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

560 pointsby decodebytesabout 2 years ago

43 comments

yositoabout 2 years ago
&gt; The morale of the story, you need to sometimes tackle your own health and take matters into your own hands<p>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&#x27;s not anti-science to take your health into your own hands. It&#x27;s anti-outdated-underfunded-medical-systems.
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elricabout 2 years ago
A couple of things:<p>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&#x27;m not kidding. Thank you, Sleeprider, for all that you do.<p>2. OP really should pursue the NHS route. Maybe it&#x27;ll take a while, but once the gears are in motion he&#x27;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).<p>3. If you have a bed partner who tells you that you&#x27;re not breathing, or that you snore loudly: get tested and get treated. Don&#x27;t shrug it off. Deal with it. The sooner, the better.<p>4. CPAP doesn&#x27;t have to be unsexy. I really don&#x27;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]<p>5. AHI is a largely meaningless number. &quot;Mild&quot; apnea can be just as devastating as &quot;severe&quot; apnea. AHI only looks at events&#x2F;hour, it doesn&#x27;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 &quot;normal&quot; AHI of 5 and still get absolutely trash sleep because of un(der)treated sleep apnea.<p>[1] Nasal pillow mask: <a href="https:&#x2F;&#x2F;www.resmed.com.au&#x2F;healthcare-professionals&#x2F;products&#x2F;masks&#x2F;airfit-p10" rel="nofollow">https:&#x2F;&#x2F;www.resmed.com.au&#x2F;healthcare-professionals&#x2F;products&#x2F;...</a>
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agrueabout 2 years ago
Sleep apnea is strange.<p>Good news! We have a diagnosis, sleep apnea. You&#x27;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&#x27;s because people are overweight but you aren&#x27;t.<p>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?
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roliszabout 2 years ago
Anyone got any other experiences with things that cause brain fog? I don&#x27;t think I have sleep apnea (my wife often falls asleep after I do and she doesn&#x27;t report any kind of weird breathing issues for me, nor snoring).<p>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&#x27;t wake up during the night.
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lunderdogabout 2 years ago
I had surgery to expand my upper jaw and palate three weeks ago, and the improved ability to breathe during the night and day is absolutley life-changing. I used to wake up multiple times a night with a pounding heart, and could never get a restful sleep. Within a few days after surgery, I could sleep through the night and my blood pressure dropped enough to start weening off my hypertension medication.<p>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&#x27;s another option besides using a CPAP.
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fxtentacleabout 2 years ago
&quot;the National Health System have yet to even send me a letter&quot;<p>That&#x27;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.
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netman21about 2 years ago
Why not look at the underlying cause? I was diagnosed with sleep apnea when I was 50. An oral surgeon wanted to carve out my tonsils and uvula.<p>I changed my diet and began exercising. Lost 50 pounds. My sleep apnea went away and I no longer even snore.<p>The downside of getting diagnosed is my life insurance company dropped me.
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sinuhe69about 2 years ago
When I read the first lines of the article, “sleep apnea” already jumped to my mind. Good for the author of finding and fixing the root cause of his sleep deprivation. No ways a few hours of sleep could be normal.
mordaeabout 2 years ago
Here&#x27;s a story.<p>We lived in a &quot;commie block&quot; and we could hear our neighbor snoring super loudly during summer when we all had our windows open for the night.<p>One night, we heard him repeatedly stop breathing and then gasp for breath. So when I&#x27;ve seen him the next day by the elevator I told him: &quot;Sorry to bother you, but we can hear you snoring&quot; and he has gotten super apologetic. But I continued, &quot;yeah, we are used to it so don&#x27;t sweat it. The trouble is, you are stopping breathing recently. You may have sleep apnea. Go see a doctor, STAT. You don&#x27;t want your brain to die off due to a lack of oxygen.&quot;<p>He told me in a couple of weeks he&#x27;s got a CPAP and is working to shed some weight off. In a year he went back to a more normal weight.<p>He also started dating our neighbor. Curse those open windows... :-)
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elkosabout 2 years ago
I&#x27;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.
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xliiabout 2 years ago
I find it somewhat odd that modern medicine don&#x27;t screen for stuff like sleep apnea or ADHD (and similar).<p>They&#x27;re quite frequent (sleep apnea - 17% from the article, ADHD - 5-20% depending on the study) and impact peoples&#x27; lives quite severely both on quality and productivity fronts.
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55555about 2 years ago
Okay, serious question: The author of this blog post sleeps with his partner, and then discovered he spent 20 seconds of each minute gasping for breath, 40 times per hour. (Something like ~this). How did his wife not notice and tell him? Now I&#x27;m paranoid that I have sleep apnea.<p>What&#x27;s the cheapest wearable or device that can probably tell you if you have apnea?
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jimnotgymabout 2 years ago
I have sleep apnea after covid... and burn out. Cpap was a revelation but not a silver bullet.<p>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!
pengaruabout 2 years ago
If you share a bed with someone you don&#x27;t need any of this tech b.s. to know you&#x27;re choking yourself awake dozens of times an hour.<p><i>Listen</i> to the people you actually share a home with if they inform you you&#x27;re not sleeping well (and are probably interfering with their sleep too).<p>- Someone who grew up in an utterly dysfunctional household in the sleep quality department. Denial so deep, unreliable &quot;science&quot; would be abused as &quot;proof&quot; of there not being a problem.<p>** 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&#x2F;combativeness, often promoted by consistent lack of sleep (surprise!), get an effing hearing aid already. You&#x27;re destroying your relationships with your family.
jnwatsonabout 2 years ago
In the US, the author would have had a sleep study done and it would have been diagnosed in a day. Do they not have those in the UK?
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JoeAltmaierabout 2 years ago
Medicine according to averages (almost all practicing medicine) may be wildly inappropriate for some. Not usually; that&#x27;s why averages are sensible to use. But if it isn&#x27;t working for you, time to try something else.
jonhohleabout 2 years ago
I’m going through this right now and it feels like everything Americans have complained about socialized healthcare is now true in the US as well: long wait times to see providers, providers that churn through patients like their doing oil changes, providers that just push you along to the next step in a playbook without considering individual needs.<p>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.<p>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.<p>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.<p>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?
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s5300about 2 years ago
Dealing with untreated sleep apnea right now &amp; it fucking sucks<p>Breathing properly through your nose when awake &amp; asleep turns out to be really important. I’m incredibly curious on how previous generations knew &amp; 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.
khazhouxabout 2 years ago
I sleep with a short silicone tube jammed into each nostril, and I highly recommend it to everyone!!<p>I get what feels like twice the amount of air, with zero effort.<p>It was very uncomfortable the first couple of nights, but now I don’t even feel it, and I now <i>always</i> use them to sleep.<p><a href="https:&#x2F;&#x2F;a.co&#x2F;d&#x2F;18eLtdw" rel="nofollow">https:&#x2F;&#x2F;a.co&#x2F;d&#x2F;18eLtdw</a>
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drivers99about 2 years ago
This tracks with what I have. Still waiting to obtain my ASV (the second machine he tried; I also have central and obstructive sleep apnea). I had a home sleep study, then a sleep study with a CPAP, then another sleep study with an ASV the following week. Been waiting 6 weeks since then for a call back from the sleep clinic to actually get the ASV. I tried calling them after 2 weeks and they said I had to wait for them to call me which takes 2 to 4 weeks (it&#x27;s been 6; I&#x27;ll call them tomorrow).<p>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&#x27;m sure I can sleep with it now. Also the ASV and the masks available now seem to work a lot better.
aszantuabout 2 years ago
For me, green vegetables seem to trigger nervousness and sleeplessness, when I still ate them, I&#x27;d wake up at night and think someone is in my room to murder me. I&#x27;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.<p>Been on an elimination diet and trying around for 5 years now, there seem to be some pointers towards SIBO, but I haven&#x27;t managed to fast long enough to do the test yet.<p>When I eat the wrong thing, it usually takes 3-4 days for any effects to show. Would make sense if it&#x27;s fermentation or rot in the intestines that&#x27;s triggering this. Hope you&#x27;ll get well soon!
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maxehmookauabout 2 years ago
How strange that the only way to get one of those devices is via the NHS. Usually if you have to wait too long, or something isn&#x27;t available in the UK, there&#x27;s a private medical service more than willing to take your money!
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theonethingabout 2 years ago
&gt; This meant I would have no way of seeing results for myself, instead I would to pay out £150 each time to get the consultant to analyse for me.<p>I think I would have just paid the money (at least for a few months to see if I&#x27;m getting my money&#x27;s worth) rather than going through all that trouble of trying out different machines, etc.<p>That&#x27;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.<p>I&#x27;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.
bitLabout 2 years ago
Some people seem to have luck by taking 100mg vitamin B1 before sleep for central apnea:<p><a href="https:&#x2F;&#x2F;www.cpaptalk.com&#x2F;viewtopic&#x2F;t176555&#x2F;Found-a-vitamin-that-has-DRASTICALLY-reduced-my-Central-Sleep-Apnea.html" rel="nofollow">https:&#x2F;&#x2F;www.cpaptalk.com&#x2F;viewtopic&#x2F;t176555&#x2F;Found-a-vitamin-t...</a><p>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?
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hellohihello135about 2 years ago
CPAP works great for many people who have severe sleep apnea. It’s much more difficult to help people who have mild OSA &#x2F; UARS. They don’t benefit from CPAP to the same degree.
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Jonovonoabout 2 years ago
&gt; I would have gone to bed dressed in a pink gimp suit, if it meant I might I have got a decent nights kip.<p>This line had me laughing out loud. Amazing article, glad you found what worked for you!
ropableabout 2 years ago
It&#x27;s interesting, but being even casually interested in strength training and muscular hypertrophy means that I read as far as the second paragraph and thought &quot;It&#x27;s probably sleep apnea&quot;. It&#x27;s a relatively common issue in larger individuals, including those carrying a lot of muscle. Probably better than half the heavyweight powerlifters&#x2F;strongman athletes that I know use a CPAP.
b1c1jonesabout 2 years ago
I saw an otolaryngology, got a sleep study, was prescribed a cpap with the study recommended pressure, and I am fine. I suppose I could have wandered the tech desert, but this is my health we are talking about. I have other tasks I am better suited to do than wander through a field I had zero training in. I approach my cardiology issues the same way.
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henearkrabout 2 years ago
It would be interesting to find out the root cause of this central apnea.<p>Maybe that&#x27;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)?
ericmcerabout 2 years ago
Anyone want to join me in making a dating app for people who need CPAP machines to sleep? I am semi-serious haha
tablespoonabout 2 years ago
&gt; Night of the living brain fog dead or how I hacked myself better via open source<p>The use of &quot;hacking&quot; in the title is unfortunate, since it strongly brings to mind software engineers confidently loading up on weird supplements to do stuff like &quot;boost intelligence&quot; without much understanding of what they&#x27;re doing.<p>This article is very much not that, and is very sensible.
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orangepurpleabout 2 years ago
The word iron did not show up a single time in this article. It is extremely important to make sure your iron and ferritin levels are sufficient or you will feel tired and depressed all the time.
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graffixabout 2 years ago
Three sentences in, it was obviously sleep apnea. Guess the author was going for dramatic irony. I&#x27;m curious why he didn&#x27;t do a cursory Internet search for his symptoms.
tikuabout 2 years ago
Why are CPAP machines still so expensive. I saw a teardown of one, it was not that special. Just lots of foam.. (that needs to stay in place haha).
mattgreenrocksabout 2 years ago
Curious: can the Apple Watch detect this sort of thing?
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zackmorrisabout 2 years ago
There&#x27;s going to be a lot of variation between people, so I&#x27;ll just project my experience with this:<p><pre><code> * 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&#x2F;4&quot; surgical tape (or 1&#x2F;2 ripped down the center) about 2&quot; 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 -&gt; food sensitivities -&gt; 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&quot; 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&#x27;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&#x27;t have to work so hard </code></pre> 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.<p>I also discovered that the anxiety from ADHD symptoms (I&#x27;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&#x2F;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.
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tru3_powerabout 2 years ago
Wow awesome! I never knew about that home device you could order off of Amazon. Helps you rule out sleep apnea fairly easily!
mancerayderabout 2 years ago
I have a chance of having sleep apnea since my sleep is atrocious and extremely light, but I&#x27;m not overweight and I also can&#x27;t sleep on my back or side, meaning a machine with mask ain&#x27;t gonna cut it. Thus I&#x27;ve not even bothered. Also I wouldn&#x27;t fall asleep in a sleep study location (I can&#x27;t sleep outside of my bed, with any noise, lights, etc)
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pbourkeabout 2 years ago
Are there no sleep clinics in the UK?
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ThinkBeatabout 2 years ago
&gt; The morale of the story, you need to sometimes tackle your own health and take matters into your own hands<p>I am not a doctor, nor am I a lawyer.<p>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.
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musha68kabout 2 years ago
“The John Snow Project has set out some of the growing body of evidence that suggests COVID-19 is having serious adverse long-term impacts on human health. This evidence is, however, being subjected to the same ‘doubt as product’ approach that was successfully deployed by the tobacco lobby to slow the introduction of public health measures to protect people from the harms of smoking, and the underlying economic incentive is similar to the rationale of the cigarette companies. While attendees at the World Economic Forum in Davos had to be vaccinated, wear masks, undergo regular COVID-19 tests, and used advanced air ventilation, filtration and treatment to reduce their risk of infection, the costs of such protocols to protect the general public are widely viewed as prohibitively expensive.”<p><a href="https:&#x2F;&#x2F;johnsnowproject.org&#x2F;insights&#x2F;merchants-of-doubt&#x2F;" rel="nofollow">https:&#x2F;&#x2F;johnsnowproject.org&#x2F;insights&#x2F;merchants-of-doubt&#x2F;</a>
acyouabout 2 years ago
Open source is not how we got here. We now reap the benefits of centuries of well organized publicly funded research and private for profit business activities. We should not misunderstand or misconstrue history.<p>What technology and advancement has open source really given us, that isn&#x27;t just piracy when it comes right down to it? I realize I am asking a selection of would-be pirates. Genuine question.<p>We skim the cream off the top and tend to take all the credit.
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znpyabout 2 years ago
&gt; I accumulated a laundry list of attempts to try and resolve the situation, including lots of sleep hygiene ‘hacks’.<p>[long list of mumbo-jumbo tik-tok-style “lifehacks”]<p>Anything but seeing a doctor?
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