This is quite raw and I'm actually somewhat afraid to share this. But I think sleep apnea is criminally under-discussed and underdiagnosed. It can f your life up sideways and can take years to diagnose. So sharing my story and hope I can advocate for it.
If you have sleep apnea, no amount of sleep gadgets, good habits, exercise, will help you. You must fix the root cause
Interesting. I bet close to all young skinny people with sleep apnea must remain undiagnosed.
My generalist doc basically said "if you really insist we can do a polysomnography, but I'm pretty sure you don't have it, you're young, skinny and sporty. There isn't really much that helps that you can do about it anyway".
I did insist and it turned out that I do have it. The changes in life I experienced are similar to yours. The doc's advice was double wrong in my case.
Some other interesting thing I noticed: there seems to be something messed up about medical diagnosis equipment. At least in sleep apnea.
I've done about 5 "sleep tests" in different countries with different equipment and the results varied between 0, a few 5-6 and one with 15 events per hour (no apnea, mild apnea and "medium"? apnea). The 0 to 6 where with portable "take home" devices, the 15 was a more serious feeling expensive looking in-hospital device with tons of wiring all over the body.
So in short: the same patient can be cured and pretty severly suffering at the same time?!
I'm not sure what's going on there but it smells like corruption in medical devices like that one Netflix documentary talks about. It was an episode of "dirty money" if I remember correctly.
Yes, I was a young fit 23 year old, like, six pack abs and muscular.
I finally got my sleep study, and I had 79 AHI! When I went to get the equipment, they thought I would be severely obese.
It changed my life, but I worry how much long term damage was done until then. My friend told me when I slept over (around age 14) that I would literally stop breathing and he thought I was dead. Then I would suddenly gasp awake.
Anyways, if you're having trouble remaining awake, definitely get tested. If you have everyday headaches, get tested! Life can be much better.
Few medical doctors seem to grasp statistics. They solely consider trends, so it sucks to be a patient who is an outlier. Especially considering lifestyle factors and genetics aren't always properly controlled for in studies.
Just look at how something like different dosages of alcohol affects different populations!
I personally have a high BMI and high creatinine levels. No, I'm not obese with messed up kidneys (which the doctors thought); I just lift a lot and supplement with creatine.
Of course, doctors tend to be overworked, so I don't doubt they would be able to think clearly if they worked normal shifts and got adequate rest.
When I was in my early 20s, I weighed under 60kg (which put me at a BMI of 19ish). I was tired all the time. I went through the usual gauntlet of tests, including a sleep study. The doctors couldn't find any explanation, and after months of this I sort of got used to it.
The months turned into years, and in my mid 30s, my upstairs neighbour complained about my loud snoring. Back to tests, another sleep study. Diagnosis: sleep apnea. They then asked me why I never got treatment in the first place, because apparently that first sleep study indicated sleep apnea ... but because the AHI was on the lower end, and because I was young and skinny, the doctor didn't think it was relevant for me to know.
The intensity of my sleep apnea varies from night to night, and you might be similar?
Based on oxygen levels, mine also varies from subclinial to "medium" apnea. I was deemed not to have sleep apnea based on the take-home test or the in-hospital test... but I wore my oxygen-logging ring during the in-hospital test to check it was calibrated to the hospital's equipment (it was), and the specialist then diagnosed me based on my measurements of oxygen levels on other nights.
Oxygen saturation is something of a red herring when it comes to sleep apnea diagnosis. Sure, having significant desaturation (<85%) is not good for you. But what will really wreck you is the arousals. Someone here mentioned an AHI of 70, that doesn't just mean you're not breathing right seventy times per hour, it also means you're waking up seventy times per hour. With that many arousals, your saturation might not budge all that much, but you're basically not getting any sleep at all.
And while we're on the subject, AHI is also pretty terrible. You could have an AHI of say, 5, which means "you don't have sleep apnea", but if you're sleeping 8 hours and these events only occur during the 2 hours of REM, then you've got an AHI of 20 during REM sleep, which will still wreck you.
It sounds like one of the better sleep trackers (and not just sleep) if you aren't bothered by the whole "send detailed and continuous personal information to the cloud" thing. I'd recommend staying away from that kind of thing, though..
Might be that, but on a meta level: the studies are too expensive and too big of a hassle, because there's not enough demand, because not enough people are being directed to make them, instead having their problems rounded up to e.g. obesity, because that's much easier for everyone than getting a test that's very expensive... You can see a feedback loop forming here.
This, definitely this. Though apneas aren’t a component, I have a severe neurological sleep disorder that went undiagnosed largely due to physicians not ordering a sleep study. Even a sleep generalist I saw favored assuming psychological insomnia and regurgitated behavioral advice like no screens before bed and asked if I tried melatonin. As my sleep debt piled up and my sanity diminished each day, I threw my hands in the air and checked myself into the best behavioral health hospital in the U.S. They did a sleep study and low and behold I was having 100s, sometimes 1000+ involuntary movements per night while sleeping. On the road to recovery now!
Can you say more about the diagnosis and the treatment?
I've had severe primary insomnia my entire life that appears to be getting worse with age and I rather rationally wonder for how much longer life will be worth living.
Prior to diagnosis and treatment I was beginning to wake up up pretty much every 60-90 minutes through the night and then I'd do the only thing that helped at the time which is smoke some cannabis, fall back asleep, wake up 90 mins later, rinse repeat until dawn. I always woke up exhausted, even if i managed to only awake a few times through the night. Muscle pain and severe cognitive deficiency
Basically with my disorder (Periodic Limb Movement Disorder or PLMD) it's categorized by episodes of 100s of rhythmic body movements which will sometimes wake me up, but even if they don't I wake up very tired from the movements.
The current treatment has been nightly diazepam (aka valium). The first-line medication for PLMD in the US is actually a dopamine agonist called Mirapex that is often used to treat parkinson's disease. The American Scholar published a piece about Mirapex in September titled "The Degradation Drug," [https://theamericanscholar.org/the-degradation-drug/] It's a medication known to cause dramatic personality changes and life altering compulsions like gambling and even child pornography. Evidence of efficacy for this specific condition is so thin it absolutely blows my mind this medication is handed out thoughtlessly (they really just want to delay prescribing a heavy sedative), I've told my neurologist I will never touch a dopamine agonist again and caution others to do plenty of reading before going on one
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.
There are products that are essentially an inflatable backpack you can wear while sleeping, ensuring you never roll over on your back (laying on your back makes it easier for your tongue and other soft neck meat to obstruct your airways, so anything to avoid that can help a bit).
Many advice trying a CPAP device first instead of going for a sleep study if you suspect apnea for this exact reason. The sleep tests are expensive and often not accurate.
There are at home sleep tests. Basically a wristband that measures your sleep. Then you take it back to the clinic and they read the results. I don't remember how much it was but it wasn't too much.
The problem is that CPAP really sucks, and if you're more on the UARS side(arousals over apneas and hypopneas), or have poor nasal breathing, it's likely to disrupt your sleep more than it helps it.
My sleep study cost roughly $2300 with insurance (US). I purchased my own machine and supplies because going through insurance requires you to rent the machine. It phones home and if you don’t use it every night it impacts your coverage! No thanks. You need a script to purchase the machine too which you need a sleep study to get. Then billed periodically for supplies. Also, the initial settings they configured for the machine did not work and I had to adjust them on my own using an application called OSCAR. The website CPAP talk is a great place for folks who are new to using a machine btw. I definitely still feel ridiculous putting a mask on every night but it has been absolutely life changing for my energy levels and health. Please do not delay if you think you have this - I promise it is worth it!
That's Jason Sazama a.k.a. TheLankyLefty27. He's good, he knows about UARS and flow limitation. His experience with bilevel/ASV modalities is very limited though.
Needing 11-12 hours of sleep a night, frequent dreams of drowning or not being able to breath, daily headaches, falling asleep no matter how much you wish to remain awake (such as during school lecture or driving). . . And if you can, have your partner watch you sleep. Mine was what did it for me, she said I worried her half to death, and thought one day she would wake up to find me dead (I frequently would stop breathing, then suddenly gasp awake, and of course, I snored like a monster).
My boss has this, he is 35 and not fat at all. His father died from heart attack when he was young. Poor sleep (more like never enough), for some probably unrelated reason got much worse during covid. Always a bit tired, always subpar with physical workouts, but never as extreme as falling asleep when you don't want to. Mentally working on maybe 50%, but he is super smart so still plenty of room. He snored according to his exwife.
He went for tests, first time doctors thought machine was broken, his readings on apnea were off the charts. Second test confirmed it. Worst case they had seen, now has machine for sleeping and feels 100% better on everything. He believes his father had the same and its what killed him. Internal organs getting hammered over years, especially heart.
Either sleepy or tired-but-wired feeling. Reflux. Mouth breathing during sleep(dry/stinky mouth), jerking awake while falling asleep, waking up with a headache, breathless or more tired than you went to sleep. Bruxism. ADHD-like and memory problems. Low blood pressure with cold extremities. Nightmares.
I have wondered if children's diets precipipate this problem. Because so many kids grow up with varying levels of processsed or pre-digested foods (pulverized fruit pouches, not enough crunchy whole foods that require chewing etc) the jaw does not develop fully - so wisdom teeth removals and orthodontics for expansion seems like standard of care nowadays - but really it should not be that way. These cases should be rare but instead they are assumed common and normal. I quick search about this shows there is a relationship but I havent looked much into the details.
Look at the book 'Nutrition and Physical Degeneration' [1] by Weston Price [2], a dentist who travelled around the world in the 1930's comparing facial development and health of traditional cultures eating unprocessed diets to those who switched to a western diet.
There's also the more recent book 'Jaws' [3] looking at the orthodontic industry and ideas John Mew.
Genetics, lack of breast feeding, soft foods, etc probably influence poor jaw development. Also mouth breathing due to allergies and nasal blockages, bad tongue placement, probably other factors. My snoring improved a lot in adult years when I learned to keep my mouth closed and breath through my nose. My tongue position was so bad that an ent suggested tongue ablation, but instead I learned to deliberately thrust my tongue against my palate so it doesn't collapse back. It's difficult because in childhood I basically learned to mouth breathe because my nose was always blocked. That probably caused a lot of my problems with cavities and poor jaw growth. I was also bottle fed mushy foods for the first few years, instead of having more solid foods. I did use a night palatal expander as a kid, but wasn't too consistent in turning the key and my parents weren't really persistent with it.
They do, yes. There's a substantial body of research showing that soft diets lead to undersize jaws in a number of mammals, humans are just semi-unique in that our airways are very soft and floppy and it doesn't take much for collapse to start happening.
If you can't switch your diet to one that involves chewing for the sake of your kid, try and make chewing gum a regular snack.
It could be all of the above. I was diagnosed with "mild" sleep apnea and a CPAP hasn't really made an improvement on my day-to-day.
The main difference is that occasionally I used to wake up feeling completely hung over and near death, and now that no longer happens if I'm using my CPAP.
Most days, I am still tired - I am learning that is probably due to depression/anxiety (working on treatment now), ADHD (can't treat it until the former is stable), and poor stress management (undiagnosed autistic kid with zero social/emotional support).
The problem with CPAP is that it prevents full airway collapse and apneas very effectively, but often just converts them into subtler collapse ending with arousals. It also introduces its own disruption through expiratory resistance, reducing arterial CO2, patient-ventilator asynchrony if you're using any EPR or bilevel features, etc... bleh.
Traditional OSA as found in elderly/obese people yes. But a lot of young people are still on the UARS side of symptom presentation even when they cross the threshold for OSA.
Calcium is a massive stimulant when it combines with the catecholamines.
Omega 3's lower osteoclasts which release calcium from the bones unfortunately the western diet is high in omega 6's which will kill you slowly and contribute to poor health outcomes over a few decades. If you increase your omega-3's, your neutrophils will increase in size and B12 helps prevent neutrophils from hyper segmenting, which means a better quality of neutrophils. As vitamin C is stored in neutrophils, making it a highly toxic environment for pathgoens, your vitamin C levels will also increase. High vitamin C helps increase the iron content in the body, and Iron based Reactive Oxygen Species (FeROS) generate the most amount of heat in the body, which is why we feel warmer as kids compared to elderly people.
Vit K2-MK4 can also help reduce calcium from the bloodstream, I take 5mg of this before bed and sleep very well, better than benzodiazepines, anti-histamines targeting the receptors in the brain which block the feedback look that affects sleep, and other herbal sleep remedies.
If you are aware of the concept of having a glass milk and biscuit before bed, this is because casomorphine in casein in cows milk constitutes about 80%-90% of the protein in cows milk, and casomorphine is a biologically active opioid peptide very similar to morphine!
Tyrosine found in food, like cheese can act as a stimulate, especially if your copper intake is high, which could explain why the RDA for copper has recently been lowered even though copper is needed to make some interleukins which target a wide range of cancers! Tyrosine can make noradrenaline in the brain, a stimulant, which could explain the idea that eating cheese gives people nightmares. When Tyrosine is combined with Cysteine, it improves the mucous membranes so could help reduce your dry stinky mouth, the two make pheomelanin, which is better than just tyrosine on its own which makes eumelanin, although both an an antioxidant effect in the brain.
Thats just an outline of some of the things that can happen in your body when you eat, but some chemicals are better taken when you wake up (copper, tyrosine, cooked English breakfast), some are better taken when you want to go to sleep (carbs, tryptophan).
I mention carbs and tryptophan, because tryptophan is blocked or crowded out by about 5 or 6 other amino acids at the blood brain barrier which reduces the ability to get serotonin and melatonin precursors into the brain. The Kynurenic pathway which converts about 95% of tryptophan into about < 10% of nicotinic acid, at night is a good way of increasing your growth hormone release, because nicotinic acid increases growth hormone, but fat blunts this response, hence carbs at night. Growth hormone, increases the number of neutrophils, again aiding a healthy immune system, whilst you get good quality sleep.
Also remember that RDA's should be viewed as the minimum recommended amount for a maintenance dose of you are considered healthy. GP's never ask about people's diets, because they prescribe licenced drugs, where any liability falls back on the drug company, and most people don't have the resource to fight big business as they generally have met the legal requirements laid out in law.
Not saying all drugs are bad, but I think we underestimate the importance of diet and how the food has changed over the last few decades to get us to eat more!
But Carbs are sugar and sugar spikes insulin and that breaks healthy ketosis. Sugar is completely alien to human body.
But i would really want to read your blog regularly if one exists!
> But I think sleep apnea is criminally under-discussed and underdiagnosed.
I agree that it’s under-diagnosed in people who have it, but it’s actually discussed very widely across social media and in person.
I have some sleep medicine professionals in my extended social circle. It’s common to hear stories of people coming in convinced that they must have sleep apnea after reading about it online, but their sleep studies are nearly perfect.
There’s one doctor in my area who opened her own clinic and pushes apnea studies very hard in advertising. Apparently they score tests differently enough that they can find some reason to prescribe CPAPs to almost everyone who comes through her office, which of course they also happily sell. It has gotten bad enough that she’s becoming well known among doctors as someone to avoid for referrals. One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything.
If anyone suspects sleep apnea they should definitely look into it, but make sure you’re going to a provider aligned with your best interests.
> One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything.
Without commenting on the behavior of the doctor in question, I'd like to offer a rebuttal to this point. CPAP is the gold standard for apnea treatment, but there are a lot of reasons people don't stick with treatment. It's hard enough to get used to sleeping with something on your face at night, and even harder if your machine isn't configured to the exact right settings, something that requires experimentation and data.
The machine sends telemetry to your doctor, but it's just averages for the night and offers no useful insight. Doctors literally have no tools to help you debug the process. My doctor barely tried. She tossed a few mask samples my way. I really needed support and their office told me that I should see a therapist instead because my insomnia was in my head. I was having less than 5 events per hour with the machine on, who cares if I was waking up choking 3 times a night? I can't fully blame them, because they didn't have any more information to go on.
There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful. I didn't go see a therapist, and instead resolved to get to the root of the problem. From start to finish it took me a year to get a full night's sleep with a CPAP, and that was only through learning to read and analyze the data. It was a tremendous effort, and the only reason I didn't give up was because I had just been tired for so many years that there was no other option.
CPAP isn't a pill that you can swallow and just start feeling better. My point is just that people not sticking to CPAP is very very common. I'd be curious to see a source linking this to incorrect diagnoses.
> There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful
WHOA! Thank you for this. I will be checking this out now!
It's really ridiculous to have all this data and not use it. We pay good money for the device and the doctors, and this data should be investigated.
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.
I find doctors on YT more credible actually. Because they actually serve their viewers, actually addressing their particular conditions, explaing in details. As well as those who fixed their own problems after long struggle.
When you watch enough (this mean enough to make you feel older) to understand who you watch, compare opposite views enough and didn't stick to any pharma fakes you find knowledge worth more than efforts put.
And later you actually learn reading technical research yourself and differentiating epidemiological crap from actual sound knowledge.
If you even aren't sure if you get it completely ( and you obviously should not be sure) thats your starting point to find people (it's plural) who actually understand it.
That's how you scale up your way to truth.
Or to a cult if you stop too early, you probably shouldn't ever stop, we learn whole life.
All for free, except your time.
That's the world we live in now.
What a beautiful world it would be without all imposed intermediaries payed for wasting our time and keeping us sick.
But you learn, so you save on drugs, funding incompetent "experts" and probably premature death.
And then you save your family and get mentally and physically healthier children (except if you stop at becoming vegan, then it's opposite of that, and probably you end up in hell, for sure should)
Try to compare worst case scenarios of the outcome of these discussions that are unapproved by you personally:
1. Somebody who has sleep apnea but didn't know it until now can get diagnosed and massively improve her life without any negative side effects.
2. Somebody mistakenly thinks they have sleep apnea and might waste some time and a little money until they understand they never had sleep apnea. No other negative side effects.
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
The App Store is so competitive nowadays though. Any advice for newcomers? (without giving away your trade secrets). How did you come up with your app ideas?
I will start blogging in the open about this stuff because I have enough moat
I target language learning but that was just enough to escape wage labor and have irons burning now. My ideas all come from various hobby interests I know well, and focusing on problems that in some way help other people aspire toward making money themselves. I also find strategies where I can scale without costs or high maintenance needs (eg moving away from servers which can be spun as privacy consideration, despite my devops career; iCloud helps here)
Another tip is that now with SwiftUI enabling much easier cross platform mac/iOS native apps, there’s opportunity to cover those platforms solo where most incumbents are iOS exclusive or one platform is under resourced
I’m also now learning about worker syndicalism and trying to figure out how to build up some organized efforts beyond my solo work without taking on investors or employees
You don’t know many full time workers who struggle with sleep?
Sometimes I find myself awake and alert after 4 hours of sleep. Now when I crash some hours later after that, I sleep for a couple more hours and work more after instead of suffering through meetings and commute without break. I no longer use an alarm and let myself wake naturally. If I'm incapacitated from insomnia, I do housework or rest and work as my energy returns. Employers have no tolerance for this kind of flexibility beyond some isolated incidents. Yes I work with others too, this doesn't only work for lone wolf arrangements.
I'll add that I also suffer from RSI and the same applies there: if I injure my hands, I can make my own decision to use them less for some time to give them the rest they need, and shift what sort of work I do or how I spend my time meanwhile to accommodate (because I don't have rigidly defined role expectations as wage earners do).
Lots of folks don't work at the same time daily, and more work a shift that makes them sleep less due to children (Second shift, but has to get up to get the kid off to school). A good deal of other folks have long commutes or can't get out after 8 hours (their shift is 8 hours plus an hour lunch or standard 10 hours).
It doesn't seem that hard to get unhealthy sleep patterns in a workday.
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:
I'm not a person who went from high functioning to struggling. I'm a person who went from no longer able to attend high school to ten years of being trapped at home by progressively debilitating fatigue.
I've tried hundreds of things over the years, but it's like playing whack-a-mole or trying to slay the mythical hydra. For every improvement I manage, I fail two. No matter what I do, it isn't enough. I can barely take basic care of myself, treatment is unachievable.
I fooled myself into thinking it'd get better when I started PAP, regularly working out. But it just wasn't enough to function. And then extreme post-meal fatigue hit, and everything has gone to shit.
At this point, I'm not even able to try psychologically. I've given up. It's over. Each of my problems has a realistic fix, but none are achievable for me. I can't even do my own groceries or prepare food half of the days.
Could there be an untreated underlying issue? Seems worth doing a thorough checkup to eliminate Lyme, Wilson's, Sjogren, Lupus, neurological issues like FTD, diabetes, mental illness, eg major depression, or even hormones (low t), thyroid, iron levels, etc. Maybe there is something like modafinil that can give you a boost (with a prescription of course).
There definitely is. Partially managed sleep disordered breathing is one, whatever's up with my gut is two, but healthcare where I live sucks. I wait for months just to be treated dismissively and told I need a shrink for daring to think there's something physiologically wrong with me.
I'm pretty sure you've already looked into this but I couldn't scroll past without dropping in my thoughts; feel free to ignore them. I'm dealing with similar problems as a post-covid sequelae, in my early 20s with debilitating problems and also having to get to the root cause myself as doctors are clueless. Have you had your gut microbiome tested (with zonulin + IgA + parasites, fungi and viruses)? If so, feel free to plug it into cfsremission.com to see if something pops out. Oral microbiome and health? SIBO test? Candida? Immunological check up? ANA? EBV or other latent viruses reactivation? Elimination diet / carnivore? You could also try FMT if all else fails (either expensive at a clinic or DIY at home). Good luck man, you're stronger than most of us.
I do want one actually, yeah. Much of my decline started after heavy antibiotics a few years back, and I've experienced temporary relief of some symptoms from antibiotics last year, but then they came back with a vengeance.
I'll be seeing a gasteologist who has published papers on FMT (most here haven't even heard of it), and if that fails, I'd definitely like to DIY.
Have you tried parasite cleanse? I’ve used veterinary dewormers to great effect. I’m also surprised no one has mention doing sinus rinses to clear their breathing problems.
This makes me really sad to read. I really hope you don't do that. I can't imagine how hard this must have been for you.
I sometimes feel like life is to much. What helps me is the realization that life right now is hard but I am enduring. What makes it feel to much is the feeling that this burden is going to go on forever. So I try to be satisfied with the fact that I am capable of handling life right now, and the future is a problem for future me.
What techniques have you looked into for improving your condition?
It makes me sad too, but it just is what it is. I've had individual days of the sun shining through the clouds, but in the end, the trajectory of my life is always downwards.
It doesn't matter what I tried. I don't have enough executive function to stick to it. For every win, I fail two other things. It's a thankless, Sisyphean struggle just to survive from one day to the next.
I wish I could catch a break, but my other problem is horrifying, debilitating, day-long fatigue after eating nontrivial amounts of anything at all. No specific triggers, it's either starve myself or feel so horrible I can't even read/watch/game to distract myself.
I'm no expert so don't take too much stock in this suggestion, but I figured I'd speak up on the off chance it helps you.
I experienced similar symptoms with eating anything causing extreme day long fatigue. This was a problem for me for over a several month period. It started as diarrhea when eating my typical diet of seemingly healthy foods. Then it progressed to eating very little and getting exhaustion from eating even when diarrhea wasn't triggered. I reasoned that I probably had IBS, and worked on figuring out what foods trigger it. For me I found it was the following: milk products, high fat products, animal fat, any meat except low fat chicken and fish, high fiber vegetables, high fiber grains, high FODMAP food such as fruits. Eventually I settled on a diet that cuts out all of my IBS triggers and I feel much better.
Another major trigger is meal frequency and size. If I eat too much at one time I suffer from IBS and exhaustion. I suspect that this may also be a factor for you. So I suggest eating small meals many times throughout the day. This helped me tremendously as well.
Lastly, medication was very effective in managing the issue as well. Imodium and peptobismol can be used in combination pretty frequently. This slows down your digestion and reduces gut inflammation, which I hypothesize is what causes the extreme exhaustion symptom. You can also see a doctor for IBS and they can prescribe you other medication that has a similar function but is perhaps stronger such a viberzi, though Imodium and peptobismol worked well enough for me. When I want to experience a cake or something outside my diet, I take all this medicine preemptively, including lactase if having dairy, and eat a small amount of it, and make sure not to do that too often.
I don't know if any of this will actually apply to your situation, but regardless I sincerely hope you find a solution as I did. I certainly understand how poor health is one of the hardest things to deal with emotionally.
So far I've been met with specialists blaming it all on stress, despite the fact that I'm a remarkably calm person outside the flares(they make me feel abysmal). I'm not able to single out any specific triggers, and at my current level of debilitation I've been unable to make major changes in my diet.
I'll be seeing a hopefully good gastro soon, and if all else fails I'd like to try DIY FMT, but it's all such a horrifying struggle against multiple sources of severe disability with no support.
Its been shown that sleep apnea related brain damage reverses completely within a year of treatment. If your issue is a narrow airway due to a recessed jaw an MMA can be curative. Insurance covers MMA if AHI > 15.
Do you have people around you that can help cover an MMA if you need to self fund? Or people you can borrow money from? Dr Alfaro in Barecelona will do it much cheaper than the US.
I understand the dread. I also saw multiple suicides in the UARS/Sleep apnea communities. I hope you find the strength to continue
My dude, Alfaro charges prices that are vastly out of reach of anyone not made of money, and I'm at a point where making Dr appointments in the first place, nevermind coordinating travel, pushes me to my limits.
I can probably get it done under public healthcare where I live, but I don't know if I can afford orthodontics, even if it's "only" a few thousand bucks over here.
Just wanted to share a cheap suggestion that has helped me with poor breathing due to narrow breathing passages. This was temporary due to bad respiratory virus, but was effective. Nyquil and breath right strips. Probably using NyQuil every night is not a good idea, but could perhaps use on occasion, or some other nasal dilator drug such as asthma medications/ steroids. But the breath right strip can be used all the time, and it really does open up your nasal passages noticably in my experience. Maybe worth a try.
Edit:
More ideas: sleep on your side, when sleep on your back stack multiple pillows to lift your head higher up (seems to help IME).
Depends on what exactly is going on with a given person's airways. Expansion is the best treatment for poor nasal breathing, but if you're got a narrow pharynx going on also, you probably need that MMA.
I won't advise anything. Only you can figure out eventually what's helping you
But the first thing is providing body with essentials.
And these for sure are balanced proteins daily. Especially first meal. And it shouldn't spike insulin = no carbs.
Food naturally balanced without manual mixing is: eggs, meat, fish, dairy
And if there isn't 10-15gram of balanced proteins body doesn't even start using it - because it's not cost effective to start machine fully.
That's why small meals are never working, only wasting body energy.
Start simple and general. it's easy to get lost in details while big picture may show something different
I fixed my histamine troubles with a specific antihistamine bacteria mix probiotic. without drugs. doctors. with the trashy internet and persistence
I didn't do anything to myself because I'm an egoist, I selfishly want to see future, of childish curiousity, I can be sick, half dead, burden to others, in don't care, I want to see cool future and I believe I can fix things, maybe I am slow, but i always get there, step by step, try after try, even if stopping and reversing bad steps.
And I refuse to believe any mental issue is irreversible. I believe we have godly bodies that given a chance can be fixed itself.
We just put inhuman things in it. Or our pregnant mothers did. But nature saw it all and worse.
I appreciate you sharing your story. I had a similar journey over the last couple years because of the pandemic. Looking back now it was definitely an issue at least as far back as early teens.
I used to work out a lot, and very intensely as that was the only thing that made me feel "awake". It wasn't until the lockdowns when I couldn't get to the gym that it got bad enough that I also started my own journey to this diagnosis.
I had started living more in the dream world than the real world and being awake was a daze. I became distant to the world and lost my imagination, memory, and emotion. I was also questioning how I could ever go on with my current job and life.
Thankfully, I also started a sleep apnea treatment (oral appliance, and later CPAP) after many discussions with my doctor. This mostly fixed my condition. The difference is incredible and I don't have the words to describe how it has changed my life.
So I want to say thank you for sharing your story, you're not alone and I hope others see your story and get the help they need.
If you've read this story and suffer any of the symptoms mentioned, I highly recommend doing a sleep study, it's truly life altering.
I used to be known as someone that partied hard. Even at work I was the guy on the technical teams that found all the degenerates on the sales teams to go out with. Then after the hangovers got too much (probably due to sleep apnea), I switched to extreme sports. Snowboarding in high consequence terrain, kitesurfing, motorcycle track riding, dirt biking single track. Anything that took the edge off and similarly made me clear headed
Alcohol and surprisingly even 0% alcohol beer (not sure how much I can attribute to nocebo effect) completely wrecks my sleep. My nasal mucus thickens so much that I can't breathe properly when lying down. And it's not like I'm not drinking water and keeping hydration in check when I drink. I gave up on alcohol completely.
I confirm that exercises do help. Anecdotally last week I woke up with an obstructed nostril. I tried to fix it by washing it abundantly with saline solution, did it a dozen times without much success. Later I went to ride on my road bike and in less than 30s both nostrils were perfectly cleared.
Thank you for this, this is awesome. You shared a long, challenging, and deeply personal experience with candor and empathy. Well done!
I grew up in an agricultural area and everyone had respiratory issues from the massive amounts of pesticide and pollen in the area. I was also allergic to house dust mites. It was bad! I remember being unable to breathe through my nose at all for years, having surgery, and completely changing my experience of life. I've recently noticed that i'm having quite a bit of trouble breathing at night, and those old demons are coming back. Your writeup is inspiring me to do a closer investigation as I have been experiencing very similar issues - brainfog, memory loss, all the above.
Your comments is also on point around the shortcomings of OneMedical-style rotating cast of practitioners rather than the longer term relationship with a caregiver.
I know story first hand about a boy with a strong astma on breathing machine daily from dusty capital.
When mom moved him to my clean region with fresh air he stopped needing it after two weeks.
But even living here can cause health issues because of winter. More exactly burning coal, not being able to wind room before sleep with clean air, sticking in heated house in dry air and washing in hard (?) water with too much calcium and other minerals.
I had allergy to pollen every year counted with a watch. The same week, hospital, nearly choked up to death. I was 7-8yo.
It disappeared itself. but I think I changed my diet as a teenager.
Later discovered histamine sensitivity, the hard way.
Everything eventually comes to our diet not being what it was before inventing farming in natural conditions, our actual diet messing up our natural biom, including already erased majority of bacteria we originally had as mammals and mistakes of our parents impacting our wiring before getting born, especially in pregnancy period (including being born the wrong hole).
Later it's just our body adapting to what it has and coping as it can. The older the more bad accumulates.
Adding new experimental ideas on top of that..
Humanity is not smart, but it surely is persistent at blindly trying things.
It's just one person finds it earlier other later and sometimes have a different kind of luck.
Thanks for sharing this story, it's very encouraging to read. I really resonate with this as I'm currently facing similar struggles and overall just feeling like I'm sinking and zombie-like.
I had an at-home test that was not positive for obstructive sleep apnea so I landed on a 6-month queue for a test at a sleep lab (hello from over in Vancouver).
I've felt really discouraged by that because it's left me back at "I have no idea what's wrong". I snore (occasionally "like a banshee"), always have nasal congestion while sleeping, wake up every night once (or even twice) needing to urinate and with an extremely dry mouth, and no longer remember what a well rested sleep feels like.
Even now, I'm taking an extended time off work and hoping the lack of work stress would increase my sleep quality but to no avail. If anything, because my circumstances are keeping me away from home, my sleep has gotten even worse to the point where I'm consistently lethargic and too tired to do anything most days.
I only very recently learned about sinus obstruction after taking Affrin (for a cold) and realizing just how clear my sinus was compared to mu average day.
Everything you wrote about allergies and other self-experimentation is very helpful for awareness. I also had no idea positional therapy was a thing, which is helpful as I'm a stomach sleeper.
It has certainly given me more to understand and proceed with doctors for.
Get tested for diabetes just in case? Urination and dry mouth are symptoms that I see you mentioned which don't seem to be apnea related. I'm not a doctor.
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.
Becoming disciplined enough to use the CPAP every night was a real struggle for me. Ironically, what ultimately helped me was starting to take modafinil during the day. Taking that as a stimulant in the day gave me enough energy in the day that I could make good decisions about other things that influence my sleep (exercise, sleep discipline). Something of a virtuous circle for me.
Indeed but for completeness CPAPs is not the only available therapy out there nowadays.
Specifically for patients with _positional_ sleep apnea there are wearables (actual medical device not welness) that stop the patient from sleeping on their back, and hence stop the positional obstruction.
These wearables are way less cumbersome and invasive than pressure devices.
It's wonderful that you've made progress on the puzzle you found yourself facing. But in reading your essay, the subtext that comes through more strongly than the medical dilemma is a sense of disorientation, loneliness, and anxiety. Even this comment hints at it in its opening disclaimer.
For all I know, you see family every weekend and have friends over for drinks and games every night, but the story suggests that your inner experience of navigating a deep personal struggle involved a lot of private worry, disappointment, and lack of practical culturally implicit skills like how to develop a relationship with a doctor.
Since you seem to have some momentum in self care at the moment, you might want to consider a deeper look at what's going on for you there. You might find consistent therapy helpful as you do so.
Other than disagreeing with your take on relationships with medical practitioners, this is an excellent, well written comment. There are support groups for the family of cancer patients specifically because health is intertwined with how people live.
Creating some kind of regular time to process this long journey, however that works best into the day to day, may help set the stage for the next act.
Thank you for the comment. There are definitely issues you touched on intertwined with this story, and I don't fully understand them and will be digging deeper with therapy. Something I put off for far too long as I was busy dealing with this
Thanks for sharing this, it rings very true for me.
I've had many of the same symptoms for years, I put mine down to a dust mite allergy. It's the bane of my existence! :D
I'm very interested in your experiences of surgery.
I've often considered this as an alternative to antihistamines or anti-inflammatories like Flixonase. I don't think long term use of either of those is good for anyone. (Antihistamines being linked to dementia and steroids being linked to membrane damage amongst other things).
Anecdotally two things I link with improvements are religiously keeping my teeth clean including flossing to reduce gum inflammation and improving my hydration later in the day. Obviously there's a thin line to not drinking too much water and having that wake you up.
> (Antihistamines being linked to dementia and steroids being linked to membrane damage amongst other things)
Oh, cool. I guess I should stop
I'm severely allergic to dust mites as well. I get weekly allergy shots and while they've had a great effect on itchy eyes, runny nose, extreme stuffiness, and other seasonal allergy symptoms... my nose is still congested almost all the time.
I got a dust mite-proof cover for my mattress, tried vacuuming + cleaning more. No improvement.
I got two different nasal procedures to open my airways. First a turbinate reduction - no benefit. Later "vivair" or something... it was non-surgical, basically "radio" treatment or something. I don't think it makes sense that it was radio waves that burned my flesh since, y'know, that's not how radio waves work. Maybe microwaves or something, but the nurses and doctor couldn't explain it. As you can see, I was desperate enough to try it. Anyway - it didn't help. My nose is still clogged almost all the time. YMMV
Sorry to hear the turbinate reduction didn't work for you, that was actually what I was considering next.
I seem to remember that the dementia thing was to do with long term use of first generation antihistamines (the drowsy kind). I can't quite remember if second generation antihistamines were a problem or not so might be worth check out with a doctor if you're worried.
Thanks for responding. Yeah, I don't use the 1st gen. The drowsiness is a deal breaker, since I'm already on the edge of drowsiness most days. I only use loratadine, and it doesn't do a lot. But I probably don't need to be using it every day anyway, since it doesn't do a lot.
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
Agree on treating allergies first, no reason for turbinate reduction if it is caused by allergy.
I have not had luck find someone good at treating allergies. Do you have suggestions? (SF bay area)
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?
Dr choy is great and spent more time with me than expected. But I could not commute to Palo Alto every week for shots, so I used someone local. Both docs are top notch but Dr choy sent the extra mile
I have narcolepsy and I think sleep disorders as a whole are just generally under-diagnosed. It took me years to finally find a root cause to why I just felt bad all the time.
I have nothing but the highest respect for you in how you went about this and sharing your success with others. Long term, sleep apnea interferes with the glymphatic function; I’ve heard rumors this then correlates to various dementias. Sleep function really deserves more money thrown at it.
Here’s something fun. Do you wonder what biologically was really going on here? Personalized medicine is a when, not an if. There are wild things just around the corner like this:
https://youtu.be/_YOEq7mHsw4
May the odds continue to be in your favor, thanks for sharing.
This is example of blindly overengineering problems easily solved by actually looking for origins of problems first.
Exactly these magical artificial solutions are the problem. Our money is burnt to chase high tech dream stocks instead of basic things that should be obvious to everyone but isn't. Heard about Sinclair?
Like fixing cancer by not prevention of metabolic diseases causing it keeping high quality standards of food in shops, limiting pesticides, GMO, processing of it to minimum feeding animals with what they supposed to eat and planting on soil naturally fertilised and fully mineralised but instead doing direct modifications of genes, these which work perfectly well naturally if given back normal human conditions..
And then looking for solutions to problems caused by (God forbid irreversible) own blind solutions...
as what we observe continuosly in last years after creating global condition unseen in nature... with maybe irreversible impact looking forward
Similar boat but for me it was narcolepsy. Still working on getting the right prescription but it was definitely a feeling I could describe as "relief" to hear that there was a specific physiological cause my constant fatigue. And that sense of overpowering weakness that I was thinking of as being "really, really tired" was actually cataplexy. Just putting a name on it feels like a weight being lifted. Although I'll actually feel better when I land on a practical treatment.
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.
Your understanding is wrong, obesity directly causes sleep apnea.
> There is a linear correlation between obesity and OSA. In obese people, fat deposits in the upper respiratory tract narrow the airway; there is a decrease in muscle activity in this region, leading to hypoxic and apneic episodes, ultimately resulting in sleep apnea.
> 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.)
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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.
I tried this as well as a jaw-advancing device and I still snored like hell. The only thing that worked was the Zyppah (jaw-advancer + tongue stabilizer at the same time) but that made my jaw so sore and also triggered my gag reflex most of the time.
Eventually the snoring simply stopped. Not sure what caused it, but I'm happy.
I'm seeing a jaw specialist right now to see if we can reduce the overbite I've developed from sleeping with a mandibular advancement device nightly for six years.
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.
If you have sleep apnea, no amount of sleep gadgets, good habits, exercise, will help you. You must fix the root cause