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Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

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Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#231
post #177
post #123

Earlier quoted context omitted.

It's hard to shop around when you're having a heart attack.

You're supposed to do that _before_ you have a heart attack.

Congrats. You managed make it like telco market, in that everyone will subcsribe to a group of doctor for a long-term contract.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#232

Earlier quoted context omitted.

How much fatigue though? I'm often tired but I've gotten used to it and can go through my day.

Ever fallen asleep on the shitter? Or just suddenly out of nowhere an extremely strong urge to sleep?

I fell asleep in the middle of conversations a couple of times...

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#233
post #142

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I'm more concerned if it bothers your sleeping partner.

My partner uses a CPAP machine (possibly not a "modern" one... it's 3-4 years old I believe). It's tolerable, but not great. Cuddling is not really possible once the machine is on. It makes some noise which I've mostly adjusted to, but sometimes it gets significantly louder for a while, waking me up or keeping me awake unless I put earplugs in. Occasionally it blows air on me (not sure if the mask is leaking or what)…

Every mask I've ever used automatically vented air by design. (Which yes, is really awful WRT cuddling.)

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#234

Earlier quoted context omitted.

(I am not a doctor, etc.) If you are a bit adventurous, go on Craigslist and buy a used one with a new mask for like $100. You probably are a Large mask size. Figure out how to adjust it and try it for a few days. Keep a written record of how you feel. See if it helps. Starting at 6 of whatever the unit is will probably be a good starting point.

I did this - after finding out what a sleep study and a new machine would cost, I just picked up a set from Craigslist, and the difference is like night and day. Described the symptoms to a psychologist and was basically told that yeah, it’s sleep apnea, but they can’t write the prescription until the study is done. The only annoying bit is replacing the masks and headgear - they’re considered prescription medical de…

Huh? I went several years where my insurance didn't properly cover masks / headgear / tubes etc, and I just purchased them off Amazon without any difficulty.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#236
post #184

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I have a _very_ delicately balanced sleep routine and a sort of mortal terror both of insomnia and of hypnotic drugs. If it were safe and easy I'd probably just buy the APAP and see if it made me feel better. I don't feel much urgency; I get about 6 hours a night on the regular and don't as a rule feel tired or cloudy during the day (but it's possible that with an APAP I would, relative to my current condition, feel…

just fyi the current at home test is basically a wristwatch with a light finger oxygen sensor, https://www.itamar-medical.com/watchpat-home-sleep-testing-m... . It seems that the APAPs should be able to be bought without a prescription, and besides inertia I'm not sure why it is.

Dang.. my sleep center is way behind. Had a take-home sleep study last week and I had to have the chest strap and finger sensor. Pain in the butt, but worth the data it captured. Going on APAP after trying for 6 years to work with an oral appliance after not being able to tolerate CPAP.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#237

Why is it so hard for people to write posts like this without all the bias. Saying things like, “Everybody is trying to get you in and out the door, and take some profit from your pocket.” and "He agreed that most sleep apnea patients around the world are underserved: “Doctors don’t listen and don’t have time anywhere in the world.”" just makes the whole thing feel like a snake oil salesman at work. Saying it without…

"take some profit from your pocket" is needlessly severe, but the sentiment that doctors are juggling too many patients resonates with me. "Doctors don't have time anywhere in the world" probably isn't accurate, but my doctor certainly never had enough time to listen to me, which caused me years of needless pain because of a simple misdiagnosis.

I was frustrated enough with engaging with medical professionals that I instead just adopted a healthier lifestyle. My last regular checkup was in '09, and I next visited a doctor in 2013 when I pulled a muscle in my chest, and wanted to make sure I wasn't having a heart attack.

Obviously my anecdote isn't proof that this is a systematic problem, but the fact that I see comments like this "in the wild" at least triggers my confirmation bias :)

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#238

My wife (oral surgeon) says the only real solution to sleep apnea is surgery. CPAP machines to her and bunk. I believe she moves the jaw forward to help open up the airway. Whatever works I guess.

Doesn't weight loss help many patients improve?

It usually helps, but as with most obesity-linked conditions it's not suitable on its own as a first-line treatment. The effect is small compared to CPAP, and sufficient weight loss to see that effect takes months, whereas CPAP starts working literally overnight (DME/insurance shenanigans notwithstanding).

Also, chronic sleep disruption is associated with a cluster of symptoms (impaired insulin sensitivity, lethargy, increased hunger) that make it very difficult to lose weight in a normal/healthy way. Many patients find that they lose 10-20 pounds after starting CPAP with no conscious change in their lifestyle.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#239
post #189

Earlier quoted context omitted.

Theres some level of being always tired and just being attuned to it. Not putting that diagnosis on parent, but I'd put myself in that bucket, and I'd wager its easy for old hackers like me who spent a lot of nights exploring/working/studying to the point of exhaustion during their teens and twenties.

I had this discussion on HN almost 10 years ago (wow, I'm old) and 'iamelgringo --- a (former?) ER nurse --- shut me down pretty hard. https://news.ycombinator.com/item?id=2030433

iamelgringo’s comment was pretty convincing. Thanks for referencing it.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#240
post #50

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> If you have excessive daytime sleepiness, confusion, and difficulty thinking Ive always wondered and never found data: do you have an idea of how many people with these symptoms get prescribed mental disorder medicines from not knowing the real root cause? I can picture this stuff being misdiagnosed pretty hard by some practitioners.

I don't know what the statistics are, but they definitely tried this with me. Aside from the usual sleepiness and confusion, sleep apnea can also cause anxiety. (No wonder, you're basically running on cortisol by the time it gets bad enough to notice.) I don't fit the standard profile for someone with sleep apnea, so they pushed anxiety meds pretty hard on me. Had to insist on a sleep apnea test.

Yeah, that's what Im scared of.

I personally have a lot of the symptoms. I have extremely low attention span, awful memory, I wake up 5 times a night, weird dreams, can't focus at work, can't keep track of anything for more than a few minutes...

Talking to my doctor and going through my health history, he immediately ruled out sleep apnea and started suspecting ADHD and such. While it definitely could be that, for the first half of my life I was the opposite... extremely focused, top of my class, photographic long term memory, you name it. I need to convince someone to let me do a sleep study

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