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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

#121

Post by Mezzie »

LoganDark wrote: post #110
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 It's anti-outdated-underfunded-medical-systems.

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.

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

#122

Post by jonnycomputer »

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.

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

#123

Post by Angostura »

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.

Prove it.

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

#125

Post by kick_in_the_dor »

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.

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 anything. We went home to the US (making an appointment I could go on about the health system in the UK...

edit: Ha even the article talks about this! "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."

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

#126

Post by lunderdog »

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.

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's another option besides using a CPAP.

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

#127

Post by rewgs »

Auracle wrote: post #86
DMell wrote: post #52

Earlier quoted context omitted.

This is similar to my situation. I am a fit individual that is in the gym five days a week, runs marathons, backcountry skis multiple times a week, etc. and have diagnosed sleep apnea. However, I can't for the life of me get through a single night with the machine to the point where it has sat in a closet for months. I also sleep on my side or stomach so I immediately wake up to the mask blasting air at me due to a s…

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 into it, my experience seems quite common.

At this point I've just accepted my TMJ and mild sleep apnea. Nothing I've tried has helped at all.

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

#129

Post by diob »

lunderdog wrote: post #126

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. If somebody i…

Wishing you the best of luck, but when I looked into this 10 or so years ago the long term success rate of surgery seemed dubious to me.

I read that scar tissue ends up building up and making the problem worse than before, so it ends up being a solution that works until then.

I did end up having turbinate reduction / deviated septum surgery, so at least I can use comfy nasal pillows now. The turbinate reduction definitely destroyed most of my fine sense of smell, which is unfortunate. Wish I'd known that ahead of time.

Anyways, sleep apnea sucks. Wish I could fix my anatomy.

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

#130

Post by orangepurple »

justsocrateasin wrote: post #37
orangepurple wrote: post #19

Earlier quoted context omitted.

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

Any doctor worth their salt should and will do this if you come in complaining about fatigue. They did with me. Someone presenting specific symptoms isn't going to get just a CBC.

I give a moment of silence to all the people on antidepressants who are actually iron and/or vitamin deficient and don't know it.
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