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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 u

• 2devnull 4y ago
  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.
• iForgotMyPW 4y ago
  do you think the under-diagnosing is because of work schedules? dont you have to do a sleep study to get diagnosed?
  • Wagthesam 4y ago
    I have some ideas for under-diagnosis: 1) Reluctance to seek treatment for something that can be still tolerated 2) Incorrect assumption that sleep apnea only affects overweight people that snore by a large portion of the medical community 3) Lack of connection between poor sleep and symptoms. By the time you experience symptoms, you've probably had years of progressively poor sleep so its hard to connect A=>B 4) Doctors through their training are ground to the bone and have to sleep 2-3 hours during their residency. I think there is some innate resistance to the idea that sleep is important in the general medical field 5) Lack of communication between specialties. See a therapist / psych person and they won't know sleep. See a allergist and they won't know sleep. See a sleep doctor and they won't give ENT or allergy advice. Etc. Yes you need medical care to get diagnosis and treat. But its a multifaceted illness, you need a team of specialists and doctors treating you in the different aspects.
• deleted 4y ago
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• hindsightbias 4y ago
  While I sympathize > If you have sleep apnea, no amount of sleep gadgets, good habits, will help you Is a blatant lie. A CPAP works for millions, including me.
  • Wagthesam 4y ago
    Sorry I meant sleep gadgets like cooling pads, not referring to medical devices
    • scrozart 4y ago
      I recommend editing your post to clarify.
    • DoingIsLearning 4y ago
      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.
  • brundolf 4y ago
    Also- sleep apnea can be exacerbated by weight, so losing weight ("good habits") can actually help with the root cause
  • rayval 4y ago
    CPAP for me was life-changing. I had sleep apnea when I was young, skinny and sporty. Then I got old, fat and sedentary and of course it got worse. I was falling asleep while driving. I tried a CPAP machine and could not stand it for more than 10 minutes. However my apnea got worse so that I actually did not want to fall sleep because I did not want to wake up choking and gasping for breath. Literally a nightmare. So I forced myself to stick with the CPAP the whole night through and woke up refreshed and alert. I cannot live without it.
    • 4y ago
• toomuchtodo 4y ago
  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.
  • wahnfrieden 4y ago
    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
    • kortilla 4y ago
      How is an 8 hour a day shift incompatible with healthy sleep?
      • Broken_Hippo 4y ago
        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.
      • wahnfrieden 4y ago
        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).
• boppo1 4y ago
  But I don't wanna wear a machine! What will I tell lady friends from the bar?
  • satvikpendem 4y ago
    There are also silicone devices which keep your tongue out of your airway by keeping it pulled outside. Studies show they work almost as well as a machine yet are much less likely to be rejected by users as opposed to a CPAP. Tongue stabilizing devices: https://www.verywellhealth.com/tongue-stabilizing-device-for-treating-sleep-apnea-3015243 https://www.verywellhealth.com/tongue-stabilizing-device-for...
    • porphyra 4y ago
      These work decently but can really mess up your teeth by causing you to develop an open bite.
      • disillusioned1 4y ago
        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.
    • icelancer 4y ago
      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.
    • euroderf 4y ago
      The jaw thing worked fine for me. Minimally intrusive. OTOH the CPAP was intolerable.
• njoubert 4y ago
  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.
  • Ebree 4y ago
    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.
• AmericanChopper 4y ago
  > You must fix the root cause The main cause of sleep apnea is obesity, which ruins your health by just about every other metric you could measure as well. It’s good advice to address sleep apnea, but you’d have to dig a little deeper to get to the root cause (in most cases).
  • Wagthesam 4y ago
    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.
    • pushedx 4y ago
      You did cover this in your article : )
  • iSnow 4y ago
    It's both in the submission and in the Wikipedia article about UARS: "A typical UARS patient is not obese"
  • theonemind 4y ago
    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.
    • AmericanChopper 4y ago
      Your understanding is wrong, obesity directly causes sleep apnea. > There is a linear correlation between obesity and OSA. In obese people, fat deposits in the upper respiratory tract narrow the airway; there is a decrease in muscle activity in this region, leading to hypoxic and apneic episodes, ultimately resulting in sleep apnea. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5836788/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5836788/
• RangerScience 4y ago
  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)
  • sva_ 4y ago
    Sounds like dust mite allergy.
• swatcoder 4y ago
  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.
  • modestmc 4y ago
    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.
  • Wagthesam 4y ago
    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
• modestmc 4y ago
  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 https://youtu.be/_YOEq7mHsw4 May the odds continue to be in your favor, thanks for sharing.
  • Ebree 4y ago
    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
• bboygravity 4y ago
  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.
  • rubicon33 4y ago
    Can I ask what symptoms you had as a skinny / sporty individual with sleep apnea?
    • diob 4y ago
      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).
      • saiya-jin 4y ago
        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.
• sweetsocks21 4y ago
  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.
  • Wagthesam 4y ago
    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
    • lobocinza 4y ago
      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.
• PragmaticPulp 4y ago
  > 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.
  • mola 4y ago
    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.
    • carlosjobim 4y ago
      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.
    • Ebree 4y ago
      Nowadays I trust YT more than any doctor around. I find doctors on YT more credible actually. Because they actually serve their viewers, actually addressing their particular conditions, explaing in details. As well as those who fixed their own problems after long struggle. When you watch enough (this mean enough to make you feel older) to understand who you watch, compare opposite views enough and didn't stick to any pharma fakes you find knowledge worth more than efforts put. And later you actually learn reading technical research yourself and differentiating epidemiological crap from actual sound knowledge. If you even aren't sure if you get it completely ( and you obviously should not be sure) thats your starting point to find people (it's plural) who actually understand it. That's how you scale up your way to truth. Or to a cult if you stop too early, you probably shouldn't ever stop, we learn whole life. All for free, except your time. That's the world we live in now. What a beautiful world it would be without all imposed intermediaries payed for wasting our time and keeping us sick. But you learn, so you save on drugs, funding incompetent "experts" and probably premature death. And then you save your family and get mentally and physically healthier children (except if you stop at becoming vegan, then it's opposite of that, and probably you end up in hell, for sure should)
• legojoey17 4y ago
  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.
  • nick123567 4y ago
    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.
    • david-gpu 4y ago
      Waking up several times every night and going to pee is a very common symptom of sleep apnea, I was told by my sleep doctor. Dry mouth happens when you breathe through your mouth at night, which is also common in sleep apnea patients.
• Llamamoe 4y ago
  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.
  • yesseri 4y ago
    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?
    • Llamamoe 4y ago
      It makes me sad too, but it just is what it is. I've had individual days of the sun shining through the clouds, but in the end, the trajectory of my life is always downwards. It doesn't matter what I tried. I don't have enough executive function to stick to it. For every win, I fail two other things. It's a thankless, Sisyphean struggle just to survive from one day to the next. I wish I could catch a break, but my other problem is horrifying, debilitating, day-long fatigue after eating nontrivial amounts of anything at all. No specific triggers, it's either starve myself or feel so horrible I can't even read/watch/game to distract myself. It's just too much on top of abysmal sleep.
      • bhhayuwhabd 4y ago
• amoss 4y ago
  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.
• TinkersW 4y ago
  Thanks for posting this, I've had similiar sleeping issues for years, I'm going to try out some of what you posted and see if it helps.
• PudgyWudge200 4y ago
  My father had an utterly torrid time just getting a diagnosis. Sleep apnea caused him so much hassle/torment over the years.
• Lio 4y ago
  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.
  • soiler 4y ago
    > (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
    • Lio 4y ago
      Sorry to hear the turbinate reduction didn't work for you, that was actually what I was considering next. I seem to remember that the dementia thing was to do with long term use of first generation antihistamines (the drowsy kind). I can't quite remember if second generation antihistamines were a problem or not so might be worth check out with a doctor if you're worried. https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667 https://www.health.harvard.edu/blog/common-anticholinergic-d...
• oarfish 4y ago
  > 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.
  • agloe_dreams 4y ago
    Correct. Obesity is the leading cause in the US. A vast amount of anyone overweight in the US have sleep apnea, diagnosed or not.
    • crypot 4y ago
      You are asking for the weightist police to show up.
      • agloe_dreams 4y ago
        Doc, that's heavy.
  • elric 4y ago
    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.
• tootie 4y ago
  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.
• captainkrtek 4y ago
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3313633/#:~:text=What%20This%20Study%20Adds%3A,4%20and%207%20years%2C%20respectively https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3313633/#:~:tex... Interesting study on the affects of sleep breathing disorders in young people as they age and subsequent behavioral problems.
• tinyhouse 4y ago
  Thanks for sharing. Are you still taking any meds for nasal issues on a daily basis?
  • Wagthesam 4y ago
    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
• anonymousnotme 4y ago
  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.
  • Wagthesam 4y ago
    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
    • anonymousnotme 4y ago
      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)
• broguinn 4y ago
  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/ 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.
  • sriacha 4y ago
    Do you have any results from the device?
• zamnos 4y ago
  How do you alleviate sleep apnea, if not a sleep gadget (commonly known as a CPAP machine)?
  • Wagthesam 4y ago
    sorry, I was not clear. I did not mean medical devices when I said sleep gadget
• ricksunny 4y ago
  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.
• chubot 4y ago
  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.
• Wagthesam 4y ago
  One detail to add that I think was missing. My message is you need to own your diagnosis and treatment. But much of the work has to be done by doctors in partnership. These doctors do not have time to direct your treatment outside their specialities, so you need to own the entire process. I had a team of specialists: - Sleep: Dr Sinha (primary), AXG Sleep Diagnostics (for psg), Lofta, and Night Owl - ENT: Dr. Gerald Kangelaris (nasal surgery), Dr Andrew H. Murr (consult) - Allergist: Dr Opal Gupta (primary) and Dr Carmen Choy (amazing doctor! consult) - Gastroenterologist: (upper gi endoscopy), unnamed as I dont recommend - Sleep apnea surgical expert: Dr Kasey Li (triple board certified, best in the world) - Primary care (One Medical)
  • anonymousnotme 4y ago
    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?
    • Wagthesam 4y ago
      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
• mbrochh 4y ago
  Isn't the root cause usually obesity? So good habits and exercise may actually fix it.
• pareidolia 4y ago
  Fellow UARS survivor here. Some notes: * My symptoms at the nadir were (all resolved with self-administered xPAP): chronic fatigue; chronic pain (skeletal muscles were all like bricks); insomnia throughout the night every night; tinnitus; reflux; chronic anxiety; all sorts of cognitive problems with memory, concentration and executive function. * You describe CPAP rejection as something specific to UARS. It really is not, many people with "plain OSA" reject CPAP. For some people SDB causes intense anxiety, others get a bit numb. I guess CPAP is doable for the numb population. Obviously having resistance imposed on your breathing while being in Fight or Flight mode constantly is a big no-no. I experienced this myself, CPAP gave me back to back anxiety attacks. Describe this to doctors, and they will gaslight you. Their talk is cheap, they don't have to sleep like that. Fortunately my first device was a BiPAP (by total coincidence) and turning the BiPAP mode on was like turning a key and opening a door. I went to sleep instantly and we became best friends :) Barry Krakow MD is a rare exception. He says the following in his article [0] > From our perspective, reliance on CPAP in a sizeable proportion of OSA/UARS patients violates the dictum, primum non nocere. Accordingly, 15 years ago we ceased use of CPAP and switched all patients to bilevel modes. * Joseph Borelli MD, an adult UARS survivor describes his experiences in a video from the American Sleep Apnea Association. [1] * In my experience nasal congestion can also be caused by the SDB. The Bilevel breathing assistance compensated for my nasal resistance at the beginning, and after a while my nose just opened up. I haven't had any trouble with it since, also while performing strenuous activity and sports. I never had anything done to my nose, let alone surgery. * It's very hard to know when you are fully treated, with any intervention if there is no hard data. I started with BiPAP, and for 3 years I was adjusting my pressure every 3-4 months and gained improvement. But I was never sure that I had reached the ceiling. I did have some regular "worse days" that could be blamed on residual breathing issues. The DSX900 AutoSV records every individual breath on its SD card, so I can verify that it is achieving total flow normalization. [3] * Around october 2020 I had some discussions, giving input to the author of this article [2] and I became sure that I had to try ASV at some point to try and achieve complete "flow normalization" which Barry Krakow MD describes in a webinar [3]. Finally I in january 2021 I had the opportunity to try a DSX900 AutoSV and copy my Bilevel settings onto it with some headroom for the ASV algorithm to work. It did turn out that I had a lot to gain cognitively, my concentration, memory and executive function became much better, particularly reading and studying "hard" text became much easier and "transparent," i.e. no more clinging to the lines of text. So this is a warning, while any relief from the most dire symptoms is good, I consider years lived with inadequate treatment to be years wasted in a sense. Of couse the 15 years I went completely untreated as a young teen going through school and university as a tired, neurotic wreck I will never get back. * Mouth taping probably works because it keeps the lower jaw stabilized. It tends to drop and then fall back. A soft cervical collar would probably also work. My current mask (F30i) hooks under my lower lip and that probably also helps. * I use an ultrafine allergy filter in my machine and it still does a lot of work for me, so allergies cannot be considered the main cause. In my case it's facial anatomy such as retrognathia, large tongue, Mallampati class IV. * I was gaslighted by doctors for 3 years. I was finally diagnosed with UARS (3rd PSG with Pes this time) in october 2020 but no treatment was offered as "there was no protocol." I had to do everything myself. * Toughing it out isn't sustainable, my final crash was in 2017. [0] https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(19)30206-8/fulltext https://www.thelancet.com/journals/eclinm/article/PIIS2589-5... [1] https://www.youtube.com/watch?v=zbdMY_qd7-s https://www.youtube.com/watch?v=zbdMY_qd7-s [2] https://web.archive.org/web/20211006015015/https://sleepbreathe.org/asv-and-bilevel-therapy-for-sdb-with-ifl/ https://web.archive.org/web/20211006015015/https://sleepbrea... [3] https://www.youtube.com/watch?t=1321&v=Syv7YcHbTCI https://www.youtube.com/watch?t=1321&v=Syv7YcHbTCI
• friskydingo77 4y ago
  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.
• Ebree 4y ago
  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.