[HN Gopher] Night of the living brain fog dead or how I hacked m... ___________________________________________________________________ Night of the living brain fog dead or how I hacked myself better via open source Author : decodebytes Score : 450 points Date : 2023-04-10 11:10 UTC (11 hours ago) (HTM) web link (decodebytes.substack.com) (TXT) w3m dump (decodebytes.substack.com) | pengaru wrote: | 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. | mrtweetyhack wrote: | [dead] | s5300 wrote: | 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. | b1c1jones wrote: | 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. | joshuaissac wrote: | > 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. | ruste wrote: | 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. | agrue wrote: | 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? | redundantly wrote: | > The solution is to wear a modern iron lung whenever you want | or need to sleep forever | | Calling it an iron lung is extremely disingenuous. | | The Iron Lung uses negative pressure and had to be used 24x7 to | keep the patient alive because their lungs weren't able work on | their own. They had no mobility and were confined to a bed for | the rest of their lives. | | CPAP / APAP machines use positive pressure and only assist with | breathing while asleep, when apnea events occur. It does not | replace lung functionality, it only assists. | | Yeah, having to use a CPAP/APAP at night can be bothersome, | some people have a very hard time adjusting to using one. | However, comparing it to using an iron lung is ridiculous. | agrue wrote: | > The solution is to wear a modern iron lung whenever you | want or need to sleep forever | | Iron lung use was not 24/7 for all patients. Saying so might | be considered by some to be extremely disingenuous or even | ridiculous. | | https://www.npr.org/2021/10/25/1047691984/decades-after- | poli... | sillysaurusx wrote: | It's hyperbole, but the comparison isn't without some merit. | My grandma stopped using it because it's troublesome, and | I've heard many people voice the same. Getting into an iron | lung each night would also be ... troublesome. | redundantly wrote: | You don't climb in and out of an iron lung. If you're using | one you're in it 24x7. | bethekind wrote: | Iirc iron lungs are better than CPAP, as the positive | pressure caused by CPAP, if too big can stress the lungs. | | Iron lungs use negative pressure so they don't suffer | from this | agrue wrote: | Iron lung use was not 24x7 for all patients. Saying so | might be considered by some to be extremely disingenuous | or even ridiculous. | | https://www.npr.org/2021/10/25/1047691984/decades-after- | poli... | mabbo wrote: | Diagnosed at 24 with sleep apnea. I tried a bunch of things. | | What worked for me was regular cardio exercise and daily doses | of high absorption magnesium. | | The magnesium is absolutely unproven pseudoscience nonsense | that can't possibly work. But if I stop taking it my sleep | suffers massively. | scruple wrote: | When I'm deep into half-marathon+ training, I (personally, | not scientifically) observe that I become zinc and magnesium | deficient. I simply will not recover, I will feel extremely | fatigued, etc. There's a lot of controversy over this, but I | more or less have to take ZMA to sleep at night, to remain | asleep at night, and to recover from the training load I am | putting my body through (I also carry a 2-3x per week lifting | load regardless of my running schedule). | telchior wrote: | I take magnesium for migraine and vertigo. Very much not a | believer in supplements -- before this, I went through years | of specialists prescribing various pharmaceuticals with | various side effects. These days the problem is under control | without any meds; I just take magnesium (specifically, a mix | of l-threonate, glycinate and taurate), telling myself every | day that it's probably unrelated to my feeling better. Like | you said, it couldn't possibly be working as well as it seems | to. But if I stop, my condition mysteriously gets worse. If | it's a placebo.. eh, who cares? | s5300 wrote: | >> Very much not a believer in supplements | | ...why? | | Vitamin, mineral, and nutrient deficiencies are a very well | known science. | docandrew wrote: | I've read that a lot of people, especially men, are deficient | in magnesium. It's an essential mineral so I wouldn't call | your use of it pseudoscience by any stretch. | br3akaway wrote: | Could you share your magnesium preparation and dose? If you | are deficient in magnesium, the mechanism I would guess is | that neck muscles are unable to relax and constrict the | action of weaker muscles used for breathing. | mabbo wrote: | https://drbvitamins.com/products/doctor-s-best-high- | absorpti... | | That's the good stuff. Constantly hard to find in Canada. | | Edit: also this is literally the first time anyone has ever | provided me with any idea if why it might actually work. So | seriously, thank you for that. | akira2501 wrote: | > The magnesium is absolutely unproven pseudoscience nonsense | that can't possibly work. | | With so many systems in the body, you really have to wonder | how many people actually have a _single_ issue that's causing | _all_ their problems. It's much more logical that your | experiences are the result of emergent phenomenon from the | interaction of multiple issues. In that case, perhaps you're | simply treating a secondary condition that's vastly improving | the outcomes with what you view as your primary condition? | elric wrote: | Nothing works anywhere near as well as PAP therapy. Certainly | not diets (overweight is often an effect of apnea, not a | cause). Sleeping positions can help in the case of positional | apnea, but certainly not for everyone. Botox injections | anywhere will have to be repeated regularly. Fucking with the | uvala (like in UPPP surgery) can actually _worsen_ sleep apnea | and has all kinds of nasty infection and side effect risks. | | PAP therapy works. The biggest problem with it is that it has a | bad reputation, which is largely caused by doctors and sleep | clinics not doing their fucking jobs. Patients are often sent | home with a CPAP machine, titrated to some semi-random setting | which happened to be fine for the night of their sleep study in | an artificial environment. And that's it. Goodbye and good | luck. That's such a messed up way of treating people with a | life-long ailment ... | agrue wrote: | Thanks for your detailed response, but the things I listed | were entirely in jest. I don't think the uvula causes sleep | apnea and don't believe a pill would be able to obviate | breathing while sleeping. | n8henrie wrote: | To me, it certainly seems to suggest an environmental cause (or | at least significant contributor). Certainly doesn't seem | evolutionarily adaptive for such a large proportion of the | population to live with profound mental and physical fatigue. | | Obesity is an obvious confounder, but these seemingly frequent | front-page HN sleep apnea posts usually abound with anecdotes | of normal / thin individuals with significant issues. | agrue wrote: | Thank you, this is what I'm driving at. The conversation | includes very little discussion of cause or actual treatment | beyond symptom mitigation. | martindbp wrote: | Always wondered if not most of our sleep issues would go away | if we spent a few days or weeks camping in the wild without | electricity. Unfortunately not a long term solution. | Jeff_Brown wrote: | I lost the ability to change positions while sleeping after | having open-heart surgery and having to sleep immobile for | months. I wish I knew how to get that back. My searches online | yield nothing. | ignite wrote: | There absolutely are therapeutic sleeping positions. Sleep on | your side. | | Google it for yourself or https://www.sleepcycle.com/sleep- | apnea/optimal-sleep-positio.... | acomar wrote: | this worked for me for a while but in the last year, I've | started getting episodes even though I've taught myself to | sleep on my side, breathe through my mouth, keep my airway | open by tilting my chin away from my chest, etc.. these kinds | of techniques only work so well. | lmohseni wrote: | 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! | vaylian wrote: | What are the best strategies for increasing nose breathing? | sanman811 wrote: | I would also suggest looking into the Oxygen Advantage | system. Just finished reading the Breathing Cure by Patrick | McKeown, makes some interesting claims but mostly found | helpful exercises to retrain nasal breathing | stuffuru wrote: | Look into the EASE procedure by Dr. Kasey Li | uptownfunk wrote: | Have you tried this? does this work? | stuffuru wrote: | It helped me. I no longer wake up feeling congested. The | impact on sleep was more subtle. I had some prior | complications so I wasn't able to expand as much as the | avg patient. | EvanKnowles wrote: | Wait, people aren't breathing through noses? | dtech wrote: | Nope, usually feel like I don't get enough air. | amanj41 wrote: | I'm not sure if it started this way, but I mostly breathe | through my mouth at night due to significant congestion in | my nasal passage. If I use a nasal rinse or flonase it | helps but if I'm not diligent it regresses immediately. | khazhoux wrote: | Give this a shot for a week or two. Just jam these up | there. It will be uncomfortable at first but you get used | to it. Really opens you up and takes away a ton of | resistance in nasal breathing. | | https://a.co/d/18eLtdw | tsgagnon wrote: | I had to have my deviated septum surgically corrected back | in my late teens before I was capable of breathing | consistently through my nose. Even simple things like | chewing with my mouth closed were difficult because I | couldn't breath well enough with my nose only. | senectus1 wrote: | 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 wrote: | You sleep better by consciously breathing through your | nose at night? Or during the day? | LoganDark wrote: | Probably by falling asleep with their mouth closed so | that they breathe through their nose for the night. | stuffuru wrote: | lots of people with chronic allergic or non-allergic | rhinitis aren't able to breathe through their nose. | eth0up wrote: | His book "Deep" remains one of my very favorite books of all | books, and I've turned a fair stack of pages. It's a | different kind of medicine though; for me, it revived my | soul, if there is such a thing. | dizhn wrote: | I thought I'd get a freebie there (like when you lose weight | just by cutting soda - which I already don't drink. Another | freebie lost), but when I paid attention I am breathing | exclusively through my nose and to make matters worse my | tongue is in the mewing position. So this is already the best | case scenario for my weight, sleep and jawline. Bummer. | mkmk wrote: | >No throat exercises or therapeutic sleeping positions? No | diets? No botox injections for your uvula or a daily pill to | obviate breathing while sleeping? | | Since OP's apnea is not obstructive, sleeping position, botox, | etc. won't make a difference. | agrue wrote: | This is what I was talking about. The patient has apnea type | b. The prognosis remains Bad at Sleeping, use iron lung type | b with no alternatives. | | Most people have type a and use iron lung type a, there are | some treatments for this type but most people opt for the | iron lung. | diob wrote: | I have sleep apnea, not overweight. I wish there was more | research poured into a solution that isn't pseudoscience junk | or predatory. | | Grateful to the inventors of the cpap though, changed my life. | tablespoon wrote: | > 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 wrote: | The article is more about hacking his medical system so he | could move through the established process faster. | oefnak wrote: | Me it reminds of that guy who DIY genetically modified a virus | to cure his lactose intolerance (for a year). | LoganDark wrote: | > 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 wrote: | https://www.youtube.com/watch?v=J3FcbFqSoQY&t=0 | Vingdoloras wrote: | Not the original video, but a follow-up one by the same guy | talking about results and future plans: | https://youtu.be/aoczYXJeMY4 | acyou wrote: | 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 wrote: | 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. | musha68k wrote: | "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/ | elric wrote: | 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/... | netman21 wrote: | 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 wrote: | > 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 wrote: | > my life insurance company dropped me | | That ought to be illegal. Could you get re-tested, certified | healthy, and restore your insurance? | zackmorris wrote: | 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. | inconceivable wrote: | +1 for breathe right strips. they're all i need for a good | night's sleep. they are kind of expensive but you can buy them | in bulk from amazon and a good night's sleep is priceless. i | would recommend everyone try it just to see if it helps. | | sometimes i wear them while out and about, because i'm at the | age where i really don't care what other people think of me. | also, a lot of athletes use them while working out. | 55555 wrote: | 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? | jrm4 wrote: | There are more than a few free apps that can record audio of | you the entire night in a zoomable, scrollable way (i.e. you | look for the spikes in the waveform and listen to them) I used | these for a bit in figuring out my own CPAP needs. | 55555 wrote: | Thank you! This sounds like a very simple and free solution. | Broken_Hippo wrote: | _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 wrote: | 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 wrote: | > 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 wrote: | Not a doctor but an audio recording of a night of sleep could | help while you wait for a different device. | dghughes wrote: | 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. | [deleted] | mattnewton wrote: | The second paragraph has his concerned wife waking him? | tablespoon wrote: | > What's the cheapest wearable or device that can probably tell | you if you have apnea? | | Years ago I was once concerned I might have had sleep apnea. I | did see a doctor, who said I almost certainly didn't have it. I | also bought a $40 pulse oximeter that could do logging, and | taped it to my finger over a couple nights. I didn't see my | oxygen level drop below 90% (or something, I can't remember), | so I figured I didn't have it. | | My understanding is oxygen level is one of the most important | factors to track for sleep apnea. I am also super-skeptical of | movement-based sleep tracking. Since my impression is it's | typically half-assing with cheap sensors that aren't very | suited to the task (on their own). | crucialfelix wrote: | Smart Watches often can track sleep and approximate blood | oxygen levels. | | Does anyone know how accurate Samsung or Apple Watch are? | Levitz wrote: | You might want to check this youtube channel: | | https://www.youtube.com/@TheQuantifiedScientist | | Reviews of health tracking devices, often comparing their | performance with medical equipment. | jutrewag wrote: | [flagged] | world2vec wrote: | In some countries it requires medical prescription so maybe for | the author it's not really worth the hassle? | captnFwiffo wrote: | [dead] | Jonovono wrote: | > 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! | ericmcer wrote: | Anyone want to join me in making a dating app for people who need | CPAP machines to sleep? I am semi-serious haha | tiku wrote: | 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). | khazhoux wrote: | 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 | tiku wrote: | 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.. | moremetadata wrote: | [dead] | aszantu wrote: | 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 wrote: | If it takes 4 days to show, I would never be able to associate | with my eating habits :( | znpy wrote: | > 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] | yosito wrote: | > 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. | colordrops wrote: | It shouldn't be controversial that you should be responsible | for your own body and health. | whalesalad wrote: | Most people are not good debuggers. Medical. Automotive. You | gotta do a lot of things yourself these days. | hakunin wrote: | > 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. | pixl97 wrote: | Working with the healthcare system is like a marriage, it | requires 100% from both sides. | | I've had friends with relatively common illnesses like high | blood pressure just not take care of themselves via diet, | medicine, and exercise, then blame the medical system when | their conditions got worse. | | At the same time I watched my sisters health degrade over | years while she fervently tried to do everything possible to | make it better and saw many specialists when they said | nothing was wrong and she was being a hypochondriac. It was | finally after very effectively documenting everything about | her condition and keeping it in a binder and keeping daily | charts of her vitals, that a doctor stated "You have some | very rare condition, now we have to figure out what it is". | | Healthcare is deeply personal and individualized at the end | of the day. The problem is we don't have the trained doctors | and systems to give the level of care needed. And on the | other hand, a lot of individuals don't put for one reason or | another, the needed work to ensure they have good health | outcomes. | akira2501 wrote: | > Most people do pretty irrational stuff, based on stories of | a doctor in my family. | | The doctor gets self reported snapshots from a patients | memory. It amuses me as an engineer that they detect what | seems irrational, but never follow up on it in any meaningful | way or ever attempt to observe the actual reality of their | patients lives. | | The lack of time for real follow up is understandable, but | the unwillingness to accept that this fact, more than | anything, colors the way they see their patients is a little | maddening. So, I always find it understandable when someone | decides they'd rather take their care entirely into their own | hands. | AbrahamParangi wrote: | Experiments are science, and if we knew how they'd turn out | beforehand they wouldn't be experiments. | | Sort of definitionally you can get pretty weird or unsafe and | if you're comfortable with it not working it's still a | totally valid experiment. | ceejayoz wrote: | Experiments are _potentially_ science. Not all experiments | are done in a scientific manner. | | (And even then, experimentation is only a _part_ of the | scientific process.) | version_five wrote: | No, experiments are really only science in the usual sense | if you have an expectation of how they will turn out and | you run the experiment to test your hypothesis. And | properly constructing the hypothesis, to include past | knowledge and some causal mechanism is vitally important, | the causal part being often neglected even in "real" | science. | | There was a lot of this during Covid (which I know is a bad | example because of it's political baggage, but anyway). | Various "x cures / helps with covid" trends (sometimes | including studies) but not really based on a anything. It's | not really scientific to just imagine something could work, | and then try it. Contrast it with vaccines, where, | regardless of your view on the covid one, there's an actual | plausible causal pathway from being exposed to it to | getting immunity, so it's possible and a legit thing to do | to run an experiment to see if it works. | hutzlibu wrote: | "so it's possible and a legit thing to do to run an | experiment to see if it works. " | | I think it is possible and legit scientific to run | experiments on allmost anything, no matter how weird. | | What matters is how you do the experiment and what is the | result - does it work? And if it does, is it | reproducible? | | Thats the key difference between a scientific and a | esoteric experiment. | | But you totally can investigate whether divine blessed | guano shit cures cancer in a scientific way. Most | researchers just won't waste their time with it. | Experiments are expensive. This is why most experiments | are indeed only conducted, if there is a solid theory | about the process and not a shot in the blue. | | (And another actually sad part today is, that many new if | not most scientific papers out there are actually not | reproducible anymore (at least not with the data | provided), but no one cares or does something about it, | except complaining, because there is nothing to win, from | redoing an experiment of someone else. Reputation and | grants demand new research.) | __MatrixMan__ wrote: | > Experiments are expensive | | I wish there was an app where I could design experiments, | and people could opt-in to participating in them. I'd of | course participate in other people's experiments . The | app could handle the statistical reasoning. Every now and | then, there would be a strong enough signal in the data | to attract "real" scientists to problems that would | otherwise go unexplored. | | People are gonna do weird stuff anyhow, we might as well | see if some good can come of it. | PragmaticPulp wrote: | The article is about someone following what is basically | the established diagnostic and treatment flow for sleep | apnea. It's not exactly an experiment. He was pushing the | process forward faster than his medical system could, but | it wasn't novel or experimental. | dekhn wrote: | This isn't science, it's medicine. Many parts of medical | diagnosis are not completely scientific. It's also easy for | people managing their own health to make mistakes that | professionals would not. | StrictDabbler wrote: | Yes, absolutely. It is worth practicing medicine when the | treatment is inherently harmless and going through the | medical system has been bottlenecked. | | Nobody is killed (or really harmed) by trying a CPAP and the | waiting list for sleep clinics can be months or years long, | not to mention the expense. | | It's one of the rare medical interventions that is relatively | safe for an individual. Probably should be otc. | LoganDark wrote: | > Probably should be otc. | | Isn't it already, if you can just buy a CPAP machine off | the shelf? | __MatrixMan__ wrote: | The people giving the labels need to read Paul Feyerabend. | Science is at its worst when coupled with authority. | A4ET8a8uTh0 wrote: | Interesting. With exception of the pandemic, I don't think I | encountered that particular view often. If anything, taking | medicine into your own hands tends to be a result of quick fix | mentality ( which used to be a uniquely American issue ), lack | of access to medicine and doctors. | | I am not one to defend doctors too much as I did have a moment, | where a whole series of trained professionals missed something | obvious ( in retrospect ) to the point that made me question | whether they were all just trying to drain my insurance as much | as they could. It is a problem, as we are still learning how | our bodies really work. | | << you need to sometimes tackle your own health | | That 'sometimes' is important. You want to know the line where | supplements and blinds are no longer sufficient. | ifyoubuildit wrote: | If the two options are wearing a label that you don't like | (that the labeler might not even understand) but having your | health, or wearing a more desirable label but without your | health, the choice seems clear. | | It's like they say, opinions are like assholes. Everyone's got | one and they all stink. At the end of the day, the only one who | is really accountable for your health is you. | bmarquez wrote: | Absolutely. I was prescribed an APAP with the default pressures | set from 4-20. The doctor claimed that the "machine would do | all the work" but I still had poor sleep quality. Ended up | downloading Sleepyhead (the predecessor to OSCAR) and self- | titrated using a band of 90% reported pressure. | | My sleep improved but my doctor got mad because I wasn't | listening to medical advice, but going into the APAP clinician | settings and changing them myself. | jrm4 wrote: | Exactly this. I've also dealt with the whole CPAP thing, and | the extent to which the whole industry is obviously | infantilizing-for-profit is infuriating. Over the years, it's | gotten increasingly difficult to just "buy the supplies | yourself," (aka easily and/or cheaply) and the extremely | condescending "reasoning" we get is "oh, it's medical equipment | and therefore dangerous so we get to control it." | | And _here_ , having done it for years, I can tell you this is | nearly absolute BS. It's a hose hooked up to a fan that softly | blows somewhat filtered air through a tube. That's IT. There's | no remotely signficant way that this thing will _hurt you_ even | if used improperly; especially as compared to so much other | dangerous OTC drugs and /or medical equipment. | 015UUZn8aEvW wrote: | One way that you can identify rent-seeking disguised as | safety is to compare the degree of risk considered acceptable | across industries. For example, you can buy and use a | chainsaw and similarly-dangerous power tools with basically | no constraints whatsoever. But chainsaws are definitely more | dangerous than CPAP machines or many prescription-only drugs. | I'm sure that professional tree clearing companies would like | it if everyone except them was banned from engaging in their | line of work, but that's not the case because they have less | effective lobbyists than doctors have. | plagiarist wrote: | I think it is extremely important that medical devices are | open, especially data, to prevent rent-seeking on the | people who need them to live. | | However, if I manufactured, say, an insulin pump, there is | no way I would allow it to ship with user-configurable | settings in a country as litigious as the US. CPAP seems | less risky, but not worth chancing anything. The US market | seems to be the primary target for many medical devices, | the UK might be receiving CPAPs developed primarily for the | US court system. | drpancake wrote: | While I agree in general, people who are candidates for ASV | have to be screened first by a cardiologist. Certain traits | can lead to a much higher risk of death while using one. | Spooky23 wrote: | Actually, there is. | | Improperly designed tubes can accumulate or retain moisture, | and that small fan will blow mold into your lungs overnight. | | Would you trust an Alibaba CPAP sold on Amazon for $50? | Enginerrrd wrote: | >There's no remotely significant way that this thing will | hurt you even if used improperly | | Eh... I've talked to RT's and the occasional pulmonologist | enough about ventilators out of idle curiosity to learn that | the pressures involved do need to be carefully set within | certain envelopes to minimize risks, and I'm not quite as | confident as you are in this statement. | meindnoch wrote: | Ventilator != CPAP machine | Enginerrrd wrote: | Oh, I know that! I'm familar with CPAP's and BiPAPs and | ventilators, etc. I was a paramedic before I became an | engineer. My point was just that, within the context of | ventilators, I learned just how little I actually knew | about the field of pulmonology and how many things I | didn't think would be an issue are actually quite | dangerous. What little I picked up would be enough to | give me pause about the confident statement made in the | comment I responded to about DIY CPAPs. | tjohns wrote: | Most CPAPs prescribed these days are Auto-PAPs that self | calibrate as you sleep. | | They often don't even do a titration study to figure out | the right pressure range anymore. They just give it to | you with a reasonable default setting, let the machine | figure things out automatically, and tell you to come | back in a month to check the logs to see if your apnea | got better. | jrm4 wrote: | I'm considering the _relative /marginal_ danger (e.g. | against actual apnea) and I just don't see it? | | You set your controls HORRIBLY wrong on an off the shelf | CPAP -- and, what? It's not like you're going to explode | your lungs. Your own inability to breathe properly will | make you take it off. Or you keep it on and you fart more | in the morning (true story, by the way, I've never heard | anyone mention this side effect of CPAPs) | xtrohnx wrote: | lungs might not explode, but they can bleed if the | pressure is set incorrectly. i've heard horror stories | about people turning it up to 11 and throwing up blood in | the mornings. | ianai wrote: | It could also be labeled "self advocacy" with a light | scientific oversight. Ie don't do the same thing twice and | expect different results, and detailed, intricate logs, etc. | "Giving a crap" about your health is definitely not anti- | science. | | I've routinely had to do this with my own health. It was | especially bad before Botox for migraine was around. Heard a | lot of "men don't get migraines, I don't believe you" from | neurologists. | | For sleep apnea, it was an adverse reaction to a medication | that led me to strongly request my doctor send me for a sleep | study. Found out during the sleep study that I needed a good | bit of air pressure and I've been benefiting greatly since. But | it did take me doing some online research into side effects of | the medication (from high quality sources), being insistent, | and establishing some report with my doctor through logs, | candor, and listening. | kurthr wrote: | I agree and think it's interesting that we find a very | similar article about finding a slow electrical leak in a | car. Most of the experts are interested in taking the cream | off the top of diagnosis, because most of the time you have | the common condition that responds to the common treatment. | | https://news.ycombinator.com/item?id=35513636 | | But when it's not and they have to look at a lot of details | and spend a lot of time figuring out the problem many aren't | interested, if only because they're pressed for time (by | insurers) and trying to reduce cognitive load. | yosito wrote: | I'm sorry, but "don't do the same thing twice and expect | different results" is not science at all, and might even be | described as anti-science. | LoganDark wrote: | I was never diagnosed with ADHD because medical professionals | never noticed any symptoms on the outside. But inside, I was | always suffering, I just didn't know what it was called. Once I | learned about ADHD and that I checked every box, I started | taking stimulants (even without an ADHD diagnosis) and they | solved everything. | | I think my case was just so severe that nobody saw me | _struggle_ with it, because it was impossible to fight. Plus, I | 'm autistic, so a lot of things were written off as autism. | Mezzie wrote: | > I think my case was just so severe that nobody saw me | struggle with it. | | Same with me but PTSD. Like the fact that I'm remarkably | functional in crisis mode doesn't mean that it's not a | problem I live there all the time. A surprising amount of | medicine relies on having a stable baseline against which to | compare and if that's not there, the tests don't work. | WaxProlix wrote: | What - if any - nontraditional treatments have you ended up | gravitating towards for that? | LoganDark wrote: | > Same with me but PTSD. Like the fact that I'm remarkably | functional in crisis mode doesn't mean that it's not a | problem I live there all the time. | | Exactly! I wanna fix something _wrong with me_ , not | something _preventing me from becoming a work slave_. I | want to be _happy with myself_ , not just _useful to | society_. My own happiness should trump most metrics of | functionality. | Mezzie wrote: | It's crazy-making, isn't it? | | I realize in hindsight how much of my resistance to help | was resistance to 'help': I've grown up surrounded by | adults/authority figures offering 'help' with no | consideration of my actual desires or wellbeing. I _know_ | that one. Of course I was wary: I had a good reason. | | You're right that it all relies around making people | functional, not whole people who have come to terms with | who they are and are a psychologically stable human | organism. | PragmaticPulp wrote: | He recognized the signs of sleep apnea and pursued treatment | with sleep apnea devices, getting confirmation of the problem | with the help of his doctor. The DIY part was largely related | to pushing the process forward, not doing novel | experimentation. | | Nobody would call that "anti-science". | | Anti-science would be something like ignoring the common | treatments and trying to solve the problem with natural | supplements or something. Going this route often delays people | from getting to proven treatments because they spend a long, | long time trying underpowered or unproven things that don't | work. | Levitz wrote: | >He recognized the signs of sleep apnea and pursued treatment | with sleep apnea devices, getting confirmation of the problem | with the help of his doctor. | | It actually baffled me that it wasn't his doctor who picked | this up. A person waking up several times with confirmation | from someone sleeping besides him that he has stopped | breathing, I'm no doctor and gee maybe it's because there are | a few cases in my family but that screams "sleep apnea" to | me. | groby_b wrote: | Absolutely no cases in my family, and it's still screaming | sleep apnea. I mean, apnea _literally_ means "stops | breathing". | | A doctor who doesn't recognize that is maybe not the best | possible doctor. To put it very mildly. | Spooky23 wrote: | Especially now. Sleep apnea is a big cash cow for medical | networks. | | Normally if you mention a problem even somewhat in the | neighborhood of sleep apnea you're shoved into the funnel | for sleep studies and CPAP devices. | rdiddly wrote: | Trying things is science, and any experiment can be retried | to see if results replicate. People who aren't scientists or | don't have time or equipment to be scientific about a thing | have to decide where the balance lies, between how much | science they're capable/willing to do vs. how many | assumptions they're willing to make based on other people's | science. | | There's no belief system called science and you can't be pro- | or anti-science. Science ironically is pretty questioning and | skeptical, so questioning some piece of science, is | scientific. | | Certainty and the temptation toward it is your enemy if you | would maintain a "scientific" worldview. Politics demands | certainty, simplicity. Fascism, especially so. | blix wrote: | > There's no belief system called science | | There are two belief systems called science. | | The less common one is the one you outline immediately | after denying its existence: it's about asking questions | and trying to establish evidence-based models to make | predictions and testing/validating the assumptions in those | models. It's probably more accurate to call this belief | system empiricism. | | The more common one is a deferral to expert authority, | where experts are designated by certain established | scientific institutions. Because many lack the | time/will/ability to independently verify claims made by | authoritative figures, this deferral requires substantial | trust in these institutions to come up with good answers. | | This second belief system is what most people mean when | they label themselves or others as pro- or anti-science. | Paradoxically, even though the authoritative institutions | ostensibly produce information empirically, expressing | skepticism and asking questions is often perceived as a | lack of faith, and therefore anti-science. | Out_of_Characte wrote: | On the flipside, there are also a small selection of unproven | treatments that work better than standard care. | rendaw wrote: | If they're unproven, how do you know they work better than | standard (=proven) care? | Spooky23 wrote: | Unproven doesn't mean ineffective. Cranberry juice isn't | FDA approved to help with urinary tract infections, but | is frequently recommended by urologists and works. | Another example is that isopropyl alcohol, which is an | effective disinfectant, doesn't meet the EPA standards | for being a pesticide... which is because it's existence | predates the process. | | It's expensive to go through that rigorous process, and | there's no economic incentive to go through that for | something that isn't patentable. In the case of cranberry | juice, it's not sold as medicine. In the case of alcohol, | you can buy very expensive wipes that have a | certification if you need it for some industrial process. | Levitz wrote: | There is a certain weight to experience and prevalence, | you can go wrong, sure, but it's often worth it to try. | | Parachutes aren't scientifically proven to work on | humans. | nawgz wrote: | ... | | That's not the flipside, that's the "exception to the | rule". Of course the system's not perfect, but people don't | live way longer now because our medicine is worse than | before... | StrictDabbler wrote: | "The exception proves the rule" refers to a logical/legal | situation where a rule has been posted with specific | exceptions. | | A sign that says "no parking on Sundays" logically | implies that parking is allowed all other days. | | The concept you're looking for is closer to "any | statistical group has outlier cases". | nawgz wrote: | I did not use the word "proves"; the "exception to the | rule" fallacy is when you see a singular case violating | some rule and you use that to assume the rule doesn't | hold in general, or you make generalizations from a | singular case. | | The commenter I'm replying to is advocating for homeo- / | naturo-pathy because of some statistically insignificant | and probably actually not causally based relationship | they've witnessed, which is generalizing from a ~singular | case | PicassoCTs wrote: | And if they survive rigorous testing, they become "standard | care". Sience is the borg of all ideas, the good ones get | integrated, the bad ones stay outside. Opposition to the | borg is appreciated, as it raises the assimilation value. | PragmaticPulp wrote: | The standard of care doesn't mean it's optimal for | everyone. Doctors will often explore alternative treatments | when the first-line measures aren't working optimally. | | It's a mistake to ignore proven, first-line treatments and | skip straight to less proven alternatives, though. Some | people have built an anti-mainstream bias that puts too | much emphasis on the unproven, alternative treatments while | downplaying the most proven treatments. | ipaddr wrote: | The biggest mistake anyone can make is to blindly jump | into medical treatments first when common home treatments | with lower side effects can handle the job. If you do | that you'll be in blood pressure meds by 35 instead of | reducing your salt. | 8ytecoder wrote: | Doctors do often recommend those - they just won't touch | anything that might requires FDA approval and doesn't have | it. I have indigestion issues and it's my doctor who | recommended a supplement with peppermint oil and castor | oil. Worked like a charm for me. I had tried a whole suite | of meds prescribed by my GP but the GI specialist went | straight to the supplement. | lapetitejort wrote: | Can you share an example of an unproven treatment that | works better than standard care? | heisenbit wrote: | Adoption of new methods takes a considerable time in | medicine. Some methods may be considered unproven by the | majority but are being adopted by pioneers. Now if you | could distinguish pioneers from quacks easily... | Spooky23 wrote: | One of the issues with specialty medical care is that you | aren't seen as a whole person. | | The orthopedic guy sees you as a candidate for surgery a, | b or c. He may miss that something else is going on. A | treatment may be "unproven" for a symptom, but perfectly | acceptable for a root cause. | aantix wrote: | Rinsing with baby shampoo and iodine for the treatment of | sinus inflammation. | | Vs antibiotics and/or saline rinses. | ipaddr wrote: | Reducing salt vs taking blood pressure meds. | | Aloe vs cortisol for skin issues. | Out_of_Characte wrote: | I can come up with examples but know its ironic to try to | proof treatments that are, scientifically or medically, | not verified. | | Theres diet, sleep, exercise. Which require no studies to | know that taking better care of yourself will help you | regardless of the pathology. | | Then there's the somewhat strange case of orthodontist | John Mew, who advocates for setting your tongue posture | to the roof of your mouth in order to close the jaw | properly, to prevent standard treatment of various | braces, teeth alignment issues and corrective jaw | surgery. | | Other strange therapies that I've come across that seem | unhealthy but have some backing are intentional sleep | deprivation to improve depressive symptoms. prolonged | fasting to reduce scar tissue. Or one I personally use | alot, extremely cold showers after allergene exposure. | | There are alot of silly things the human body can do that | at first glance might seem irresponsible or dangerous but | are about as dangerous as people in the 1900's might | imagine airplanes would be. | | One more thing I might add, standard care does not mean | 'in your best interest' some standard practise might be | too cruel to accept, like chemotherapy. Even though its | proven to extend your life, it might not be proven to be | in your best interest. | SketchySeaBeast wrote: | I would say that diet, sleep, and exercise have been | proven to help many conditions and it would be non- | controversial and not anti-scientific to suggest them. | sawyna wrote: | I used to have pretty bad sinus. I used to take | antibiotics for 10 days a month and would be good for 20 | days and this goes on each month. After 6 months, my | immunity has gone to shit. The doctor recommended | clearing out my sinus by a surgery but apparently that | doesn't solve the root cause. It can happen again and | again. | | I tried multiple doctors, treatments, tips etc and etc | nothing worked. I finally visited a homeo doctor who | diagnosed it right. It's deviated septum which is causing | sinus infections because of regular coconut water intake. | I just stopped drinking coconut water and it's been 10+ | years and not another recurrence of sinus so far. | | Proper diagnosis is hard and requires skill. The OP | figured it by himself and in my case, someone did. | hutzlibu wrote: | "homeo doctor" | | Homeopathy doctor? | Weatebob wrote: | [flagged] | Levitz wrote: | Research is currently being done and this is of course | anecdotal (I mean, if it wasn't it would be proven | treatment, wouldn't it?) | | That said, my depression was improved more by a couple of | magic mushrooms trips than by more than a year of | psychology. The results have been so good that it feels | wrong to share it, makes it sound like some miracle stuff | and I think any depressed person would go for it in a | heartbeat completely ignoring risks. | tayo42 wrote: | Yeah idk if that's the same, psychedelics are getting | mainstream attention as helping depression. And like you | said real research is being done. Research used to be | done before the governments got in the way. | | I think the stuff people are talking about are like when | Steve Jobs did the fruit diet thing to cure cancer | GistNoesis wrote: | Getting to the root causes is often preferable. | | For example if your air quality is bad and/or ventilation | is bad and may cause sleep apnea (like high CO2 | concentration often makes you feel drowsy). | | But the seller of CPAP machine will not monitor your air | environment. | | With medical problems there are often multiple factors, | and when a solution is found that fix the symptoms, care | is no longer taken to find the other causes, specially if | the solution is generating recurring revenues. | Angostura wrote: | Prove it. | dylan604 wrote: | isn't that the scientific process though? trying things to | see the results sounds like the definition of experiment to | me. | VikingCoder wrote: | We all need to be our own advocates, in lots of areas. | | What's concerning is when people ignore the experts completely. | | Steve Jobs ignoring the advice for pancreatic cancer treatment | comes to mind. | toss1 wrote: | >>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 wrote: | Edit, meant to type "it sometimes is", not it is | | (didn't check my writing, too late to edit) | jonhohle wrote: | 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 wrote: | 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. | LoganDark wrote: | > The main difference is the whole going bankrupt thing. | | US healthcare really does seem to want to bankrupt people. As | an example, most insurance doesn't cover dental care, which | is (in)famously one of the parts of the body that needs the | _most_ maintenance. | | My insurance doesn't cover my ADHD meds because I have to | take more than 1 pill a day. $80/mo for the rest of my life | if I want to treat a disorder. (My case is pretty bad, too.) | | I (hopefully?!) have decades of life left, and $80/mo is | almost $1,000/year. Not super cheap. I actually can't afford | this on my own income and have to rely on a family member to | help. | arghnoname wrote: | Most work plans include a separate dental plan, for which I | am thankful. However, near worst-case scenarios for dental | issues are comparatively affordable ordeals. My routine | dental care is covered for me, but it's affordable either | way. I had to have a root canal and crown, which would have | been annoying to pay for, but certainly not something that | would bankrupt me. If I remember correctly, it was in the | ballpark of $2k in the DC metro area. It's still possible | to set money aside for possible dental issues and self- | insure. | | Because dental costs are more reasonable, insurance | premiums don't tend to be very high and can be purchased | outside of your main health plan. If primary medical costs | were more on par with dental costs (as it probably did once | upon a time, when the offerings were much more primitive), | insurance wouldn't be such a big issue. | kick_in_the_dor wrote: | 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." | dv_dt wrote: | As far as I can follow, the NHS has been severely and | intentionally undermined of resources by the ruling party. | They are in the cusp of doctors going on strike. | kevviiinn wrote: | They're trying to get things privatized like they did | with rail. You can see how well that turned out | version_five wrote: | I don't have any experience with US healthcare, but presumably | having insurance and whatever conditions they enforce is | basically a form of socialized healthcare, no? | | If one wanted to, couldn't they find a provider they could pay | to deal with whatever issue immediately? | aidenn0 wrote: | There are three main types of insurance in the US: HMO, PPO, | and EPO. | | HMO works a lot like my understanding of the UK system | (except the government doesn't pay for it); if you want to | see a specialist, you need to get permission from the | insurance provider, either directly, or (more typically) by | having your GP (a.k.a "primary care provider) write you a | referral. | | PPO and EPO do not require referrals. A PPO typically has | high deductibles for doctors that are not contracted with the | PPO, and an EPO does not provide any coverage for doctors | that aare not contracted with it (the P vs E is "preferred" | vs "exclusive"). | | PPOs tend to have the highest premiums. Anecdotally, HMOs | used to be a pretty good deal. From my earliest memories of | how health-care worked HMOs didn't add too large of a delay. | However, more recently it has been harder to get a referral, | and once I get the referral, there are so few local places | that accept the HMO (perhaps because of below-market rates | paid out?) that a 6+ month wait list to see a specialist is | not uncommon (some things like physical therapy having such a | long wait-list that it's hardly worth it; I was quoted an 8 | month wait list for PT for a shoulder injury, at which point | I just googled for exercises I could do). | | Also _twice_ now I have been hit by the HMO refusing to pay | for emergency care because even though the ER I took my kid | to was "in-network" one of the doctors who saw the kid at | the ER was an independent contractor which isn't covered by | the HMO. Over $1k out-of-pocket each time. | arghnoname wrote: | This is a good summary. What's interesting to me to observe | here is your PT story is the system working as designed. | This intention is not hidden. If one could just google the | solution to their problem instead of using scarce | resources, as the common phrase goes, that's a good thing | actually. | | We do an awful lot of rationing in these sorts of ways. | It's maddening to me that I pay the astronomical premiums I | pay and yet, end up having to play mini-doctor by asking | the internet for answers. I do not have any illusions that | I'm able to provide sound medical advice to myself or | others, but just due to these sorts of issues and also | doctors visits that are practically conducted via drive- | through, Google MD is often my doctor / PT person / etc of | first resort. | drewcoo wrote: | > everything Americans have complained about socialized | healthcare | | > 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 don't have any idea what that has to do with "socialized | care." If anything, most of those factors resemble the way | businesses scale up. | version_five wrote: | I disagree- socialized care is like insurance. The incentive | is to pay out as little as possible. This is true whether | it's a government health care program or actual health | insurance. | | An actual "market" system encourages consumption and competes | on price and quality. | | Health insurance (public or private) makes sense for | catastrophic events (major illnesses) but for regular ongoing | things like GP visits and common prescriptions, it's just a | middleman that drives up prices and discourages prevention | and primary healthcare. | abecedarius wrote: | Totally agreed about the problem of long latencies due to | bufferbloat in our medical system. I ran into it last year and | I believe it significantly raised my risk of death. | | A suggestion in case it's unfamiliar: there are doctors who | don't take insurance. I can always see mine within a few days, | for $80/month. (I set this up after the above experience.) It's | absurd that I have to do this and also pay for insurance | separately (paying much more than I did before the Affordable | Care Act made insurance plans for _catastrophic_ medical costs | illegal) -- but that 's where we are. | goodpoint wrote: | > everything Americans have complained about socialized | healthcare is now true in the US as well | | With the added bonus of paying completely insane amounts. | lunderdog wrote: | 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. | ericmcer wrote: | My friend had that surgery, it also gave him a more robust | jawline which was a bonus. | | He used to snore shockingly loud. It sounded like a jet taking | off, if I tried to mimic it intentionally I was unable to get | as loud. | diob wrote: | 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 wrote: | 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. | mancerayder wrote: | 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) | david2ndaccount wrote: | There are home tests. That's how my sleep apnea was diagnosed. | elric wrote: | Not being overweight has zero impact in your ability to have | sleep apnea. Get tested anyway. | DMell wrote: | 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. | AuryGlenz wrote: | 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 wrote: | 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 wrote: | I have bruxism myself... What's the link with sleep apnea | exactly? The jaw's position pushing the tongue back? | nanidin wrote: | I'm not sure which way the arrow of causation points - | one of the body's reactions to stopping breathing while | unconscious is to grind the jaw. | mattgreenrocks wrote: | Curious: can the Apple Watch detect this sort of thing? | jonhohle wrote: | 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 wrote: | 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 | | [1] https://9to5mac.com/2022/05/10/napbot-sleep-apnea-analysis/ | | [2] | https://www.reddit.com/r/SleepApnea/comments/vxkkxx/napbot_a... | btreesOfSpring wrote: | 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- | apd83... [1] https://www.snorelab.com/ [3] | https://www.withings.com/be/en/sleep-analyzer | sinuhe69 wrote: | 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. | elkos wrote: | 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 wrote: | 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 wrote: | might be FODMAP sensitivity. | hellohihello135 wrote: | 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 wrote: | 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? | maxehmookau wrote: | 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 wrote: | 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 wrote: | I commented on this above but I think this is because ASV | users need to be screened for heart issues first! | henearkr wrote: | 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. | rolisz wrote: | 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. | docandrew wrote: | Could be a hormone deficiency/imbalance or any number of other | things. I'd start with a blood test and go from there. If your | doctor doesn't want to order it, you can order your own labs | online and take them to a local lab draw facility (at least in | the US). | JoeyJoJoJr wrote: | For me the biggest causes are bread, pasta, and coffee. | | If I eat a gluten free vegan meal for lunch I avoid the 3pm | slump and the associated brain fog. | oh_sigh wrote: | Sounds similar to me,and I don't see anyone saying this yet, so | I'll throw in my experience: I believe I was sleeping _too | much_. I was generally in bed for 9 hrs and got 8 hrs and felt | that way, but after my kids were born and I started getting 5-7 | hours, I 've felt much perkier quicker(even if I don't need to | do anything with the kids in the morning). Before it would | literally take me half or more of a day to start feeling awake. | david2ndaccount wrote: | Get a sleep study. You can still suffer from reduced airflow at | night even if it doesn't translate to actual obstructive | events. Or it could be something else. | Levitz wrote: | You might be getting poor sleep and there are many reasons that | might be happening. | | Then there is also depression or hormone problems. | | For me personally it tends to be caffeine preventing me from | getting good sleep, which in turn makes me want to take | caffeine to focus more, which prevents me from getting good | sleep, rinse repeat. | rolisz wrote: | It's not depression - I've had that a couple of years ago, | I'm not feeling anything remotely similar. | | I don't think caffeine is an issue. I try not to drink coffee | on weekends and I still feel like this on Monday | ignite wrote: | How are the CO2 levels in your room? Do you sleep with a window | open? | swah wrote: | 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) | mgraupner wrote: | 1. Check your Vitamin D levels, if deficient use liquid drops | to supplement. Lot of people suffer from this in winter, | especially in the northern hemisphere. | | 2. Do you suffer from a stiff neck? If 1 does not help to | release muscle tension, check for Intracranial hypertension | or Intracranial pressure | (https://en.wikipedia.org/wiki/Intracranial_pressure). | alx__ wrote: | 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 wrote: | Sugar fast.... Seems impossible. Most I've done is one week | and it was absolutely horrible. I was always hungry, | despite eating a lot. | eigenrick wrote: | > Anyone got any other experiences with things that cause brain | fog? | | Allergies and Food sensitivities. | | These are often incredibly hard to diagnose because there are | foods that we eat so commonly, we don't have a good | control/variable separation for experimentation. In addition, | allergies and food sensitivities don't develop all at once. | They increase over time. This makes discovery even more | difficult. | | But it's almost always this. | | As for myself, I had severe brain fog and fatigue. It turns out | I was allergic to coffee. Looking back, I now see that it was | something that became more and more severe over about 10 years. | | It took me quitting coffee for several weeks for an unrelated | reason to discover that it was the problem. When I started | again, the stark difference in how I was felt made it much | easier to diagnose. I got lucky really. | tootie wrote: | Talk to a doctor. Idk why OP spent so much time solving what a | doctor could tell them. I had similar symptoms and doc pinned | it on narcolepsy before I could finish explaining. Googling | symptoms never turned it up. Getting tested for sleep apnea is | very easy with an at-home device. Narcolepsy is more involved. | Long COVID is another candidate. So is thyroid which requires a | blood test. | galleywest200 wrote: | When I first wake up in the morning it feels like I have | indigestion, and when I get indigestion I get really bad | brainfog. It feels like I am thinking really hard but the | thought is blank. | | Usually after an hour or two (and a few big gurgles from the | gut later) it resolves itself. | pbourke wrote: | > Anyone got any other experiences with things that cause brain | fog? | | Vitamin B-12 deficiency due to lack of intake (a risk for | strict vegan diets) or pernicious anemia, an autoimmune | disorder. The former is addressed by over the counter | supplements and the latter by injections. | | Deficiency can be diagnosed through a blood test. | pbourke wrote: | Are there no sleep clinics in the UK? | [deleted] | prakashrj wrote: | [dead] | xlii wrote: | 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 wrote: | Both are expensive to diagnose. ADHD also has a problem in that | a wrong diagnostic can harm people. | tootie wrote: | The new sleep apnea device he used is really simple and easy. | I think we'll see it utilized a lot more often. | xlii wrote: | 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. | bitL wrote: | 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-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 wrote: | 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. | ThinkBeat wrote: | > 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 wrote: | 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. | jimnotgym wrote: | 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! | drivers99 wrote: | 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. | tru3_power wrote: | Wow awesome! I never knew about that home device you could order | off of Amazon. Helps you rule out sleep apnea fairly easily! | jnwatson wrote: | 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? | nerdix wrote: | 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 wrote: | They're pretty damn expensive in the UK, certainly - around | PS2500 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 wrote: | 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 | qwytw wrote: | 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. | sfteus wrote: | Anecdotally, my wife was diagnosed in the US with sleep apnea | about 2 years ago. This included multiple GP visits to even get | an at-home sleep study that came up negative, us having to | purchase an additional at-home sleep study out of pocket that | came up positive, and an overnight sleep study. The overnight | results gave a diagnosis of severe sleep apnea. The entire | process from start to finish took at least 3 months. | | Her insurance fought every step of the way, despite having | half-decent insurance as a hospital employee. They claimed that | her BMI was not high enough to have sleep apnea, and ignored | the family history (both parents, 3 grand parents, one sibling, | three cousins). | leviathant wrote: | 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. | henearkr wrote: | 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)? | fxtentacle wrote: | "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 wrote: | 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! | goodpoint wrote: | There's more to that. Building open medical devices and | knowledge in general helps humanity as a whole. | arcticfox wrote: | 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. | fxtentacle wrote: | 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. | [deleted] | porphyra wrote: | Considering how terrible sleep apnea is for the health, you | would think that all healthcare systems and insurance companies | would take it seriously. The costs of treating heart problems | and stroke are much worse. But in practice it seems like no | healthcare system puts in more effort than begrudgingly | ordering a sleep test and then maybe a basic cpap after much | hesitation. There are stories of people literally begging their | doctors to give them a cpap. | jimnotgym wrote: | I have cpap on the NHS. I got a quality machine, quality | advice and quality follow up. It took a very long time to get | it but the care itself was very good. | GordonS wrote: | I had a CPAP machine on the NHS a few years back. The | machine was OK, a low-mid range model. But they supplied | _everyone_ with a "medium" size of mask, so I had to buy a | bigger mask myself. | | I'd say the quality of care I got was... shit. A very bored | and uncaring nurse gave me some brief instructions, and got | almost angry with me when my mask didn't fit and air hissed | out the sides. | | I figured it out myself, and had zero follow ups for the 2 | years I used the machine. They even made it difficult to | give the machine back! | Levitz wrote: | Well, just to offer some pushback in the thread, I can | imagine one reason why. | | My father has sleep apnea, he is overweight, a heavy smoker | and I reckon his daily intake of coffee could kill a small | rodent. We are Spanish and public healthcare has blessed us | with a CPAP machine... | | That he just won't use. He refuses to, complains that he | feels too uncomfortable with it. I can't recall the last time | he slept 8 hours in one go. | | And I wonder how common that is. The machine is noisy, does | look like pulled out of a teenage horror movie and takes | accustoming to. There is heavy friction for its use and that | might be a serious problem to consider. | theonething wrote: | > This meant I would have no way of seeing results for myself, | instead I would to pay out PS150 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. | JoeAltmaier wrote: | 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. | [deleted] | orangepurple wrote: | 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 wrote: | Do either have a connection to sleep apnea? | ccooffee wrote: | "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/ | quickthrower2 wrote: | Blood panel was done | orangepurple wrote: | CBC won't show low ferritin. You can feel awful if your | hemoglobin is OK but your ferritin is low. | di4na wrote: | They should. At least here they do. I know this is how we | detected my mom's hemochromatosis. | [deleted] | riceart wrote: | A CBC is a specific and very common lab test and does not | include a ferritin level. It's a separate test. | n8henrie wrote: | 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 | justsocrateasin wrote: | 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 wrote: | 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. | mordae wrote: | 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 wrote: | 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...) ___________________________________________________________________ (page generated 2023-04-10 23:01 UTC)