23 ms·

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

• sinuhe69 3y ago
  When I read the first lines of the article, “sleep apnea” already jumped to my mind. Good for the author of finding and fixing the root cause of his sleep deprivation. No ways a few hours of sleep could be normal.
• orangepurple 3y ago
  The word iron did not show up a single time in this article. It is extremely important to make sure your iron and ferritin levels are sufficient or you will feel tired and depressed all the time.
  • cj 3y ago
    Do either have a connection to sleep apnea?
    • ccooffee 3y ago
      "Iron deficiency and sleep - A scoping review"[0] did a literature review and found many studies linking Iron Deficiency to poor sleep outcomes for various particular sleep disorders. It summarizes the findings with: > iron investigation and supplementation should be considered in patients presenting with sleep disorders [0] https://pubmed.ncbi.nlm.nih.gov/32224451/ https://pubmed.ncbi.nlm.nih.gov/32224451/
  • quickthrower2 3y ago
    Blood panel was done
    • orangepurple 3y ago
      CBC won't show low ferritin. You can feel awful if your hemoglobin is OK but your ferritin is low.
      • di4na 3y ago
        They should. At least here they do. I know this is how we detected my mom's hemochromatosis.
        • deleted 3y ago
          [deleted]
        • riceart 3y ago
          A CBC is a specific and very common lab test and does not include a ferritin level. It’s a separate test.
      • justsocrateasin 3y ago
        Any doctor worth their salt should and will do this if you come in complaining about fatigue. They did with me. Someone presenting specific symptoms isn't going to get just a CBC.
        • orangepurple 3y ago
          I give a moment of silence to all the people on antidepressants who are actually iron and/or vitamin deficient and don't know it.
      • n8henrie 3y ago
        Interesting! DellaValle DM, Haas JD. Impact of iron depletion without anemia on performance in trained endurance athletes at the beginning of a training season: a study of female collegiate rowers. Int J Sport Nutr Exerc Metab. 2011;21(6):501-6. Accessed April 10, 2023. https://www.qxmd.com/r/22089308 https://www.qxmd.com/r/22089308
• 55555 3y ago
  Okay, serious question: The author of this blog post sleeps with his partner, and then discovered he spent 20 seconds of each minute gasping for breath, 40 times per hour. (Something like ~this). How did his wife not notice and tell him? Now I'm paranoid that I have sleep apnea. What's the cheapest wearable or device that can probably tell you if you have apnea?
  • Broken_Hippo 3y ago
    How did his wife not notice and tell him? You don't really understand how heavily some folk sleep - and you can sleep through quite a bit. Including snoring.
    • UncleEntity 3y ago
      I can sleep through incoming and outgoing artillery fire, .50 cal machine guns and humvees running over land mines (allegedly, they may have been messing with me), people snoring, all kinds of stuff. Someone talking and I’m wide awake.
  • daggersandscars 3y ago
    > or my compassionate and frequently anxious wife, would rouse me with the words, "WAKE UP, YOU'RE NOT BREATHING!" She did notice. The people I have known with sleep apnea were originally alerted by their partners walking them to tell them they’re not breathing. The article mentions the Withings Sleep Analyzer. Is about US$130.
  • haliskerbas 3y ago
    Not a doctor but an audio recording of a night of sleep could help while you wait for a different device.
    • dghughes 3y ago
      Video cameras on everything now and are so cheap and easy plus you could see yourself gasping. The sound may be too low to pick up and video may supplement the recording.
• jutrewag 3y ago
  [flagged]
  • world2vec 3y ago
    In some countries it requires medical prescription so maybe for the author it's not really worth the hassle?
• yosito 3y ago
  > The morale of the story, you need to sometimes tackle your own health and take matters into your own hands The frustrating thing for me is that doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. It's not anti-science to take your health into your own hands. It's anti-outdated-underfunded-medical-systems.
  • toss1 3y ago
    >>doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. Yup, it is. Because like a cargo cult, most of the external signs are similar. The difference is in the depth of knowledge used, the rigor applied to the evidence, whether the person is actively avoiding or seeking confirmation bias, etc. So, yes, much of the time, it is actually anti-science. That said, there is no reason to hide a person's own data from them. Even if statistically, they are more likely to abuse it. The fact that he had to go get a gray-market machine hacked to use open-source to get his own data is unconscionable. It should simply be required that all medical devices have an easy method to provide data to the user/patient, such as a Patient_SDCard_Slot, or Patient_USB_port. Obviously it wouldn't provide access to the internals, but provide a parallel output data stream that they could use or not use as they choose.
    • toss1 3y ago
      Edit, meant to type "it sometimes is", not it is (didn't check my writing, too late to edit)
  • hakunin 3y ago
    > It's not anti-science to take your health into your own hands. It depends on how exactly it was taken into one’s hands right? Can’t really know if it’s pro-science or anti-science until you see what a person is doing. Most people do pretty irrational stuff, based on stories of a doctor in my family.
    • AbrahamParangi 3y ago
• jnwatson 3y ago
  In the US, the author would have had a sleep study done and it would have been diagnosed in a day. Do they not have those in the UK?
  • qwytw 3y ago
    They do. You just have to either pay for one yourself or wait half a year (or maybe way more?) for NHS to provide it.
  • nerdix 3y ago
    Isn't a full sleep study test pretty expensive in the US? I went to a sleep specialist once and the cost of a full overnight polysomnogram was nearly $3000. I opted for a much cheaper at home test from my GP. Showed no signs of sleep apnea but I worry about the accuracy compared to a full study.
    • Smaug123 3y ago
      They're pretty damn expensive in the UK, certainly - around £2500 a couple of years ago in central London. (It would have been much cheaper for me to just buy a CPAP and try it out, than to have a polysomnography, but it's notionally forbidden.)
    • amanj41 3y ago
      I'm in US and took both a home test and overnight polysomnogram. Both were fully covered my by insurance. My current insurance is definitely not top of the line either
  • leviathant 3y ago
    In the US, I went in for a sleep study and had to fight for it. "You're not obese or old" yes but both my parents (admittedly old, but not obese) have CPAPs, and my wife says I stop breathing at night. "Are you sure?" Well, sir, that's why I would like to do a study. I had an overnight sleep study scheduled several weeks later, during which time my insurance provider at work changed, and I had to do the process again, and this time only got a take home kit, and just missed the criteria for getting a CPAP. Years later I went looking for alternate routes, which means paying out of pocket for a CPAP and accessories... But sleeping better and being more healthy.
• fxtentacle 3y ago
  "the National Health System have yet to even send me a letter" That's the crucial point here. Health care failed him, but luckily he was rich enough to privately purchase multiple medical devices just to try it they might help.
  • orzig 3y ago
    You’re not wrong on the facts, but if you’re implying that we should not feel good about this story, I disagree. One crab has managed to climb out of the bucket. The rest of us should celebrate for a minute and then redouble our efforts to get everyone to the same place, leveraging the lessons he’s passed on. Upwards!
    • fxtentacle 3y ago
      Agree. We very much should be happy for him. And thankful that open source granted him access to understanding these machines. And in addition to that, it would be great if we could improve access for people who are less fortunate.
    • goodpoint 3y ago
      There's more to that. Building open medical devices and knowledge in general helps humanity as a whole.
    • arcticfox 3y ago
      Yep. I happened to help another crab and I think it may be the single best thing I’ve ever done. My wife’s family was constantly making fun of my father-in-law for falling asleep during the day, falling out of chairs etc. One day I noticed he was fluttering in and out of sleep while driving me so I asked him if he wanted to try my travel CPAP that night - I have very mild apnea and can get by without it. He tried it and after the first night he was a completely different person, it was almost like someone drugged him up with PEDs. The home remodelers that were working there were jokingly peeved because he started helping them and they said he was going to put them out of work. Just transformative, I feel so good about it.
    • deleted 3y ago
• agrue 3y ago
  Sleep apnea is strange. Good news! We have a diagnosis, sleep apnea. You're bad at sleeping now, the thing everybody has to do all night long every day since birth. The solution is to wear a modern iron lung whenever you want or need to sleep forever. Many times it's because people are overweight but you aren't. Is that really all there is for treatment? No throat exercises or therapeutic sleeping positions? No diets? No botox injections for your uvula or a daily pill to obviate breathing while sleeping?
  • lmohseni 3y ago
    I read a book called Breath by James Nestor, it’s all about the benefits of nose breathing. Anecdotally this has completely fixed my sleep apnea/ snoring/ energy levels/ etc. Highly recommended!
    • EvanKnowles 3y ago
      Wait, people aren't breathing through noses?
      • senectus1 3y ago
        I found that I have to consciously close my mouth and "tell myself" to breath only through my nose. When I do this i sleep better.
        • ghusbands 3y ago
          You sleep better by consciously breathing through your nose at night? Or during the day?
          • LoganDark 3y ago
            Probably by falling asleep with their mouth closed so that they breathe through their nose for the night.
• tablespoon 3y ago
  > Night of the living brain fog dead or how I hacked myself better via open source The use of "hacking" in the title is unfortunate, since it strongly brings to mind software engineers confidently loading up on weird supplements to do stuff like "boost intelligence" without much understanding of what they're doing. This article is very much not that, and is very sensible.
  • PragmaticPulp 3y ago
    The article is more about hacking his medical system so he could move through the established process faster.
  • oefnak 3y ago
    Me it reminds of that guy who DIY genetically modified a virus to cure his lactose intolerance (for a year).
    • LoganDark 3y ago
      > reminds of that guy who DIY genetically modified a virus to cure his lactose intolerance (for a year) That's awesome, have a link?
      • mburee 3y ago
        https://www.youtube.com/watch?v=J3FcbFqSoQY&t=0 https://www.youtube.com/watch?v=J3FcbFqSoQY&t=0
      • Vingdoloras 3y ago
        Not the original video, but a follow-up one by the same guy talking about results and future plans: https://youtu.be/aoczYXJeMY4 https://youtu.be/aoczYXJeMY4
• maxehmookau 3y ago
  How strange that the only way to get one of those devices is via the NHS. Usually if you have to wait too long, or something isn't available in the UK, there's a private medical service more than willing to take your money!
  • decodebytes 3y ago
    OP here. I purchased the first device privately from resmed (one of the main cpap vendors), but the actual one i needed was an ASV and this was refused privately and only available via the NHS. Reading between the lines, I expect the NHS is one of their main customers and had ordered a huge backlog, so they got priority.
    • drpancake 3y ago
      I commented on this above but I think this is because ASV users need to be screened for heart issues first!
    • henearkr 3y ago
      I would love to see an open-source and open-hardware project for an ASV... Moreover it could easily be coupled with the sensors and soft required to work as a sleep analyzer, in order to help diagnose central apnea vs obstructive apnea, etc.
• bitL 3y ago
  Some people seem to have luck by taking 100mg vitamin B1 before sleep for central apnea: https://www.cpaptalk.com/viewtopic/t176555/Found-a-vitamin-that-has-DRASTICALLY-reduced-my-Central-Sleep-Apnea.html https://www.cpaptalk.com/viewtopic/t176555/Found-a-vitamin-t... Given B1 seems to be working similarly to acetazolamide but appears to be much safer, I am wondering if anyone is using it for altitude sickness? Doping up a few grams of thiamine just before climbing?
  • denimnerd42 3y ago
    almost not worth trying for me given how well a low dose of acetazolamide works for everyone I know but would be interesting to know.
• mordae 3y ago
  Here's a story. We lived in a "commie block" and we could hear our neighbor snoring super loudly during summer when we all had our windows open for the night. One night, we heard him repeatedly stop breathing and then gasp for breath. So when I've seen him the next day by the elevator I told him: "Sorry to bother you, but we can hear you snoring" and he has gotten super apologetic. But I continued, "yeah, we are used to it so don't sweat it. The trouble is, you are stopping breathing recently. You may have sleep apnea. Go see a doctor, STAT. You don't want your brain to die off due to a lack of oxygen." He told me in a couple of weeks he's got a CPAP and is working to shed some weight off. In a year he went back to a more normal weight. He also started dating our neighbor. Curse those open windows... :-)
  • notahacker 3y ago
    I remember sharing a room with my snoring grandfather as a kid, and the shortness of breath pauses, which were much, much more disturbing than the snoring itself, especially to a young person who's aware that old people sometimes die in their sleep. Wasn't until a lot later I made the sleep apnea connection (he lived another couple of decades to a grand old age. When the cancer did get him, the neighbours said the cessation of his notoriously loud daytime sneezes should in hindsight have been a giveaway about the change in his general health...)
• xlii 3y ago
  I find it somewhat odd that modern medicine don't screen for stuff like sleep apnea or ADHD (and similar). They're quite frequent (sleep apnea - 17% from the article, ADHD - 5-20% depending on the study) and impact peoples' lives quite severely both on quality and productivity fronts.
  • marcosdumay 3y ago
    Both are expensive to diagnose. ADHD also has a problem in that a wrong diagnostic can harm people.
    • tootie 3y ago
      The new sleep apnea device he used is really simple and easy. I think we'll see it utilized a lot more often.
    • xlii 3y ago
      Diagnose - sure, but screening - I'd argue about that. Withings device mentioned in the article costs around 170$ and probably could be shared beyond few times use. Is it that expensive? ADHD is very visible in certain cases (and still not diagnosed) and probably could be screened on class level with normalized questionnaires. Hand results over to parents and let them decide if they want to pursue diagnosis or not.
• s5300 3y ago
  Dealing with untreated sleep apnea right now & it fucking sucks Breathing properly through your nose when awake & asleep turns out to be really important. I’m incredibly curious on how previous generations knew & the term mouth-breather became a thing, as they were obviously (well, if you’ve never experienced long-term inability to breathe through your nose, maybe it would be hard to understand the severity of the cognitive impact this has) quite right.
• mancerayder 3y ago
  I have a chance of having sleep apnea since my sleep is atrocious and extremely light, but I'm not overweight and I also can't sleep on my back or side, meaning a machine with mask ain't gonna cut it. Thus I've not even bothered. Also I wouldn't fall asleep in a sleep study location (I can't sleep outside of my bed, with any noise, lights, etc)
  • DMell 3y ago
    This is similar to my situation. I am a fit individual that is in the gym five days a week, runs marathons, backcountry skis multiple times a week, etc. and have diagnosed sleep apnea. However, I can't for the life of me get through a single night with the machine to the point where it has sat in a closet for months. I also sleep on my side or stomach so I immediately wake up to the mask blasting air at me due to a seal. The nose pillows didn't work as well.
    • Auracle 3y ago
      Have you tried a mandibular adjustment device? You can get them pretty cheap online. They push your lower jaw forward. The only real downside is that they can screw with your teeth a little.
      • rewgs 3y ago
        I have mild sleep apnea due to TMJ and went through an odyssey trying out a mandibular adjustment device. It absolutely wrecked my jaw, made my TMJ far worse than it was prior to using it. It also did more than "screw with my teeth a little," it quite literally pushed my bottom teeth forward and destroyed my bite. The device was fitted by apparently one of the best docs of their kind in SoCal. And yet, after looking into it, my experience seems quite common. At this point I've just accepted my TMJ and mild sleep apnea. Nothing I've tried has helped at all.
        • mancerayder 3y ago
          I have bruxism myself... What's the link with sleep apnea exactly? The jaw's position pushing the tongue back?
• prakashrj 3y ago
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• mrtweetyhack 3y ago
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• pbourke 3y ago
  Are there no sleep clinics in the UK?
  • deleted 3y ago
    [deleted]
• jimnotgym 3y ago
  I have sleep apnea after covid... and burn out. Cpap was a revelation but not a silver bullet. The link between sleep apnea and weight is a vicious circle. Stop up every night and see if you fancy exercising after a couple of weeks!
• deleted 3y ago
  [deleted]
• b1c1jones 3y ago
  I saw an otolaryngology, got a sleep study, was prescribed a cpap with the study recommended pressure, and I am fine. I suppose I could have wandered the tech desert, but this is my health we are talking about. I have other tasks I am better suited to do than wander through a field I had zero training in. I approach my cardiology issues the same way.
  • ruste 3y ago
    The author is in the UK. They noted that they were on a wait-list just to get tested and likely wouldn't be for a year at least so they decided to take it on themselves.
  • joshuaissac 3y ago
    > but this is my health we are talking about I think that this is the point of the article. In the end, you are responsible for your own health. From the article: > I am in the system for NHS treatment, but things are so bad that I have not even received an inital letter with a date for a test. It would likely take up to year for the NHS to treat me. So he could have just waited, trusting that the professionals will eventually diagnose him and give him the right treatment. But it was his health, so he had a strong incentive to take independent action.
• acyou 3y ago
  Open source is not how we got here. We now reap the benefits of centuries of well organized publicly funded research and private for profit business activities. We should not misunderstand or misconstrue history. What technology and advancement has open source really given us, that isn't just piracy when it comes right down to it? I realize I am asking a selection of would-be pirates. Genuine question. We skim the cream off the top and tend to take all the credit.
  • makerdiety 3y ago
    You're saying open source is nothing but piracy in the long run? Strange. But if this open source pirate subject just translates to open source technology being a parasite feeding off of organized large scale labor like that from a geopolitical country, then any open source failure would invite the possibility of open source being an optional feature of any intellectual culture. Open source is a failed experiment, perhaps? Open source being a failed experiment would definitely make sense if open source is basically the Soviet Union after Joseph Stalin. On the way to its decentralizing disintegration into new derivatives.
• znpy 3y ago
  > I accumulated a laundry list of attempts to try and resolve the situation, including lots of sleep hygiene ‘hacks’. [long list of mumbo-jumbo tik-tok-style “lifehacks”] Anything but seeing a doctor?
  • deleted 3y ago
    [deleted]
• mattgreenrocks 3y ago
  Curious: can the Apple Watch detect this sort of thing?
  • jonhohle 3y ago
    It can detect bad sleep patterns, and modern versions can detect pulse-ox, but not specifically apnea, AFAICT. It is definitely a useful too, and there are cheaper alternatives (I’m using an $80 Garmin) that give “good enough” info for personal tracking, but in my experience, Drs. don’t care about it.
  • ccooffee 3y ago
    According to an Apple support page[0], > With Apple Watch Series 3 or later with watchOS 8, you can measure and track your Respiratory Rate.2 With Track Sleep with Apple Watch turned on, when you wear your Apple Watch to bed, it will automatically measure and record the number of times you breathe in a minute. I assume that this information is enough to warrant "go see a sleep specialist", but possibly not much more than that. There is at least one watchOS app that claims to use the Apple Watch data to detect sleep apnea[1], though it may not be a completely reliable source[2]. With Apple's increasing focus on the health for the Apple Watch, I would not be surprised if future watchOS updates (or future Watch hardware) focus on sleep apnea detection as a flagship feature. [0] https://support.apple.com/en-us/HT211685 https://support.apple.com/en-us/HT211685 [1] https://9to5mac.com/2022/05/10/napbot-sleep-apnea-analysis/ https://9to5mac.com/2022/05/10/napbot-sleep-apnea-analysis/ [2] https://www.reddit.com/r/SleepApnea/comments/vxkkxx/napbot_app_for_apple_watch_now_detects_apneas/ https://www.reddit.com/r/SleepApnea/comments/vxkkxx/napbot_a...
  • btreesOfSpring 3y ago
    For WatchOS, you would start by running the Sleep App[0] and notice that there is an issue with your sleep stages. Next you might move onto an app, like SnoreLab[1] where you record the audio of your sleep each night and can listen back to where you are having sleep interruptions. At that point, you would likely hear your breathing process. Moving onto the Withings Sleep Analyzer[3] (as shown in the article) will fill out your data but by step 2, you will should probably already be setting up an appointment with your doctor for sleep apnea. [0] https://support.apple.com/guide/watch/track-your-sleep-apd830528336/watchos https://support.apple.com/guide/watch/track-your-sleep-apd83... [1] https://www.snorelab.com/ https://www.snorelab.com/ [3] https://www.withings.com/be/en/sleep-analyzer https://www.withings.com/be/en/sleep-analyzer
• jonhohle 3y ago
  I’m going through this right now and it feels like everything Americans have complained about socialized healthcare is now true in the US as well: long wait times to see providers, providers that churn through patients like their doing oil changes, providers that just push you along to the next step in a playbook without considering individual needs. I’ve been dealing with fatigue for about two years and had to preempt a yearly physical to be able to talk to my GP about it in December. That gave me the referral I needed to get a sleep study, which identified moderate apnea. It’s the middle of April and I would have just been getting a provider prescribed auto PAP had it not been for a friend who had an unused one. Like the author, CPAP is doing nothing for me, so next month the specialist will probably recommend another sleep study, followed by several more months of waiting for appointments and DME providers. Meanwhile, my wife found that one of the medicines I had been taking had recent studies indicating effects on sleep. I went from 10-20mins of REM a night to 2-2.5 hours by cutting it out prior to any PAP therapy. It should have been done under Dr. supervision, but I can’t ever see my Dr., so I said screw it, found a typical tapering protocol and did it myself. For shorter term things - sick visits, etc., it is impossible for my wife or me to see anyone at the network of our GP (one of the largest in the state) and have to go to urgent care. The last time my wife wanted an appointment she asked if she could go to another location to get in sooner. They denied the request because of continuity of care. So she went to a minute clinic that is completely unrelated to the network - how does that provide continuity?
  • jonnycomputer 3y ago
    It's been like that in the US like forever. Once you actually have medical problems. The main difference is the whole going bankrupt thing.
    • kick_in_the_dor 3y ago
      I'm a US expat living in London for 1.5y. I find the opposite is true. US healthcare moves much faster and turnaround to getting a new appointment with a specialist is a fraction of the time in the UK (NHS only). My SO had a personal health issue that she attempted to get help for in the UK. She had to wait months for a GP appointment with the NHS, only to be told "let's monitor the issue" instead of actually doing anything. We went home to the US (making an appointment <2w in advance) and we saw a doctor who immediately found the underlying issue and had it fixed. I could go on about the health system in the UK... edit: Ha even the article talks about this! "I am in the system for NHS treatment, but things are so bad that I have not even received an inital letter with a date for a test. It would likely take up to year for the NHS to treat me."
• tru3_power 3y ago
  Wow awesome! I never knew about that home device you could order off of Amazon. Helps you rule out sleep apnea fairly easily!
• Jonovono 3y ago
  > I would have gone to bed dressed in a pink gimp suit, if it meant I might I have got a decent nights kip. This line had me laughing out loud. Amazing article, glad you found what worked for you!
• lunderdog 3y ago
  I had surgery to expand my upper jaw and palate three weeks ago, and the improved ability to breathe during the night and day is absolutley life-changing. I used to wake up multiple times a night with a pounding heart, and could never get a restful sleep. Within a few days after surgery, I could sleep through the night and my blood pressure dropped enough to start weening off my hypertension medication. If somebody is struggling with obstructive sleep apnea, I would suggest consulting with an oral maxillofacial surgeon or otolaryngologist (ENT) to have your jaw and nasal airway examined to see if there's another option besides using a CPAP.
  • diob 3y ago
    Wishing you the best of luck, but when I looked into this 10 or so years ago the long term success rate of surgery seemed dubious to me. I read that scar tissue ends up building up and making the problem worse than before, so it ends up being a solution that works until then. I did end up having turbinate reduction / deviated septum surgery, so at least I can use comfy nasal pillows now. The turbinate reduction definitely destroyed most of my fine sense of smell, which is unfortunate. Wish I'd known that ahead of time. Anyways, sleep apnea sucks. Wish I could fix my anatomy.
    • lunderdog 3y ago
      Thank you, I had not heard of the issue related to scar tissue building up. I will look into that more and ask my doctor when I see them later this week. I knew going into the surgery that it was not a sure thing that it would improve my breathing. The primary reason I had it done was to correct a bad underbite and crossbite that causes me to struggle with eating.
    • nvarsj 3y ago
      > turbinate reduction / deviated septum surgery I had this too, and it did nothing at all for me - except I now have a permanently numb spot on the top of my nose. Surgeries are a massive source of profit in the US. I'd recommend getting multiple medical opinions (preferably from the surgeons who don't own multiple yachts) before doing any kind of surgery.
• elkos 3y ago
  I'm a sleep technologist by trauning and profession for the last 18+. I wish all our patients were so much aware about their conditions and our doctors had the opportunity to spend enough time with those that would.
  • aszantu 3y ago
    do you know, by any chance, about the connection between eating vegetables green and onions seem to trigger sleeplessness? I think it's a gut issue, but I can't find any doctor that knew this yet
    • acomar 3y ago
      might be FODMAP sensitivity.
    • elkos 3y ago
      Although this isn't a proper setting to provide consultation and I have to remind you that a trained physician in sleep medicine in a sleep laboratory setting could be more specific on answerimg your question, here are my thoughts. Are there any signs of gastroesophageal reflux? Like burping, or feeling hearburn, maybe even non-cardial chest pain? If so, I would suggest consulting with a gastroenterologist before visiting a sleep laboratory. GERD (gastroesophageal reflux disease) is often associated with late sleep on-set phenomena and with fragmented sleep circle pattern due to central apneas taking place when the acidic reflux enters the esophagus. If you already have ben checked by a gastroenterologist (and/or are under treatment) I would suggest visiting a sleep laboratory. They would perform a sleep study and will be able to better assess your sleep patterns.
      • ir123 3y ago
        what could the gastroenterologist possibly do to help in this case? i do have GERD and fragmented sleep, after having gone to multiple gastroenterologists, i still haven't got help for this particular issue. any suggestions? it would massively help me.
• aszantu 3y ago
  For me, green vegetables seem to trigger nervousness and sleeplessness, when I still ate them, I'd wake up at night and think someone is in my room to murder me. I'd get up and wander through my flat, go pee, and sometimes it took like 3-10 Minutes until the feeling of somebody being there would go away. Been on an elimination diet and trying around for 5 years now, there seem to be some pointers towards SIBO, but I haven't managed to fast long enough to do the test yet. When I eat the wrong thing, it usually takes 3-4 days for any effects to show. Would make sense if it's fermentation or rot in the intestines that's triggering this. Hope you'll get well soon!
  • swah 3y ago
    If it takes 4 days to show, I would never be able to associate with my eating habits :(
• zackmorris 3y ago
  There's going to be a lot of variation between people, so I'll just project my experience with this: * Mild sleep apnea, ~15 events per hour, undiagnosed until after my severe burnout in the spring of 2019 * Breathe Right strips brought me back to life in just a day or two (no affiliation) * Lightly taping my mouth at night with 1/4" surgical tape (or 1/2 ripped down the center) about 2" long in an X shape (to prevent stretching the philtrum) basically cured me, be sure to do this with a relaxed expression so that the mouth can be opened easily in an emergency to breathe again * Problem was due to slippage in jaw joint causing misaligned midline, causing my jaw to fall open and tongue to fall towards throat * Treatment with an Advanced Lightwire Functional (ALF) dental appliance fixed jaw alignment over the course of 9-18 months * I believe that pre-2000s orthodontics and the quest to flatten faces with headgear at too young an age is largely responsible for the outbreak of sleep apnea * Oral appliances for sleep apnea advance the jaw forward (the opposite action of headgear) and I would wager probably often would work better than CPAP * Invisalign and other aligners (no affiliation) are supposedly working on adding clasps to keep the jaw closed during sleep, and I plan to follow up on this but have been too busy * Sleep apnea coincided with a breakdown of the gut for me, and I developed food sensitivities to nearly everything I was eating, lingering today with dairy, grains, some legumes and nightshades * My joint pain went away when I quit eating the foods I was sensitive to, so I wonder if sleep apnea -> food sensitivities -> autoimmune diseases like allergies and even arthritis? * A thick neck increases the odds of getting sleep apnea, If you work out or are overweight, you probably have it (neck is the same size as biceps) * Adding a 1-2" piece of foam under my pillow inside the pillowcase also helps by keeping the spine in a neutral alignment, since nearly all pillows are too thin for side sleepers * I'm hoping to be able to sleep on my back after getting a nighttime appliance to hold my jaw and tongue in place * Tongue posture exercises are key, find an Orofacial Myofunctional Therapy doctor online (they teach remotely) perhaps best to start with a local Temporomandibular Joint Dysfunction (TMJ) doctor and get a referral * Force feeding water by drinking a glass after using the restroom, upon waking and before bed helps greatly as well, perhaps by thinning the blood so the heart and lungs don't have to work so hard After fixing the physical causes of chronic fatigue, I feel better, but still start from a place of 0 energy and motivation after a lifetime of negative reinforcement and rarely having a win. The only thing that works for me is to stop all internal monologue and observe life passing as sort of a waking meditative practice as I task and adult, to positively reinforce gratitude. I also discovered that the anxiety from ADHD symptoms (I'm still undiagnosed but check the boxes) feels the same as quitting smoking, and the prolonged agony of it is greatly exacerbated by the increased cortisol load of sleep apnea and work stress. I think about mental health now the same way as weight training, where there is a period of stimulus, deficit, overcompensation, then long slow decline if the stimulus is continued without rest/recovery. Now I consciously monitor my cognitive load, so rather than redlining for 8 hours straight, I sprint for 20 minutes and take a short rest, which is basically the Pomodoro method. I also try to get 20 minutes of downtime in each day, ideally as meditation, and have told everyone that Saturday is my me-day for active recovery, to do inner-child work for my survival. I have started to explore other realities like the kind that come while playing music, and have begun to experience the sensation of motivation again, which feels like a blessing.
• rolisz 3y ago
  Anyone got any other experiences with things that cause brain fog? I don't think I have sleep apnea (my wife often falls asleep after I do and she doesn't report any kind of weird breathing issues for me, nor snoring). But even though I generally sleep 8 hours a night, I am quite tired during the day and I often have trouble focusing. At night, I fall asleep like a log and I don't wake up during the night.
  • swah 3y ago
    Same. Also not super tired, can go through with coffee, etc. But I don't feel rested when I wake up, almost never. [1] The things I never tried: giving up caffeine completely, eliminating sugar completely, eliminating carbs completely, losing 20 kgs (I'm a bit overweight like BMI 27). What didn't work: Ritalin, Venvanse, Modafinil... [1] I feel like it could just be "stress" ie don't know how to relax and let go (beer does work but I wake up worse). I cling to small stuff like "will my wife remember to pick up the clothes later?" (making up a real example that has zero bad effects if it doesn't happen today)
    • alx__ 3y ago
      Unfortunately, there are many things it could be. Doctors are only so helpful (and most are even less so) Here's a list of things I tried that sorta helped with my tiredness spells. Recommend doing any of these changes separately: - Sugar fast for 4 weeks (helps reset your cravings) - Switched from coffee to green tea - Reduced caffeine intake to one a day or 3x a week - Acupuncture - 15 min walks or bike ride every day - Omega 3 oils - Higher intake of minerals I was deficient in (eating more green vegetables) (spoiler alert, I had undiagnosed ADHD which contributed to my high anxiety, which gave me waves of alert/exhausted)
      • rolisz 3y ago
        Sugar fast.... Seems impossible. Most I've done is one week and it was absolutely horrible. I was always hungry, despite eating a lot.
• hellohihello135 3y ago
  CPAP works great for many people who have severe sleep apnea. It’s much more difficult to help people who have mild OSA / UARS. They don’t benefit from CPAP to the same degree.
  • elric 3y ago
    Do you want to elaborate on that? AFAIK CPAP absolutely benefits people with mild OSA or UARS, so I'm not sure what you mean?
• captnFwiffo 3y ago
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• ericmcer 3y ago
  Anyone want to join me in making a dating app for people who need CPAP machines to sleep? I am semi-serious haha
• theonething 3y ago
  > This meant I would have no way of seeing results for myself, instead I would to pay out £150 each time to get the consultant to analyse for me. I think I would have just paid the money (at least for a few months to see if I'm getting my money's worth) rather than going through all that trouble of trying out different machines, etc. That's just me though. I realize some people are more comfortable with taking matters into their own hands and enjoy getting into the nitty gritty. I'm also the kind of person who would much rather hire a trusted plumber, mechanic, etc to just get it done than muck about it myself.
• musha68k 3y ago
  “The John Snow Project has set out some of the growing body of evidence that suggests COVID-19 is having serious adverse long-term impacts on human health. This evidence is, however, being subjected to the same ‘doubt as product’ approach that was successfully deployed by the tobacco lobby to slow the introduction of public health measures to protect people from the harms of smoking, and the underlying economic incentive is similar to the rationale of the cigarette companies. While attendees at the World Economic Forum in Davos had to be vaccinated, wear masks, undergo regular COVID-19 tests, and used advanced air ventilation, filtration and treatment to reduce their risk of infection, the costs of such protocols to protect the general public are widely viewed as prohibitively expensive.” https://johnsnowproject.org/insights/merchants-of-doubt/ https://johnsnowproject.org/insights/merchants-of-doubt/
• khazhoux 3y ago
  I sleep with a short silicone tube jammed into each nostril, and I highly recommend it to everyone!! I get what feels like twice the amount of air, with zero effort. It was very uncomfortable the first couple of nights, but now I don’t even feel it, and I now always use them to sleep. https://a.co/d/18eLtdw https://a.co/d/18eLtdw
  • tiku 3y ago
    How do you keep them in? I have tried them but they tend to fall out very quick. My nose gets moist and they slip out..
    • khazhoux 3y ago
      The pack I linked has different sizes, so I picked the biggest one that wasn't uncomfortable. It sometimes slips out but usually only on one side so if I wake up I jam it back in. These nasal vents are my weirdest-most-effective life tip :-) The idea seems so uncomfortable, but I sleep so much better when the air flows so easily.
• elric 3y ago
  A couple of things: 1. Sleeprider deserves to be raised to knighthood or some kind of medal or something. The man is a hero and a living legend, who has helped untold number of people with their apnea. I'm not kidding. Thank you, Sleeprider, for all that you do. 2. OP really should pursue the NHS route. Maybe it'll take a while, but once the gears are in motion he'll at least get access to a steady supply of ASV machines, for free. There will also be a paper trail of effective treatment, which might be important for insurance purposes further down the line (mortgages or life insurance or whatever which might require a medical checkup). 3. If you have a bed partner who tells you that you're not breathing, or that you snore loudly: get tested and get treated. Don't shrug it off. Deal with it. The sooner, the better. 4. CPAP doesn't have to be unsexy. I really don't understand why virtually all CPAP pictures include full-face masks with bulky headgear. The vast majority of CPAP users can get by with nasal pillows with minimalist headgear. Using those pictures instead would reduce the anxiety people feel about getting on CPAP. [1] 5. AHI is a largely meaningless number. "Mild" apnea can be just as devastating as "severe" apnea. AHI only looks at events/hour, it doesn't look at when the events occur (e.g. during REM), how many are back-to-back, and how much your sleep is actually disrupted. You can have a "normal" AHI of 5 and still get absolutely trash sleep because of un(der)treated sleep apnea. [1] Nasal pillow mask: https://www.resmed.com.au/healthcare-professionals/products/masks/airfit-p10 https://www.resmed.com.au/healthcare-professionals/products/...
  • anotherevan 3y ago
    I used the Swift FX for a long time, which is the predecessor to Airfit P10. Unfortunately they do not make them any more, and for some reason the P10 feels like it is putting my septum in a vice, it pinches it so hard. I can use a little bit of tape to cushion it, but it is a pain and still not the greatest. I've ended up going with the N30i which is okay unless I'm a little congested as it kind of pinches my nostrils shut slightly, in which case I use the P30i fitting with the aforementioned tape. I miss the FX.
  • dantheman0207 3y ago
    Any references or links on AHI and bad sleep? Seems like that is the gold standard for measuring severity of sleep apnea but I haven’t found it a very good measure for my own experiences.
• tiku 3y ago
  Why are CPAP machines still so expensive. I saw a teardown of one, it was not that special. Just lots of foam.. (that needs to stay in place haha).
• ThinkBeat 3y ago
  > The morale of the story, you need to sometimes tackle your own health and take matters into your own hands I am not a doctor, nor am I a lawyer. This is, in general, horrible, and dangerous advice. The problem being how to know if this is one of those times. I am happy it worked for sure. But embracing the idea might well kill people.
  • telchior 3y ago
    A recent opinion I saw from a doctor that made sense to me was: the reason they tell people to absolutely not do a lot of things is because there is a certain percentage of people who aren't competent to do anything on their own. The example given was Q-tips: we all know the advice that you shouldn't put them in your ears... even though that's literally what they're designed for. The doctor's explanation was that something like 10% of people actually will burst their own eardrums with a Q-tip, so you advise 100% not to use it to avert the harm to that minority. (If anyone knows where I saw this feel free to say; I can't recall.) In general, if someone's reason for tackling their own health is because doctors (including specialists) have failed to help, I don't see why or how you'd argue against that. Even if you're bursting your own eardrums with cotton swabs, at some point you've got to do something.
• drivers99 3y ago
  This tracks with what I have. Still waiting to obtain my ASV (the second machine he tried; I also have central and obstructive sleep apnea). I had a home sleep study, then a sleep study with a CPAP, then another sleep study with an ASV the following week. Been waiting 6 weeks since then for a call back from the sleep clinic to actually get the ASV. I tried calling them after 2 weeks and they said I had to wait for them to call me which takes 2 to 4 weeks (it's been 6; I'll call them tomorrow). I actually had a a disnosis and a CPAP two decades ago but I could never sleep with it. I did exactly what he said he did: throw the mask across the room. Since I made myself stick with it in the sleep study thanks to his breathing tips (and not really having an option), I'm sure I can sleep with it now. Also the ASV and the masks available now seem to work a lot better.
• netman21 3y ago
  Why not look at the underlying cause? I was diagnosed with sleep apnea when I was 50. An oral surgeon wanted to carve out my tonsils and uvula. I changed my diet and began exercising. Lost 50 pounds. My sleep apnea went away and I no longer even snore. The downside of getting diagnosed is my life insurance company dropped me.
  • Jeff_Brown 3y ago
    > Why not look at the underlying cause? Agreed in general, but in this case that's exactly the story. He discovered his apnea is cognitive ("central"), not due to his throat geometry. If we're ever able to figure out and solve the root causes of cognitive problems like that, it will be amazing, and we should, but I don't think we're there yet.
  • Jeff_Brown 3y ago
    > my life insurance company dropped me That ought to be illegal. Could you get re-tested, certified healthy, and restore your insurance?
  • decodebytes 3y ago
    > I changed my diet and began exercising. Lost 50 pounds. My sleep apnea went away and I no longer even snore. That's because you have OSA (obstructive sleep apnea). I (OP) have central sleep apnea, there is no obstruction, its related to the nervous system. I am already very lean (I run ultra marathons as a hobby).
• henearkr 3y ago
  It would be interesting to find out the root cause of this central apnea. Maybe that's the only risk of short-circuiting the medical establishment, that now the author is satisfied with the solution he found for the central apnea which is one symptom, without being concerned with solving its cause (that could have other consequences)?
• pengaru 3y ago
  If you share a bed with someone you don't need any of this tech b.s. to know you're choking yourself awake dozens of times an hour. Listen to the people you actually share a home with if they inform you you're not sleeping well (and are probably interfering with their sleep too). - Someone who grew up in an utterly dysfunctional household in the sleep quality department. Denial so deep, unreliable "science" would be abused as "proof" of there not being a problem. ** hearing loss is another one; if your hearing has become so bad you mishear much of what your family is saying to you... esp. with a bias for the negative/combativeness, often promoted by consistent lack of sleep (surprise!), get an effing hearing aid already. You're destroying your relationships with your family.
• JoeAltmaier 3y ago
  Medicine according to averages (almost all practicing medicine) may be wildly inappropriate for some. Not usually; that's why averages are sensible to use. But if it isn't working for you, time to try something else.
• moremetadata 3y ago
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• graffix 3y ago
  Three sentences in, it was obviously sleep apnea. Guess the author was going for dramatic irony. I'm curious why he didn't do a cursory Internet search for his symptoms.
• deleted 3y ago
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• ropable 3y ago
  It's interesting, but being even casually interested in strength training and muscular hypertrophy means that I read as far as the second paragraph and thought "It's probably sleep apnea". It's a relatively common issue in larger individuals, including those carrying a lot of muscle. Probably better than half the heavyweight powerlifters/strongman athletes that I know use a CPAP.