Night of the living brain fog dead or how I hacked myself better via open source | Hacker News Reader

Night of the living brain fog dead or how I hacked myself better via open source

decodebytes.substack.com

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> The morale of the story, you need to sometimes tackle your own health and take matters into your own hands

The frustrating thing for me is that doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. It's not anti-science to take your health into your own hands. It's anti-outdated-underfunded-medical-systems.

He recognized the signs of sleep apnea and pursued treatment with sleep apnea devices, getting confirmation of the problem with the help of his doctor. The DIY part was largely related to pushing the process forward, not doing novel experimentation.

Nobody would call that “anti-science”.

Anti-science would be something like ignoring the common treatments and trying to solve the problem with natural supplements or something. Going this route often delays people from getting to proven treatments because they spend a long, long time trying underpowered or unproven things that don’t work.

>He recognized the signs of sleep apnea and pursued treatment with sleep apnea devices, getting confirmation of the problem with the help of his doctor.

It actually baffled me that it wasn't his doctor who picked this up. A person waking up several times with confirmation from someone sleeping besides him that he has stopped breathing, I'm no doctor and gee maybe it's because there are a few cases in my family but that screams "sleep apnea" to me.

Especially now. Sleep apnea is a big cash cow for medical networks.

Normally if you mention a problem even somewhat in the neighborhood of sleep apnea you’re shoved into the funnel for sleep studies and CPAP devices.

Yeah, I said "I caught myself stopping breathing while I was drifting off to sleep, and my wife believes it has happened since" to my primary doctor, and got a referral to a specialist, to whom I repeated that statement, who referred me to a sleep study.

That first meeting with the specialist was a profound waste of money, but at least it got me in the door. Since then, the CPAP has helped some, but it is just as likely to wake me up too early (I toss a lot in my sleep and it doesn't always stay sealed).

As it should be, honestly. Not getting quality sleep is a huuuge health risk, and can be solved very simply. It’s a wonder medical networks aren’t handing CPAPs out for free.

Absolutely no cases in my family, and it's still screaming sleep apnea. I mean, apnea literally means "stops breathing".

A doctor who doesn't recognize that is maybe not the best possible doctor. To put it very mildly.

Exactly, I was thinking this was about sleep apnea after the first two paragraphs.

On the flipside, there are also a small selection of unproven treatments that work better than standard care.

The standard of care doesn’t mean it’s optimal for everyone. Doctors will often explore alternative treatments when the first-line measures aren’t working optimally.

It’s a mistake to ignore proven, first-line treatments and skip straight to less proven alternatives, though. Some people have built an anti-mainstream bias that puts too much emphasis on the unproven, alternative treatments while downplaying the most proven treatments.

The biggest mistake anyone can make is to blindly jump into medical treatments first when common home treatments with lower side effects can handle the job. If you do that you'll be in blood pressure meds by 35 instead of reducing your salt.

Doctors do often recommend those - they just won’t touch anything that might requires FDA approval and doesn’t have it. I have indigestion issues and it’s my doctor who recommended a supplement with peppermint oil and castor oil. Worked like a charm for me. I had tried a whole suite of meds prescribed by my GP but the GI specialist went straight to the supplement.

Can you share an example of an unproven treatment that works better than standard care?

Getting to the root causes is often preferable.

For example if your air quality is bad and/or ventilation is bad and may cause sleep apnea (like high CO2 concentration often makes you feel drowsy).

But the seller of CPAP machine will not monitor your air environment.

With medical problems there are often multiple factors, and when a solution is found that fix the symptoms, care is no longer taken to find the other causes, specially if the solution is generating recurring revenues.

I used to have pretty bad sinus. I used to take antibiotics for 10 days a month and would be good for 20 days and this goes on each month. After 6 months, my immunity has gone to shit. The doctor recommended clearing out my sinus by a surgery but apparently that doesn't solve the root cause. It can happen again and again.

I tried multiple doctors, treatments, tips etc and etc nothing worked. I finally visited a homeo doctor who diagnosed it right. It's deviated septum which is causing sinus infections because of regular coconut water intake. I just stopped drinking coconut water and it's been 10+ years and not another recurrence of sinus so far.

Proper diagnosis is hard and requires skill. The OP figured it by himself and in my case, someone did.

One of the issues with specialty medical care is that you aren’t seen as a whole person.

The orthopedic guy sees you as a candidate for surgery a, b or c. He may miss that something else is going on. A treatment may be “unproven” for a symptom, but perfectly acceptable for a root cause.

I can come up with examples but know its ironic to try to proof treatments that are, scientifically or medically, not verified.

Theres diet, sleep, exercise. Which require no studies to know that taking better care of yourself will help you regardless of the pathology.

Then there's the somewhat strange case of orthodontist John Mew, who advocates for setting your tongue posture to the roof of your mouth in order to close the jaw properly, to prevent standard treatment of various braces, teeth alignment issues and corrective jaw surgery.

Other strange therapies that I've come across that seem unhealthy but have some backing are intentional sleep deprivation to improve depressive symptoms. prolonged fasting to reduce scar tissue. Or one I personally use alot, extremely cold showers after allergene exposure.

There are alot of silly things the human body can do that at first glance might seem irresponsible or dangerous but are about as dangerous as people in the 1900's might imagine airplanes would be.

One more thing I might add, standard care does not mean 'in your best interest' some standard practise might be too cruel to accept, like chemotherapy. Even though its proven to extend your life, it might not be proven to be in your best interest.

Adoption of new methods takes a considerable time in medicine. Some methods may be considered unproven by the majority but are being adopted by pioneers. Now if you could distinguish pioneers from quacks easily…

Rinsing with baby shampoo and iodine for the treatment of sinus inflammation.

Vs antibiotics and/or saline rinses.

Research is currently being done and this is of course anecdotal (I mean, if it wasn't it would be proven treatment, wouldn't it?)

That said, my depression was improved more by a couple of magic mushrooms trips than by more than a year of psychology. The results have been so good that it feels wrong to share it, makes it sound like some miracle stuff and I think any depressed person would go for it in a heartbeat completely ignoring risks.

Reducing salt vs taking blood pressure meds.

Aloe vs cortisol for skin issues.

And if they survive rigorous testing, they become "standard care". Sience is the borg of all ideas, the good ones get integrated, the bad ones stay outside. Opposition to the borg is appreciated, as it raises the assimilation value.

If they're unproven, how do you know they work better than standard (=proven) care?

Unproven doesn’t mean ineffective. Cranberry juice isn’t FDA approved to help with urinary tract infections, but is frequently recommended by urologists and works. Another example is that isopropyl alcohol, which is an effective disinfectant, doesn’t meet the EPA standards for being a pesticide… which is because it’s existence predates the process.

It’s expensive to go through that rigorous process, and there’s no economic incentive to go through that for something that isn’t patentable. In the case of cranberry juice, it’s not sold as medicine. In the case of alcohol, you can buy very expensive wipes that have a certification if you need it for some industrial process.

There is a certain weight to experience and prevalence, you can go wrong, sure, but it's often worth it to try.

Parachutes aren't scientifically proven to work on humans.

...

That's not the flipside, that's the "exception to the rule". Of course the system's not perfect, but people don't live way longer now because our medicine is worse than before...

"The exception proves the rule" refers to a logical/legal situation where a rule has been posted with specific exceptions.

A sign that says "no parking on Sundays" logically implies that parking is allowed all other days.

The concept you're looking for is closer to "any statistical group has outlier cases".

I did not use the word "proves"; the "exception to the rule" fallacy is when you see a singular case violating some rule and you use that to assume the rule doesn't hold in general, or you make generalizations from a singular case.

The commenter I'm replying to is advocating for homeo- / naturo-pathy because of some statistically insignificant and probably actually not causally based relationship they've witnessed, which is generalizing from a ~singular case

Prove it.

Trying things is science, and any experiment can be retried to see if results replicate. People who aren't scientists or don't have time or equipment to be scientific about a thing have to decide where the balance lies, between how much science they're capable/willing to do vs. how many assumptions they're willing to make based on other people's science.

There's no belief system called science and you can't be pro- or anti-science. Science ironically is pretty questioning and skeptical, so questioning some piece of science, is scientific.

Certainty and the temptation toward it is your enemy if you would maintain a "scientific" worldview. Politics demands certainty, simplicity. Fascism, especially so.

> There's no belief system called science

There are two belief systems called science.

The less common one is the one you outline immediately after denying its existence: it's about asking questions and trying to establish evidence-based models to make predictions and testing/validating the assumptions in those models. It's probably more accurate to call this belief system empiricism.

The more common one is a deferral to expert authority, where experts are designated by certain established scientific institutions. Because many lack the time/will/ability to independently verify claims made by authoritative figures, this deferral requires substantial trust in these institutions to come up with good answers.

This second belief system is what most people mean when they label themselves or others as pro- or anti-science. Paradoxically, even though the authoritative institutions ostensibly produce information empirically, expressing skepticism and asking questions is often perceived as a lack of faith, and therefore anti-science.

Fine but it's an approach to knowledge, not a belief system.

I feel this is distinction without a difference. All belief systems are approaches to knowledge and information at the end of the day.

The institutional science belief system really has a lot in common with religion. In fact the instutions we now trust to train scientists and dispense scientific information largely grew out of instutions with a major focus to train clergy and dispense religious information.

Empiricism is not really in that same subcategory, but it also rests on some set of ultimately unverifiable assumptions. In fact, I'd argue that one of the central assumptions of classical empiricism, that all systems are locally deterministic, is demonstrably false. The early quantum pioneers had a hard time coming to grips with this and there are still several competing interpretations of QM. This huge shift still hasn't fully percolated to many other fields of science, which often still assume local determinism and pretend QM doesn't exist.

isn't that the scientific process though? trying things to see the results sounds like the definition of experiment to me.

Exactly this. I've also dealt with the whole CPAP thing, and the extent to which the whole industry is obviously infantilizing-for-profit is infuriating. Over the years, it's gotten increasingly difficult to just "buy the supplies yourself," (aka easily and/or cheaply) and the extremely condescending "reasoning" we get is "oh, it's medical equipment and therefore dangerous so we get to control it."

And here, having done it for years, I can tell you this is nearly absolute BS. It's a hose hooked up to a fan that softly blows somewhat filtered air through a tube. That's IT. There's no remotely signficant way that this thing will hurt you even if used improperly; especially as compared to so much other dangerous OTC drugs and/or medical equipment.

One way that you can identify rent-seeking disguised as safety is to compare the degree of risk considered acceptable across industries. For example, you can buy and use a chainsaw and similarly-dangerous power tools with basically no constraints whatsoever. But chainsaws are definitely more dangerous than CPAP machines or many prescription-only drugs. I'm sure that professional tree clearing companies would like it if everyone except them was banned from engaging in their line of work, but that's not the case because they have less effective lobbyists than doctors have.

I think it is extremely important that medical devices are open, especially data, to prevent rent-seeking on the people who need them to live.

However, if I manufactured, say, an insulin pump, there is no way I would allow it to ship with user-configurable settings in a country as litigious as the US. CPAP seems less risky, but not worth chancing anything. The US market seems to be the primary target for many medical devices, the UK might be receiving CPAPs developed primarily for the US court system.

> But chainsaws are definitely more dangerous than CPAP machines or many prescription-only drugs.

The elements of direct and indirect dangers are more apparent and immediate with a chainsaw than say, unscrupulous use of an SSRI, a bronchodilator or a high-potency NSAID like diclofenac.

While I agree in general, people who are candidates for ASV have to be screened first by a cardiologist. Certain traits can lead to a much higher risk of death while using one.

Actually, there is.

Improperly designed tubes can accumulate or retain moisture, and that small fan will blow mold into your lungs overnight.

Would you trust an Alibaba CPAP sold on Amazon for $50?

When the alternatives are prohibitory expensive or impossible to source, then I guess I don’t have much of a choice.

>There's no remotely significant way that this thing will hurt you even if used improperly

Eh... I've talked to RT's and the occasional pulmonologist enough about ventilators out of idle curiosity to learn that the pressures involved do need to be carefully set within certain envelopes to minimize risks, and I'm not quite as confident as you are in this statement.

Ventilator != CPAP machine

Oh, I know that! I'm familar with CPAP's and BiPAPs and ventilators, etc. I was a paramedic before I became an engineer. My point was just that, within the context of ventilators, I learned just how little I actually knew about the field of pulmonology and how many things I didn't think would be an issue are actually quite dangerous. What little I picked up would be enough to give me pause about the confident statement made in the comment I responded to about DIY CPAPs.

I'm considering the relative/marginal danger (e.g. against actual apnea) and I just don't see it?

You set your controls HORRIBLY wrong on an off the shelf CPAP -- and, what? It's not like you're going to explode your lungs. Your own inability to breathe properly will make you take it off. Or you keep it on and you fart more in the morning (true story, by the way, I've never heard anyone mention this side effect of CPAPs)

Most CPAPs prescribed these days are Auto-PAPs that self calibrate as you sleep.

They often don't even do a titration study to figure out the right pressure range anymore. They just give it to you with a reasonable default setting, let the machine figure things out automatically, and tell you to come back in a month to check the logs to see if your apnea got better.

It could also be labeled “self advocacy” with a light scientific oversight. Ie don’t do the same thing twice and expect different results, and detailed, intricate logs, etc. “Giving a crap” about your health is definitely not anti-science.

I’ve routinely had to do this with my own health. It was especially bad before Botox for migraine was around. Heard a lot of “men don’t get migraines, I don’t believe you” from neurologists.

For sleep apnea, it was an adverse reaction to a medication that led me to strongly request my doctor send me for a sleep study. Found out during the sleep study that I needed a good bit of air pressure and I’ve been benefiting greatly since. But it did take me doing some online research into side effects of the medication (from high quality sources), being insistent, and establishing some report with my doctor through logs, candor, and listening.

I agree and think it's interesting that we find a very similar article about finding a slow electrical leak in a car. Most of the experts are interested in taking the cream off the top of diagnosis, because most of the time you have the common condition that responds to the common treatment.

https://news.ycombinator.com/item?id=35513636

But when it's not and they have to look at a lot of details and spend a lot of time figuring out the problem many aren't interested, if only because they're pressed for time (by insurers) and trying to reduce cognitive load.

I'm sorry, but "don't do the same thing twice and expect different results" is not science at all, and might even be described as anti-science.

> It's not anti-science to take your health into your own hands.

It depends on how exactly it was taken into one’s hands right? Can’t really know if it’s pro-science or anti-science until you see what a person is doing. Most people do pretty irrational stuff, based on stories of a doctor in my family.

Working with the healthcare system is like a marriage, it requires 100% from both sides.

I've had friends with relatively common illnesses like high blood pressure just not take care of themselves via diet, medicine, and exercise, then blame the medical system when their conditions got worse.

At the same time I watched my sisters health degrade over years while she fervently tried to do everything possible to make it better and saw many specialists when they said nothing was wrong and she was being a hypochondriac. It was finally after very effectively documenting everything about her condition and keeping it in a binder and keeping daily charts of her vitals, that a doctor stated "You have some very rare condition, now we have to figure out what it is".

Healthcare is deeply personal and individualized at the end of the day. The problem is we don't have the trained doctors and systems to give the level of care needed. And on the other hand, a lot of individuals don't put for one reason or another, the needed work to ensure they have good health outcomes.

Experiments are science, and if we knew how they’d turn out beforehand they wouldn’t be experiments.

Sort of definitionally you can get pretty weird or unsafe and if you’re comfortable with it not working it’s still a totally valid experiment.

Experiments are potentially science. Not all experiments are done in a scientific manner.

(And even then, experimentation is only a part of the scientific process.)

The article is about someone following what is basically the established diagnostic and treatment flow for sleep apnea. It’s not exactly an experiment. He was pushing the process forward faster than his medical system could, but it wasn’t novel or experimental.

No, experiments are really only science in the usual sense if you have an expectation of how they will turn out and you run the experiment to test your hypothesis. And properly constructing the hypothesis, to include past knowledge and some causal mechanism is vitally important, the causal part being often neglected even in "real" science.

There was a lot of this during Covid (which I know is a bad example because of it's political baggage, but anyway). Various "x cures / helps with covid" trends (sometimes including studies) but not really based on a anything. It's not really scientific to just imagine something could work, and then try it. Contrast it with vaccines, where, regardless of your view on the covid one, there's an actual plausible causal pathway from being exposed to it to getting immunity, so it's possible and a legit thing to do to run an experiment to see if it works.

"so it's possible and a legit thing to do to run an experiment to see if it works. "

I think it is possible and legit scientific to run experiments on allmost anything, no matter how weird.

What matters is how you do the experiment and what is the result - does it work? And if it does, is it reproducible?

Thats the key difference between a scientific and a esoteric experiment.

But you totally can investigate whether divine blessed guano shit cures cancer in a scientific way. Most researchers just won't waste their time with it. Experiments are expensive. This is why most experiments are indeed only conducted, if there is a solid theory about the process and not a shot in the blue.

(And another actually sad part today is, that many new if not most scientific papers out there are actually not reproducible anymore (at least not with the data provided), but no one cares or does something about it, except complaining, because there is nothing to win, from redoing an experiment of someone else. Reputation and grants demand new research.)

> Experiments are expensive

I wish there was an app where I could design experiments, and people could opt-in to participating in them. I'd of course participate in other people's experiments . The app could handle the statistical reasoning. Every now and then, there would be a strong enough signal in the data to attract "real" scientists to problems that would otherwise go unexplored.

People are gonna do weird stuff anyhow, we might as well see if some good can come of it.

> Most people do pretty irrational stuff, based on stories of a doctor in my family.

The doctor gets self reported snapshots from a patients memory. It amuses me as an engineer that they detect what seems irrational, but never follow up on it in any meaningful way or ever attempt to observe the actual reality of their patients lives.

The lack of time for real follow up is understandable, but the unwillingness to accept that this fact, more than anything, colors the way they see their patients is a little maddening. So, I always find it understandable when someone decides they'd rather take their care entirely into their own hands.

You know how it’s always easy to educate your colleagues when they make a sub-optimal architectural decisions that could bite them in the long run? How readily they accept your insight and proceed to rethink their mental models? No? Not even experienced engineers?

Now imagine an average patient, like a mom with 7 kids that doesn’t speak English, or a 16 year old dad who smells intensely of pot. Vast majority of the patients are very different than our engineering bubbles, and doctors are humans who are trying their best.

For people who are willing to have a deeper conversation, some doctors will engage more meaningfully. But most of the process for doctors is to give you instructions to follow, then when you report back, alter them, or proceed as before.

Most people try the first thing doctor asked, and if it didn’t immediately work, change it themselves, and/or go to a new doctor. Then complain how they’ve been to 12 doctors and nobody helped, but then they stumbled on some YouTube guy who said to take 5000mg of vitamin C every 2 hours, and their back pain went away (hint: it went away on its own).

I was never diagnosed with ADHD because medical professionals never noticed any symptoms on the outside. But inside, I was always suffering, I just didn't know what it was called. Once I learned about ADHD and that I checked every box, I started taking stimulants (even without an ADHD diagnosis) and they solved everything.

I think my case was just so severe that nobody saw me struggle with it, because it was impossible to fight. Plus, I'm autistic, so a lot of things were written off as autism.

> I think my case was just so severe that nobody saw me struggle with it.

Same with me but PTSD. Like the fact that I'm remarkably functional in crisis mode doesn't mean that it's not a problem I live there all the time. A surprising amount of medicine relies on having a stable baseline against which to compare and if that's not there, the tests don't work.

> Same with me but PTSD. Like the fact that I'm remarkably functional in crisis mode doesn't mean that it's not a problem I live there all the time.

Exactly! I wanna fix something wrong with me, not something preventing me from becoming a work slave. I want to be happy with myself, not just useful to society. My own happiness should trump most metrics of functionality.

It's crazy-making, isn't it?

I realize in hindsight how much of my resistance to help was resistance to 'help': I've grown up surrounded by adults/authority figures offering 'help' with no consideration of my actual desires or wellbeing. I know that one. Of course I was wary: I had a good reason.

You're right that it all relies around making people functional, not whole people who have come to terms with who they are and are a psychologically stable human organism.

In my opinion, the person isn't the organism, the organism makes up the person. That distinction is important when it comes to things like DID, which I have. Even "whole people" becomes questionable when a single organism contains multiple people~

But I still totally agree. My main concern when I was getting prescribed my meds was "will it help me mentally instead of just making me do things?" and the answer was "yes". I didn't actually believe it, until I tried the meds and they freakin' worked. Now I'm just so thankful and grateful I found something that worked so well. I feel like my brain is finally functioning the way it's supposed to. (Neurodivergence included of course~)

What - if any - nontraditional treatments have you ended up gravitating towards for that?

Absolutely. I was prescribed an APAP with the default pressures set from 4-20. The doctor claimed that the "machine would do all the work" but I still had poor sleep quality. Ended up downloading Sleepyhead (the predecessor to OSCAR) and self-titrated using a band of 90% reported pressure.

My sleep improved but my doctor got mad because I wasn't listening to medical advice, but going into the APAP clinician settings and changing them myself.

I was told my bones were like that of an 80 year old when I was 32, I have severe Osteoporosis and since I already have Achondroplasia doctors here(India) don't even try to find what's causing my bone weakness; "Learn to live with what you've been dealt with" is a literal statement made by a doctor in an expensive hospital.

My spine broke, I've undergone various bone related surgeries all my life.

I decided to take matter into my own hands and built "Bone Health Tracker"[1] a FOSS bone density results tracker, I went to the front page of r/InternetIsBeautiful subreddit and through which I came across others like me who have suggested various rare diseases which I could be facing. Since then I've been working with NGOs helping those with rare diseases to help me find a doctor who can diagnose my disease and for the first time in my life I'm hopeful that I will be able to find what my disease is soon.

[1] https://bonehealthtracker.com/

If the two options are wearing a label that you don't like (that the labeler might not even understand) but having your health, or wearing a more desirable label but without your health, the choice seems clear.

It's like they say, opinions are like assholes. Everyone's got one and they all stink. At the end of the day, the only one who is really accountable for your health is you.

We all need to be our own advocates, in lots of areas.

What's concerning is when people ignore the experts completely.

Steve Jobs ignoring the advice for pancreatic cancer treatment comes to mind.

Science is but a tool for understanding what works and doesn’t work. It’s neither necessary nor complete for solving any specific problem. I have a few instances where I’ve used science to hack my own problems and it usually works if you are careful and methodical, but my result isn’t scientific and it’s only manifest in a sample of one. I can’t advertise it as a solution for everyone as it’s not science. But it doesn’t mean I’m anti science, rather, this is how theories and hypotheses start - not in a clean room with a pencil and paper extending known science with sterile logic. It’s having an insight that’s a bit crazy but you know enough science to support it, you try it out and holy smokes it works. Then you craft an experiment to prove it didn’t work, some similar well controlled construction. A personal example is I suffered from long covid. I knew that citrulline is a non essential amino acid that is a part of the nitric oxide cycle that is easily digested and metabolized into arginine in the kidneys. It’s got a lot of uses for exercise endurance, erectile dysfunction, but also sickle cell anemia. The popular misconception is the shape of the sickle cells can’t carry oxygen well but that’s false. In fact the symptoms are caused by the shape irritating the cells lining the blood vessels, and arginine is a vasoprotector and vasodilator that’s redirected to help heal the irritation leading to loss of energy systematically. I figured covid attacks and irritates the blood vessels maybe there’s something similar at play. Regardless, by juicing the NO cycle overall blood flow and energy levels increase. I checked with doctors and the body can consume large amounts of citrulline without consequence other than GI discomfort in large amounts. I got a bag of nutricutical grade citrulline from Amazon and within half an hour I felt great for the first time in a year. In a few months of daily dosing feel normal again. Maybe it was luck, maybe a placebo, maybe real. It doesn’t matter - it’s not anti-science, it’s proto-science

>>doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself.

Yup, it is. Because like a cargo cult, most of the external signs are similar. The difference is in the depth of knowledge used, the rigor applied to the evidence, whether the person is actively avoiding or seeking confirmation bias, etc. So, yes, much of the time, it is actually anti-science.

That said, there is no reason to hide a person's own data from them. Even if statistically, they are more likely to abuse it.

The fact that he had to go get a gray-market machine hacked to use open-source to get his own data is unconscionable. It should simply be required that all medical devices have an easy method to provide data to the user/patient, such as a Patient_SDCard_Slot, or Patient_USB_port. Obviously it wouldn't provide access to the internals, but provide a parallel output data stream that they could use or not use as they choose.

Edit, meant to type "it sometimes is", not it is

(didn't check my writing, too late to edit)

Interesting. With exception of the pandemic, I don't think I encountered that particular view often. If anything, taking medicine into your own hands tends to be a result of quick fix mentality ( which used to be a uniquely American issue ), lack of access to medicine and doctors.

I am not one to defend doctors too much as I did have a moment, where a whole series of trained professionals missed something obvious ( in retrospect ) to the point that made me question whether they were all just trying to drain my insurance as much as they could. It is a problem, as we are still learning how our bodies really work.

<< you need to sometimes tackle your own health

That 'sometimes' is important. You want to know the line where supplements and blinds are no longer sufficient.

It sounds like they're objecting to your lack of respect for scientific authority. If so, they should read Paul Feyerabend.

Science is at its worst when it's coupled with authority.

Most people are not good debuggers. Medical. Automotive. You gotta do a lot of things yourself these days.

It shouldn't be controversial that you should be responsible for your own body and health.

This isn't science, it's medicine. Many parts of medical diagnosis are not completely scientific. It's also easy for people managing their own health to make mistakes that professionals would not.

Yes, absolutely. It is worth practicing medicine when the treatment is inherently harmless and going through the medical system has been bottlenecked.

Nobody is killed (or really harmed) by trying a CPAP and the waiting list for sleep clinics can be months or years long, not to mention the expense.

It's one of the rare medical interventions that is relatively safe for an individual. Probably should be otc.

> Probably should be otc.

Isn't it already, if you can just buy a CPAP machine off the shelf?

Late reply, but no, legally you cannot buy or sell a CPAP machine without a prescription. It so obviously should be OTC that there's a thriving gray-market.

A couple of things:

1. Sleeprider deserves to be raised to knighthood or some kind of medal or something. The man is a hero and a living legend, who has helped untold number of people with their apnea. I'm not kidding. Thank you, Sleeprider, for all that you do.

2. OP really should pursue the NHS route. Maybe it'll take a while, but once the gears are in motion he'll at least get access to a steady supply of ASV machines, for free. There will also be a paper trail of effective treatment, which might be important for insurance purposes further down the line (mortgages or life insurance or whatever which might require a medical checkup).

3. If you have a bed partner who tells you that you're not breathing, or that you snore loudly: get tested and get treated. Don't shrug it off. Deal with it. The sooner, the better.

4. CPAP doesn't have to be unsexy. I really don't understand why virtually all CPAP pictures include full-face masks with bulky headgear. The vast majority of CPAP users can get by with nasal pillows with minimalist headgear. Using those pictures instead would reduce the anxiety people feel about getting on CPAP. [1]

5. AHI is a largely meaningless number. "Mild" apnea can be just as devastating as "severe" apnea. AHI only looks at events/hour, it doesn't look at when the events occur (e.g. during REM), how many are back-to-back, and how much your sleep is actually disrupted. You can have a "normal" AHI of 5 and still get absolutely trash sleep because of un(der)treated sleep apnea.

[1] Nasal pillow mask: https://www.resmed.com.au/healthcare-professionals/products/...

I used the Swift FX for a long time, which is the predecessor to Airfit P10. Unfortunately they do not make them any more, and for some reason the P10 feels like it is putting my septum in a vice, it pinches it so hard. I can use a little bit of tape to cushion it, but it is a pain and still not the greatest.

I've ended up going with the N30i which is okay unless I'm a little congested as it kind of pinches my nostrils shut slightly, in which case I use the P30i fitting with the aforementioned tape. I miss the FX.

Any references or links on AHI and bad sleep? Seems like that is the gold standard for measuring severity of sleep apnea but I haven’t found it a very good measure for my own experiences.

No references I'm afraid. AHI is convenient because it's a single number, but just like BMI, it ignores a lot of context. RDI (RERA, respiratory effort related arousal index) might be a slightly better measure, but still imperfect. Intuitively, AHI doesn't make much sense. There are multiple sleep stages, if an AHI of 4 prevents you from entering REM sleep, or if it keeps knocking you out of deep sleep, you're going to have a bad time even though the numbers look good.

Sleep apnea is strange.

Good news! We have a diagnosis, sleep apnea. You're bad at sleeping now, the thing everybody has to do all night long every day since birth. The solution is to wear a modern iron lung whenever you want or need to sleep forever. Many times it's because people are overweight but you aren't.

Is that really all there is for treatment? No throat exercises or therapeutic sleeping positions? No diets? No botox injections for your uvula or a daily pill to obviate breathing while sleeping?

Diagnosed at 24 with sleep apnea. I tried a bunch of things.

What worked for me was regular cardio exercise and daily doses of high absorption magnesium.

The magnesium is absolutely unproven pseudoscience nonsense that can't possibly work. But if I stop taking it my sleep suffers massively.

I take magnesium for migraine and vertigo. Very much not a believer in supplements -- before this, I went through years of specialists prescribing various pharmaceuticals with various side effects. These days the problem is under control without any meds; I just take magnesium (specifically, a mix of l-threonate, glycinate and taurate), telling myself every day that it's probably unrelated to my feeling better. Like you said, it couldn't possibly be working as well as it seems to. But if I stop, my condition mysteriously gets worse. If it's a placebo.. eh, who cares?

>> Very much not a believer in supplements

…why?

Vitamin, mineral, and nutrient deficiencies are a very well known science.

Sure, but the supplement industry is 99% woo and most of what is sold has no proven benefit. In general people most people taking supplements don't have any known deficiency (including me, blood tests show my mag levels are fine).

When I'm deep into half-marathon+ training, I (personally, not scientifically) observe that I become zinc and magnesium deficient. I simply will not recover, I will feel extremely fatigued, etc. There's a lot of controversy over this, but I more or less have to take ZMA to sleep at night, to remain asleep at night, and to recover from the training load I am putting my body through (I also carry a 2-3x per week lifting load regardless of my running schedule).

> The magnesium is absolutely unproven pseudoscience nonsense that can't possibly work.

With so many systems in the body, you really have to wonder how many people actually have a _single_ issue that's causing _all_ their problems. It's much more logical that your experiences are the result of emergent phenomenon from the interaction of multiple issues. In that case, perhaps you're simply treating a secondary condition that's vastly improving the outcomes with what you view as your primary condition?

Could you share your magnesium preparation and dose? If you are deficient in magnesium, the mechanism I would guess is that neck muscles are unable to relax and constrict the action of weaker muscles used for breathing.

https://drbvitamins.com/products/doctor-s-best-high-absorpti...

That's the good stuff. Constantly hard to find in Canada.

Edit: also this is literally the first time anyone has ever provided me with any idea if why it might actually work. So seriously, thank you for that.

I’ve read that a lot of people, especially men, are deficient in magnesium. It’s an essential mineral so I wouldn’t call your use of it pseudoscience by any stretch.

Presuming that there is no causation, a placebo that works is still an effective treatment.

> The solution is to wear a modern iron lung whenever you want or need to sleep forever

Calling it an iron lung is extremely disingenuous.

The Iron Lung uses negative pressure and had to be used 24x7 to keep the patient alive because their lungs weren't able work on their own. They had no mobility and were confined to a bed for the rest of their lives.

CPAP / APAP machines use positive pressure and only assist with breathing while asleep, when apnea events occur. It does not replace lung functionality, it only assists.

Yeah, having to use a CPAP/APAP at night can be bothersome, some people have a very hard time adjusting to using one. However, comparing it to using an iron lung is ridiculous.

> The solution is to wear a modern iron lung whenever you want or need to sleep forever

Iron lung use was not 24/7 for all patients. Saying so might be considered by some to be extremely disingenuous or even ridiculous.

https://www.npr.org/2021/10/25/1047691984/decades-after-poli...

I genuinely thought it was a life sentence, something I was taught in school. Thank you for pointing this out, I honestly didn't know.

It's hyperbole, but the comparison isn't without some merit. My grandma stopped using it because it's troublesome, and I've heard many people voice the same. Getting into an iron lung each night would also be ... troublesome.

You don't climb in and out of an iron lung. If you're using one you're in it 24x7.

Iron lung use was not 24x7 for all patients. Saying so might be considered by some to be extremely disingenuous or even ridiculous.

https://www.npr.org/2021/10/25/1047691984/decades-after-poli...

Iirc iron lungs are better than CPAP, as the positive pressure caused by CPAP, if too big can stress the lungs.

Iron lungs use negative pressure so they don't suffer from this

Nothing works anywhere near as well as PAP therapy. Certainly not diets (overweight is often an effect of apnea, not a cause). Sleeping positions can help in the case of positional apnea, but certainly not for everyone. Botox injections anywhere will have to be repeated regularly. Fucking with the uvala (like in UPPP surgery) can actually worsen sleep apnea and has all kinds of nasty infection and side effect risks.

PAP therapy works. The biggest problem with it is that it has a bad reputation, which is largely caused by doctors and sleep clinics not doing their fucking jobs. Patients are often sent home with a CPAP machine, titrated to some semi-random setting which happened to be fine for the night of their sleep study in an artificial environment. And that's it. Goodbye and good luck. That's such a messed up way of treating people with a life-long ailment ...

Thanks for your detailed response, but the things I listed were entirely in jest. I don't think the uvula causes sleep apnea and don't believe a pill would be able to obviate breathing while sleeping.

Haha I totally missed that, my bad! The uvula thing is pretty scary, some people have it removed entirely in an effort to treat sleep apnea, and from what I hear it seems to help at first, but then often gets worse again (maybe because scar tissue is less strong than regular tissue?).

>No throat exercises or therapeutic sleeping positions? No diets? No botox injections for your uvula or a daily pill to obviate breathing while sleeping?

Since OP's apnea is not obstructive, sleeping position, botox, etc. won't make a difference.

This is what I was talking about. The patient has apnea type b. The prognosis remains Bad at Sleeping, use iron lung type b with no alternatives.

Most people have type a and use iron lung type a, there are some treatments for this type but most people opt for the iron lung.

To me, it certainly seems to suggest an environmental cause (or at least significant contributor). Certainly doesn't seem evolutionarily adaptive for such a large proportion of the population to live with profound mental and physical fatigue.

Obesity is an obvious confounder, but these seemingly frequent front-page HN sleep apnea posts usually abound with anecdotes of normal / thin individuals with significant issues.

Thank you, this is what I'm driving at. The conversation includes very little discussion of cause or actual treatment beyond symptom mitigation.

Always wondered if not most of our sleep issues would go away if we spent a few days or weeks camping in the wild without electricity. Unfortunately not a long term solution.

An easy hypothesis to check given the millions of people who do exactly that each summer. The answer appears to be that if your sleep quality issues are lifestyle related and you are simply unable to make yourself practice sleep 'hygiene', then yes, it shift your sleep cycle to fall asleep earlier. If you do already practice proper sleep hygiene but still can't sleep normally, or if you have any kind of physical problem like sleep apnea, then no.

I read a book called Breath by James Nestor, it’s all about the benefits of nose breathing. Anecdotally this has completely fixed my sleep apnea/ snoring/ energy levels/ etc. Highly recommended!

Wait, people aren't breathing through noses?

I'm not sure if it started this way, but I mostly breathe through my mouth at night due to significant congestion in my nasal passage. If I use a nasal rinse or flonase it helps but if I'm not diligent it regresses immediately.

Give this a shot for a week or two. Just jam these up there. It will be uncomfortable at first but you get used to it. Really opens you up and takes away a ton of resistance in nasal breathing.

https://a.co/d/18eLtdw

I found that I have to consciously close my mouth and "tell myself" to breath only through my nose.

When I do this i sleep better.

You sleep better by consciously breathing through your nose at night? Or during the day?

I had to have my deviated septum surgically corrected back in my late teens before I was capable of breathing consistently through my nose. Even simple things like chewing with my mouth closed were difficult because I couldn't breath well enough with my nose only.

Nope, usually feel like I don't get enough air.

lots of people with chronic allergic or non-allergic rhinitis aren't able to breathe through their nose.

I thought I'd get a freebie there (like when you lose weight just by cutting soda - which I already don't drink. Another freebie lost), but when I paid attention I am breathing exclusively through my nose and to make matters worse my tongue is in the mewing position. So this is already the best case scenario for my weight, sleep and jawline. Bummer.

What are the best strategies for increasing nose breathing?

Look into the EASE procedure by Dr. Kasey Li

Have you tried this? does this work?

I would also suggest looking into the Oxygen Advantage system. Just finished reading the Breathing Cure by Patrick McKeown, makes some interesting claims but mostly found helpful exercises to retrain nasal breathing

His book "Deep" remains one of my very favorite books of all books, and I've turned a fair stack of pages. It's a different kind of medicine though; for me, it revived my soul, if there is such a thing.

Assoc https://hubermanlab.com/how-to-breathe-correctly-for-optimal...

I lost the ability to change positions while sleeping after having open-heart surgery and having to sleep immobile for months. I wish I knew how to get that back. My searches online yield nothing.

I have sleep apnea, not overweight. I wish there was more research poured into a solution that isn't pseudoscience junk or predatory.

Grateful to the inventors of the cpap though, changed my life.

If it’s obstructive, you can learn to play the digeredoo

After about 3-4 months you should notice your condition improve

There absolutely are therapeutic sleeping positions. Sleep on your side.

Google it for yourself or https://www.sleepcycle.com/sleep-apnea/optimal-sleep-positio....

My journey was:

1) side sleep - didn't work after a while

2) cpap with giant over-the-nose mask - I couldn't stand it and I rejected it

3) a boil-and-bite mouthguard to keep my jaw in place and not sliding back - didn't work after a while

4) same cpap as #2, but with nasal pillows - has worked since then

by the way, I had to really learn to breathe through my nose for #4. I guess I didn't always do that, especially with allergies.

losing weight, exercise - good for me, but didn't solve it

this worked for me for a while but in the last year, I've started getting episodes even though I've taught myself to sleep on my side, breathe through my mouth, keep my airway open by tilting my chin away from my chest, etc.. these kinds of techniques only work so well.

Anyone got any other experiences with things that cause brain fog? I don't think I have sleep apnea (my wife often falls asleep after I do and she doesn't report any kind of weird breathing issues for me, nor snoring).

But even though I generally sleep 8 hours a night, I am quite tired during the day and I often have trouble focusing. At night, I fall asleep like a log and I don't wake up during the night.

Same. Also not super tired, can go through with coffee, etc. But I don't feel rested when I wake up, almost never. [1]

The things I never tried: giving up caffeine completely, eliminating sugar completely, eliminating carbs completely, losing 20 kgs (I'm a bit overweight like BMI 27).

What didn't work: Ritalin, Venvanse, Modafinil...

[1] I feel like it could just be "stress" ie don't know how to relax and let go (beer does work but I wake up worse). I cling to small stuff like "will my wife remember to pick up the clothes later?" (making up a real example that has zero bad effects if it doesn't happen today)

Unfortunately, there are many things it could be.

Doctors are only so helpful (and most are even less so)

Here's a list of things I tried that sorta helped with my tiredness spells. Recommend doing any of these changes separately:

- Sugar fast for 4 weeks (helps reset your cravings)

- Switched from coffee to green tea

- Reduced caffeine intake to one a day or 3x a week

- Acupuncture

- 15 min walks or bike ride every day

- Omega 3 oils

- Higher intake of minerals I was deficient in (eating more green vegetables)

(spoiler alert, I had undiagnosed ADHD which contributed to my high anxiety, which gave me waves of alert/exhausted)

Sugar fast.... Seems impossible. Most I've done is one week and it was absolutely horrible. I was always hungry, despite eating a lot.

Yeah, it's pretty rough the first week. It can help to modify the definition of sugar to be processed sugars.

I kept fruit in. Some people allow honey

I don't mean to diagnose you with a mental illness from a passing comment in an HN thread, but your footnote rings the same bell my partners (diagnosed) anxiety does. They were prescribed xanax for it which helped but made them very lethargic, so they stopped.

Since you were prescribed ritalin at one point i'm guessing you went to see a mental health professional, maybe try to get a second opinion?

Other things they find effective (that don't require a diagnosis) include breathing exercises (flavor of the month is a free(no ads!) app called RespiRelax+), grounding exercises (name 3 things you can touch, etc) and indulging in dopamine activities (for them it's gaming and cooking, for you it might be sport and model aircraft). Last point is not really going to help you sleep but they find that if they can't sleep because of anxiety, it's better to try to forget about it by doing something they like rather than lay awake in bed.

1. Check your Vitamin D levels, if deficient use liquid drops to supplement. Lot of people suffer from this in winter, especially in the northern hemisphere.

2. Do you suffer from a stiff neck? If 1 does not help to release muscle tension, check for Intracranial hypertension or Intracranial pressure (https://en.wikipedia.org/wiki/Intracranial_pressure).

> Anyone got any other experiences with things that cause brain fog?

Allergies and Food sensitivities.

These are often incredibly hard to diagnose because there are foods that we eat so commonly, we don't have a good control/variable separation for experimentation. In addition, allergies and food sensitivities don't develop all at once. They increase over time. This makes discovery even more difficult.

But it's almost always this.

As for myself, I had severe brain fog and fatigue. It turns out I was allergic to coffee. Looking back, I now see that it was something that became more and more severe over about 10 years.

It took me quitting coffee for several weeks for an unrelated reason to discover that it was the problem. When I started again, the stark difference in how I was felt made it much easier to diagnose. I got lucky really.

Get a sleep study. You can still suffer from reduced airflow at night even if it doesn’t translate to actual obstructive events. Or it could be something else.

Sounds similar to me,and I don't see anyone saying this yet, so I'll throw in my experience: I believe I was sleeping too much. I was generally in bed for 9 hrs and got 8 hrs and felt that way, but after my kids were born and I started getting 5-7 hours, I've felt much perkier quicker(even if I don't need to do anything with the kids in the morning). Before it would literally take me half or more of a day to start feeling awake.

You might be getting poor sleep and there are many reasons that might be happening.

Then there is also depression or hormone problems.

For me personally it tends to be caffeine preventing me from getting good sleep, which in turn makes me want to take caffeine to focus more, which prevents me from getting good sleep, rinse repeat.

It's not depression - I've had that a couple of years ago, I'm not feeling anything remotely similar.

I don't think caffeine is an issue. I try not to drink coffee on weekends and I still feel like this on Monday

Could be a hormone deficiency/imbalance or any number of other things. I’d start with a blood test and go from there. If your doctor doesn’t want to order it, you can order your own labs online and take them to a local lab draw facility (at least in the US).

Talk to a doctor. Idk why OP spent so much time solving what a doctor could tell them. I had similar symptoms and doc pinned it on narcolepsy before I could finish explaining. Googling symptoms never turned it up. Getting tested for sleep apnea is very easy with an at-home device. Narcolepsy is more involved. Long COVID is another candidate. So is thyroid which requires a blood test.

I guess you've been lucky. Most doctors are crap, in my experience. I've actually had a doctor "diagnose" me by typing my symptoms into webmd and telling me I have IBS (which is basically a non-diagnosis). I've heard countless stories of misdiagnoses from friends, or herculean efforts to diagnose rare conditions. The western medical industry is great at handling common, obvious problems, and pretty much terrible at everything else. Especially stuff related to sleep and digestive tract issues.

I've had a dermatologist look up my symptoms on Google in front of me...

> Anyone got any other experiences with things that cause brain fog?

Vitamin B-12 deficiency due to lack of intake (a risk for strict vegan diets) or pernicious anemia, an autoimmune disorder. The former is addressed by over the counter supplements and the latter by injections.

Deficiency can be diagnosed through a blood test.

When I first wake up in the morning it feels like I have indigestion, and when I get indigestion I get really bad brainfog. It feels like I am thinking really hard but the thought is blank.

Usually after an hour or two (and a few big gurgles from the gut later) it resolves itself.

For me the biggest causes are bread, pasta, and coffee.

If I eat a gluten free vegan meal for lunch I avoid the 3pm slump and the associated brain fog.

How are the CO2 levels in your room? Do you sleep with a window open?

I have a Withings Scale that measures CO2 levels. During the night, it goes up to 1600ppm. It used to go over 2000, but now we leave the door half open.

I can't sleep with a window open most of the year. In winter it's too cold, in summer it's too hot.

I had surgery to expand my upper jaw and palate three weeks ago, and the improved ability to breathe during the night and day is absolutley life-changing. I used to wake up multiple times a night with a pounding heart, and could never get a restful sleep. Within a few days after surgery, I could sleep through the night and my blood pressure dropped enough to start weening off my hypertension medication.

If somebody is struggling with obstructive sleep apnea, I would suggest consulting with an oral maxillofacial surgeon or otolaryngologist (ENT) to have your jaw and nasal airway examined to see if there's another option besides using a CPAP.

I am not exactly sure which surgeries you are talking about but for people curious there are basically 3 surgeries to consider:

1. MMA - Break both jaws and advance them forward to expand the airway. Most invasive, most effective. It is a major surgery and should not be taken lightly.

2. Maxillary expansion - Less invasive depending how it's done. Be skeptical of maxillofacial surgeons who do Le Forte osteotomies as part of the procedure. There are many variations of this surgery. EASE is probably the best

3. Nasal surgery.

If you can afford it consider Kasey Li https://drkaseyli.org/ease/

Wishing you the best of luck, but when I looked into this 10 or so years ago the long term success rate of surgery seemed dubious to me.

I read that scar tissue ends up building up and making the problem worse than before, so it ends up being a solution that works until then.

I did end up having turbinate reduction / deviated septum surgery, so at least I can use comfy nasal pillows now. The turbinate reduction definitely destroyed most of my fine sense of smell, which is unfortunate. Wish I'd known that ahead of time.

Anyways, sleep apnea sucks. Wish I could fix my anatomy.

Thank you, I had not heard of the issue related to scar tissue building up. I will look into that more and ask my doctor when I see them later this week. I knew going into the surgery that it was not a sure thing that it would improve my breathing. The primary reason I had it done was to correct a bad underbite and crossbite that causes me to struggle with eating.

> turbinate reduction / deviated septum surgery

I had this too, and it did nothing at all for me - except I now have a permanently numb spot on the top of my nose.

Surgeries are a massive source of profit in the US. I'd recommend getting multiple medical opinions (preferably from the surgeons who don't own multiple yachts) before doing any kind of surgery.

My friend had that surgery, it also gave him a more robust jawline which was a bonus.

He used to snore shockingly loud. It sounded like a jet taking off, if I tried to mimic it intentionally I was unable to get as loud.

"the National Health System have yet to even send me a letter"

That's the crucial point here. Health care failed him, but luckily he was rich enough to privately purchase multiple medical devices just to try it they might help.

You’re not wrong on the facts, but if you’re implying that we should not feel good about this story, I disagree.

One crab has managed to climb out of the bucket. The rest of us should celebrate for a minute and then redouble our efforts to get everyone to the same place, leveraging the lessons he’s passed on. Upwards!

Yep.

I happened to help another crab and I think it may be the single best thing I’ve ever done.

My wife’s family was constantly making fun of my father-in-law for falling asleep during the day, falling out of chairs etc. One day I noticed he was fluttering in and out of sleep while driving me so I asked him if he wanted to try my travel CPAP that night - I have very mild apnea and can get by without it.

He tried it and after the first night he was a completely different person, it was almost like someone drugged him up with PEDs. The home remodelers that were working there were jokingly peeved because he started helping them and they said he was going to put them out of work.

Just transformative, I feel so good about it.

Agree. We very much should be happy for him. And thankful that open source granted him access to understanding these machines.

And in addition to that, it would be great if we could improve access for people who are less fortunate.

There's more to that. Building open medical devices and knowledge in general helps humanity as a whole.

Considering how terrible sleep apnea is for the health, you would think that all healthcare systems and insurance companies would take it seriously. The costs of treating heart problems and stroke are much worse. But in practice it seems like no healthcare system puts in more effort than begrudgingly ordering a sleep test and then maybe a basic cpap after much hesitation. There are stories of people literally begging their doctors to give them a cpap.

Well, just to offer some pushback in the thread, I can imagine one reason why.

My father has sleep apnea, he is overweight, a heavy smoker and I reckon his daily intake of coffee could kill a small rodent. We are Spanish and public healthcare has blessed us with a CPAP machine...

That he just won't use. He refuses to, complains that he feels too uncomfortable with it. I can't recall the last time he slept 8 hours in one go.

And I wonder how common that is. The machine is noisy, does look like pulled out of a teenage horror movie and takes accustoming to. There is heavy friction for its use and that might be a serious problem to consider.

I have cpap on the NHS. I got a quality machine, quality advice and quality follow up. It took a very long time to get it but the care itself was very good.

I had a CPAP machine on the NHS a few years back. The machine was OK, a low-mid range model. But they supplied everyone with a "medium" size of mask, so I had to buy a bigger mask myself.

I'd say the quality of care I got was... shit. A very bored and uncaring nurse gave me some brief instructions, and got almost angry with me when my mask didn't fit and air hissed out the sides.

I figured it out myself, and had zero follow ups for the 2 years I used the machine. They even made it difficult to give the machine back!

Why not look at the underlying cause? I was diagnosed with sleep apnea when I was 50. An oral surgeon wanted to carve out my tonsils and uvula.

I changed my diet and began exercising. Lost 50 pounds. My sleep apnea went away and I no longer even snore.

The downside of getting diagnosed is my life insurance company dropped me.

> my life insurance company dropped me

That ought to be illegal. Could you get re-tested, certified healthy, and restore your insurance?

> Why not look at the underlying cause?

Agreed in general, but in this case that's exactly the story. He discovered his apnea is cognitive ("central"), not due to his throat geometry. If we're ever able to figure out and solve the root causes of cognitive problems like that, it will be amazing, and we should, but I don't think we're there yet.

> I changed my diet and began exercising. Lost 50 pounds. My sleep apnea went away and I no longer even snore.

That's because you have OSA (obstructive sleep apnea). I (OP) have central sleep apnea, there is no obstruction, its related to the nervous system. I am already very lean (I run ultra marathons as a hobby).

When I read the first lines of the article, “sleep apnea” already jumped to my mind. Good for the author of finding and fixing the root cause of his sleep deprivation. No ways a few hours of sleep could be normal.

Here's a story.

We lived in a "commie block" and we could hear our neighbor snoring super loudly during summer when we all had our windows open for the night.

One night, we heard him repeatedly stop breathing and then gasp for breath. So when I've seen him the next day by the elevator I told him: "Sorry to bother you, but we can hear you snoring" and he has gotten super apologetic. But I continued, "yeah, we are used to it so don't sweat it. The trouble is, you are stopping breathing recently. You may have sleep apnea. Go see a doctor, STAT. You don't want your brain to die off due to a lack of oxygen."

He told me in a couple of weeks he's got a CPAP and is working to shed some weight off. In a year he went back to a more normal weight.

He also started dating our neighbor. Curse those open windows... :-)

I remember sharing a room with my snoring grandfather as a kid, and the shortness of breath pauses, which were much, much more disturbing than the snoring itself, especially to a young person who's aware that old people sometimes die in their sleep. Wasn't until a lot later I made the sleep apnea connection (he lived another couple of decades to a grand old age. When the cancer did get him, the neighbours said the cessation of his notoriously loud daytime sneezes should in hindsight have been a giveaway about the change in his general health...)

I'm a sleep technologist by trauning and profession for the last 18+. I wish all our patients were so much aware about their conditions and our doctors had the opportunity to spend enough time with those that would.

do you know, by any chance, about the connection between eating vegetables green and onions seem to trigger sleeplessness? I think it's a gut issue, but I can't find any doctor that knew this yet

Although this isn't a proper setting to provide consultation and I have to remind you that a trained physician in sleep medicine in a sleep laboratory setting could be more specific on answerimg your question, here are my thoughts.

Are there any signs of gastroesophageal reflux? Like burping, or feeling hearburn, maybe even non-cardial chest pain? If so, I would suggest consulting with a gastroenterologist before visiting a sleep laboratory. GERD (gastroesophageal reflux disease) is often associated with late sleep on-set phenomena and with fragmented sleep circle pattern due to central apneas taking place when the acidic reflux enters the esophagus.

If you already have ben checked by a gastroenterologist (and/or are under treatment) I would suggest visiting a sleep laboratory. They would perform a sleep study and will be able to better assess your sleep patterns.

what could the gastroenterologist possibly do to help in this case? i do have GERD and fragmented sleep, after having gone to multiple gastroenterologists, i still haven't got help for this particular issue. any suggestions? it would massively help me.

A gastroenterologist should treat GERD (to the extent possible) then we should be checking sleep. As soon as GERD is under treatment a consultation with a sleep laboratory could be considered since some reflux may still happen during the night and may result in (mostly central apneas).

My Gerd went away when I cut out anything that triggered it. Curiously, depression went better as well.

Sadly that left me with mostly meat and coffee

might be FODMAP sensitivity.

I find it somewhat odd that modern medicine don't screen for stuff like sleep apnea or ADHD (and similar).

They're quite frequent (sleep apnea - 17% from the article, ADHD - 5-20% depending on the study) and impact peoples' lives quite severely both on quality and productivity fronts.

Both are expensive to diagnose. ADHD also has a problem in that a wrong diagnostic can harm people.

Diagnose - sure, but screening - I'd argue about that.

Withings device mentioned in the article costs around 170$ and probably could be shared beyond few times use. Is it that expensive?

ADHD is very visible in certain cases (and still not diagnosed) and probably could be screened on class level with normalized questionnaires. Hand results over to parents and let them decide if they want to pursue diagnosis or not.

The new sleep apnea device he used is really simple and easy. I think we'll see it utilized a lot more often.

Okay, serious question: The author of this blog post sleeps with his partner, and then discovered he spent 20 seconds of each minute gasping for breath, 40 times per hour. (Something like ~this). How did his wife not notice and tell him? Now I'm paranoid that I have sleep apnea.

What's the cheapest wearable or device that can probably tell you if you have apnea?

> or my compassionate and frequently anxious wife, would rouse me with the words, "WAKE UP, YOU'RE NOT BREATHING!"

She did notice. The people I have known with sleep apnea were originally alerted by their partners walking them to tell them they’re not breathing.

The article mentions the Withings Sleep Analyzer. Is about US$130.

> What's the cheapest wearable or device that can probably tell you if you have apnea?

Years ago I was once concerned I might have had sleep apnea. I did see a doctor, who said I almost certainly didn't have it. I also bought a $40 pulse oximeter that could do logging, and taped it to my finger over a couple nights. I didn't see my oxygen level drop below 90% (or something, I can't remember), so I figured I didn't have it.

My understanding is oxygen level is one of the most important factors to track for sleep apnea. I am also super-skeptical of movement-based sleep tracking. Since my impression is it's typically half-assing with cheap sensors that aren't very suited to the task (on their own).

Smart Watches often can track sleep and approximate blood oxygen levels.

Does anyone know how accurate Samsung or Apple Watch are?

You might want to check this youtube channel:

https://www.youtube.com/@TheQuantifiedScientist

Reviews of health tracking devices, often comparing their performance with medical equipment.

How did his wife not notice and tell him?

You don't really understand how heavily some folk sleep - and you can sleep through quite a bit. Including snoring.

I can sleep through incoming and outgoing artillery fire, .50 cal machine guns and humvees running over land mines (allegedly, they may have been messing with me), people snoring, all kinds of stuff. Someone talking and I’m wide awake.

There are more than a few free apps that can record audio of you the entire night in a zoomable, scrollable way (i.e. you look for the spikes in the waveform and listen to them) I used these for a bit in figuring out my own CPAP needs.

Thank you! This sounds like a very simple and free solution.

The second paragraph has his concerned wife waking him?

Not a doctor but an audio recording of a night of sleep could help while you wait for a different device.

Video cameras on everything now and are so cheap and easy plus you could see yourself gasping. The sound may be too low to pick up and video may supplement the recording.

I have sleep apnea after covid... and burn out. Cpap was a revelation but not a silver bullet.

The link between sleep apnea and weight is a vicious circle. Stop up every night and see if you fancy exercising after a couple of weeks!

If you share a bed with someone you don't need any of this tech b.s. to know you're choking yourself awake dozens of times an hour.

Listen to the people you actually share a home with if they inform you you're not sleeping well (and are probably interfering with their sleep too).

- Someone who grew up in an utterly dysfunctional household in the sleep quality department. Denial so deep, unreliable "science" would be abused as "proof" of there not being a problem.

** hearing loss is another one; if your hearing has become so bad you mishear much of what your family is saying to you... esp. with a bias for the negative/combativeness, often promoted by consistent lack of sleep (surprise!), get an effing hearing aid already. You're destroying your relationships with your family.

In the US, the author would have had a sleep study done and it would have been diagnosed in a day. Do they not have those in the UK?

Anecdotally, my wife was diagnosed in the US with sleep apnea about 2 years ago. This included multiple GP visits to even get an at-home sleep study that came up negative, us having to purchase an additional at-home sleep study out of pocket that came up positive, and an overnight sleep study. The overnight results gave a diagnosis of severe sleep apnea. The entire process from start to finish took at least 3 months.

Her insurance fought every step of the way, despite having half-decent insurance as a hospital employee. They claimed that her BMI was not high enough to have sleep apnea, and ignored the family history (both parents, 3 grand parents, one sibling, three cousins).

In the US, I went in for a sleep study and had to fight for it. "You're not obese or old" yes but both my parents (admittedly old, but not obese) have CPAPs, and my wife says I stop breathing at night. "Are you sure?" Well, sir, that's why I would like to do a study.

I had an overnight sleep study scheduled several weeks later, during which time my insurance provider at work changed, and I had to do the process again, and this time only got a take home kit, and just missed the criteria for getting a CPAP.

Years later I went looking for alternate routes, which means paying out of pocket for a CPAP and accessories... But sleeping better and being more healthy.

Isn't a full sleep study test pretty expensive in the US?

I went to a sleep specialist once and the cost of a full overnight polysomnogram was nearly $3000.

I opted for a much cheaper at home test from my GP. Showed no signs of sleep apnea but I worry about the accuracy compared to a full study.

I'm in US and took both a home test and overnight polysomnogram. Both were fully covered my by insurance. My current insurance is definitely not top of the line either

They're pretty damn expensive in the UK, certainly - around £2500 a couple of years ago in central London. (It would have been much cheaper for me to just buy a CPAP and try it out, than to have a polysomnography, but it's notionally forbidden.)

They do. You just have to either pay for one yourself or wait half a year (or maybe way more?) for NHS to provide it.

Medicine according to averages (almost all practicing medicine) may be wildly inappropriate for some. Not usually; that's why averages are sensible to use. But if it isn't working for you, time to try something else.

I’m going through this right now and it feels like everything Americans have complained about socialized healthcare is now true in the US as well: long wait times to see providers, providers that churn through patients like their doing oil changes, providers that just push you along to the next step in a playbook without considering individual needs.

I’ve been dealing with fatigue for about two years and had to preempt a yearly physical to be able to talk to my GP about it in December. That gave me the referral I needed to get a sleep study, which identified moderate apnea. It’s the middle of April and I would have just been getting a provider prescribed auto PAP had it not been for a friend who had an unused one.

Like the author, CPAP is doing nothing for me, so next month the specialist will probably recommend another sleep study, followed by several more months of waiting for appointments and DME providers.

Meanwhile, my wife found that one of the medicines I had been taking had recent studies indicating effects on sleep. I went from 10-20mins of REM a night to 2-2.5 hours by cutting it out prior to any PAP therapy. It should have been done under Dr. supervision, but I can’t ever see my Dr., so I said screw it, found a typical tapering protocol and did it myself.

For shorter term things - sick visits, etc., it is impossible for my wife or me to see anyone at the network of our GP (one of the largest in the state) and have to go to urgent care. The last time my wife wanted an appointment she asked if she could go to another location to get in sooner. They denied the request because of continuity of care. So she went to a minute clinic that is completely unrelated to the network - how does that provide continuity?

It's been like that in the US like forever. Once you actually have medical problems. The main difference is the whole going bankrupt thing.

I'm a US expat living in London for 1.5y. I find the opposite is true.

US healthcare moves much faster and turnaround to getting a new appointment with a specialist is a fraction of the time in the UK (NHS only).

My SO had a personal health issue that she attempted to get help for in the UK. She had to wait months for a GP appointment with the NHS, only to be told "let's monitor the issue" instead of actually doing anything. We went home to the US (making an appointment <2w in advance) and we saw a doctor who immediately found the underlying issue and had it fixed.

I could go on about the health system in the UK...

edit: Ha even the article talks about this! "I am in the system for NHS treatment, but things are so bad that I have not even received an inital letter with a date for a test. It would likely take up to year for the NHS to treat me."

As far as I can follow, the NHS has been severely and intentionally undermined of resources by the ruling party. They are in the cusp of doctors going on strike.

They're trying to get things privatized like they did with rail. You can see how well that turned out

> The main difference is the whole going bankrupt thing.

US healthcare really does seem to want to bankrupt people. As an example, most insurance doesn't cover dental care, which is (in)famously one of the parts of the body that needs the most maintenance.

My insurance doesn't cover my ADHD meds because I have to take more than 1 pill a day. $80/mo for the rest of my life if I want to treat a disorder. (My case is pretty bad, too.)

I (hopefully?!) have decades of life left, and $80/mo is almost $1,000/year. Not super cheap. I actually can't afford this on my own income and have to rely on a family member to help.

Most work plans include a separate dental plan, for which I am thankful. However, near worst-case scenarios for dental issues are comparatively affordable ordeals. My routine dental care is covered for me, but it's affordable either way. I had to have a root canal and crown, which would have been annoying to pay for, but certainly not something that would bankrupt me. If I remember correctly, it was in the ballpark of $2k in the DC metro area. It's still possible to set money aside for possible dental issues and self-insure.

Because dental costs are more reasonable, insurance premiums don't tend to be very high and can be purchased outside of your main health plan. If primary medical costs were more on par with dental costs (as it probably did once upon a time, when the offerings were much more primitive), insurance wouldn't be such a big issue.

> everything Americans have complained about socialized healthcare is now true in the US as well

With the added bonus of paying completely insane amounts.

Totally agreed about the problem of long latencies due to bufferbloat in our medical system. I ran into it last year and I believe it significantly raised my risk of death.

A suggestion in case it's unfamiliar: there are doctors who don't take insurance. I can always see mine within a few days, for $80/month. (I set this up after the above experience.) It's absurd that I have to do this and also pay for insurance separately (paying much more than I did before the Affordable Care Act made insurance plans for catastrophic medical costs illegal) -- but that's where we are.

> everything Americans have complained about socialized healthcare

> long wait times to see providers, providers that churn through patients like their doing oil changes, providers that just push you along to the next step in a playbook without considering individual needs

I don't have any idea what that has to do with "socialized care." If anything, most of those factors resemble the way businesses scale up.

I disagree- socialized care is like insurance. The incentive is to pay out as little as possible. This is true whether it's a government health care program or actual health insurance.

An actual "market" system encourages consumption and competes on price and quality.

Health insurance (public or private) makes sense for catastrophic events (major illnesses) but for regular ongoing things like GP visits and common prescriptions, it's just a middleman that drives up prices and discourages prevention and primary healthcare.

I don't have any experience with US healthcare, but presumably having insurance and whatever conditions they enforce is basically a form of socialized healthcare, no?

If one wanted to, couldn't they find a provider they could pay to deal with whatever issue immediately?

There are three main types of insurance in the US: HMO, PPO, and EPO.

HMO works a lot like my understanding of the UK system (except the government doesn't pay for it); if you want to see a specialist, you need to get permission from the insurance provider, either directly, or (more typically) by having your GP (a.k.a "primary care provider) write you a referral.

PPO and EPO do not require referrals. A PPO typically has high deductibles for doctors that are not contracted with the PPO, and an EPO does not provide any coverage for doctors that aare not contracted with it (the P vs E is "preferred" vs "exclusive").

PPOs tend to have the highest premiums. Anecdotally, HMOs used to be a pretty good deal. From my earliest memories of how health-care worked HMOs didn't add too large of a delay. However, more recently it has been harder to get a referral, and once I get the referral, there are so few local places that accept the HMO (perhaps because of below-market rates paid out?) that a 6+ month wait list to see a specialist is not uncommon (some things like physical therapy having such a long wait-list that it's hardly worth it; I was quoted an 8 month wait list for PT for a shoulder injury, at which point I just googled for exercises I could do).

Also twice now I have been hit by the HMO refusing to pay for emergency care because even though the ER I took my kid to was "in-network" one of the doctors who saw the kid at the ER was an independent contractor which isn't covered by the HMO. Over $1k out-of-pocket each time.

This is a good summary. What's interesting to me to observe here is your PT story is the system working as designed. This intention is not hidden. If one could just google the solution to their problem instead of using scarce resources, as the common phrase goes, that's a good thing actually.

We do an awful lot of rationing in these sorts of ways. It's maddening to me that I pay the astronomical premiums I pay and yet, end up having to play mini-doctor by asking the internet for answers. I do not have any illusions that I'm able to provide sound medical advice to myself or others, but just due to these sorts of issues and also doctors visits that are practically conducted via drive-through, Google MD is often my doctor / PT person / etc of first resort.

If you substitute "google the problem" for "get a printout from my doctor that isn't from a possibly sketchy internet source" I would be a lot happier.

> If one wanted to, couldn't they find a provider they could pay to deal with whatever issue immediately?

If you live in or near a large town, yes, but the price will likely be 4-8x what your insurance company would pay for the same services, and you can't get a quote in advance.

Dealing with untreated sleep apnea right now & it fucking sucks

Breathing properly through your nose when awake & asleep turns out to be really important. I’m incredibly curious on how previous generations knew & the term mouth-breather became a thing, as they were obviously (well, if you’ve never experienced long-term inability to breathe through your nose, maybe it would be hard to understand the severity of the cognitive impact this has) quite right.

I sleep with a short silicone tube jammed into each nostril, and I highly recommend it to everyone!!

I get what feels like twice the amount of air, with zero effort.

It was very uncomfortable the first couple of nights, but now I don’t even feel it, and I now always use them to sleep.

https://a.co/d/18eLtdw

How do you keep them in? I have tried them but they tend to fall out very quick. My nose gets moist and they slip out..

The pack I linked has different sizes, so I picked the biggest one that wasn't uncomfortable. It sometimes slips out but usually only on one side so if I wake up I jam it back in.

These nasal vents are my weirdest-most-effective life tip :-) The idea seems so uncomfortable, but I sleep so much better when the air flows so easily.

This tracks with what I have. Still waiting to obtain my ASV (the second machine he tried; I also have central and obstructive sleep apnea). I had a home sleep study, then a sleep study with a CPAP, then another sleep study with an ASV the following week. Been waiting 6 weeks since then for a call back from the sleep clinic to actually get the ASV. I tried calling them after 2 weeks and they said I had to wait for them to call me which takes 2 to 4 weeks (it's been 6; I'll call them tomorrow).

I actually had a a disnosis and a CPAP two decades ago but I could never sleep with it. I did exactly what he said he did: throw the mask across the room. Since I made myself stick with it in the sleep study thanks to his breathing tips (and not really having an option), I'm sure I can sleep with it now. Also the ASV and the masks available now seem to work a lot better.

For me, green vegetables seem to trigger nervousness and sleeplessness, when I still ate them, I'd wake up at night and think someone is in my room to murder me. I'd get up and wander through my flat, go pee, and sometimes it took like 3-10 Minutes until the feeling of somebody being there would go away.

Been on an elimination diet and trying around for 5 years now, there seem to be some pointers towards SIBO, but I haven't managed to fast long enough to do the test yet.

When I eat the wrong thing, it usually takes 3-4 days for any effects to show. Would make sense if it's fermentation or rot in the intestines that's triggering this. Hope you'll get well soon!

If it takes 4 days to show, I would never be able to associate with my eating habits :(

How strange that the only way to get one of those devices is via the NHS. Usually if you have to wait too long, or something isn't available in the UK, there's a private medical service more than willing to take your money!

OP here. I purchased the first device privately from resmed (one of the main cpap vendors), but the actual one i needed was an ASV and this was refused privately and only available via the NHS. Reading between the lines, I expect the NHS is one of their main customers and had ordered a huge backlog, so they got priority.

I would love to see an open-source and open-hardware project for an ASV...

Moreover it could easily be coupled with the sensors and soft required to work as a sleep analyzer, in order to help diagnose central apnea vs obstructive apnea, etc.

I commented on this above but I think this is because ASV users need to be screened for heart issues first!

> This meant I would have no way of seeing results for myself, instead I would to pay out £150 each time to get the consultant to analyse for me.

I think I would have just paid the money (at least for a few months to see if I'm getting my money's worth) rather than going through all that trouble of trying out different machines, etc.

That's just me though. I realize some people are more comfortable with taking matters into their own hands and enjoy getting into the nitty gritty.

I'm also the kind of person who would much rather hire a trusted plumber, mechanic, etc to just get it done than muck about it myself.

Some people seem to have luck by taking 100mg vitamin B1 before sleep for central apnea:

https://www.cpaptalk.com/viewtopic/t176555/Found-a-vitamin-t...

Given B1 seems to be working similarly to acetazolamide but appears to be much safer, I am wondering if anyone is using it for altitude sickness? Doping up a few grams of thiamine just before climbing?

almost not worth trying for me given how well a low dose of acetazolamide works for everyone I know but would be interesting to know.

CPAP works great for many people who have severe sleep apnea. It’s much more difficult to help people who have mild OSA / UARS. They don’t benefit from CPAP to the same degree.

Do you want to elaborate on that? AFAIK CPAP absolutely benefits people with mild OSA or UARS, so I'm not sure what you mean?

> I would have gone to bed dressed in a pink gimp suit, if it meant I might I have got a decent nights kip.

This line had me laughing out loud. Amazing article, glad you found what worked for you!

It's interesting, but being even casually interested in strength training and muscular hypertrophy means that I read as far as the second paragraph and thought "It's probably sleep apnea". It's a relatively common issue in larger individuals, including those carrying a lot of muscle. Probably better than half the heavyweight powerlifters/strongman athletes that I know use a CPAP.

I saw an otolaryngology, got a sleep study, was prescribed a cpap with the study recommended pressure, and I am fine. I suppose I could have wandered the tech desert, but this is my health we are talking about. I have other tasks I am better suited to do than wander through a field I had zero training in. I approach my cardiology issues the same way.

The author is in the UK. They noted that they were on a wait-list just to get tested and likely wouldn't be for a year at least so they decided to take it on themselves.

> but this is my health we are talking about

I think that this is the point of the article. In the end, you are responsible for your own health. From the article:

> I am in the system for NHS treatment, but things are so bad that I have not even received an inital letter with a date for a test. It would likely take up to year for the NHS to treat me.

So he could have just waited, trusting that the professionals will eventually diagnose him and give him the right treatment.

But it was his health, so he had a strong incentive to take independent action.

It would be interesting to find out the root cause of this central apnea.

Maybe that's the only risk of short-circuiting the medical establishment, that now the author is satisfied with the solution he found for the central apnea which is one symptom, without being concerned with solving its cause (that could have other consequences)?

Anyone want to join me in making a dating app for people who need CPAP machines to sleep? I am semi-serious haha

> Night of the living brain fog dead or how I hacked myself better via open source

The use of "hacking" in the title is unfortunate, since it strongly brings to mind software engineers confidently loading up on weird supplements to do stuff like "boost intelligence" without much understanding of what they're doing.

This article is very much not that, and is very sensible.

The article is more about hacking his medical system so he could move through the established process faster.

Me it reminds of that guy who DIY genetically modified a virus to cure his lactose intolerance (for a year).

> reminds of that guy who DIY genetically modified a virus to cure his lactose intolerance (for a year)

That's awesome, have a link?

Not the original video, but a follow-up one by the same guy talking about results and future plans: https://youtu.be/aoczYXJeMY4

https://www.youtube.com/watch?v=J3FcbFqSoQY&t=0

The word iron did not show up a single time in this article. It is extremely important to make sure your iron and ferritin levels are sufficient or you will feel tired and depressed all the time.

Blood panel was done

CBC won't show low ferritin. You can feel awful if your hemoglobin is OK but your ferritin is low.

Interesting!

DellaValle DM, Haas JD. Impact of iron depletion without anemia on performance in trained endurance athletes at the beginning of a training season: a study of female collegiate rowers. Int J Sport Nutr Exerc Metab. 2011;21(6):501-6. Accessed April 10, 2023. https://www.qxmd.com/r/22089308

Any doctor worth their salt should and will do this if you come in complaining about fatigue. They did with me. Someone presenting specific symptoms isn't going to get just a CBC.

I give a moment of silence to all the people on antidepressants who are actually iron and/or vitamin deficient and don't know it.

They should. At least here they do. I know this is how we detected my mom's hemochromatosis.

A CBC is a specific and very common lab test and does not include a ferritin level. It’s a separate test.

Do either have a connection to sleep apnea?

"Iron deficiency and sleep - A scoping review"[0] did a literature review and found many studies linking Iron Deficiency to poor sleep outcomes for various particular sleep disorders. It summarizes the findings with:

> iron investigation and supplementation should be considered in patients presenting with sleep disorders

[0] https://pubmed.ncbi.nlm.nih.gov/32224451/

Three sentences in, it was obviously sleep apnea. Guess the author was going for dramatic irony. I'm curious why he didn't do a cursory Internet search for his symptoms.

Why are CPAP machines still so expensive. I saw a teardown of one, it was not that special. Just lots of foam.. (that needs to stay in place haha).

Curious: can the Apple Watch detect this sort of thing?

According to an Apple support page[0],

> With Apple Watch Series 3 or later with watchOS 8, you can measure and track your Respiratory Rate.2 With Track Sleep with Apple Watch turned on, when you wear your Apple Watch to bed, it will automatically measure and record the number of times you breathe in a minute.

I assume that this information is enough to warrant "go see a sleep specialist", but possibly not much more than that. There is at least one watchOS app that claims to use the Apple Watch data to detect sleep apnea[1], though it may not be a completely reliable source[2].

With Apple's increasing focus on the health for the Apple Watch, I would not be surprised if future watchOS updates (or future Watch hardware) focus on sleep apnea detection as a flagship feature.

[0] https://support.apple.com/en-us/HT211685

[1] https://9to5mac.com/2022/05/10/napbot-sleep-apnea-analysis/

[2] https://www.reddit.com/r/SleepApnea/comments/vxkkxx/napbot_a...

For WatchOS, you would start by running the Sleep App[0] and notice that there is an issue with your sleep stages.

Next you might move onto an app, like SnoreLab[1] where you record the audio of your sleep each night and can listen back to where you are having sleep interruptions. At that point, you would likely hear your breathing process.

Moving onto the Withings Sleep Analyzer[3] (as shown in the article) will fill out your data but by step 2, you will should probably already be setting up an appointment with your doctor for sleep apnea.

[0] https://support.apple.com/guide/watch/track-your-sleep-apd83... [1] https://www.snorelab.com/ [3] https://www.withings.com/be/en/sleep-analyzer

It can detect bad sleep patterns, and modern versions can detect pulse-ox, but not specifically apnea, AFAICT. It is definitely a useful too, and there are cheaper alternatives (I’m using an $80 Garmin) that give “good enough” info for personal tracking, but in my experience, Drs. don’t care about it.

There's going to be a lot of variation between people, so I'll just project my experience with this:

  * Mild sleep apnea, ~15 events per hour, undiagnosed until after my severe burnout in the spring of 2019
  * Breathe Right strips brought me back to life in just a day or two (no affiliation)
  * Lightly taping my mouth at night with 1/4" surgical tape (or 1/2 ripped down the center) about 2" long in an X shape (to prevent stretching the philtrum) basically cured me, be sure to do this with a relaxed expression so that the mouth can be opened easily in an emergency to breathe again
  * Problem was due to slippage in jaw joint causing misaligned midline, causing my jaw to fall open and tongue to fall towards throat
  * Treatment with an Advanced Lightwire Functional (ALF) dental appliance fixed jaw alignment over the course of 9-18 months
  * I believe that pre-2000s orthodontics and the quest to flatten faces with headgear at too young an age is largely responsible for the outbreak of sleep apnea
  * Oral appliances for sleep apnea advance the jaw forward (the opposite action of headgear) and I would wager probably often would work better than CPAP
  * Invisalign and other aligners (no affiliation) are supposedly working on adding clasps to keep the jaw closed during sleep, and I plan to follow up on this but have been too busy
  * Sleep apnea coincided with a breakdown of the gut for me, and I developed food sensitivities to nearly everything I was eating, lingering today with dairy, grains, some legumes and nightshades
  * My joint pain went away when I quit eating the foods I was sensitive to, so I wonder if sleep apnea -> food sensitivities -> autoimmune diseases like allergies and even arthritis?
  * A thick neck increases the odds of getting sleep apnea, If you work out or are overweight, you probably have it (neck is the same size as biceps)
  * Adding a 1-2" piece of foam under my pillow inside the pillowcase also helps by keeping the spine in a neutral alignment, since nearly all pillows are too thin for side sleepers
  * I'm hoping to be able to sleep on my back after getting a nighttime appliance to hold my jaw and tongue in place
  * Tongue posture exercises are key, find an Orofacial Myofunctional Therapy doctor online (they teach remotely) perhaps best to start with a local Temporomandibular Joint Dysfunction (TMJ) doctor and get a referral
  * Force feeding water by drinking a glass after using the restroom, upon waking and before bed helps greatly as well, perhaps by thinning the blood so the heart and lungs don't have to work so hard

After fixing the physical causes of chronic fatigue, I feel better, but still start from a place of 0 energy and motivation after a lifetime of negative reinforcement and rarely having a win. The only thing that works for me is to stop all internal monologue and observe life passing as sort of a waking meditative practice as I task and adult, to positively reinforce gratitude.

I also discovered that the anxiety from ADHD symptoms (I'm still undiagnosed but check the boxes) feels the same as quitting smoking, and the prolonged agony of it is greatly exacerbated by the increased cortisol load of sleep apnea and work stress. I think about mental health now the same way as weight training, where there is a period of stimulus, deficit, overcompensation, then long slow decline if the stimulus is continued without rest/recovery. Now I consciously monitor my cognitive load, so rather than redlining for 8 hours straight, I sprint for 20 minutes and take a short rest, which is basically the Pomodoro method. I also try to get 20 minutes of downtime in each day, ideally as meditation, and have told everyone that Saturday is my me-day for active recovery, to do inner-child work for my survival. I have started to explore other realities like the kind that come while playing music, and have begun to experience the sensation of motivation again, which feels like a blessing.

+1 for breathe right strips. they're all i need for a good night's sleep. they are kind of expensive but you can buy them in bulk from amazon and a good night's sleep is priceless. i would recommend everyone try it just to see if it helps.

sometimes i wear them while out and about, because i'm at the age where i really don't care what other people think of me. also, a lot of athletes use them while working out.

Wow awesome! I never knew about that home device you could order off of Amazon. Helps you rule out sleep apnea fairly easily!

I have a chance of having sleep apnea since my sleep is atrocious and extremely light, but I'm not overweight and I also can't sleep on my back or side, meaning a machine with mask ain't gonna cut it. Thus I've not even bothered. Also I wouldn't fall asleep in a sleep study location (I can't sleep outside of my bed, with any noise, lights, etc)

This is similar to my situation. I am a fit individual that is in the gym five days a week, runs marathons, backcountry skis multiple times a week, etc. and have diagnosed sleep apnea. However, I can't for the life of me get through a single night with the machine to the point where it has sat in a closet for months. I also sleep on my side or stomach so I immediately wake up to the mask blasting air at me due to a seal. The nose pillows didn't work as well.

Have you tried a mandibular adjustment device? You can get them pretty cheap online. They push your lower jaw forward. The only real downside is that they can screw with your teeth a little.

I have mild sleep apnea due to TMJ and went through an odyssey trying out a mandibular adjustment device. It absolutely wrecked my jaw, made my TMJ far worse than it was prior to using it. It also did more than "screw with my teeth a little," it quite literally pushed my bottom teeth forward and destroyed my bite.

The device was fitted by apparently one of the best docs of their kind in SoCal. And yet, after looking into it, my experience seems quite common.

At this point I've just accepted my TMJ and mild sleep apnea. Nothing I've tried has helped at all.

I have bruxism myself... What's the link with sleep apnea exactly? The jaw's position pushing the tongue back?

Not being overweight has zero impact in your ability to have sleep apnea. Get tested anyway.

There are home tests. That’s how my sleep apnea was diagnosed.

Are there no sleep clinics in the UK?

> The morale of the story, you need to sometimes tackle your own health and take matters into your own hands

I am not a doctor, nor am I a lawyer.

This is, in general, horrible, and dangerous advice. The problem being how to know if this is one of those times. I am happy it worked for sure. But embracing the idea might well kill people.

A recent opinion I saw from a doctor that made sense to me was: the reason they tell people to absolutely not do a lot of things is because there is a certain percentage of people who aren't competent to do anything on their own. The example given was Q-tips: we all know the advice that you shouldn't put them in your ears... even though that's literally what they're designed for. The doctor's explanation was that something like 10% of people actually will burst their own eardrums with a Q-tip, so you advise 100% not to use it to avert the harm to that minority. (If anyone knows where I saw this feel free to say; I can't recall.)

In general, if someone's reason for tackling their own health is because doctors (including specialists) have failed to help, I don't see why or how you'd argue against that. Even if you're bursting your own eardrums with cotton swabs, at some point you've got to do something.

“The John Snow Project has set out some of the growing body of evidence that suggests COVID-19 is having serious adverse long-term impacts on human health. This evidence is, however, being subjected to the same ‘doubt as product’ approach that was successfully deployed by the tobacco lobby to slow the introduction of public health measures to protect people from the harms of smoking, and the underlying economic incentive is similar to the rationale of the cigarette companies. While attendees at the World Economic Forum in Davos had to be vaccinated, wear masks, undergo regular COVID-19 tests, and used advanced air ventilation, filtration and treatment to reduce their risk of infection, the costs of such protocols to protect the general public are widely viewed as prohibitively expensive.”

https://johnsnowproject.org/insights/merchants-of-doubt/

Open source is not how we got here. We now reap the benefits of centuries of well organized publicly funded research and private for profit business activities. We should not misunderstand or misconstrue history.

What technology and advancement has open source really given us, that isn't just piracy when it comes right down to it? I realize I am asking a selection of would-be pirates. Genuine question.

We skim the cream off the top and tend to take all the credit.

You're saying open source is nothing but piracy in the long run? Strange. But if this open source pirate subject just translates to open source technology being a parasite feeding off of organized large scale labor like that from a geopolitical country, then any open source failure would invite the possibility of open source being an optional feature of any intellectual culture. Open source is a failed experiment, perhaps? Open source being a failed experiment would definitely make sense if open source is basically the Soviet Union after Joseph Stalin. On the way to its decentralizing disintegration into new derivatives.

> I accumulated a laundry list of attempts to try and resolve the situation, including lots of sleep hygiene ‘hacks’.

[long list of mumbo-jumbo tik-tok-style “lifehacks”]

Anything but seeing a doctor?

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