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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

#171

Post by ridgeguy »

ergothus wrote: post #100
WJW wrote: post #73

Earlier quoted context omitted.

Does it bother you at all while sleeping?

I just started a about a month ago, and let me share my experiences that I don't see others report often in response to this question. (The responses are out there, but they are harder to find) There are many "masks" available - from covering the face to a nose mask to a tube under the nose (like an oxygen, but with a much fatter tube, including running up the sides of the face to the 1-1.5 inch diameter tube that ru…

Thanks for posting your experience.

I use a full face mask (Resmed thing). It has one hose connected to the center of the mask. I'm able to sleep on either side (side sleeper by preference). My pillow doesn't interact with the centrally-located hose.

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

#172

Post by rhino369 »

khendron wrote: post #104
WJW wrote: post #73

Earlier quoted context omitted.

Does it bother you at all while sleeping?

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

My wife loves mine. Makes me stop snoring. She doesn't like the comfortable masks because they leak more (which makes a rushing noise).

She'll wake me up and make me wear it if I don't.

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

#173

Post by outworlder »

tptacek wrote: post #108
rjurney wrote: 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…

Central apnea is the scary story people tell on the forums about why not to just get an APAP and skip the sleep study. (I'm sort of suspicious that I have some kind of apnea since my wife says she thinks I do, but there is just no way I'm doing a sleep study, so this is a topic of some minor fascination for me).

> but there is just no way I'm doing a sleep study

Dude. If you even have the suspicion of having sleep apnea, please get yourself tested. I do not care what your reasons are. There is no way your reasons are more important than the increased risk of stroke and heart attack, among other chronic conditions. If you do have sleep apnea, your brain (and in fact, the whole body) is getting chronically deprived of oxygen, with all the ill effects this causes.

Do the sleep study. Nowadays you can do it at home with a small device, in the comfort of your own bed. No medication is involved.

If you do not find indications of sleep apnea, congratulations. But this is not something you can usually figure out on your own, unless it is very severe. The cognitive decline is gradual, any chronic effects take a long time to get noticed.

When you start using a *PAP machine, only then you figure out, as the brain fog is suddenly lifted and you realize how much you have been handicapped.

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

#174

Post by wbkang »

tptacek wrote: post #137
mabbo wrote: post #132

Earlier quoted context omitted.

I did my sleep study when I was 24. There were no drugs involved. It's just a bunch of sensors taped to you while you sleep with a camera watching you. Bit odd of an experience, but nothing that should concern you much.

My understanding is that if you're not going to fall asleep in the setting of the sleep study, they'll Ambien you out.

This does not reflect my experience. Besides, taking Ambien would show different brain waves than actual sleeps so it would make it less useful as well.

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

#175

Post by PhantomGremlin »

saint_fiasco wrote: post #9
Aloha wrote: post #3

I think the risk of death is probably overstated, as these people have often gone decades without a CPAP, and lived just fine.

Maybe a badly configured CPAP machine is worse than nothing at all? The article says the data they collect include something called "mask leak rates". That means the machine has an airtight mask and could in principle suffocate you if it malfunctions.

That means the machine has an airtight mask and could in principle suffocate you if it malfunctions.

One of the most popular masks is the ResMed Airfit P10.[1] This is a "nasal pillows mask". It is airtight, but only on your nose.

If the mask malfunctions or your nose clogs up, then instead of suffocating, you can open your mouth to breathe.

A full-face mask can presumably malfunction, even though it has a "failsafe" feature to let you breathe.

[1] https://www.resmed.com/us/en/consumer/products/masks/airfit-...

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

#176

Post by outworlder »

tptacek wrote: post #151
tomcam wrote: post #149

Earlier quoted context omitted.

Have gone through 3 sleep studies. No drugs were offered and I never got to sleep. You would be fully within your rights to decline any such offer and they wouldn’t give a shit anyway. Given your sleep routine I promise the study would be pure hell. They are for me. But I need that APAP.

See! You get it! If I felt I had an urgent problem I'd just deal with the study, but "feeling tired during the day" is very, very low on my list of complaints. I sort of feel like I get away with murder, biologically; I go to sleep at 1AM and get up at 7AM and do just fine. On the other hand, my wife tells me I snore and randomly stop breathing, so I have reason to believe there's something going on.

> On the other hand, my wife tells me I snore and randomly stop breathing

Snoring is "fine". There is some resistance, but it's likely you can still breathe sufficiently. The problem is when snoring stops.

By the way, my first sleep study was crap and I couldn't sleep and no conclusions were drawn.

The second was at home and I had a cpap machine waiting for me one day after I returned the results.

> If I felt I had an urgent problem I'd just deal with the study

By the time it's urgent you are already deep into other issues, such as high blood pressure. And now you have more than one issue to deal with. This is like the biological version of tech debt.

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

#177

Post by db48x »

abjorn wrote: post #123
db48x wrote: post #117

Earlier quoted context omitted.

I disagree. If doctors had to compete with each other, then none of them could charge so much.

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.

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

#178

Post by bigbluedots »

tptacek wrote: post #119
jazzychad wrote: post #116

Earlier quoted context omitted.

Curious why you won't do a sleep study? I recently went through this whole process, and it was pretty fascinating to see the data they collected from all the sensors (also confirming that I have mild OSA).

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…

Given that you get 6 hours of sleep and are not tired/foggy during the day I'd say it's unlikely you have sleep apnea.

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

#179

Post by outworlder »

diob wrote: post #23

I have to adjust my own pressure as well, since I can't afford to do another sleep study (American Healthcare rocks!). The biggest difference in my sleep came from when I purchased a machine that auto adjusts based on what you need, so no one could lock me out from getting the best healthcare possible.

I spent a total of $150 with my provider, this includes the sleep study and a follow up, $0 for the machine itself(Airsense 10).

If anyone else is in the same boat, please check with your provider first. It may not be that expensive and in some cases there are even discounts – not because they care about you, but because treating the conditions that sleep apnea causes is so much more expensive.

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

#180

Post by outworlder »

HillaryBriss wrote: post #109

> “If things go wrong, they may end up dead in their bed." They make it sound kind of risky, but ... does anyone have a way to quantify the risks here? I mean, is adjusting your own CPAP machine as dangerous as say, driving a car across country, or drowning on a trip to the beach, etc?

Ear damage may occur. Death though? I'm skeptical.
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