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Poor sleep drove me insane, and my long path to recovery

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Re: Poor sleep drove me insane, and my long path to recovery

#201
post #30

Earlier quoted context omitted.

I feel like that doesn't place enough weight on the bull hypothesis- the devices are bad because most things are bad, because being good is hard.

Might be that, but on a meta level: the studies are too expensive and too big of a hassle, because there's not enough demand, because not enough people are being directed to make them, instead having their problems rounded up to e.g. obesity, because that's much easier for everyone than getting a test that's very expensive... You can see a feedback loop forming here.

This, definitely this. Though apneas aren’t a component, I have a severe neurological sleep disorder that went undiagnosed largely due to physicians not ordering a sleep study. Even a sleep generalist I saw favored assuming psychological insomnia and regurgitated behavioral advice like no screens before bed and asked if I tried melatonin. As my sleep debt piled up and my sanity diminished each day, I threw my hands in the air and checked myself into the best behavioral health hospital in the U.S. They did a sleep study and low and behold I was having 100s, sometimes 1000+ involuntary movements per night while sleeping. On the road to recovery now!

Re: Poor sleep drove me insane, and my long path to recovery

#202

Earlier quoted context omitted.

How does one figure this out using their DNA.txt file? Is there a Wiki for genes?

Promethease (1) is a great site for doing this. You upload a genome (which they promise to delete), and download an HTML interactive report. The report spans thousands of studies, and it will tell you about any rare genetic disorders or interesting findings. The cost is about $18, one time, iirc. (1) https://promethease.com/

Do not stop at Promethease! I have been doing this for myself and others for the last 10 years. Promethease is great but misses several SNPs that are included in the raw data that may have an impact. Some other helpful websites:

https://www.ncbi.nlm.nih.gov/snp/

https://www.uniprot.org/

https://www.snp-nexus.org/v4/

Re: Poor sleep drove me insane, and my long path to recovery

#203
post #197

Earlier quoted context omitted.

Correct. Obesity is the leading cause in the US. A vast amount of anyone overweight in the US have sleep apnea, diagnosed or not.

You are asking for the weightist police to show up.

Doc, that's heavy.

Re: Poor sleep drove me insane, and my long path to recovery

#204
post #159

Earlier quoted context omitted.

The intensity of my sleep apnea varies from night to night, and you might be similar? Based on oxygen levels, mine also varies from subclinial to "medium" apnea. I was deemed not to have sleep apnea based on the take-home test or the in-hospital test... but I wore my oxygen-logging ring during the in-hospital test to check it was calibrated to the hospital's equipment (it was), and the specialist then diagnosed me ba…

What are O2 levels that suggest sleep apnea?

This page has some really good info: https://www.beverlyhillstmjheadachepain.com/sleep-apnea/puls....

It appears that going below 94% 5 times per hour would indicate mild sleep apnea.

Re: Poor sleep drove me insane, and my long path to recovery

#205
post #146

I recently discovered that I’m a slow metabolizer of caffeine. Via my raw 23andme data. https://you.23andme.com/tools/data/?query=rs762551 C/C genotype. https://www.geneticlifehacks.com/liver-detox-genes-cyp1a2/#C... Instead of coffee being a net positive, it actually takes caffeine 4X the time to process through my body and increases my cardiac event risk by 2X. I can drink a cup of coffee at 8am and it still impact…

Can't you drink one coffee in the morning? Also would like a source on the 2X cardiac event risk, couldn't find that in the linked article. Big if true!

The enzyme responsible is CYP1A2 if I understand correctly. Here is the paper I found that supports increased risk of a specific cardiac event to slow metabolizers. I'm not the most adept at reading medical papers so I can't verify if it claims the risk is doubled, but I think it's possible.

https://jamanetwork.com/journals/jama/fullarticle/202502

Coffee, CYP1A2 Genotype, and Risk of Myocardial Infarction Marilyn C. Cornelis, BSc; Ahmed El-Sohemy, PhD; Edmond K. Kabagambe, PhD; et al Hannia Campos, PhD JAMA. 2006;295(10):1135-1141. doi:10.1001/jama.295.10.1135

Re: Poor sleep drove me insane, and my long path to recovery

#206

Earlier quoted context omitted.

Yes, it costs you an arm and a leg in the US if you don’t have a good insurance

My sleep study cost roughly $2300 with insurance (US). I purchased my own machine and supplies because going through insurance requires you to rent the machine. It phones home and if you don’t use it every night it impacts your coverage! No thanks. You need a script to purchase the machine too which you need a sleep study to get. Then billed periodically for supplies. Also, the initial settings they configured for th…

Heh, pretty excited that my cpap machine is coming today

Re: Poor sleep drove me insane, and my long path to recovery

#207

This is quite raw and I'm actually somewhat afraid to share this. But I think sleep apnea is criminally under-discussed and underdiagnosed. It can f your life up sideways and can take years to diagnose. So sharing my story and hope I can advocate for it. If you have sleep apnea, no amount of sleep gadgets, good habits, exercise, will help you. You must fix the root cause

> But I think sleep apnea is criminally under-discussed and underdiagnosed. I agree that it’s under-diagnosed in people who have it, but it’s actually discussed very widely across social media and in person. I have some sleep medicine professionals in my extended social circle. It’s common to hear stories of people coming in convinced that they must have sleep apnea after reading about it online, but their sleep stud…

> One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything.

Without commenting on the behavior of the doctor in question, I'd like to offer a rebuttal to this point. CPAP is the gold standard for apnea treatment, but there are a lot of reasons people don't stick with treatment. It's hard enough to get used to sleeping with something on your face at night, and even harder if your machine isn't configured to the exact right settings, something that requires experimentation and data.

The machine sends telemetry to your doctor, but it's just averages for the night and offers no useful insight. Doctors literally have no tools to help you debug the process. My doctor barely tried. She tossed a few mask samples my way. I really needed support and their office told me that I should see a therapist instead because my insomnia was in my head. I was having less than 5 events per hour with the machine on, who cares if I was waking up choking 3 times a night? I can't fully blame them, because they didn't have any more information to go on.

There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful. I didn't go see a therapist, and instead resolved to get to the root of the problem. From start to finish it took me a year to get a full night's sleep with a CPAP, and that was only through learning to read and analyze the data. It was a tremendous effort, and the only reason I didn't give up was because I had just been tired for so many years that there was no other option.

CPAP isn't a pill that you can swallow and just start feeling better. My point is just that people not sticking to CPAP is very very common. I'd be curious to see a source linking this to incorrect diagnoses.

Re: Poor sleep drove me insane, and my long path to recovery

#208
post #146

I recently discovered that I’m a slow metabolizer of caffeine. Via my raw 23andme data. https://you.23andme.com/tools/data/?query=rs762551 C/C genotype. https://www.geneticlifehacks.com/liver-detox-genes-cyp1a2/#C... Instead of coffee being a net positive, it actually takes caffeine 4X the time to process through my body and increases my cardiac event risk by 2X. I can drink a cup of coffee at 8am and it still impact…

CYP1A2 does not only metabolize caffeine, it is also involved in the metabolism of various endogenous substrates, including fatty acids, steroid hormones and vitamins.

Focusing only on caffeine metabolism is one of the pitfalls of 23andme's reports.

This gene change might mean you have higher cholesterol as well.

To see everything this gene does check here: https://www.uniprot.org/uniprotkb/P05177/entry

Re: Poor sleep drove me insane, and my long path to recovery

#209

This is quite raw and I'm actually somewhat afraid to share this. But I think sleep apnea is criminally under-discussed and underdiagnosed. It can f your life up sideways and can take years to diagnose. So sharing my story and hope I can advocate for it. If you have sleep apnea, no amount of sleep gadgets, good habits, exercise, will help you. You must fix the root cause

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3313633/#:~:tex...

Interesting study on the affects of sleep breathing disorders in young people as they age and subsequent behavioral problems.

Re: Poor sleep drove me insane, and my long path to recovery

#210

Very useful read. My friend, an osteopath, says neck issues also can create breathing obstructions, and it makes a good deal of people wake up in the middle of the night and stay awake, even though they don't even think it's a problem. Symptom to watch for: you wake up and your nose is stuffy, can't breathe through it, but there's no snot. And in 5-15 minutes it gets clear. If you have it, it means lymph flow out of…

This sounds like some of the pseudoscience my friend was talking about before he had psychotic episode. Is there any legitimacy to Osteopathy?

They can prescribe medicine and do surgery. I don't think there's much woo there.

https://en.wikipedia.org/wiki/Comparison_of_MD_and_DO_in_the...

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