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

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

#151

Post by sfteus »

jnwatson wrote: post #14

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?

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).

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

#152

Post by Mezzie »

LoganDark wrote: post #140
Mezzie wrote: post #121

Earlier quoted context omitted.

> 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.

> 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.

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.

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

#153

Post by aszantu »

elkos wrote: post #128

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.

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

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

#154

Post by jrm4 »

Enginerrrd wrote: post #150
meindnoch wrote: post #115

Earlier quoted context omitted.

Ventilator != CPAP machine

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 stateme…

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)

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

#155

Post by LoganDark »

jonnycomputer wrote: post #122
jonhohle wrote: post #100

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 preem…

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.

> 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.

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

#156

Post by scruple »

mabbo wrote: post #89
agrue wrote: post #27

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…

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.

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).

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

#157

Post by rdiddly »

PragmaticPulp wrote: post #24
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.

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…

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.

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

#158

Post by kevviiinn »

dv_dt wrote: post #135
kick_in_the_dor wrote: post #125

Earlier quoted context omitted.

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 a…

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.

They're trying to get things privatized like they did with rail. You can see how well that turned out

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

#159

Post by drewcoo »

jonhohle wrote: post #100

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 preem…

> 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.

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

#160

Post by mancerayder »

rewgs wrote: post #127
Auracle wrote: post #86

Earlier quoted context omitted.

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.

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…

I have bruxism myself... What's the link with sleep apnea exactly? The jaw's position pushing the tongue back?
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