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

decodebytes.substack.com

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

#91

Post by decodebytes »

maxehmookau wrote: post #34

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!

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.

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

#92

Post by PicassoCTs »

Out_of_Characte wrote: post #44
PragmaticPulp wrote: post #24

Earlier quoted context omitted.

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 som…

On the flipside, there are also a small selection of unproven treatments that work better than standard care.

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.

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

#94

Post by GordonS »

jimnotgym wrote: post #70
porphyra wrote: post #65

Earlier quoted context omitted.

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…

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.

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!

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

#95

Post by joshuaissac »

b1c1jones wrote: post #79

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.

> 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.

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

#96

Post by jonhohle »

mattgreenrocks wrote: post #83

Curious: can the Apple Watch detect this sort of thing?

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.

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

#97

Post by dghughes »

haliskerbas wrote: post #10
55555 wrote: post #5

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?

Not a doctor but an audio recording of a night of sleep could help while you wait for a different device.

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.

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

#98

Post by jrm4 »

yosito wrote: post #13

> 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.

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.

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

#99

Post by ccooffee »

mattgreenrocks wrote: post #83

Curious: can the Apple Watch detect this sort of thing?

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...

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

#100

Post by jonhohle »

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?

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