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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

#221
post #194
post #193

Earlier quoted context omitted.

How do people obtain regulated medical devices like CPAP without a prescription? I assume a sleep study is required to get a prescription from a doctor.

I think there's a loophole in that you can buy CPAP machines without a prescription from second-hand sellers. Last I checked it looked pretty inexpensive, too. So, really, you don't need a prescription to try one if you really wanted to. There's probably some safety concerns, but I've become cynical about a lot of it. Doctors of course want everyone to go to the doctor first, but is it really that dangerous to use a…

>There's probably some safety concerns

Apparently dry nose and skin irritation. I wouldn't worry too much about it. But if you can get a doctor's appointment you might get an insurance to pay for your experiment.

https://shop.edensleep.co.nz/how-does-cpap-work/#

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

#222
post #139
post #80

Messing with your own PAP settings can be a bad idea. I have complex apnea - a little bit of obstructive apnea (small pie hole), a little bit of central apnea (brain messages to breathe don't get through). I had an Auto BiPAP machine, which is like an intelligent ventilator that varies settings to determine the best one. A sleep study plus home monitoring indicated that the machine made my apnea worse! After another…

Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment. That being said, the regulations around medical devices and healthcare have evol…

>Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment.

>That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control.

I completely agree. I think there should just be laws governing this though. It needs to be an adult making the decision that is sufficiently smart to understand the risks. And then you sign something that absolves others if you take that personal risk and can't sue if it harms you.

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

#224

Why do people need CPAP machines, why can't you simply sleep on your side? Most primates instinctively know how to sleep in the best positions ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119282/ ) humans insist on sleeping on their backs which other primates instinctively know is dangerous.

Plenty of side sleepers have sleep apnoea or snore.

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

#225
post #68

I did read an article early this year where an individual died on a camping trip as he was not carrying his CPAP. So, yes, it does vary for each individual but sleep apnea can be deadly. Also, I cannot recommend enough anyone showing any symptoms of sleep apnea to get it checked out. I started using CPAP just over 2 years ago now and it has been a life changing experience, even though the study suggested only a 'Mild…

I wasn't aware it was possible to die from apnea - does the body not wake itself up when oxygen drops?

I'm very curious about the answer to this. I would expect the answer to be "yes." The current fad in alternative health groups is to tape your mouth shut while sleeping in order to improve sleep quality. I haven't heard of anyone dying yet even though it sounds pretty scary.

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

#226

Earlier quoted context omitted.

The primary symptoms are snoring and fatigue.

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

For me, I'd crash straight after work one day a week, I just couldn't last till the evening (I work an office job, so no physical tiredness). Also, I recall driving on a highway was terrible, I'd start nodding off after 10mins.

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

#227
post #73

Earlier quoted context omitted.

Does it bother you at all while sleeping?

Not once you find the right mask and get used to the constant pressure. It is truly life changing in terms of energy level and your own health. I switched from a full face mask, which leaked air to nasal pillows (resmed P10) and I am happy.

I really struggle with this 5 years in... I open my mouth when I sleep, probably because of adenoids (had them removed twice, keep growing back), so I can't use nose pillows/masks, and the full face mask leaks badly as my bottom jaw is smaller than usual when compared to the top one. I though about chin straps, but my damn head is too big for most of them...

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

#228

Why do people need CPAP machines, why can't you simply sleep on your side? Most primates instinctively know how to sleep in the best positions ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119282/ ) humans insist on sleeping on their backs which other primates instinctively know is dangerous.

That actually something I find interesting. I kind of assumed you were supposed to sleep on the back and felt bad about just not being able to. It's just so uncomfortable. Makes me happy to know there isn't anything wrong with me? I hope!

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

#229
I wrote the Mac/Linux driver for the Fisher & Paykel Healthcare Icon CPAP device. The principle of operation is very simple: just blowing air into your face while you're sleeping.

The trouble is, it's not pleasant to wake up with air blowing at you. So they have an algorithm to detect when you're sleeping peacefully or about to wake up, based on your breathing pattern. It turns off the pump when you're waking up.

The CPAP plugs in with USB-serial, but the connector is buried deep inside the device so it needs a special adaptor just to reach the pins. The protocol is obfuscated and checksummed, but not encrypted.

I'm looking for a job now, so if anybody would like someone with experience in this area, please reach out.

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

#230
post #68

I did read an article early this year where an individual died on a camping trip as he was not carrying his CPAP. So, yes, it does vary for each individual but sleep apnea can be deadly. Also, I cannot recommend enough anyone showing any symptoms of sleep apnea to get it checked out. I started using CPAP just over 2 years ago now and it has been a life changing experience, even though the study suggested only a 'Mild…

I wasn't aware it was possible to die from apnea - does the body not wake itself up when oxygen drops?

The way I got it explained was that it's the heart that can't handle the stress the lack of repeatedly not getting enough oxygen causes. The damage it has done to my heart before I got diagnosed is also not reversible, the goal is to not let it get worse, stay healthy, etc. I've been a patient for over 8 years, lost a lot of weight, didn't help, so for me it's imperative that I can see my own data and grasp what is going on. As to answer your question, yes and no, you don't really wake up but your deep sleep gets interrupted which causes you never to feel rested, especially if you have a severe case, like more than 30 AHI per hour (like me).
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