[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...)
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