assume that I'm apparently an alcoholic or a smoker.

Nice illustration of my point that public awareness on sleep apnea is lacking.

Good luck figuring out the root cause of sleep apnea. Years of research hasn't turned one up. There's a wide variety of contributing factors (including weight, alcohol, asthma/COPD). But there's also plenty of fat asthmatic drunks who don't have sleep apnea. It's obviously not as simple as you're making it out to be.

Do you have trouble breathing through your nose only? Other issue is people breathe through their mouth instead of nose. Get some nose strips and tape mouth shut and train yourself to breathe through your nose.

Please stop trying to diagnose me on HN without any context or background information. It's not helpful, and it's extremely condescending.

No one cares specifically about _your_ diagnosis, obviously we don't know you. You put yourself up for discussion when you posted your stance. You yourself called it a soapbox. Now people are using you as the obvious example and satisfying their curiosity.

According to your initial post, you should be glad for the questions so that you can combat misconceptions.

Did it ever occur to you that sometimes the structure of people's face makes it harder or easier to breathe through the nose exclusively?

Unless you're a doctor, you should probably stop giving unsolicited medical advice on the internet.

no that is not why “millions” of people have undiagnosed sleep apnea

This sounds quite dangerous if someone has apnea.

> Good luck figuring out the root cause of sleep apnea.

Inadequate jaw development. We're so used to people having recessed jaws that we're just used to considering several mm of recession as a normal, non-recessed face, and we don't even think about the fact that most kids have jaws so tiny that their teeth don't fit properly and they need braces.

This causes both narrow, collapse-prone airways, and tiny nasal cavities that have high airflow resistance and deviated septums.

Both age and obesity largely just convert people from waking up out of airway collapse to overt apneas.

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