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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

#171

Post by WaxProlix »

Mezzie wrote: post #121
LoganDark wrote: post #110

Earlier quoted context omitted.

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 impossib…

> 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.

What - if any - nontraditional treatments have you ended up gravitating towards for that?

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

#172

Post by arghnoname »

aidenn0 wrote: post #146
version_five wrote: post #136

Earlier quoted context omitted.

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?

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…

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.

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

#173

Post by drpancake »

decodebytes wrote: post #91
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.

I commented on this above but I think this is because ASV users need to be screened for heart issues first!

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

#174

Post by swah »

rolisz wrote: post #168

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.

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)

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

#175

Post by redundantly »

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…

> 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.

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

#176

Post by 015UUZn8aEvW »

jrm4 wrote: post #98
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…

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.

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

#177

Post by docandrew »

rolisz wrote: post #168

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.

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).

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

#178

Post by docandrew »

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.

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.

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

#179

Post by Vingdoloras »

LoganDark wrote: post #142
oefnak wrote: post #117

Earlier quoted context omitted.

Me it reminds of that guy who DIY genetically modified a virus to cure his lactose intolerance (for a year).

> reminds of that guy who DIY genetically modified a virus to cure his lactose intolerance (for a year) That's awesome, have a link?

Not the original video, but a follow-up one by the same guy talking about results and future plans: https://youtu.be/aoczYXJeMY4
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