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.
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.
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.
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.
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.
> 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.
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.
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 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:
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?
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
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
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.
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.
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.
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
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)
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)
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?
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.
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.
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.
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.
> 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.
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.
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.
* 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.
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.
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.
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
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 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.
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.
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?
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 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.
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
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.
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.
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 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.
> “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
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.
>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.
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.
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
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.
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
Readit News
If you have sleep apnea, no amount of sleep gadgets, good habits, exercise, will help you. You must fix the root cause
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.
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.
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.
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.
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.
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.
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.
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.
Defend your sleep and well-being like you would a loved one. No one will do it for you.
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
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.
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:
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 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?
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
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 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 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.
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.
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.
[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.
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.
> 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.
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.
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.
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.
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.
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
Anyway! Strong recommend.
(Also, in other rare circumstances, adding a humidifier is amazing)
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 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?
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.
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
Interesting study on the affects of sleep breathing disorders in young people as they age and subsequent behavioral problems.
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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).
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.
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.
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.
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.
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.
- 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.
* 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
Tongue stabilizing devices: https://www.verywellhealth.com/tongue-stabilizing-device-for...
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.
As for analysis, you could try one of these.
https://geneticgenie.org
https://mthfrsupport.com
https://promethease.com
https://foundmyfitness.com/genetics
I believe it would be very difficult to tie my identity to my genome because of these steps.
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 recently had it done and it illuminated an entire class of anti-depressant that has very little efficacy for me.
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 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.
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
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.
The cost is about $18, one time, iirc.
(1) https://promethease.com/
https://www.geneticlifehacks.com/liver-detox-genes-cyp1a2/#C...
The newsletter above is fantastic BTW.
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.
Also would like a source on the 2X cardiac event risk, couldn't find that in the linked article. Big if true!
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
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?
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.
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...
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.
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!
> “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.
[1] https://pubmed.ncbi.nlm.nih.gov/26452168/
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.
>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.
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.
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.
Depends. More modern ones like Desloratadine which don't cross the blood/brain barrier usually don't do so.
Stimulants (prescribed) help me sleep, they shut my brain up.
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
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.