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.
Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
21–30 of 261 posts
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#22Oh, look at that, another patient let down by the American medical system, forced to advocate and find the treatment they needed for themselves. Go figure quality of treatment is set aside for business incentives when healthcare is turned into a business.
I wouldn't be so cynical if I hadn't been turned away with shrugs by three specialists and told, "well you can just take pictures of her now" Regarding a rapidly growing bright red tumor, a hemageoma, on my daughter's eyelid. My daughter would've potentially been blinded and branded a pariah if I didn't research treatments using my university's medical db. Literally one week of a topical beta blocking ointment with no adverse side effects and the tumor vanished. The thought of all the children wearing unsightly tumors on their faces, some even going blind, all because their pediatrician can't bother to read a journal makes me sick.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#23I 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.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#24Earlier quoted context omitted.
That's not entirely true. If you mess up you can end up rebreathing your own air in the tube. It has small holes that are supposed to allow fresh air to mix in even if the machine is not providing any. But they are small. If you are a normal sleeper you would normally wake up and remove the mask if you feel suffocated. (For example a power outage.) If you are with someone who uses such a machine you can test it - unp…
I've slept long into a power outage and woken up with a headache and significant disorientation and my mask still on. Really upsetting. And with an AHI off the charts, I may very well die without one.
Might be worth investing in an Uninterruptible Power Supply for it if you haven't already.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#25I think the risk of death is probably overstated, as these people have often gone decades without a CPAP, and lived just fine.
I have an AHI of 79. Sleeping without a CPAP is like rolling the dice on death.
It's also something I can't change through diet. I'm a very in shape individual. My anatomy just isn't right.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#26My 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.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#27Earlier quoted context omitted.
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. Ummm... no. If the CPAP machine fails, you'll just start sucking air in the holes that are normally used to expel your exhalations. (When you exhale, the air goes out through these vents, not back into the machine.) It's significantly less airflow, and will cause you to wake up, but it's not going to suffocate you.
But isn't the point of sleep apnea that the lack of air does not wake you up?
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#28Earlier quoted context omitted.
> unplug the machine, The only machine I've had experience with (a parent) had an alarm for power loss. Is that somehow not standard/a requirement? Edit: As I think about it, there was an associated oxygen machine, and that was the device with an alarm for power loss. Nevertheless, it seems like an audible alarm on a CPAP would be a really good idea.
Nope. My machine is plugged in where my bed hits the wall, every now and then the bed moves a little in the night and unplugs the machine and I wake up because I am having trouble breathing. But my guess is that this is only a serious hazard for people with very serious health problem, or the elderly. If you are one of those, don't F around.
Edited my original, it was probably that way on the one I mentioned too.
I am a little surprised to find that CPAP use is considered non-serious though. (Being halfway to a BiPAP? Holy moly.)
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#29What other device hacking subcultures exist for medical devices?
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#30Accessing 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.
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 data, but I've been content enough with the breakdown that they provide each night.