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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

#71

Post by patrickg_zill »

snuxoll wrote: post #65
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 know I suffer from sleep apnea (poor sleep quality, relatives have noticed me stop breathing for brief periods while asleep, loud snoring) but I literally cannot bring myself to get a sleep study done because I know it's not going to be cheap, and to top it off I don't even know how expensive it's going to be in the first place. It's not like I can't afford to pay either, I do have some money stashed in my HSA but…

(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.

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

#72

Post by armatav »

bcassedy wrote: post #54
werdnapk wrote: post #26

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.

Sounds like your wife isn't well read on the topic. CPAP is life saving treatment for some. Sleep apnea surgeries have poor success rates https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480570/

"oral surgeon"

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

#73

Post by WJW »

surds wrote: 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…

Does it bother you at all while sleeping?

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

#75

Post by coredog64 »

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.

Peter Farrell (ResMed founder) has an oft-repeated quote to the effect of “The only way a CPAP machine can harm you is if someone hits you over the head with it.”

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

#76

Post by auntienomen »

snuxoll wrote: post #65
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 know I suffer from sleep apnea (poor sleep quality, relatives have noticed me stop breathing for brief periods while asleep, loud snoring) but I literally cannot bring myself to get a sleep study done because I know it's not going to be cheap, and to top it off I don't even know how expensive it's going to be in the first place. It's not like I can't afford to pay either, I do have some money stashed in my HSA but…

You don't need to do a full sleep study. Standard procedure these days is to prescribe an at-home sleep apnea test. A sleep health company will send you a little monitoring device by mail. You wear it while sleeping during the night. It measures your pulse, blood oxygen levels, breathing patterns, etc, and transmits your data back to the medical provider. After about a week, they send you and your doctor the results.

Then your doctor will prescribe auto-cpap therapy. Hopefully health insurance defers some of the cost, but in any case it shouldn't be ruinous for someone with an HSA. You can get a Phillips Dreamstation off Amazon for $620.

Please go get tested.

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

#77

Post by johnchristopher »

WJW wrote: post #73
surds wrote: 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…

Does it bother you at all while sleeping?

CPAP user here. It's a matter of adjusting to the treatment and setting up the gear correctly. Both can take time. It's worth it.

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

#78

Post by virmundi »

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.

How much was that machine? Do you need the sleep study in the first place? How much do you spend on wants like Netflix?

The market can solve many of these. I've looked at CPAP machines. I've spent more on a guitar. You don't need your insurer or the government to clear your purchase of such a machine.

It's like ordering pet meds in the US. I know what flea med to purchase. I don't need a vet prescription. Sites I've visited in the US say I do, so I buy from Canada. Cat's are not dead.

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

#79

Post by lfnoise »

wccrawford wrote: post #19

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…

In my experience, sleep apnea treatment in the US is a racket. The sleep center tried to maximize the number of office visits they could bill before prescribing treatment and the insurance tried to delay approvals and minimize the cost and quality of equipment they would provide. Meanwhile, patient suffers. After 5 months of repeated visits, when another 6 weeks was tacked on, I went out on my own and got the best machine.

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

#80

Post by rjurney »

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 sleep study where they tried many different settings, it was found that static CPAP, the simplest form of PAP therapy, was most effective in addressing my apnea. This was highly unexpected.

My point is that only a sleep technician or a sleep medicine doctor could have figured the right settings out. Beware of fucking with your own settings! I did it multiple times and it hurt my sleep instead of improving it. Pulse oximetry is not good enough to tune your own settings.

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