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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

#21

Post by fxtentacle »

orzig wrote: post #20
fxtentacle wrote: post #15

"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.

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!

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.

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

#22

Post by di4na »

orangepurple wrote: post #19
quickthrower2 wrote: post #9

Earlier quoted context omitted.

Blood panel was done

CBC won't show low ferritin. You can feel awful if your hemoglobin is OK but your ferritin is low.

They should. At least here they do. I know this is how we detected my mom's hemochromatosis.

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

#23

Post by qwytw »

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?

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.

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

#24

Post by PragmaticPulp »

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 It's anti-outdated-underfunded-medical-systems.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 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.

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

#25

Post by AbrahamParangi »

hakunin wrote: post #17
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.

> 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.

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.

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

#26

Post by nerdix »

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?

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.

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

#27

Post by agrue »

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?

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

#29

Post by tablespoon »

> 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.

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

#30

Post by ifyoubuildit »

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.

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.

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