Poor sleep drove me insane, and my long path to recovery | Hacker News Reader

Poor sleep drove me insane, and my long path to recovery

writing.samsonhu.com

655 pointsWagthesam364 comments

This is quite raw and I'm actually somewhat afraid to share this. But I think sleep apnea is criminally under-discussed and underdiagnosed. It can f your life up sideways and can take years to diagnose. So sharing my story and hope I can advocate for it.

If you have sleep apnea, no amount of sleep gadgets, good habits, exercise, will help you. You must fix the root cause

Interesting. I bet close to all young skinny people with sleep apnea must remain undiagnosed.

My generalist doc basically said "if you really insist we can do a polysomnography, but I'm pretty sure you don't have it, you're young, skinny and sporty. There isn't really much that helps that you can do about it anyway".

I did insist and it turned out that I do have it. The changes in life I experienced are similar to yours. The doc's advice was double wrong in my case.

Some other interesting thing I noticed: there seems to be something messed up about medical diagnosis equipment. At least in sleep apnea.

I've done about 5 "sleep tests" in different countries with different equipment and the results varied between 0, a few 5-6 and one with 15 events per hour (no apnea, mild apnea and "medium"? apnea). The 0 to 6 where with portable "take home" devices, the 15 was a more serious feeling expensive looking in-hospital device with tons of wiring all over the body.

So in short: the same patient can be cured and pretty severly suffering at the same time?!

I'm not sure what's going on there but it smells like corruption in medical devices like that one Netflix documentary talks about. It was an episode of "dirty money" if I remember correctly.

Yes, I was a young fit 23 year old, like, six pack abs and muscular.

I finally got my sleep study, and I had 79 AHI! When I went to get the equipment, they thought I would be severely obese.

It changed my life, but I worry how much long term damage was done until then. My friend told me when I slept over (around age 14) that I would literally stop breathing and he thought I was dead. Then I would suddenly gasp awake.

Anyways, if you're having trouble remaining awake, definitely get tested. If you have everyday headaches, get tested! Life can be much better.

Few medical doctors seem to grasp statistics. They solely consider trends, so it sucks to be a patient who is an outlier. Especially considering lifestyle factors and genetics aren't always properly controlled for in studies.

Just look at how something like different dosages of alcohol affects different populations!

I personally have a high BMI and high creatinine levels. No, I'm not obese with messed up kidneys (which the doctors thought); I just lift a lot and supplement with creatine.

Of course, doctors tend to be overworked, so I don't doubt they would be able to think clearly if they worked normal shifts and got adequate rest.

When I was in my early 20s, I weighed under 60kg (which put me at a BMI of 19ish). I was tired all the time. I went through the usual gauntlet of tests, including a sleep study. The doctors couldn't find any explanation, and after months of this I sort of got used to it.

The months turned into years, and in my mid 30s, my upstairs neighbour complained about my loud snoring. Back to tests, another sleep study. Diagnosis: sleep apnea. They then asked me why I never got treatment in the first place, because apparently that first sleep study indicated sleep apnea ... but because the AHI was on the lower end, and because I was young and skinny, the doctor didn't think it was relevant for me to know.

Sigh.

AHI really doesn't mean anything besides the trivial: the density of apneas and hypopneas (relative to the applied definition of both) https://onlinelibrary.wiley.com/doi/full/10.1111/jsr.13066

The intensity of my sleep apnea varies from night to night, and you might be similar?

Based on oxygen levels, mine also varies from subclinial to "medium" apnea. I was deemed not to have sleep apnea based on the take-home test or the in-hospital test... but I wore my oxygen-logging ring during the in-hospital test to check it was calibrated to the hospital's equipment (it was), and the specialist then diagnosed me based on my measurements of oxygen levels on other nights.

Oxygen saturation is something of a red herring when it comes to sleep apnea diagnosis. Sure, having significant desaturation (<85%) is not good for you. But what will really wreck you is the arousals. Someone here mentioned an AHI of 70, that doesn't just mean you're not breathing right seventy times per hour, it also means you're waking up seventy times per hour. With that many arousals, your saturation might not budge all that much, but you're basically not getting any sleep at all.

And while we're on the subject, AHI is also pretty terrible. You could have an AHI of say, 5, which means "you don't have sleep apnea", but if you're sleeping 8 hours and these events only occur during the 2 hours of REM, then you've got an AHI of 20 during REM sleep, which will still wreck you.

What brand is your ring? I know some doctors that would love that!

What are O2 levels that suggest sleep apnea?

I feel like that doesn't place enough weight on the bull hypothesis- the devices are bad because most things are bad, because being good is hard.

Might be that, but on a meta level: the studies are too expensive and too big of a hassle, because there's not enough demand, because not enough people are being directed to make them, instead having their problems rounded up to e.g. obesity, because that's much easier for everyone than getting a test that's very expensive... You can see a feedback loop forming here.

Apnea is nearly universal among older weightlifters. It is not well understood, but it seems that relatively small changes to the physiology of the neck end up interfering with breathing. Many healthy and strong people don't have any idea what is making them feel bad until many other alternative explanations are eliminated.

I wonder if there's a more simple remedy like a tilted bedframe or a hammock or something.

Many advice trying a CPAP device first instead of going for a sleep study if you suspect apnea for this exact reason. The sleep tests are expensive and often not accurate.

There are at home sleep tests. Basically a wristband that measures your sleep. Then you take it back to the clinic and they read the results. I don't remember how much it was but it wasn't too much.

The problem is that CPAP really sucks, and if you're more on the UARS side(arousals over apneas and hypopneas), or have poor nasal breathing, it's likely to disrupt your sleep more than it helps it.

*likely US based medical advice

A sleep test is $100 ($75 USD) here.

Isn’t a CPAP more without insurance coverage?

Can I ask what symptoms you had as a skinny / sporty individual with sleep apnea?

Needing 11-12 hours of sleep a night, frequent dreams of drowning or not being able to breath, daily headaches, falling asleep no matter how much you wish to remain awake (such as during school lecture or driving). . . And if you can, have your partner watch you sleep. Mine was what did it for me, she said I worried her half to death, and thought one day she would wake up to find me dead (I frequently would stop breathing, then suddenly gasp awake, and of course, I snored like a monster).

> But I think sleep apnea is criminally under-discussed and underdiagnosed.

I agree that it’s under-diagnosed in people who have it, but it’s actually discussed very widely across social media and in person.

I have some sleep medicine professionals in my extended social circle. It’s common to hear stories of people coming in convinced that they must have sleep apnea after reading about it online, but their sleep studies are nearly perfect.

There’s one doctor in my area who opened her own clinic and pushes apnea studies very hard in advertising. Apparently they score tests differently enough that they can find some reason to prescribe CPAPs to almost everyone who comes through her office, which of course they also happily sell. It has gotten bad enough that she’s becoming well known among doctors as someone to avoid for referrals. One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything.

If anyone suspects sleep apnea they should definitely look into it, but make sure you’re going to a provider aligned with your best interests.

> One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything.

Without commenting on the behavior of the doctor in question, I'd like to offer a rebuttal to this point. CPAP is the gold standard for apnea treatment, but there are a lot of reasons people don't stick with treatment. It's hard enough to get used to sleeping with something on your face at night, and even harder if your machine isn't configured to the exact right settings, something that requires experimentation and data.

The machine sends telemetry to your doctor, but it's just averages for the night and offers no useful insight. Doctors literally have no tools to help you debug the process. My doctor barely tried. She tossed a few mask samples my way. I really needed support and their office told me that I should see a therapist instead because my insomnia was in my head. I was having less than 5 events per hour with the machine on, who cares if I was waking up choking 3 times a night? I can't fully blame them, because they didn't have any more information to go on.

There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful. I didn't go see a therapist, and instead resolved to get to the root of the problem. From start to finish it took me a year to get a full night's sleep with a CPAP, and that was only through learning to read and analyze the data. It was a tremendous effort, and the only reason I didn't give up was because I had just been tired for so many years that there was no other option.

CPAP isn't a pill that you can swallow and just start feeling better. My point is just that people not sticking to CPAP is very very common. I'd be curious to see a source linking this to incorrect diagnoses.

> There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful

WHOA! Thank you for this. I will be checking this out now!

It's really ridiculous to have all this data and not use it. We pay good money for the device and the doctors, and this data should be investigated.

> but their sleep studies are nearly perfect.

This is because most labs only score AHI, often using 4% desat criteria, which underscore prevalence/severity possibly by as much as 80%.

Most younger, non-obese female patients fall on the UARS side of the spectrum, with RERA events dominating over apneas and hypopneas- where an older man with 3 AHI might have 6 RDI, an excellent result for their age, it's common for a young person to have 15+ RDI, at which point most people struggle with day-to-day functioning.

> One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything.

This in no way implies incorrect diagnoses. CPAP dropout rates are 40%+ even in people scored using the least sensitive criteria. CPAP just genuinely sucks, especially for anyone whose nasal breathing is poor. Most people with UARS don't benefit from it at all, but get way better with oral appliances, skeletal treatment, or nasal surgery.

This comment is very important. I wouldn't trust social media reports as a source for understanding prevalence of conditions. The mimetic dynamics can cause severe exaggeratiobs and over representation. Even the thread here can make a large effect on baseless self diagnosis (I'm not doubting the OP) which many actors will happily take advantage of for their own personal gains.

Nowadays I trust YT more than any doctor around.

I find doctors on YT more credible actually. Because they actually serve their viewers, actually addressing their particular conditions, explaing in details. As well as those who fixed their own problems after long struggle.

When you watch enough (this mean enough to make you feel older) to understand who you watch, compare opposite views enough and didn't stick to any pharma fakes you find knowledge worth more than efforts put.

And later you actually learn reading technical research yourself and differentiating epidemiological crap from actual sound knowledge.

If you even aren't sure if you get it completely ( and you obviously should not be sure) thats your starting point to find people (it's plural) who actually understand it.

That's how you scale up your way to truth. Or to a cult if you stop too early, you probably shouldn't ever stop, we learn whole life.

All for free, except your time. That's the world we live in now. What a beautiful world it would be without all imposed intermediaries payed for wasting our time and keeping us sick.

But you learn, so you save on drugs, funding incompetent "experts" and probably premature death.

And then you save your family and get mentally and physically healthier children (except if you stop at becoming vegan, then it's opposite of that, and probably you end up in hell, for sure should)

Try to compare worst case scenarios of the outcome of these discussions that are unapproved by you personally:

1. Somebody who has sleep apnea but didn't know it until now can get diagnosed and massively improve her life without any negative side effects.

2. Somebody mistakenly thinks they have sleep apnea and might waste some time and a little money until they understand they never had sleep apnea. No other negative side effects.

> but their sleep studies are nearly perfect.

That's because most sleep studies are crap, unfortunately. I only got diagnosed with my 3rd PSG, which included the rare Pes because I insisted on it.

I really believe that too

Good points, but also if your job is causing this amount of suffering, don’t wait. GTFO as fast as you can, otherwise you’re going to work your way into a death spiral that is even harder to get out of (poor sleep, weight gain, emotional distress, negative impacts to relationships, grinding teeth during sleep leading to dental damage, etc).

Defend your sleep and well-being like you would a loved one. No one will do it for you.

As soon as I realized my healthy sleep and wage work were incompatible, I quit working for others permanently and have been far healthier since then. Overnight and persistent improvement. Now I sleep well and when I don’t at night I just sleep when I want to. Simple

I assume you mean freelancing. I tried that too, but found that I'm not good at sales/marketing side of things, so I went back to a regular job.

How is an 8 hour a day shift incompatible with healthy sleep?

I agree with this. For me, I stuck it out longer than I should have due to a combination of youthful idiocy with a chip on my shoulder, a work visa, and a fear that if I threw in the towel now I would never work again.

In retrospect, I would have been doomed if it was that bad regardless, so I recommend others to take the life raft while they can

You're doing good work. I've had Sleep Disordered Breathing since childhood from a mix of recessed jaws and allergies, and my journey was a decline from extreme ADHD in my 10s, to overwhelming fatigue in my early 20s, to essentially dementia.

Nobody offered or was willing to test for anything. I was gaslit and sent to psychiatrists any time I tried seeing a doctor.

By now, it's not my only debilitating chronic condition, and no matter PAP, meds or how hard I try, I'm not capable of basic functioning. Making appointments is extremely difficult, earning money is unrealistic.

In all honesty, I think it's probably too late for me. I have nobody who'd take care of me, and I can't do it myself. My life will eventually end by my own hand, and I don't understand why I'm putting it off.

It's definitely not too late for you mate, no matter how it feels in the short term.

You're putting it off because deep down your subconscious still knows that you are important and have innate value. When things are dark it's easy to forget it but the world needs you, people you know need you and love you. I suspect it's a trick of the mind that hides that from us temporarily.

Anything you do will help and it will get better. Take each day as it comes and note every small win.

Try, fail, try again, fail again but better.

What you are feeling will slowly pass and fade as unlikely as that may sound.

Like a cut healing, one day you just notice that you can remember good things again. Then you wonder why you ever felt that way and you'll be able to keep an eye out in case it ever happens again.

My own sleep problems are caused by allergies, I think. Nasal inflammation stops me sleeping but I also suspect it plays a direct role in depression.

Little things that have helped me:

  * Regularly vacuuming bedding.
  * Boil washing bedding to kill off any dust mites.
  * Vacuuming the house in general.
  * Getting more exercise, even just going for a walk every day is good.  Being outside also helps boost vitamin D.
  * Cleaning teeth properly including flossing.  That's to help with gum inflammation which helps with inflammation in general.
  * Drinking more water.  I like keeping a bottle of cold water in the fridge.  I read somewhere that dehydration was bad for inflammation.

How much of that is just anecdotally helpful I don't know but it's simple and cheap to do.

Oh and don't forget that you can talk to people confidentially when you need to:

https://www.psychologytoday.com/us/basics/suicide/suicide-pr...

I'm not a person who went from high functioning to struggling. I'm a person who went from no longer able to attend high school to ten years of being trapped at home by progressively debilitating fatigue.

I've tried hundreds of things over the years, but it's like playing whack-a-mole or trying to slay the mythical hydra. For every improvement I manage, I fail two. No matter what I do, it isn't enough. I can barely take basic care of myself, treatment is unachievable.

I fooled myself into thinking it'd get better when I started PAP, regularly working out. But it just wasn't enough to function. And then extreme post-meal fatigue hit, and everything has gone to shit.

At this point, I'm not even able to try psychologically. I've given up. It's over. Each of my problems has a realistic fix, but none are achievable for me. I can't even do my own groceries or prepare food half of the days.

This makes me really sad to read. I really hope you don't do that. I can't imagine how hard this must have been for you.

I sometimes feel like life is to much. What helps me is the realization that life right now is hard but I am enduring. What makes it feel to much is the feeling that this burden is going to go on forever. So I try to be satisfied with the fact that I am capable of handling life right now, and the future is a problem for future me.

What techniques have you looked into for improving your condition?

It makes me sad too, but it just is what it is. I've had individual days of the sun shining through the clouds, but in the end, the trajectory of my life is always downwards.

It doesn't matter what I tried. I don't have enough executive function to stick to it. For every win, I fail two other things. It's a thankless, Sisyphean struggle just to survive from one day to the next.

I wish I could catch a break, but my other problem is horrifying, debilitating, day-long fatigue after eating nontrivial amounts of anything at all. No specific triggers, it's either starve myself or feel so horrible I can't even read/watch/game to distract myself.

It's just too much on top of abysmal sleep.

Its been shown that sleep apnea related brain damage reverses completely within a year of treatment. If your issue is a narrow airway due to a recessed jaw an MMA can be curative. Insurance covers MMA if AHI > 15.

Do you have people around you that can help cover an MMA if you need to self fund? Or people you can borrow money from? Dr Alfaro in Barecelona will do it much cheaper than the US.

I understand the dread. I also saw multiple suicides in the UARS/Sleep apnea communities. I hope you find the strength to continue

My dude, Alfaro charges prices that are vastly out of reach of anyone not made of money, and I'm at a point where making Dr appointments in the first place, nevermind coordinating travel, pushes me to my limits.

I can probably get it done under public healthcare where I live, but I don't know if I can afford orthodontics, even if it's "only" a few thousand bucks over here.

Would an MSE yield sufficient results as well? Seems less invasive than full orthognathic surgery.

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

I won't advise anything. Only you can figure out eventually what's helping you

But the first thing is providing body with essentials.

And these for sure are balanced proteins daily. Especially first meal. And it shouldn't spike insulin = no carbs.

Food naturally balanced without manual mixing is: eggs, meat, fish, dairy

And if there isn't 10-15gram of balanced proteins body doesn't even start using it - because it's not cost effective to start machine fully.

That's why small meals are never working, only wasting body energy.

Start simple and general. it's easy to get lost in details while big picture may show something different

I fixed my histamine troubles with a specific antihistamine bacteria mix probiotic. without drugs. doctors. with the trashy internet and persistence

I didn't do anything to myself because I'm an egoist, I selfishly want to see future, of childish curiousity, I can be sick, half dead, burden to others, in don't care, I want to see cool future and I believe I can fix things, maybe I am slow, but i always get there, step by step, try after try, even if stopping and reversing bad steps. And I refuse to believe any mental issue is irreversible. I believe we have godly bodies that given a chance can be fixed itself. We just put inhuman things in it. Or our pregnant mothers did. But nature saw it all and worse.

I appreciate you sharing your story. I had a similar journey over the last couple years because of the pandemic. Looking back now it was definitely an issue at least as far back as early teens.

I used to work out a lot, and very intensely as that was the only thing that made me feel "awake". It wasn't until the lockdowns when I couldn't get to the gym that it got bad enough that I also started my own journey to this diagnosis.

I had started living more in the dream world than the real world and being awake was a daze. I became distant to the world and lost my imagination, memory, and emotion. I was also questioning how I could ever go on with my current job and life.

Thankfully, I also started a sleep apnea treatment (oral appliance, and later CPAP) after many discussions with my doctor. This mostly fixed my condition. The difference is incredible and I don't have the words to describe how it has changed my life.

So I want to say thank you for sharing your story, you're not alone and I hope others see your story and get the help they need.

If you've read this story and suffer any of the symptoms mentioned, I highly recommend doing a sleep study, it's truly life altering.

I used to be known as someone that partied hard. Even at work I was the guy on the technical teams that found all the degenerates on the sales teams to go out with. Then after the hangovers got too much (probably due to sleep apnea), I switched to extreme sports. Snowboarding in high consequence terrain, kitesurfing, motorcycle track riding, dirt biking single track. Anything that took the edge off and similarly made me clear headed

Alcohol and surprisingly even 0% alcohol beer (not sure how much I can attribute to nocebo effect) completely wrecks my sleep. My nasal mucus thickens so much that I can't breathe properly when lying down. And it's not like I'm not drinking water and keeping hydration in check when I drink. I gave up on alcohol completely.

I confirm that exercises do help. Anecdotally last week I woke up with an obstructed nostril. I tried to fix it by washing it abundantly with saline solution, did it a dozen times without much success. Later I went to ride on my road bike and in less than 30s both nostrils were perfectly cleared.

Thank you for this, this is awesome. You shared a long, challenging, and deeply personal experience with candor and empathy. Well done!

I grew up in an agricultural area and everyone had respiratory issues from the massive amounts of pesticide and pollen in the area. I was also allergic to house dust mites. It was bad! I remember being unable to breathe through my nose at all for years, having surgery, and completely changing my experience of life. I've recently noticed that i'm having quite a bit of trouble breathing at night, and those old demons are coming back. Your writeup is inspiring me to do a closer investigation as I have been experiencing very similar issues - brainfog, memory loss, all the above.

Your comments is also on point around the shortcomings of OneMedical-style rotating cast of practitioners rather than the longer term relationship with a caregiver.

I know story first hand about a boy with a strong astma on breathing machine daily from dusty capital. When mom moved him to my clean region with fresh air he stopped needing it after two weeks.

But even living here can cause health issues because of winter. More exactly burning coal, not being able to wind room before sleep with clean air, sticking in heated house in dry air and washing in hard (?) water with too much calcium and other minerals.

I had allergy to pollen every year counted with a watch. The same week, hospital, nearly choked up to death. I was 7-8yo.

It disappeared itself. but I think I changed my diet as a teenager. Later discovered histamine sensitivity, the hard way.

Everything eventually comes to our diet not being what it was before inventing farming in natural conditions, our actual diet messing up our natural biom, including already erased majority of bacteria we originally had as mammals and mistakes of our parents impacting our wiring before getting born, especially in pregnancy period (including being born the wrong hole).

Later it's just our body adapting to what it has and coping as it can. The older the more bad accumulates.

Adding new experimental ideas on top of that.. Humanity is not smart, but it surely is persistent at blindly trying things.

It's just one person finds it earlier other later and sometimes have a different kind of luck.

Thanks for sharing this story, it's very encouraging to read. I really resonate with this as I'm currently facing similar struggles and overall just feeling like I'm sinking and zombie-like.

I had an at-home test that was not positive for obstructive sleep apnea so I landed on a 6-month queue for a test at a sleep lab (hello from over in Vancouver).

I've felt really discouraged by that because it's left me back at "I have no idea what's wrong". I snore (occasionally "like a banshee"), always have nasal congestion while sleeping, wake up every night once (or even twice) needing to urinate and with an extremely dry mouth, and no longer remember what a well rested sleep feels like.

Even now, I'm taking an extended time off work and hoping the lack of work stress would increase my sleep quality but to no avail. If anything, because my circumstances are keeping me away from home, my sleep has gotten even worse to the point where I'm consistently lethargic and too tired to do anything most days.

I only very recently learned about sinus obstruction after taking Affrin (for a cold) and realizing just how clear my sinus was compared to mu average day.

Everything you wrote about allergies and other self-experimentation is very helpful for awareness. I also had no idea positional therapy was a thing, which is helpful as I'm a stomach sleeper.

It has certainly given me more to understand and proceed with doctors for.

Get tested for diabetes just in case? Urination and dry mouth are symptoms that I see you mentioned which don't seem to be apnea related. I'm not a doctor.

Waking up several times every night and going to pee is a very common symptom of sleep apnea, I was told by my sleep doctor.

Dry mouth happens when you breathe through your mouth at night, which is also common in sleep apnea patients.

Upvoting for highlighting sleep apnea. Sleep apnea really is insidious. It limits capacities in ways that are unknowable to the afflicted until they are treated and the limits are released.

[I don't agree that sleep gadgets of one variety or another don't help. CPAP, mandibular advancement devices... they absolutely do help. No treatment is perfect or 100% reliable always. But they help.

My father regularly sleeps 5-6 hours a night, and negatively impacts his energy and mental acuity. He also snores like a looney tune. My partners over the years have told me that I snore, especially when I'm sick. I rarely sleep more than 7 hours a night.

After reading James Nestor's _Breath_, I learned that snoring and sleep apnea are a modern disease; crooked teeth and under-expanded palettes mean our narrow nasal passages don't pass enough oxygen. When we're sleeping, this leads to snoring and sleep apnea, which prevents deep sleep.

My general dentist pointed me to a specialist, who gave me a take-home sleep study that proved I had moderate sleep apnea. I'm now 6 months into using a Vivos mRNA device (https://vivos.com/), which expands the palette to prevent sleep apnea. For anyone considering a CPAP or surgical expansion, I'd strongly encourage you to find a specialist in your area that prescribes this device.

Do you have any results from the device?

While I sympathize

> If you have sleep apnea, no amount of sleep gadgets, good habits, will help you

Is a blatant lie. A CPAP works for millions, including me.

CPAP for me was life-changing.

I had sleep apnea when I was young, skinny and sporty. Then I got old, fat and sedentary and of course it got worse. I was falling asleep while driving.

I tried a CPAP machine and could not stand it for more than 10 minutes. However my apnea got worse so that I actually did not want to fall sleep because I did not want to wake up choking and gasping for breath. Literally a nightmare.

So I forced myself to stick with the CPAP the whole night through and woke up refreshed and alert. I cannot live without it.

Becoming disciplined enough to use the CPAP every night was a real struggle for me. Ironically, what ultimately helped me was starting to take modafinil during the day. Taking that as a stimulant in the day gave me enough energy in the day that I could make good decisions about other things that influence my sleep (exercise, sleep discipline). Something of a virtuous circle for me.

Sorry I meant sleep gadgets like cooling pads, not referring to medical devices

Indeed but for completeness CPAPs is not the only available therapy out there nowadays.

Specifically for patients with _positional_ sleep apnea there are wearables (actual medical device not welness) that stop the patient from sleeping on their back, and hence stop the positional obstruction.

These wearables are way less cumbersome and invasive than pressure devices.

I recommend editing your post to clarify.

CPAP has only partially helped me. I don't feel as tired, but I still feel tired all day.

Also- sleep apnea can be exacerbated by weight, so losing weight ("good habits") can actually help with the root cause

It's wonderful that you've made progress on the puzzle you found yourself facing. But in reading your essay, the subtext that comes through more strongly than the medical dilemma is a sense of disorientation, loneliness, and anxiety. Even this comment hints at it in its opening disclaimer.

For all I know, you see family every weekend and have friends over for drinks and games every night, but the story suggests that your inner experience of navigating a deep personal struggle involved a lot of private worry, disappointment, and lack of practical culturally implicit skills like how to develop a relationship with a doctor.

Since you seem to have some momentum in self care at the moment, you might want to consider a deeper look at what's going on for you there. You might find consistent therapy helpful as you do so.

Other than disagreeing with your take on relationships with medical practitioners, this is an excellent, well written comment. There are support groups for the family of cancer patients specifically because health is intertwined with how people live.

Creating some kind of regular time to process this long journey, however that works best into the day to day, may help set the stage for the next act.

Thank you for the comment. There are definitely issues you touched on intertwined with this story, and I don't fully understand them and will be digging deeper with therapy. Something I put off for far too long as I was busy dealing with this

Thanks for sharing this, it rings very true for me.

I've had many of the same symptoms for years, I put mine down to a dust mite allergy. It's the bane of my existence! :D

I'm very interested in your experiences of surgery.

I've often considered this as an alternative to antihistamines or anti-inflammatories like Flixonase. I don't think long term use of either of those is good for anyone. (Antihistamines being linked to dementia and steroids being linked to membrane damage amongst other things).

Anecdotally two things I link with improvements are religiously keeping my teeth clean including flossing to reduce gum inflammation and improving my hydration later in the day. Obviously there's a thin line to not drinking too much water and having that wake you up.

> (Antihistamines being linked to dementia and steroids being linked to membrane damage amongst other things)

Oh, cool. I guess I should stop

I'm severely allergic to dust mites as well. I get weekly allergy shots and while they've had a great effect on itchy eyes, runny nose, extreme stuffiness, and other seasonal allergy symptoms... my nose is still congested almost all the time.

I got a dust mite-proof cover for my mattress, tried vacuuming + cleaning more. No improvement.

I got two different nasal procedures to open my airways. First a turbinate reduction - no benefit. Later "vivair" or something... it was non-surgical, basically "radio" treatment or something. I don't think it makes sense that it was radio waves that burned my flesh since, y'know, that's not how radio waves work. Maybe microwaves or something, but the nurses and doctor couldn't explain it. As you can see, I was desperate enough to try it. Anyway - it didn't help. My nose is still clogged almost all the time. YMMV

Sorry to hear the turbinate reduction didn't work for you, that was actually what I was considering next.

I seem to remember that the dementia thing was to do with long term use of first generation antihistamines (the drowsy kind). I can't quite remember if second generation antihistamines were a problem or not so might be worth check out with a doctor if you're worried.

https://www.health.harvard.edu/blog/common-anticholinergic-d...

Agree. Some of the problems can start from childhood. Like mouth breathing and being tongue tied can leed to abnormal growth and supposedly cause the face to be taller and more narrow, which supposedly is a sign of narrow air ways. I am also looking at some of this. What have your found in terms of good resources? I am paricularily interested in allergy and the turbinates and finding a good ENT because looks septoplasty is needed. My belief is that enlarged turbinates (were not enlarged enought to cause issues 2 years back) are due more likely to environmental cause and or allergy. I asked my current set of ENTs how to look at enviroment as cause and they give me a dumbfounded look. (Tried several different anti-inflamatory drugs for turbinates that don't make much of difference.) I also have read in a few places that certain foods can cause enlarged turbinates. Part of the problem is that some times root cause can't truly be found until one tries a solution on a hunch and it works out. I have seen Kasey Li and he did not seem to like te drug enduced endoscopy (I thought it would be a great thing to do). It would be nice to have camera(s) or similar in the air way when one naturally sleep to find what is pinching off. He said the endoscopy will knock one out, but not necessarily put one in the same state as when one sleeps so that might lead to mis-diagnoses. Also, a lot of the surgeries will not be paid for by insurance unless one's AHI is higher than 15 on both back and sides. So, if one needs surgery for UARS (generally will not cause AHI to go that high), then one would need to pay out of pocket. Anyway, good resources with doctors that can look at the full picture are really needed and I really have not found a doctor that is able to look at the big picture and guide one to fixing it the real issue; they all seem to only focus on their narrow area of expertise. So any big surgery like EASE, MMA, etc is a big risk and the recover is not short, costs a lot and still might not fix the issue.

Just saw one post by someone that did EASE, but nasal breathing regressed as allergies got worse. Treating allergies and inflamation comes first I feel

I sometimes have sinus issues enough that sleeping lying down is nearly impossible - my camping recliner is a life saver in those situations, as I can adjust to my needs (I’m also a side sleeper, so it’s non-trivial).

Anyway! Strong recommend.

(Also, in other rare circumstances, adding a humidifier is amazing)

Sounds like dust mite allergy.

One detail to add that I think was missing. My message is you need to own your diagnosis and treatment. But much of the work has to be done by doctors in partnership. These doctors do not have time to direct your treatment outside their specialities, so you need to own the entire process.

I had a team of specialists:

- Sleep: Dr Sinha (primary), AXG Sleep Diagnostics (for psg), Lofta, and Night Owl

- ENT: Dr. Gerald Kangelaris (nasal surgery), Dr Andrew H. Murr (consult)

- Allergist: Dr Opal Gupta (primary) and Dr Carmen Choy (amazing doctor! consult)

- Gastroenterologist: (upper gi endoscopy), unnamed as I dont recommend

- Sleep apnea surgical expert: Dr Kasey Li (triple board certified, best in the world)

- Primary care (One Medical)

I think that this is the real problem is that one needs to do one's own diagnoses and treatment; this will probably take a year or two to learn the ins and outs. I would pay good money for somebody that can be a good guide to finding the real root cause or causes.

I see your 2 allergist here. Had consult Dr. Choy, did not result in finding anything useful. I wonder if turbinate inflamation can be caused by something that would not show in those skins tests. Do you feel that Dr. Gupta is better than Dr. Choy?

Dr choy is great and spent more time with me than expected. But I could not commute to Palo Alto every week for shots, so I used someone local. Both docs are top notch but Dr choy sent the extra mile

I have narcolepsy and I think sleep disorders as a whole are just generally under-diagnosed. It took me years to finally find a root cause to why I just felt bad all the time.

I have nothing but the highest respect for you in how you went about this and sharing your success with others. Long term, sleep apnea interferes with the glymphatic function; I’ve heard rumors this then correlates to various dementias. Sleep function really deserves more money thrown at it.

Here’s something fun. Do you wonder what biologically was really going on here? Personalized medicine is a when, not an if. There are wild things just around the corner like this: https://youtu.be/_YOEq7mHsw4

May the odds continue to be in your favor, thanks for sharing.

This is example of blindly overengineering problems easily solved by actually looking for origins of problems first.

Exactly these magical artificial solutions are the problem. Our money is burnt to chase high tech dream stocks instead of basic things that should be obvious to everyone but isn't. Heard about Sinclair?

Like fixing cancer by not prevention of metabolic diseases causing it keeping high quality standards of food in shops, limiting pesticides, GMO, processing of it to minimum feeding animals with what they supposed to eat and planting on soil naturally fertilised and fully mineralised but instead doing direct modifications of genes, these which work perfectly well naturally if given back normal human conditions..

And then looking for solutions to problems caused by (God forbid irreversible) own blind solutions...

as what we observe continuosly in last years after creating global condition unseen in nature... with maybe irreversible impact looking forward

Similar boat but for me it was narcolepsy. Still working on getting the right prescription but it was definitely a feeling I could describe as "relief" to hear that there was a specific physiological cause my constant fatigue. And that sense of overpowering weakness that I was thinking of as being "really, really tired" was actually cataplexy. Just putting a name on it feels like a weight being lifted. Although I'll actually feel better when I land on a practical treatment.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3313633/#:~:tex...

Interesting study on the affects of sleep breathing disorders in young people as they age and subsequent behavioral problems.

My father had an utterly torrid time just getting a diagnosis. Sleep apnea caused him so much hassle/torment over the years.

Thanks for writing this up and sharing. The rawness of the experience comes through very clearly, and while it must have been difficult to write it reads very well. Hopefully this can help other people in the same situation. Your level of persistence in getting to the root cause is phenomonal.

> You must fix the root cause

The main cause of sleep apnea is obesity, which ruins your health by just about every other metric you could measure as well. It’s good advice to address sleep apnea, but you’d have to dig a little deeper to get to the root cause (in most cases).

For most people with sleep apnea this may be true. I didn't dive into the details but for a subset with UARS, people are typically thinner, younger and fitter. This group suffers from structural issues. In my case congestion and allergies. For others bone structural and require MMA or MSE to treat.

You did cover this in your article : )

As far as I understand it, obesity can aggravate sleep apnea, but actually does not cause sleep apnea, so it is not at all the main cause. For obstructive sleep apnea, say, if you had a perfectly formed jaw, teeth, airway, etc., you could get obese without having sleep apnea.

Which means that obese people shouldn't rely on losing weight as a sleep apnea cure, as obesity is indeed not the main cause, but can likely see reduction in sleep apnea symptoms with weight loss.

Your understanding is wrong, obesity directly causes sleep apnea.

> There is a linear correlation between obesity and OSA. In obese people, fat deposits in the upper respiratory tract narrow the airway; there is a decrease in muscle activity in this region, leading to hypoxic and apneic episodes, ultimately resulting in sleep apnea.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5836788/

It's both in the submission and in the Wikipedia article about UARS: "A typical UARS patient is not obese"

That's just plain false. Obesity is not the main cause of sleep apnea.

> If you have sleep apnea, no amount of sleep gadgets, good habits, exercise, will help you

Probably not what you mean, but this is untrue as there can be different causes for sleep apnea. For instance obesity, which would be helped by exercise.

Exercise does nothing for obesity whatsoever. Every single weight loss study reaches the same conclusion: the impact of exercise alone is negligible.

There's long been a stigma that only fat people have sleep apnea, which is not only false, but it is virtually impossible to lose weight when you have untreated sleep apnea. Meaning that people with sleep apnea are likely to get fat. And even with CPAP, which will greatly improve sleep apnea, you might still end up with UARS which will still make it impossible to lose weight.

Fact of the matter is, we don't know what causes sleep apnea in most people. It is certainly true that excess weight (especially on the chest and neck) can worsen or even cause sleep apnea in some people, but there are plenty of fat folks who don't get apneas. While there are also plenty of skinny folks whose airways collapse in their sleep.

Correct. Obesity is the leading cause in the US. A vast amount of anyone overweight in the US have sleep apnea, diagnosed or not.

Thanks for posting this, I've had similiar sleeping issues for years, I'm going to try out some of what you posted and see if it helps.

Isn't the root cause usually obesity? So good habits and exercise may actually fix it.

How do you alleviate sleep apnea, if not a sleep gadget (commonly known as a CPAP machine)?

sorry, I was not clear. I did not mean medical devices when I said sleep gadget

Thanks for sharing. Are you still taking any meds for nasal issues on a daily basis?

yes. I hope one day allergy shots will cure my allergies. But until then I take daily meds. If I stop I will within days start waking up like i've been punched in the head

I am late here. If wall too long it's ok. Just please don't stop drilling the topic it's super helpful and important.

My dad with diagnosed apnea and long memory deficit.

Until highschool i was always skinny, always with memory and focus problems, moments of thoughtlessness/void, continues stress at school despite decent grades (repeat until win grinding), a bit mental breakdown before high school exams. After runs at school always had the black-white stars before eyes.

Always loved bread.. donuts.. since university beer (once nearly lost consciousness out of nothing). Half of family with metabolic diseases or dead for it, so I consider digesting carbs a mortal sin now. I totally cheat drinking milk (lactose).

But then i always slept well, like hard rock well and even for 10-11h.. just thinking was clouded and harder concepts couldn't fit in my RAM memory.

Now at 36yo, some time after reducing weight to 66kg(175cm) from 77kg+ progressively discovering keto and intermittent fasting i noticed physiological changes.

For starters I never get sick now except small headache if I go to sleep excited past 22:00...

Sudden brain clarity was a huge surprise but started feeling more alert at all times and sleeping stiff, like in a constant threatened state (luckly not remembering any dreams)

Also I think it stiffens my scalp causing baldening. Blood pressure in high end of norm but once lower. Sedentary lifestyle I assume. Watching screen most of day probably also doesn't help.

I was mixing morning fasting, coffee and cold shower what I discovered to be refreshing, energising but a total overkill, shocking body that's not liking it.

I also had an episode when working physically abroad with osteoporosis like symptomes, other level painfull wrists, stiff clawed fingers after waking up that required stretching to straighten to normal. I decided it eventually as a result of overdose of histamine (cacao, tomato, aged cheese, sugary foods, beer and what not from list).

I still have a bit irrational trouble to force myself to do stuff. But when I start doing something I can do it for hours, actually I forget to do other things then. Old habit at this point.

Overall I react to stress much better now.

My mom has the same histamine sensitivity plus reflux (more pyroli and crap diet related - but guess what ppl in one household eventually share bacteria too).

i fixed it with identifying every histamine related thing that hates me most and instead of taking quercetin (not including natural in garlic, onion) i discovered 4 antihistamine bacteria strains mix that regulated by gut effectively and zeolite. Now diet with mainly meat and eggs isn't any problem (at least not in periods of controlled oxalates dumping)

In my case after a bad sleep night coffee adds salt to injury for sure.

But i implemented nearly full huberman sleep protocol, fully blackened room at night, watching daylight after waking up and started taping mouth too. Winding room before sleep and breathing deeply for sure makes a difference. Ionisation of air to bring all dust down too.

Meditation, NSDR and buteyko method also helps relax this unconsciously stressed body very well. The same as morning exercise, just 5 min HIIT, nothing crazy.

I few times through life I felt my heart skipping a bit or short intense burn pain out of nowhere. But never diagnosed it. Worked physically without any problems.

But I added to my routine push ups sets like once a week, progressing weights and its like 33kg now..

Once a bee stinged me right above right eye, minimally reshaping eye, what was enough to cause worse dry eye effects in this one.

The point is I can't sleep on back (it's perfect for relaxation though) but when laying on right side of the eye it veins redden more while when sleeping on left, heart side i'm feeling like pressing it too much.

I'm dumb about tackling this one.

I also manipulated my bed... exactly the wrong way... sleeping opposite... Today I'm reorienting.

Can't throw carpet away but definitely gonna clean the room totmax.

Also am using pillows as with slimmer legs sticking legs together feels unnatural and not properly in parallel. Or I'm getting autistic/neurotic overthinking every detail

Don't stop the topic!

And write in more detail what you do now. There may be more to your solution than what's mentioned here.

do you think the under-diagnosing is because of work schedules? dont you have to do a sleep study to get diagnosed?

I have some ideas for under-diagnosis:

1) Reluctance to seek treatment for something that can be still tolerated

2) Incorrect assumption that sleep apnea only affects overweight people that snore by a large portion of the medical community

3) Lack of connection between poor sleep and symptoms. By the time you experience symptoms, you've probably had years of progressively poor sleep so its hard to connect A=>B

4) Doctors through their training are ground to the bone and have to sleep 2-3 hours during their residency. I think there is some innate resistance to the idea that sleep is important in the general medical field

5) Lack of communication between specialties. See a therapist / psych person and they won't know sleep. See a allergist and they won't know sleep. See a sleep doctor and they won't give ENT or allergy advice. Etc.

Yes you need medical care to get diagnosis and treat. But its a multifaceted illness, you need a team of specialists and doctors treating you in the different aspects.

Thank you for writing this -- I've been through a similar experience since 2017 or so. Tons of things resonate:

- sleeping on my side to avoid positional sleep apnea

- mouth taping works

- allergies can have a large effect on sleep

- having problems with CPAP (initially, see below)

- Having a more UARS-ish case, since I always exercised, and after losing weight I have medically normal / below American-average BMI, etc.

- We're in a similar demographic -- programmer in SF at the time, Chinese American, I'm guessing ~10 years older than you. (One thing I found in my research was a YouTube video by a doctor from Hong Kong saying that Asians have a facial/bone structure that makes them more prone to sleep apnea. I think that is probably true, although there are many other factors too.)

- Realizing this has affected me for 10-20 years (memories going back to grade school). (I also wonder if sleep apnea is adaptive when you're young, and harmful when you're old. I read a book that conjectured this. It's so damn common that it has to be adaptive in some way. It's a ridiculous problem from a biological point of view -- your neck and throat are strangling you to death while you sleep :-/ )

- Having to piece together treatment from multiple health care providers, and doing research on my own.

Though it sounds like I did have better "luck", since I had a very smart and helpful dentist in SF, who was the one who told me I had sleep apnea after 2 incidents of cracked teeth. I initially didn't believe her !!!

She also told me about Christian Guilleminault (and she met him), and I got great referrals from her to a myofunctional therapist in Oakland, who gave me still more good referrals.

---

Anyway, I spent years on it, and am in a pretty good place now. I agree with a lot of your conclusions at the end -- it's a very difficult problem to solve, and it's NOT really worth it for a single medical care provider to solve it for you!

It just takes too much effort and expertise.

It's still poorly understood, and I got a lot of conflicting advice, and had to "triangulate" on my own.

Every case is a snowflake. In my experience, every treatment/remedy works A LITTLE, but there is no magic cure. I still have to stay vigilant.

---

Since everyone is a bit different, I'll offer up the things that helped me:

- I started with a MAD from my dentist, which definitely worked, but it wasn't consistent, and had side effects of inflaming my gums. Also it seemed to make sleep WORSE some nights.

- I also got a CPAP, which sat in the closet for THREE years. It felt like I was drowning in air, I couldn't keep up and fall asleep with it on.

- I started sleeping on an air mattress, not a bed. And now I've done this for 3-4 years !!! Honestly it makes me wonder about the comment in this thread talking about how a mattress ruined their sleep. I did get a new mattress around ~2012, and I think I started experiencing more sleep problems then, but I didn't realize I had sleep apnea until ~2018 or so.

- I had a "fuzzy and dry eye" problem (that also feels a little like "brain fog", although it wasn't as extreme), that went away after I addressed sleep apnea. I went to doctors about this before I knew anything about sleep apnea. I never read it in any book, and no doctor ever told me, but now I know it was caused by sleep apnea.

- I got the referral to the myofunctional therapist in Oakland. It sounds weird, as you exercise your tongue and mouth muscles. Miraculously, within one appointment, I was able to breathe through my nose consistently, during the day, at night, and while exercising.

I had been a mouth breather for my entire life. I knew that, but I didn't know it was a problem. (It was also quite visible that you can change the muscle tone of your tongue within 8 appointments or so. You can see the difference.)

- I was able to use the CPAP with the nose mask after that, and that's what I still use.

- I also went to a very helpful posture therapist and worked on my breathing during the day, while walking and biking.

- I've kept off 15 pounds since 2017, which definitely helps, but isn't the root cause.

- I also started eating 2 meals a day of whole foods, instead of 3 plus many snacks. And pretty strictly avoiding processed carbs (white bread and even white rice) and processed fats (e.g. fast food).

In my experience, the whole foods make your jaws and teeth stronger and more resilient. (I read "Jaws" by Kahn, Breath by Nestor, and many other helpful books from practicing dentists.)

---

So to anyone here who is still struggling, I will just offer that as an anecdote -- the myofunctional therapy, mouth taping, breathing through your nose, helped me use the CPAP.

I had a CPAP since 2018, and didn't start using it until 2021, because I couldn't stand it.

I would say if you're out of options, and can envision any way that you can possibly use a CPAP, make another effort. It might take some therapy, diligence, and time, but it will be worth it.

Thanks again for sharing, and I hope this comment thread helps more people! I definitely sympathize with that feeling of being "out of options", where you dread going to bed at night.

Fellow UARS survivor here. Some notes:

* My symptoms at the nadir were (all resolved with self-administered xPAP): chronic fatigue; chronic pain (skeletal muscles were all like bricks); insomnia throughout the night every night; tinnitus; reflux; chronic anxiety; all sorts of cognitive problems with memory, concentration and executive function.

* You describe CPAP rejection as something specific to UARS. It really is not, many people with "plain OSA" reject CPAP. For some people SDB causes intense anxiety, others get a bit numb. I guess CPAP is doable for the numb population. Obviously having resistance imposed on your breathing while being in Fight or Flight mode constantly is a big no-no. I experienced this myself, CPAP gave me back to back anxiety attacks. Describe this to doctors, and they will gaslight you. Their talk is cheap, they don't have to sleep like that. Fortunately my first device was a BiPAP (by total coincidence) and turning the BiPAP mode on was like turning a key and opening a door. I went to sleep instantly and we became best friends :) Barry Krakow MD is a rare exception. He says the following in his article [0]

> From our perspective, reliance on CPAP in a sizeable proportion of OSA/UARS patients violates the dictum, primum non nocere. Accordingly, 15 years ago we ceased use of CPAP and switched all patients to bilevel modes.

* Joseph Borelli MD, an adult UARS survivor describes his experiences in a video from the American Sleep Apnea Association. [1]

* In my experience nasal congestion can also be caused by the SDB. The Bilevel breathing assistance compensated for my nasal resistance at the beginning, and after a while my nose just opened up. I haven't had any trouble with it since, also while performing strenuous activity and sports. I never had anything done to my nose, let alone surgery.

* It's very hard to know when you are fully treated, with any intervention if there is no hard data. I started with BiPAP, and for 3 years I was adjusting my pressure every 3-4 months and gained improvement. But I was never sure that I had reached the ceiling. I did have some regular "worse days" that could be blamed on residual breathing issues. The DSX900 AutoSV records every individual breath on its SD card, so I can verify that it is achieving total flow normalization. [3]

* Around october 2020 I had some discussions, giving input to the author of this article [2] and I became sure that I had to try ASV at some point to try and achieve complete "flow normalization" which Barry Krakow MD describes in a webinar [3]. Finally I in january 2021 I had the opportunity to try a DSX900 AutoSV and copy my Bilevel settings onto it with some headroom for the ASV algorithm to work. It did turn out that I had a lot to gain cognitively, my concentration, memory and executive function became much better, particularly reading and studying "hard" text became much easier and "transparent," i.e. no more clinging to the lines of text. So this is a warning, while any relief from the most dire symptoms is good, I consider years lived with inadequate treatment to be years wasted in a sense. Of couse the 15 years I went completely untreated as a young teen going through school and university as a tired, neurotic wreck I will never get back.

* Mouth taping probably works because it keeps the lower jaw stabilized. It tends to drop and then fall back. A soft cervical collar would probably also work. My current mask (F30i) hooks under my lower lip and that probably also helps.

* I use an ultrafine allergy filter in my machine and it still does a lot of work for me, so allergies cannot be considered the main cause. In my case it's facial anatomy such as retrognathia, large tongue, Mallampati class IV.

* I was gaslighted by doctors for 3 years. I was finally diagnosed with UARS (3rd PSG with Pes this time) in october 2020 but no treatment was offered as "there was no protocol." I had to do everything myself.

* Toughing it out isn't sustainable, my final crash was in 2017.

[0] https://www.thelancet.com/journals/eclinm/article/PIIS2589-5...

[1] https://www.youtube.com/watch?v=zbdMY_qd7-s

[2] https://web.archive.org/web/20211006015015/https://sleepbrea...

[3] https://www.youtube.com/watch?t=1321&v=Syv7YcHbTCI

But I don't wanna wear a machine! What will I tell lady friends from the bar?

There are also silicone devices which keep your tongue out of your airway by keeping it pulled outside. Studies show they work almost as well as a machine yet are much less likely to be rejected by users as opposed to a CPAP.

Tongue stabilizing devices: https://www.verywellhealth.com/tongue-stabilizing-device-for...

Flonase and air filters rather than cpap is the answer for many it seems. I wish the sleep medicine doctors and apnea specialists were more knowledgeable about that.

I recently discovered that I’m a slow metabolizer of caffeine. Via my raw 23andme data.

https://you.23andme.com/tools/data/?query=rs762551

C/C genotype.

https://www.geneticlifehacks.com/liver-detox-genes-cyp1a2/#C...

Instead of coffee being a net positive, it actually takes caffeine 4X the time to process through my body and increases my cardiac event risk by 2X.

I can drink a cup of coffee at 8am and it still impacts my sleep the following night. My blood pressure remains really elevated (20+ points for systolic) the entire day.

All these decades I’ve been ingesting coffee thinking it’s a “net positive” - not for my genotype.

When the reality is I sleep like shit, my blood pressure is through the roof, I feel awful for a day or two of drinking a single cup, and it all makes sense now.

I miss my coffee kick, but the fallout from it all, I just don't think it's worth it anymore at this stage of my life.

Are there any services like 23andme that are more strict when it comes to data privacy or that allow me complete ownership of the data? I would love this type of analysis even at a higher cost but I am scared of what might happen in the future to this data on me and children

Nebula is mentioned below for full DNA sequencing. I've used them for my son.

As for analysis, you could try one of these.

https://geneticgenie.org

https://mthfrsupport.com

https://promethease.com

https://foundmyfitness.com/genetics

I have used Nebula. Did a group buy of the kits with several friends to obfuscate shipping address. Signed up via a protonmail address, and accessed the site only through VPN. Then deleted my data after downloading all of it.

I believe it would be very difficult to tie my identity to my genome because of these steps.

> I believe it would be very difficult to tie my identity to my genome because of these steps.

That probably depends on the closest relatively of yours that they have in their database.

If you only have one sibling and they're in the database, you're probably boned no matter the precautions you take.

> Are there any services like 23andme that are more strict when it comes to data privacy or that allow me complete ownership of the data?

https://familytreedna.com. I used to work for them > 2 years ago.

1. Order a Family Finder kit. When you get the kit but before submitting your swab, sign up for the account but opt-out of _all_ matching services.

2. Send your swab in.

3. When you get your results in (~6 weeks usually), download your raw data from the website.

4. Call their support line and ask for your data to be deleted.

I've been burned too many times in the past to ever believe this line, even if the people at the company are well intentioned.

I bought a kit on Amazon from a major provider. It was a Father’s Day promo. So it’s safe to assume at least half of purchases were gifts. And Amazon FBA does not share buyer data with the seller. Plus then I used all anonymous services, like junk email, VPN to sign up.

Health care providers can order genetic testing to help discover how your body metabolizes tons of things.

I recently had it done and it illuminated an entire class of anti-depressant that has very little efficacy for me.

Those tests are so limited in scope, I would not bother.

I did the same, but without any of the data here.

Quitting caffeine got rid of my anxiety nearly entirely and my sleep quality was noticeably better. Literally changed my life.

The 3 days of headaches were very bad. But worth it beyond anything for me.

Open to questions if you have them, though it may take a bit to respond.

I imagine that simply lowering the dose over a few weeks before quitting might help with the headaches, for anyone else who decides to give up caffeine.

I feel pretty bummed about these kinds of stories.

I quit coffee for all of January, and I felt absolutely no difference. When I started again in February, apart from the first coffee feeling a little gross, I again felt no difference.

CYP1A2 does not only metabolize caffeine, it is also involved in the metabolism of various endogenous substrates, including fatty acids, steroid hormones and vitamins.

Focusing only on caffeine metabolism is one of the pitfalls of 23andme's reports.

This gene change might mean you have higher cholesterol as well.

To see everything this gene does check here: https://www.uniprot.org/uniprotkb/P05177/entry

> This gene change might mean you have higher cholesterol as well.

I have C/C in 23andme like gp and experience same caffeine effects. I have high cholesterol despite being active, fit and good diet.

Would you know of any literature that might explain this in more layman terms. I had hard time reading the link you mentioned.

Did this help?

https://jamanetwork.com/journals/jama/fullarticle/202502

CYP1A2 also metabolizes cholesterol so caffeine will increase your heart attack risk.

And this is why genetics are crucial in understanding your dietary risks.

Do your blood pressure problems gp away if you don't drink coffee? Have you blind tested this by getting someone to brew you something that may or may not be decaf?

How does one figure this out using their DNA.txt file? Is there a Wiki for genes?

Promethease (1) is a great site for doing this. You upload a genome (which they promise to delete), and download an HTML interactive report. The report spans thousands of studies, and it will tell you about any rare genetic disorders or interesting findings.

The cost is about $18, one time, iirc.

(1) https://promethease.com/

Do not stop at Promethease! I have been doing this for myself and others for the last 10 years. Promethease is great but misses several SNPs that are included in the raw data that may have an impact. Some other helpful websites:

https://www.ncbi.nlm.nih.gov/snp/

https://www.uniprot.org/

https://www.snp-nexus.org/v4/

Take a look at this report.

https://www.geneticlifehacks.com/liver-detox-genes-cyp1a2/#C...

The newsletter above is fantastic BTW.

> it actually takes caffeine 4X the time

I have C/C like you and feel effects of caffeine at night from 6 am coffee like you.

I am really curious about 4x and 2x risk. I didn't seem to find that info in the link you posted.

Can't you drink one coffee in the morning?

Also would like a source on the 2X cardiac event risk, couldn't find that in the linked article. Big if true!

I have this genotype and if I have a mouthful of coffee at 8 am, I will be able to feel it at 1 AM the following morning.

The enzyme responsible is CYP1A2 if I understand correctly. Here is the paper I found that supports increased risk of a specific cardiac event to slow metabolizers. I'm not the most adept at reading medical papers so I can't verify if it claims the risk is doubled, but I think it's possible.

https://jamanetwork.com/journals/jama/fullarticle/202502

Coffee, CYP1A2 Genotype, and Risk of Myocardial Infarction Marilyn C. Cornelis, BSc; Ahmed El-Sohemy, PhD; Edmond K. Kabagambe, PhD; et al Hannia Campos, PhD JAMA. 2006;295(10):1135-1141. doi:10.1001/jama.295.10.1135

I found out I had sleep apnea mostly due to coincidence. Eventually I got jaw surgery to fix it, but there is a surprising anecdote:

Shortly after I started using a CPAP, at a networking event I met someone who worked at a mental health clinic, and he told me that many of their patients with schizophrenia had a pressure setting of 18 or 19 bars. Apparently disturbed sleep can cause some rather severe mental illness.

I was at 16 bars at the time. (I no longer use a CPAP post surgery.) About a year prior, there were a few times that I wondered if something actually happened, or if I was misremembering a dream.

It makes me wonder if some severe forms of sleep apnea can make dream context confusing enough that it's hard to bucket memories between dreams and actual events?

Late stage untreated UARS is similar to a catatonic existence. I think Christian Guilleminault described this population in his research. Thankfully even my experience did not get to this point

can you share the paper or article?

Sleep Apnea has f'd up the last ten years of my life. Like many, it happened so gradually that I didn't notice until I was stuck in a vicious depressive loop that wrecked my health. If I hadn't had heard of sleep apnea through a podcast of all things I probably wouldn't have ever figured it out. I was apparently the worst case they've seen in a young patient at that office. It's taken two years for me to recover, and I'm still left with a lot of the damage I did to myself.

So if you're tired all the time, or you're a 'heavy snorer', or you're falling asleep during your morning routine, or wake up feeling like your drunk, get tested! They have at home test for it, it's not that bad.

Thank you for sharing! Skimmed for now, but saving this to read later.

I've had a history as well of never getting good sleep so I'm curious to see what your experience was and the steps you've taken. A few things I've done that have helped a bunch:

- Using BreatheRight nasal strips every night

- Latex earplugs ("Mack's Pillow Soft Silicone Earplugs"). I could never sleep with foam earplugs in my ears but these are great

- Sleeping with a noise machine

- Getting a basic alarm clock so I can leave my phone outside the room

- Getting a c02 monitor

A ctrl+f on the page didn't show any c02 mentions, so I'll just say it's something I think is worth looking into for anyone having sleep trouble. My understanding from when I was looking at one to buy was there were different kind of sensors and the ones in the cheaper monitors were unreliable. I ended up getting this one [1] for $250 with the intention of returning it after getting a sense of where the levels would get to but ended up keeping it. For anyone who thinks it's at all possible to be a factor for them, I recommend getting that monitor with the plan being to just return it if you don't see anything surprising.

[1] https://www.amazon.com/Aranet4-Home-Temperature-Ink-Configur...

Great tips. But it seems like maybe you should remove the part where you suggest people intentionally buy, use, then return an air monitor.

It's one thing to buy something and return it because you are genuinely dissatisfied, but what you are suggesting is called wardrobing and is pretty unethical, and it incurs costs for retailers and manufacturers.

Also, it can be damaging to the environment if products are needlessly manufactured and disposed of. I don't think it's a good idea to suggest this kind of behavior.

these multi-paragraph holier than thou soapboxes are so tiring

Thanks for the earplug recommendation. I don't have sleep apnea but I'm a very light sleeper so the slightest step or a car going by makes me wake up. I assume this was very beneficial when my ancestors would be attacked by a neighboring tribe or a mountain lion but it's not so great now. lol.

I usually just use CSV earplugs but my hears wake up hurting almost every morning. I considered using the Bose sleep ear buds but they're a bit expensive so I'm going to try these out first!

I can't edit the initial comment anymore, but another big thing for me was having an eye mask that was comfortable enough to sleep in. The MZOO brand on Amazon has been perfect for me: https://www.amazon.com/gp/product/B07KC5DWCC/ref=ppx_yo_dt_b...

Same. For me earplugs, and a contoured eye mask (mine looks like a bra), and sleeping alone are huge.

Bags under the eyes are the breasts of the insomniac's face

I bought an Aranet recently and at night, it can go as high as 1600. I figured not wasn't as important at night but this article has me wondering. I will say that I've been going to the office 2-3 days a week and I've been sleeping a whole lot better lately. I don't recall when horrific sleep started but I'm fairly certain it was pre pandemic.

https://pubmed.ncbi.nlm.nih.gov/26452168/

> “Objectively measured sleep quality and the perceived freshness of bedroom air improved significantly when the CO2 level was [below 900ppm], as did next-day reported sleepiness and ability to concentrate and the subjects' performance of a test of logical thinking.“

1600ppm is definitely impacting your cognitive abilities and it's something you need to fix ASAP.

That sounds pretty high! Have you made any changes or do you still have it hit 1600 while you're sleeping? I was never able to find a good source for what levels to target, but I did come across this study [1] which claims to have measured a difference in cognitive function the next day for people who slept with avg c02 levels at 835 ppm vs the group at 660 ppm. I don't have the background to judge the legitimacy of the study, so it could be bogus for all I know. But keeping the window has been enough for me to keep the levels below 800 so I've tried kept that as the limit

[1] https://pubmed.ncbi.nlm.nih.gov/26452168/

I did replace my water heater with an electric one. I got this after that so who knows that the baseline used to be but I do have some ideas for more improvements. I may open the window a smidge to see if it makes a difference. A little hesitant since I have a newborn and it being winter and all. I'm trying to get Home Assistant to work with Bluetooth so I can link the two and turn on the bathroom fan.

Good ideas. Also review your diet. For me I found out I am slightly allergic to HFCS. Which was causing mild acid reflux and making me sleep very poorly. Easy test is if you take a tums before sleep and you sleep good you are good candidate for something like that.

> BreatheRight nasal strips

Never knew about these. I'm guessing you can't re-use the same strip each night?

I don't have sleep issues apart from a bit of snoring and blocked nose. I might buy a pack of these to try.

>>Breathe Right nasal strips

>Never knew about these. I'm guessing you can't re-use the same strip each night?

I've been wearing the strips both day and night. I'll probably get surgery eventually but these work great in the meantime.

There's a bunch of much cheaper generic-brands on Amazon that work just as well too. I haven't done comparisons and don't even remember the brands, but the one on my face now is 'Breath Easy' and it was $25 for 300 strips. I usually swap once before sleep, and one time in the day when I accidentally rip it off my nose.

Yeah they're single use but they work really well and I didn't come across any similarly effective alternatives.

They're kind of absurdly effective. Definitely worth trying at least once.

Getting a CO2 monitor was eye opening. We had very bad ventilation in our rental bed room and we invested considerably to get a very good ventilation solution when we got our house.

What did you do?

Installed an fairly overprovisioned heat recovery ventilation system. What effectively means a lot of pipes to move the air in and out of the rooms. Nothing fancy: supply in the bedrooms, exhaust in the bathroom, etc, just a little more air volume moving. Heat recovery system (a fancy word for a aluminum heat exchange) recovers the heat going out of the house by warming the incoming air. Keeps mostly the CO2 levels way below 800 ppm, normally around 600 ppm.

This makes me really happy, and will probably make me try again to fix my own sleep issues. They're eerily similar, except I haven't found a clear cause yet. Decade old maintenance insomnia, I wake up a 1-2 hours earlier than needed.

I did all the obvious testing and keep hitting hit a brick wall. Polysomnography, SSRIs, MRIs, therapy, drugs, every supplement on the market... I was clearly told not 6 months ago that every avenue is tapped out. Except I had no idea UARS existed, nor that allergies may have something to do with sleep quality - and both are legitimate directions to follow in my case.

Polysomnography is definitive for UARS. If you had a negative result, either do it again. But if its consistently negative then you do not have UARS as you do not have microarousals

> And I started taking antihistamines daily.

Antihistamines can make you drowsy, ie. "brain foggy": (Quoting the web)

Side effects of antihistamines * sleepiness (drowsiness) and reduced co-ordination, reaction speed and judgement – do not drive or use machinery after taking these antihistamines. * dry mouth. * blurred vision. * difficulty peeing.

I take them sometime myself (for the same symptoms as the article) and I really notice the drowsiness - even though it differs from time to time. So I really limit usage.

> Even my lifestyle in my early 20s was a confounding issue. Did I party too hard? Did that era of my life alter my brain chemistry in a way that made me irreparably damaged?

Long-term effects of recreational drugs use (this includes alcohol I would say) have be studied quite a bit I believe not much last-long effects have been found. So don't worry about it, it does not alter your brain permanently.

Finally I like to say that what helped the author a lot is just a shift in focus to personal well-being. Any shift in focus helps in most cases. Taking up dancing, playing guiter, camping, whatever, can also make you feel like you can breath again. Hyperfocus, on any kind of activity, can be damaging in the long run for most people. Variety is the spice (& fresh air) of life. But note that hyperfocus includes hyperfocus on personal health, well-being and mental health issues, etc. This can also be damaging and anxiety inducing, as you try to start "fixing" everything and trying to "understand" all your root cause in a infinite loop, start comparing with others, etc. So limit the time spend there as well, I would say.

>Antihistamines can make you drowsy, ie. "brain foggy"

Depends. More modern ones like Desloratadine which don't cross the blood/brain barrier usually don't do so.

Antihistamines make my insomnia worse. They trigger my restless leg syndrome like nobody's business.

Stimulants (prescribed) help me sleep, they shut my brain up.

Restless Leg Syndrome is absolute hell. Combined with insomnia it's nearly killed me a few times. I think a lot of people (including many doctors I've dealt with) underestimate it due to it's rather benign sounding name.

At some point I went nearly insane. Turns out that ADHD medication can mask sleep apnea. You need the medication but when you cannot sleep properly you go from meditation that is good for your to acting like a meth addict when your actual sleep is 2 hour a night for 2 years. At the worse point of crazy the doctors figured if out and also asked how I was not insane?!? Honestly I was at the point of CT with contrast looking for brain tumors looking for why! All good now. Health focused. Figured out sleep issue and made huge life style changes. CPAP pressures level down to minimum now after much work, with goal to be off of it. I cannot stress how important it is to have a stable measured baseline on all available measurements you can take about your body. BP, sleep cycle, heart rate, etc. things like the Apple Watch are miracles off technology we all need to embrace. Modern medical science used correctly is a game changer. Data is king and understanding it and questioning the doctors to the point of understanding matters. A good doctor will answer your questions in detail and work with you. If yours does not, find a better doctor.

Good to know. I almost went down the route of getting adhd meds.

Yeah a baseline is key. Having a personality baseline is important as well, a personality change was one of the biggest indicators something was very very wrong

I was not saying anything against ADHD meds. They are very important if you require them as I do.

It is really important to understand your body and yourself. Sleep apnea is not a joke and people miss the signs.

Major personality changes are a huge red flag.

got it, thanks for making that clear. I was under the assumption that adhd masks sleep apnea, but didn't realize you can also have both

Very useful read. My friend, an osteopath, says neck issues also can create breathing obstructions, and it makes a good deal of people wake up in the middle of the night and stay awake, even though they don't even think it's a problem.

Symptom to watch for: you wake up and your nose is stuffy, can't breathe through it, but there's no snot. And in 5-15 minutes it gets clear.

If you have it, it means lymph flow out of the head is obstructed, and works only thanks to gravity when you're upright.

It's a reason to be worried by itself, beacuse it also causes blood circulation obstructions. But if someone has issues with throat, it can contribute to apnea.

Strange, I often have this. Feels like it's related to more to smoking, drinking, dust, lack of fresh air.

My doc told me once you're better off rinsing your noise with salt water and then positioning your head in a certain way to let gravity do its thing and it works wonders even without rinsing the nose. Avoid OTC nose sprays at all cost!

Osteopaths gave me nothing but witchcraft over a period of 15 years: "your lower back pain is due to the EM rays coming out of your computer screen. Spend more time outside. And let me work on your energy points. That will be $150 please. Oh and PS - don't even try running, it will destroy you even more".

In the end all it took was advice from a good physio (strengthen your core). And I can now run a half marathon with no problems, despite one leg being 15mm longer than the other which was the reason for my lower back pain. My hips weren't straight, putting stress on my core muscles.

This friend of mine studied 8 years at univeristy, and still 15 years into career digs into medical literature and atlases, so he's very rigorous, and having scientific background myself, I can distinguish those who tell myths and fairy tales, like "just breathe fresh air".

In my case, he just told me this story in a conversation, without me asking, and then I noticed his explanation was the most convincing: the days I have pain in the neck, coincide with waking up with stuffy nose and a feeling of "inflated" head. So this sort of fits even Popper criterium (make a verifiable prediction).

Thanks for sharing, this seems like what happens to me except only partially (1 nostril fully congested and the other partially). I've only recently self-educated myself on nasal and sinus obstruction issues after particularly bad congestion from a cold. I used Afrin for one night and realized that my typical night was far from breathable compared to that.

My ENT gave me afrin and used it as a diagnostic tool

This sounds like some of the pseudoscience my friend was talking about before he had psychotic episode. Is there any legitimacy to Osteopathy?

He studied at a legit medical university and studied a lot of materials, digged into older books and anatomic atlases. So judging by his rigorosity, I trust this information.

There are criticisms to osteopathy, and he has a reply to that, but anyway, whether or not osteopathy is a valid treatment science, does not change his knowledge of anatomy.

They can prescribe medicine and do surgery. I don't think there's much woo there.

https://en.wikipedia.org/wiki/Comparison_of_MD_and_DO_in_the...

In the US osteopaths are considered equivalent to MDs.

Does this have a name, I wake up to sometimes with a clogged nose, can't breathe until it drains out. I started sleeping with more pillows to keep my head higher and it stopped, but I think it's a weird angle and makes my throat collapse.

> I started sleeping with more pillows to keep my head higher and it stopped, but I think it's a weird angle

Be careful with those pillows!

A while ago I came across a YouTube video by two orthopedists who were arguing very convincingly that for neck & overall posture it's best to sleep without any pillows at all. I've been doing it for > 2 years now and, from what my body tells me, they're absolutely right. Now I can't believe I ever slept with a pillow.

The reasons they gave for why pillows are bad are (I'm paraphrasing here):

- As far as is possible, sleep should be used to counter the posture(s) one typically assumes during the day, not to reinforce them. (Sleeping for 8 hours basically means 8 hours of reinforcing a certain posture, whether good or bad, so better use it for one that benefits you.)

- Pillows put the neck in a forward position, like when you're sitting at your desk, and therefore cause or exacerbate a neck hump.

- They allow sleeping on the side, in a baby pose (i.e. with your legs tucked up) which, again, mimics the typical posture when sitting.

- Pillows prevent sleeping on your stomach, a position which helps stretch the body (especially chest, neck, hip flexors).

You have congestion. Could be allergic, or non allergic. See an allergist and an ENT and get it checked out

Thank you, very useful information. Never thought of neck problems but my ergonomic situation has been bad for a couple of years now and lines up with these problems.

what’s the solution to congestion?

He suggests osteopathy, but there's criticism to the methods. I guess, if we exclude osteopathy, it would be mild massage, and excercise to move and rotate the neck.

if its allergic, then treat the allergies. non allergic I have less experience with, but my understanding is flonase / antihistamines could still help

many other causes though (nasal infection, diet, etc)

My CPAP with warm wet air in it has fixed mine.

For anyone using or considering a CPAP device, you should also do some research into mandibular advancement devices (MADs). They’re basically a mouth guard that opens your airway by moving your lower jaw forward.

They are lesser known than CPAPs but are much simpler and way less invasive. They’re often well suited for people who are thinner and/or have milder OSA symptoms.

I couldn’t use a CPAP but using a MAD has helped significantly (although perhaps not completely).

I have severe sleep apnea and made the switch from CPAP to MAD a couple years ago. Expensive but covered. Never looked back. Much simpler on every level, works about the same. My wife confirms I don't have apnea episodes.

When you say "covered" you mean your insurance paid for it? Are you in the USA? I understand it's not covered unless you do a series of sleep studies.

yes, in the USA, yes - covered. and I did have to have a sleep test for the cpap, but not the MAD

I remember my sleep doctor mentioning them as an option, but with a risk of altering the jaw's shape.

It's not really a risk. I use a MAD. In the morning I have a little insert that realigns my overbite and do 5 minutes of muscle exercises. If i don't do that i notice alignment issues when I'm chewing. If i do, it's not an issue at all throughout the day. There are studies that have shown that overbite decreases over time but it's not clear if they do the reset procedure every morning.

Had this, definitely nearly had a mental break down and panic attacks.

Solution for me ended up being: 1) Drinking less as relaxed breathing triggered it 2) Walking long distances while practicing breathing deeply and hill climbing to build cardio and stronger lungs.

After that I had almost no issues, fixed it like a charm. YMMV

Thanks for sharing what worked for you. I've been wondering if light-moderate drinking might be affecting me, and it seems to be a common thread in what I'm reading about this condition.

Drinking induces sleep apnea for me. If I go out for drinks I will end up feeling like I completely regressed for a few days / up to a week.

It relaxes the soft palette during sleep and causes major apnea / hypopnea events.

I found this hard to read. I have struggled with poor sleep for years (like, 10 years probably). It's not _that bad_, but, memory isn't great and definitely don't feel rested in the mornings. But I'm still reasonably functional, can hold down a job etc.

A while back I got tested for sleep apnea, had a 6 or a 7 on the scale (mild). I tried the CPAP machine for 6 weeks (inside the time I could return it). My number went down to 1 or something, but, I didn't feel any different, so I gave it up (this was about a year ago, maybe a bit longer).

I decided to try get to the bottom of my tiredness again and was recently at my doctors. He said it would take 3 to 6 months of using the CPAP machine before you'd know whether it would make a difference! I'm trying some other things first (giving up alcohol for 6 months as of yesterday!), taking nasal sprays and a device to stop me snoring.. Really hope something works out as it's just so annoying!

I'm very jealous in a way that the author found out the root cause of their issue. Well done keeping at it! For anyone who has successfully used CPAP, did it really take 3-6 months before you found it made a difference?

> For anyone who has successfully used CPAP, did it really take 3-6 months before you found it made a difference?

It took me a year of active effort. I was waking up multiple times a night choking, so I didn't feel like a had a choice but to stick with it. Some people don't fully wake up, so it may not seem like such an obvious thing to them. I never would have made it through without https://www.sleepfiles.com/OSCAR/

We went away for the weekend recently and I forgot the power cable for my CPAP. It was a rough trip for me, and I remember thinking "I can't believe I used to just feel like this all the time".

It's not easy to sleep with something on your face. It's mentally upsetting to think you're reliant on a machine. Most people need to tweak their settings to get maximum benefit. And you're working with like 10 years of sleep debt. Why would it NOT take 3-6 months to see a difference?

It took me about six months to notice anything to be honest. I've been on it for almost two years now and I still don't feel 100% but I feel like it's a very very very slow gradual improvement.

I am extremely affected by outdoors noise during sleep. Traffic, construction, kids crying, people shouting..

I try my best to convince myself "I'm perfectly comfortable, nothing's happening in my bedroom, whoever is causing that noise can not affect me in any way" but to no avail :(

If the source is indoors, like the whirr of a hard disk (very annoying on recent Macs + external hard disks, constantly spinning up and down) I have to turn it off before trying to sleep.

It gets so bad that even the mere anticipation of an expected noise, a clang or a honk or a yell, prevents me from falling asleep. For me it's definitely psychological than physical. Sort of an arrogant insistence that everyone and everything should be silent while I rest.

Thankfully when I'm really tired I stop caring about noise and just drop like a log.

Start using a white nor brown noise machine. Noise issues like this are typically because the noise has lots of variation in volume, spikes in loudness, etc. The steady droning of a white or brown noise drowns out lots of that kind of background noise. I just use my phone, lots of free apps available. Ear plugs help too, though they can be irritating sometimes.

Oh man, I know that feeling of dread as you're waiting for the next shout or clank. It took some time to try out various earplugs, which at first made me sleep even worse, but once I was used to wearing them while sleeping (after 2 weeks) the difference was night and day.

Same here, but I found that silicon earplugs really help(the foam ones do not work).

I get insomnia. I've been doing CBT-i for a month. It's been transformational. Throughout this experience, I've learned a lot about sleep that I wouldn't have learned otherwise.

8 hours of sleep per day is generally a myth. The amount of sleep people need varies from person to person. Ironically, fixating on getting eight hours can cause some people to get insomnia.

Insomnia is a condition that is often caused by something (like work stress for the author) but drastically overstays its welcome. My CBT-i program emphasizes that trying to determine the root cause of the insomnia is pointless because of this phenomenon. This theory of how insomnia develops is called the 3P model and was developed by Dr. Arthur Spielman in the NINE TEEN EIGHTIES. (We've been sleeping for thousands and thousands of years!) https://insomnia.sleep-disorders.net/clinical/three-factors-...

Sleep apnea is super duper common. But the world (well at least the US) prides itself on working harder and sleeping less. I've met tons of people who start work at 6am but "get to sleep" (usually means "get to bed") at 10pm or later, partially because they wrap up work at home.

There is an over-fixation on the long-term degenerative effects of sleep. However, those effects are poorly understood because sleep in itself is poorly understood.

You can't really control sleep. That blew my mind. You can train yourself to get sleepy on a schedule, but actually falling asleep isn't up to you. This is why a lot of common sleep hygiene advice isn't that effective (or is actually regressive) long-term. CBT-i focuses a lot on this in particular.

Alcohol and sleeping pills DESTROY sleep. That is one of the few things about sleep that is extremely well understood. These things help people get to stage 1 sleep but inhibit the deeper sleep stages that start recovery processes. (The author took antihistamines for years. Antihistamines are used as sleep aids, though they are habit-forming and can cause gnarly insomnia when you get off of them without weaning off.)

So I agree with the author. I strongly believe that ALMOST EVERYONE in the US struggles with sleep, but, like sex, talking about that is taboo and drugging your way through the solution is socially acceptable.

I would agree with almost all of this. The worst bouts of insomnia I had were caused by going without sleep for a day or two and then starting to fixate on all the issues it might cause if I did not sleep. The anxiety surrounding the problems I would have the next day with little sleep was the biggest culprit.

You stick yourself in a programmatic loop by trying so hard to make yourself sleep. As you said, sleep just happens, you don't force it.

Generations of people have gone on very little sleep for decent stretches of time. It is impossible for your body to not sleep and at some point it will happen whether you want it to or not. Fixation on making your sleep better will only do the opposite.

Do the main things that help sleep - exercise, no caffeine after noon or so (if you're on normal day schedule), get off the screens at night near bed time and wind down appropriately. Other than that you must take an attitude of 'So what if I don't sleep. I'll feel slightly bad tomorrow and that's about it'. You will not suffer all that many long term effects of a little sleep deprivation here and there.

Thank you. This and GP's comment are refreshing to hear. All I see on the news about lack of sleep is doom and gloom. According to them, I'm totally fucked in a myriad of ways and it's too late for me since I've held a sleep deficit for so long now.

Yeah, I understand lack of adequate sleep is bad for me, no shit. I'm doing the best I can and you're not helping. (addressing those sleep gloom and doom people)

I just had a kid. I came to the conclusion that if sleep deprivation was a detrimental as some of these people say then our species would have become extinct long ago. Our bodies are able to cope just fine on lack of sleep and recover down the road. Is it ideal? No, but I've surprised myself with how functional I can actually be with lack of sleep. I just say, hey that sucks, and then move on with my day.

I have a horrible snoring issue and I have some problems with burnout, "brain fog", and inability to stay focused. I have a snorelab score in the 50s and my wife kicked me out of our bedroom since she can't sleep. I did a take-home sleep study with Kaiser once but they said I just have mild disordered sleeping but no apnea. I'm not super fat or anything either (BMI = 23.9).

It seems like I very likely have something similar to what OP has but I don't know how to get diagnosed properly. It's really hard to get a hold of Kaiser's head and neck surgery department too since they only take appointments by referral and can only be reached by voice message on the phone.

Many cardiologists also treat CPAP, since undiagnosed apnea can result in heart issues. Probably one of them could order a sleep study. In theory your PCP could order one too, but many are uneducated on apnea. My mother's PCP said she couldn't have it because she was "too cheerful".

Bear in mind, surgery is not considered the best treatment. Before you let someone cut you, you should really look at the numbers

The good news is, if you're snoring, you're still breathing. You might not be breathing well, but you are still breathing.

The bad news is, long term snoring will damage your airway, which could even cause sleep apnea in the long run.

You can (usually) treat snoring with CPAP, which is reasonably easy to do and low pressure settings will probably do the trick (compared to full blown apnea where more pressure might be required). Depending on what causes the snoring (flappy uvula, nasal congestion, whatever), different treatment options might be available.

What you probably want is a "sleep endoscopy". This is where they sedate you and look inside your airway as you take a nap. This can help doctors pinpoint the root cause of the snoring, which might set you up for a fix ...

A sleep test diagnoses sleep apnea. DISE can give clues, but Dr Kasey Li is against it saying it gives a lot of false positives from his experience. Home test + polysomnography is his standard, along with using his experience to review your CBCT scans

False positives? If you snore, you snore. All DISE is going to do is help figure out what's causing the snoring. I don't know this Dr Li, but you're making them sound like they're part of a cult.

if you have the money, Dr. Kasey Li is the best sleep apnea surgeon in the bay area, possibly the world. He is the protoge of dr Christian Guilleminaul who is the founder of sleep apnea medicine. He does MMA and EASE, both of which solve structural issues if you have narrow airways. He also won't do it unless he thinks it will truly make a difference. One friend went to him for a MMA but he turned him away and referred him to cheaper surgeon as he thought the procedure would only partially help in his case. You are paying a down payment on a house though if you go with him

He doesn't accept any insurance?

It is very difficult to get his procedures covered as he normally charges more than the customary rate and is out of network. I guess most of his procedures are out of pocket

I don't know if I actually buy this cause and effect. The writing and other hints sounded like some kind of neuroticism unrelated to sleep apnea. I wouldn't be surprised if it comes back in the future and the author "finds" some other cause such as eating gluten or anything else en repeat.

I'm also curious as to the conclusions drawn -- it seems like there were a lot of relevant potentially confounding variables changed. Was there a followup sleep study? Or something to confirm the suspicion of an alternative form of OSA (upper airway something something)?

I don't think I have OSA, and I've always had poor sleep (ongoing), but going on allergy immunotherapy shots has tremendously improved my quality of life.

I did not put strict detail in the medical interventions as this is not meant to replace medical advise and its not as engaging in story form to list things rigorously

But I did followup home tests after treating it, and have done polysomnography which is the gold standard of diagnostic test. I also wear continuous spo2 monitoring on a monthly basis to see where I am from my own device bought on amazon

To treat, I needed a team of specialists (sleep doctor, allergist, ent, maxillofacial surgeon, GPs, and a gastroenterologist) to tackle the various causes and measure the effect. I also consulted Dr Kasey Li, probably the world's leading expert on sleep apnea surgery. He recommended his own surgery expanding the maxilla, but I don't think I need to go that far as its very expensive and I am much better today. I've seen several sleep doctors, will list Dr Sinha at peninsula as someone I would recommend, along with AXG Sleep Diagnostics for an affordable polysomngraphy if you need to pay out of pocket. For ENT, I will also recommend Dr Gerald Kangelaris (skilled surgeon) in SF and Dr Andrew Murr (head of ucsf ENT) if you need a second opinion

Also a lot of my interventions are done daily. So if I miss things or get lazy I can recognize if there is a difference. I also motion record myself automatically every night. In the morning I review how much I toss and turn. Its been about a year of experimentation

What kind of spo2 monitoring device are you using? What percentages point to an actual problem? I recently got a Garmin watch and turned on spo2 monitoring during the night. Most of the time I have >90%, but it sometimes drops to as low as 83% for around 15 minutes. I'm unsure how reliable the measurements are and if 83% is a problem or not. (My current situation is the same as many others in the thread: Young, skinny, sleep problems, but the doctor is sure I don't have sleep apnoe, because I'm not fat...)

This really resonated with me - I went through almost the same experience, with allergies and UARS almost destroying my life. The worst part about this for me was what you described as root causing self issues, something that we had to do while also experiencing issues with memory and cognition caused by the problem we were trying to solve. What a terrible catch-22

> I had reached a stage of mental illness. One that is not aesthetic and talked about to spread awareness. But one where people would avert their eyes. This period was a dark era in my life.

This is actually all mental illness, we just seem to be really bad at dealing with it as a society. It's quite shocking how little empathy or support people seem to have for "unfashionable" mental illness.

Yeah. Kanye is a roscharch test. Mental illness is not pleasant or even easy to pity. It will offend you. It can be disturbing, violent, and insane. I have no ideas, this is just the way things are

I’m a member of an entrepreneurs forum where every so often someone will ask about improving their sleep. People are willing to try literally any pill they can source or rare Chinese medicine or vinegar diet or whatever, but what they are usually not willing to do is go and get a sleep study done and find out if they have sleep apnea.

Yes, you need to treat the actual underlying condition causing issues. Lots of health issues interfere with sleep.

Muscle tension was another confounding factor. I was tense all the time. Treating muscle tension improved my symptoms, but it was only a band-aid.

Potassium deficiency can cause muscle tension or cramping and will also cause poor sleep.

Not mentioned in the article but I also tried this. It worked in the short term but it was ultimately not the root cause as my symptoms persisted past it

Had crippling insomnia for most of 15 years. It's the worst thing that ever happened to me and I would not wish it on anyone. I'm convinced I've lost years of my life - not just in the sense of wasted time, but shortened life. But no use being bothered about it.

The mainstream knowledge is still slow to catch up, but things are better than when I was researching at the outset. All you had from online searches was boilerplate inconsistent "sleep hygiene" advice and nothing else. I took a methodological approach and cracked open some books, and spent a lot of time on google scholar / pubmed. Self-adminstered CBT-i was an important intervention, despite its flaws - you can gripe that there are blind spots (e.g. it's possible to have automatic negative thoughts through conditioning despite knowing and understanding that they are distortions, 3rd-wave approaches like MCT make it a point to handle this), but in the main, a better mental game is absolutely key. Other interventions included eliminating pornography consumption, exposure to more sunlight in the morning and daytime, limiting total time in bed, experimenting with bedding, and even dietary changes. There were others as well I can't think of right now. Basically threw the kitchen sink at it. The mistake I often see is that those afflicted will rationalize that trying interventions "will lead to anxiety". There's no reason they have to. The anxiety comes from you.

I had some issues like this but only manifested when I was on work trips which lasted weeks to months. I can tough out several days of sleeping in a hotel but the longer the stay the more I react to whatever is common to hotel rooms and the problems breathing / and sleep apnea gradually push me around the bend.

Returning home cures me after a recovery period.

I wonder, do the hotels you stay at differentiate the smoking and non-smoking rooms?

Where I live does, I once accidentally booked a smoking room and I could not sleep at all. It felt like I was burning my esophagus.

I suspect smokers just don't feel how inflamed their airways are anymore, otherwise I have no idea how anyone could live like that.

I'm not a smoker, but nicotine does have an anti-inflammatory effect. Maybe it balances out if you're the one smoking?

You do get used to it. It's not till you quit that you realize how poorly you were breathing before you did.

Maybe the air-conditioning is drying out your sinus?

Very likely!

Getting to sleep early, getting up early 1hr before sunrise, diet and exercise - been absolutely priceless change for my life. You don’t get your life back, not even a second. Old age sneaks up on you and once it’s there it never goes away. I had to go through a complete burnout on my job to make these changes. In some way a blessing in disguise. But don’t wait till it’s too late. Prioritize these small changes little by little.

I wonder if Apple Watch can detect/show signs of sleep apnea? It measures your breaths, so I theorize if you have sleep apnea, you will eventually stop breathing then wake up suddenly to breathe hard due to the lack of oxygen. So it might show as unevenly breathe rate on the watch.

But I guess monitor your breathing during sleep using WiFi signals is a better solution.

It doesn't, but only because it polls relatively infrequently for biometric data. The increase in pulse or decrease in blood oxygen saturation is not likely to be captured if it lasts only a few seconds and the watch records a datapoint every few minutes to increase battery life

This happened to me after making a rash decision about a new apt in NYC. When I visited to view the apt it must've been at a time when street noise / people noise was at all time lows.

About a month into living there my work productivity tanked, I started noticing patterns of depression coming back and I legitimately started to hate my life. My sleep wasn't atrocious, but I'd be jarred awake in the morning by vehicles, had to wear earplugs at night etc. This drove me to a point of literally leaving New York entirely and I don't think I'll ever go back due to my current apt (in a different state) being completely quiet, having a dedicated dark silent room to sleep in and another room for working (as I'm full remote now).

Can something like a fitbit be used as an initial screen? Mine detects multiple very short sleep interuptions every hour during sleep and I have no idea how to interpret this.

(I'm chronically tired and distracted and I have no idea where to start - sleep apnea, ADHD, food intolerances...)

If you are chronically tired you should go see a doctor regardless of what the fitbit says.

Possibly. But you need continuous sp02 monitoring, whereas fitbits only do it a few times per hour.

A take home sleep test is easy and is covered by insurance.

>A take home sleep test is easy and is covered by insurance

Do you know of any other alternatives for sleep tests that are not covered by insurance? Because the reality is sleep study in the United States is incredibly expensive. I did a sleep study and the insurance billed my company over $50,000 and a take home test was 2.5 grand.

that seems like inflated pricing. there are solutions from the internet for hsat (lofta and night owl) that used standardized devices. If you want a psg, there's a place in sacramento (axg sleep diagnostics) that will mail you the psg device for a night, for around 600.

My hsat was covered by insurance, but I had to self fund psg and my insurance wouldn't pay for it. My sleep specialist quoted 3k, I went with axg sleep diagnostics.

I believe that's completely normal (at least that's what my fitbit says). Unless I'm also suffering from sleep apnea of course.

Hello WagTheSam, thanks for a good write up. Can I just ask, what air cleanser did you get? I am thinking of trying this, I don't trust my apartment buildings air vents. What is the gain compared to just opening a window - if you live in a not too toxic environment?

AirPura is one of the good ones: https://www.airpura.com/

I have one and it felt nice, unfortunately because people smoke in the building I live I can't use it since the smell collects in the filter very quickly and they are expensive (but last a long time if not for the smell). A bunch of carbon could help with that but a) I try to avoid stuff from low wage countries as the carbon is (but not the rest of that particular air purifier as far as I could tell) and b) hopefully I can just move in the not extremely distant future.

There are a few others as well, look for the better quality filters ("SuperHEPA" as AirPura calls them). As I understand it, the small particles are the ones that aggrivate allergies the most and that is exactly what the higher quality filters are better at. Only a relatively few companies have those better filters, IQAir is another one. It turns out the name HEPA doesn't mean anything for consumer filters, you need to look at the specs.

They are all about the same. What you want is flow rate. Meaning 99.9% efficiency high end filter is not that much more than 99%. But if air gets filtered 2x vs 5x every hour then the 5x worse filter will probably be better

So just make sure to not place the air purifier in a corner, but more central. And turn it up to a higher power. Or run your AC fan continuously

Opening your window during pollen season will wreck you, if you have spring allergies, for example.

Yes opening windows brings in dirt and car fumes and pollen. AC and air purifiers much better for environmental health

A DIY Corai-Rosenthal box would be the most cost-effective one.

https://www.brown.edu/news/2022-12-23/corsi-cubes-study

So happy for the author that they discovered the solution to their chronic health issues. Some estimates suggest that 10% of the population are suffering undiagnosed health issues. Thats a lot of people whos quality of life is being potentially severely disrupted because the health system is not designed to provide deep dive diagnostics. Surely the productivity gains in solving these health issues would easily pay for themselves. I hope this is an area where AI will truely shine by providing an effective stepwise differential diagnosis for anyones set of vague symptoms and conflicting biomarkers.

Aside from allergy treatments and surgery, you mentioned the following: nasal sprays, nasal dialators, a bumper belt, and acid reflux suppressants. Do you still use all of these, and if so, do you have a sense about what had the most impact?

The only one i'm not sure about is acid reflux treatment. From my own experience congestion + sleep apnea => acid reflux. But I have not seen improvement in sleep apnea from treating acid reflux. Although in the study linked in the article its shown to.

Try flonase first with zyrtec and azelastine. Bumper belt only works if your apnea is positional in nature. And nasal dilators are secondary to drugs

How about trying acetazolamide or high dose thiamine (1500mg+) for it? They both act as carbonic anhydrase inhibitors, therefore could be used to treat altitude sickness and thus be beneficial for (central) sleep apnea as well.

I don't have central apnea thankfully. One thing to note

Hey Samson, thanks for sharing your experience and I'm glad you persevered to diagnose and treat your condition. I think many people would have given up.

I'm curious, did you track metrics past AHI and how rested you felt the next day?

We have 2 cats that I love but one of them makes sure that I do not get a good nights sleep. I could not find any solutions so far. On top of that my wife snores and I’ve had long periods of poor sleep as a result of this.

I realised that this is an issue while traveling. Being able to properly sleep in hotels and feeling rested / clear.

Trying to find solutions. Ear plugs don’t feel good and even though sleeping in the guest room helps with snoring, not the cat. (I close the door, little shit screams his lungs off in front of the door)

I never slept great in my 20s either but I guess my body could cope. Now it’s screwing things up.

I have 2 cats who are deaf and scream when they are anxious. They are very sweet but I could not sleep for 2 years. It was becoming intolerable. I started them on Fluoxetine (Prozac) and the problem has been reduced by 80%, I get at least 6 hours of sleep before one of them yells, and usually 7 or 8. They are happier and so am I. There is stigma about putting pets on psychiatric drugs and some vets are hesitant but I highly recommend it.

you can do immunotherapy--allergy shots. i have a friend at work with the same issues, loves his dog but it wrecks his sleep. allergy shots desensitize you to animal dander, but its a long process with weekly injections. Results in 1 year+

I think parent implies they wake up because of the sounds their cat makes. This is what happens for me btw and it's pretty frustrating.

Yeah that was it. The cat jumps on me if I let him in. Meows like crazy if I don't. Maybe I should stimulate him more during the day though.

Also, in the meantime take an antihistamine like zyrtec daily as you have allergies

If it were me, that cat would either be crated at night a few rooms away, or better yet, rehomed.

I suspect I might have this.. Do anyone know a device which can continuously measure and log blood oxygen levels ? Just a simple thing that logs to a file on an SD card ? I don't want apps or online stuff..

I'm trying to understand how exactly do they know sometimes if there is central sleep apnea or obstructive sleep apnea happening with the tests. Is a CPAP or other machine helpful for central sleep apnea?

When CPAP machines detect that the airflow has stopped for a few seconds, they send a series of little air puffs to determine whether the airway is still open (non-obstructive apnea) or blocked (obstructive apnea). The puffs are gentle enough that they don't wake you up and don't force the airway open.

If you're talking full-blown sleep study with all the sensors, then it's pretty easy. If you're attempting to breathe but no air goes in: it's obstructive. If you're not attempting to breathe, it's central. You can detect whether or not someone is trying to breathe by looking at the chest strap reading.

The cause of central apneas isn't always clear, but at high CPAP pressures it can be caused by CPAP, because it can end up blowing off CO2, and breathing is done primarily in response to an increase in CO2.

if you suspect central sleep apnea, you need to work with a specialist that has done research in central sleep apnea. Its a poorly understood condition. But from my understanding treatment is different

I'm glad you found the root cause and were able to fix the issues.

When I started reading this, I was shocked how that workplace exploited you to the brink of your existence. To the point you lost your identity.

I can relate to this, running from one fire to the next, a constant race, while the managers laugh at the margin they achieve with low staff. The extra value you create for the price of your finite time and health.

I'm angry at this injustice people have to subject themselves to.

I tried to identify a problem within myself for years, but realized this once I got closer to management...

We exist in constant competition with one another for status and worth. But thankfully in this part of my career I have more choice as to what I want to do / the level I need to sacrifice.

Currently dealing with severe sleep apnea & the near inability to breathe thru my nose as a younger, athletic in a past life, skinny & thin framed male. Unable to get started w/CPAP due to life instability, & even that isn’t going to fully fix things as I have to have other major surgery that involves surgically removing my completely wrecked scalenes (anterior & middle - scalenes are secondary breathing muscles), a septoplasty, & a large amount of physical therapy & potential other surgery to help with severe muscular issues around/relating to my diaphragm (primary breathing muscle)

I’m affected in most ways he’s mentioned - but one thing I didn’t see is & what in the grand scheme of things is kinda dumb - is that chronic mouth breathing absolutely wrecked my once chisel-sharp jawline. Hoping one day after a few years of breathing thru my nose & postural improvement it will somewhat reappear.

I furthermore got completely shitrekt from the most wildly near-unbelievable thing - I have a mattress (from a company with owners who were HN users & described severe quality control issues with their mattresses that conveniently lined up near the time I purchased it - very fun lawsuit) that was apparently made with a sufficient amount of fiberglass (textile fiberglass, a bit different from insulation you’ve probably seen before) & the mattress leaked a ridiculous amount of fiberglass through both the bottom & top of the mattress. Having carpeted floors, I was vacuuming underneath the mattress for years, not knowing that was sending it into the entire HVAC system of my house. Eventually found out everything was coming from the mattress… & though I could go on, absolute shitshow.

Now, normally this wouldn’t be the worst thing as a young college person typically spends a good amount of time out of their house & in fresh air. I was unfortunately on bed rest, mostly in my room (ground zero of fiberglass mattress biohazard), for around two years as coronavirus canceled my aforementioned major surgery four times over the course of 1.5-2 years.

Reason in mentioning this: a large amount of mattresses HN demographic may find themselves ordering (e.g. on Amazon/the internet in general) are made partially of fiberglass. It’s such a large issue it’s now made it into LA Times articles - I can only recommend anybody check their brand in a google search with “fiberglass mattress” (maybe site:reddit.com as well)

Now, the good news is that it’s typically only an issue if you remove the zipper covering & release it, & you’ll likely quickly notice. Unfortunately in some it will still leak out of the bottom of the mattress over time (shedding, from pine needles like a tree) & unfortunately for me - mine happened to be an ultra-specific case where the manufacturer didn’t even have a zipper removable cover. It was just a breathable mesh & the fiberglass poked out of both the bottom & top of the mattress, in unbelievable amounts. I’m thankful for my 4k iPhone camera, else documenting it in my situation would’ve been near impossible.

Anyways, fuck you mattress company that used to talk shop on HN. Breathing textile fiberglass shards in my room & entire house for 2+ years wrecked my airways to an unforgivable degree.

Holy shit. I got a Nectar mattress last year. It has CertiPUR-US certification yet googling about it as you suggested, finds it's made with fiber glass (of course not mentioned at all on their website). And when I first got it, it had a small tear on the bottom that I just thought wasn't worth returning for.

To their credit, they have a 1 year return policy. It's going back and now I have to do tons of research (apparently I didn't do enough the first time) to get a mattress that won't make my family sick.

Thank you for sharing this. I had no idea about this issue and would not have known to google about it otherwise.

thats fucking crazy and maddening. I'm sorry that happened to you

It's interesting he mentions allergy shots. It sounds like his doctor didn't know about sublingual immunotherapy. It's similarly effective, but much less disruptive to the ongoings of daily life.

Disclaimer: I run Wyndly (https://www.wyndly.com/) a YC-backed startup that uses sublingual immunotherapy, among other allergy treatments, to help people breathe better.

I know about SLIT, but from my research most allergists don't mix in enough to make it comparable to shots. From studies I read you need 30-100x the dose of shots taken in monthly aggregate for it to be comparable. For example Odactra which is fda approved for dust mites is 30x the concentration of a monthly maintenance dose. I am allergic to almost everything, so I imagine it will be too costly to treat properly

Also it is much less regulated as its not fda approved, so the quality you are getting is less certain than shots. I would not be surprised if the majority of SLIT use cases in the US are placebo due to cost constraints outside of the fda approved tablets covered by insurance. Yes studies is one thing and its shown clearly that its comparable, but you need the right concentrations

TBH I am skeptical of startups that operate in this type of environment as theres not enough oversight. For me to be comfortable it would need to be very transparent what is going into the mix

source: https://fairfieldcountyallergy.com/whats-the-story-on-allerg... "Sublingual immunotherapy is not currently covered by health insurance companies in the United States because it is ineffective as it is done here"

I agree with you -- the protocol is what matters. Your concern about the dosage applies to allergy shots, too, however.

At Wyndly, our protocol follows the academic research. I'll work on making this more explicit.

Hey! It's 2AM for me and I have a meeting in 4 hours and still can't fall asleep. This is pretty typical for me regardless of exercise or caffeine intake.

Lots of changes you can try:

https://hubermanlab.com/toolkit-for-sleep/

You might also be a slow caffeine metabolizer, so even one morning coffee can disrupt your sleep for more than 24 hours.

I also was offered a CPAP and I hated it. I ended up going to an acupuncturist and didn’t really have issues with sleep apnea after some treatments.

Thanks for sharing! Sleep is the most important way for our bodies to rest, and I also have stuggled with sleep in the past. Luckily, I was able to effectively improve my sleep through getting some exercise. Your article provides a helpful approach for those who are having difficulty improving their sleep. When all else fails, it's important to consider seeking more professional treatment.

Yes one thing that I didn't emphasize enough was that I had a team of specialists treating me:

- An ENT and a consulting ENT for a second opinion

- A oral surgeon specializing in sleep apnea

- Two sleep medicine doctors

- Two allergists ( one for shots, one for consult )

- Multiple GP's from one medical

- A gastroenterologist that did an upper gi endoscopy

My message I tried to convey is that you need to own the entire process though. none of the people above will do it for you or do their job beyond their specialty

I recently went through a surgery for treating my sleep apnea. I have documented my experience here. Happy to answer any of your questions

https://www.quora.com/profile/Kartik-Sura/My-Struggle-with-A...

congrats on your recovery!

I had a somewhat similar experience altho different diseases. First one was gluten, and even after I figured that out it took a long time to recover from the brain fog and various aches and pains.

More recently, Crohn's, altho that was more straightforward medically. The lead up to Crohn's was a period of working too hard and going out too much in San Francisco.

Sadly CPAPs are money train for the medical industry. Something that probably costs about $60 to make in China will cost you ten times that up front plus $60 a month (with insurance!)

Their are other permanent solutions that would work for many people, but but those have been made largely unobtainable.

nasacort/flonase can be quite good for opening up congestion, but please beware of any vision symptoms as both are associated with glaucoma and cataracts under long term use regimes. read the insert/talk to your doctor.

that said, these days i swear by melatonin. sleep deprivation is no joke at all.

Also the headaches and nausea are no joke either. I can't recall the details but it was one of the worst medical reactions I've had and it took too long to notice. Be careful with flonase.

Without immediate access to at-home sleep test kits, could something like Sleep as Android [1] (which claims to record breathing as well) be used to find out, in a first approximation?

[1] https://sleep.urbandroid.org

No because the diganostic criterea is nasal restriction + sp02 decrease. Or microarousals scored manually by a specialist from an ecg. You need a physical device measuring these signals

I share here with you all that sleep apnea can be cured. I helped cure a friend by using her genetics and diet/life changes. No more mask. And her fatigue an peripheral neuralgia is gone.

It had to do, for her, Vitamin D3, catalase, and selenium. This increased her somatostatin levels, growth hormone levels, and lowered her H2O2.

https://pubmed.ncbi.nlm.nih.gov/29482804/

https://www.acpjournals.org/doi/abs/10.7326/0003-4819-121-7-...

Genetically, she is predisposed to very high levels of IFGBP3 and very low levels of catalase. She also has hasimotos (autoimmune thyroid) which I am sure will go away next.

https://europepmc.org/article/med/17074268

I started getting sleep issues during the beginning of university and during a bodybuilding phase but I treated it as "that's what life is, you don't sleep. Welcome to adulthood." after growing up with an over weight and extreme snorer father who was very much on the stance of "shut up and be tired, that's what life is"

By this point I was already getting to where it clearly wasn't normal and it's extremely affecting my life but I was so weak and exhausted that daily chores felt like I was carrying 20lbs weights on my arms. After years of broken sleep, it completely shipwrecked my schooling and gym routines. This lasted 3-4 years

I thought it was backpain ruining my sleep, since I would wake up 3x a night with a sore neck and back. I decided to check with a doctor. This did nothing, they told me I was too young to have these issue and just needed to fix my routine. I tried some basic tips, fixed sleeping times, new bed, new office chair. etc. Didn't change a thing.

I ended up learning that I snore. Being single all of university, I never heard this. I started looking into this on my own and it was an absolute eye opener [0][1][2].

I never realized how important nose breathing is. It's not at all the same as just breathing through you mouth. I always had issues breathing through my nose when sleeping and always just breathed through my mouth. I would wake up with a completely dry mouth. This is bad for your teeth, it changes your jaw structure, and allows you to choke during sleep. I always assumed snoring was an annoying but harmless thing that guys did but it was your body literally fighting death each night. It's no joke.

I watched one video of someone describing exactly what I was having and he said he would use nasal strips and a piece of tape to cover your mouth[0]. I thought it was nuts but I was willing to do anything. I gave it a shot and just using those nasal strips was absolutely mind blowing. I have been missing this oxygen my whole life. I gave it a shot with the mouth taping and I couldn't believe how well it worked. I was having dreams again, I haven't dreamt in years. Deep vivid dreams. I would wake up and just be 100% the next day. My back and neck pain went away with it as well which turns out was it being caused by me tossing and turning all night.

I have not been diagnosed with sleep apnea but I'm sure I would. The sleep study waitlist is 3-4 years in my country so it will be a long time before I can get the chance. I fully understand, this is NOT the recommended approach but for some reason this whole topic is never discussed. You need to find this out on your own and when you do, it's not treated as a "medical problem". Getting diagnosed with sleep apnea doesn't even get your CPAP machine covered under medical insurance. It's a $1-2k machine you need to pay out of pocket. Plus distilled water. For a broke student, I did what I could and it absolutely changed everything. If that means $30/month in nose strips and a roll of medical tape every 3rd month, I'll do it.

It seemed a bit dangerous to use a piece of duct tape with holes in it, so instead I use a tiny tiny piece of medical tape so if I need to open my mouth I can. It's more so used as a passive reminder to my jaw to stay shut and I wake up with that tape still in the same place.

No, Youtubing your way to a diagnosis is not how you fix issues but it really felt like no one was helping or taking it serious.

[0]https://www.youtube.com/watch?v=g8JzXEoT9LI [1]https://www.youtube.com/watch?v=xivXNQPMGHA [2]https://www.youtube.com/watch?v=-VvMLcwG9KQ

I will add you can get a second hand off a marketplace cpap machine without a prescription. I think many go this route as with insurance they can take it away if they see you are struggling to use it.

I am going to get one. I have all the symptoms of sleep apnea, I wake up with a dry mouth or nose and my wife often has to wake me up as I am snoring like a fog horn. I went to my Doctor and they got me rigged up for a sleep test with a load of sensors, but I could not fall asleep, the whole premise of 'i must sleep so the machine can record me, resulting in me not sleeping at all' and being told I had a negative test result.

I also had a positive experience of taking a sleep study, getting diagnosed with partial sleep apnea, and getting surgery to open up my nasal passage.

I had been wearing breathe-right strips, having been unable to sleep through the night without them.

This is so transparent and has great advice if you read it carefully. Thanks for sharing!

If the effectiveness of sleep studies does not detect sleep apnea then how is it possible that the studies are so expensive? If they're not fully effective, why are there not other solutions?

Sweet Jesus. The illness this young man has is an advanced case of capitalism, not sleep apnoea.

While I still worked at the technology mill, my sleep was terrible, I had apnoea, I ground my teeth to stumps, and suicide was a frequent point of contemplation.

I changed my life, entirely. Stopped subjecting myself to the incessant cruelties we are expected to accept as simply normal.

We have an entire planet filled with people who absolutely know that something is wrong, but they can’t see the thing right in front of them, as it’s so normal and all-pervasive that it doesn’t even register as a thing that exists - so they go get the pills, the devices, the apps, and treat the symptoms so they can continue their good work at the torture factory.

Things are better for me now. It required stopping giving a damn about career, success, and all that crap, and going and doing entirely my own thing.

And they wonder why the birth rate is in the ditch. Stressed creatures in captivity do not reproduce.

>And they wonder why the birth rate is in the ditch. Stressed creatures in captivity do not reproduce.

This seems reasonable, but I wonder why we are so much more stressed in modern first world countries than in places and times where they have had "real" problems, like figuring out how to source potable water or how to not get shot or bombed in a war-torn country. It's usually the case that the harder it is to survive an environment, the more people seem to reproduce, and birth rates go down after most citizens' well-being is secured, which would seem to run counter to the idea that stress lowers birth rates.

Imagine thinking sleep deprivation doesn't exist in alternative economic structures...

"It required stopping giving a damn about career, success, and all that crap, and going and doing entirely my own thing."

So capitalism helped you. There are quite a few ism countries where 'doing your own thing' isn't an option.

Pininiyo3@gmail.com

pininiyo3@gmail.com

I admit I haven't read the article but lately it's been popular to link mental illness to pretty common things. Poor sleep? The logic kinda makes sense. Not sleeping at all will 100% drive you insane, so it could make sense that sleeping only half what you should will have some effect.

But its much more likely that some people genetically and family-wisw are just more suceptible than others. Trying to find an external cause is probably futile.

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