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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

#111

Post by HillaryBriss »

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 can't afford to do another sleep study (American Healthcare rocks!)

I met a sleep study technician who, though convinced he actually has sleep apnea himself, said he could not afford a CPAP. Because he scrapes a living together by working as a temporary contractor for two different local sleep clinics, he does not have health insurance.

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

#112

Post by vilhelm_s »

rrggrr wrote: post #21

Accessing the clinician menu on most machines is accomplished by a quick Google search. I've adjusted my pressure several times to bring down AHI, or to reduce some side-effects of higher pressures as my weight comes down. Most machines report AHI in the main menu. My point is this... the article's premise is on target, but the situation isn't as dire as characterized.

The hack they are talking about is not to change the settings on the machine, but to let patients look at the data the machine collects in order to understand their condition better. Separately, there is a web forum community that discusses how to change machine settings based on those insights, but you don't need to use SleepyHead to change the settings.

> Most modern CPAP machines create reams of data while they’re being used. They track things like average air pressure, AHI, average use per night, mask leak rates, “flow limitation index,” and other statistics about what the machine is doing and the patient’s sleep quality. Generally, the data is stored on an SD card, which a patient takes to their doctor once every six months (some new devices also transmit data wirelessly to an app; the data available on apps, patients told me, is rarely as thorough as what the machine is actually collecting.)

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

#113

Post by abjorn »

IshKebab wrote: post #105
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…

> After another sleep study where they tried many different settings, Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.

Professionals tried different settings, that's the key difference.

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

#114

Post by Zak »

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…

> My point is that only a sleep technician or a sleep medicine doctor could have figured the right settings out.

Why? What about the process of adjusting the treatment and monitoring the results wouldn't have been possible to do at home?

I don't mean to discount the advice of experts. Certainly, an expert willing to dedicate sufficient time and attention to getting the treatment right for a particular patient is more likely to get optimal results than a patient modifying their own treatment. The problem the article focuses on, however is patients being unable to get sufficient time with experts.

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

#115

Post by beagle3 »

cmiles74 wrote: post #82
rrggrr wrote: post #21

Accessing the clinician menu on most machines is accomplished by a quick Google search. I've adjusted my pressure several times to bring down AHI, or to reduce some side-effects of higher pressures as my weight comes down. Most machines report AHI in the main menu. My point is this... the article's premise is on target, but the situation isn't as dire as characterized.

I switched my machine from constant pressure to automatic, it's made a significant difference and my AHI numbers have remained the same. So far, I haven't had to alter the pressure manually.

Which model are you using?

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

#116

Post by jazzychad »

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).

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).

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

#117

Post by db48x »

mullingitover wrote: post #101
njarboe wrote: post #90

Earlier quoted context omitted.

Almost nothing about the American healthcare system has anything to do with a free markets. From medical schools, to opening a new hospital, to pricing, to forced insurance, healthcare tied to employment, companies or government pay for almost all of it, FDA drug approval process, etc. Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all.

> Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all. The free market is simply incompatible with health care. Imagine a world where, any time you have a life-threatening health problem, you can expect to transfer everything you own to the hospital, since they have perfect leverage over you.

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

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

#118

Post by rootusrootus »

DenisM wrote: post #92
jgrowl wrote: post #30

Earlier quoted context omitted.

This was my personal experience as well. I use a ResMed machine and I remember when I first got it that the instructions warned that only technicians could make setting adjustments. After a few nights of waking up feeling like I couldn't move air through my nose, I just looked up how to do it. It only consisted of holding down two buttons at the same time. Very straight forward. I haven't tried accessing the internal…

Get a newer machine, an S10. Steal money if you have to. These are much better, not just the menu but the pressure logic.

FWIW, there is no such thing as an S10. The last of the S-series (by name at least) was the S9. The current model you want is the AirSense 10 or AirCurve 10 if you want a BiPAP.

Anyways ... I have an AirSense 10 and I have to say ... I have no idea what the S9 was like, but the current model still fucks up my levels when I wake up in the middle of the night. Not sure how my breathing is different when I'm awake, but it inevitably causes the damn machine to detect an obstruction and it will push the pressure all the way to the maximum.

A pretty common complaint, but they have not released a fix AFAIK.

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

#119

Post by tptacek »

jazzychad wrote: post #116
tptacek wrote: post #108

Earlier quoted context omitted.

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).

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 like an atomic superman, which is what drives my fascination.)

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

#120

Post by acd »

EU GDPR rights give you the right to

1 obtain access to the personal data held about you; 2.receive your personal data in a machine-readable format and send it to another controller (‘data portability’);

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

"Nevertheless, circumstances may exist when such a reproduction of the code and translation of its form are indispensable to obtain the necessary information to achieve the interoperability of an independently created program with other programs. "

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