[Pressure] Danger Involved - Changing your own CPAP pressures

[SuperSleeper]

Bumping an older thread here - just to bring back old memories about how this movement has progressed and how far we've come.

This thread was actually started by RespiratoryChip about 12 years ago, so it's an interesting history if you like that sort of thing.

[cathyf]

...The pressures are set by the Physician to the optimum level to alleviate the apneic events. Elevating them too high and you can cause more apneic events or possibly reduce flow of blood to the brain...

Well that sure didn't age well!!!

Um, so all of those experienced, educated, professionals who almost always send patients home with an APAP set to 7-20 (my prescription in 2014) were just lying about reducing the flow of blood to your brain with those too high pressures?

(One thing I'm absolutely sure of -- no amount of dial spinning on my part would get my Airsense 10 to pump out pressures above the 20 that my physician put in the prescription!)

[SarcasticDave94]

"Elevating them too high and you can cause more apneic events or possibly reduce flow of blood to the brain..."

Dave's take: if you turn your CPAP dials without doctor's permission it will reduce blood flow to the doctor's brain.

[cathyf]

I think the docs are more worried about the money flow into their pockets...

[79tarheel]

I feel the same way right now….only 2 months in on cpap, struggling and ready to give up. I think it is the most lucrative medical scam out there. Had home sleep study first, no one told me I still then would have to go in for a full sleep study in-lab. Did that. Now because I am struggling with exhale against the tornado blowing into my nose, NP suggests bipap but “must do another sleep study to set pressures on new machine”. A THIRD study in 4 months?? Sure, they want to do another when they can charge $9600 to my insurance yet again! Trying to become compliant, but getting worse not better and am ready to throw it all out the window. Thanks to all posting on here as I get some incentive to continue from all of ya’ll.

[WakeUpTime]

Seven years ago, my RT had told me, in so many words, "this is the best we can do for you".  I was failing miserably on my CPAP trial.  As a last effort, I stumbled across ApneaBoard and the idea that the patient can more significantly influence their overall comfort, health and well-being.  I can't possibly imagine the state I'd be in today had I not become a more influential player in my treatment.  

Awhile back I did another sleep study/titration.  When the sleep doc read the lengthy report, they looked frustrated.  They said something like, "The technicians haven't been able to give you better results than you're currently getting with your settings.  In fact, they're much worse.  Therefore, continue with your settings."  (Thanks ApneaBoard.)

[Sleeprider]

I feel the same way right now….only 2 months in on cpap, struggling and ready to give up.  I think it is the most lucrative medical scam out there.  Had home sleep study first, no one told me I still then would have to go in for a full sleep study in-lab.  Did that.  Now because I am struggling with exhale against the tornado blowing into my nose, NP suggests bipap but “must do another sleep study to set pressures on new machine”.  A THIRD study in 4 months?? Sure, they want to do another when they can charge $9600 to my insurance yet again!  Trying to become compliant, but getting worse not better and am ready to throw it all out the window. Thanks to all posting on here as I get some incentive to continue from all of ya’ll.

79tarheel, would love to help, but you need to do your part. First, OSCAR software can help us to see the details of your therapy and settings.  Second, the machine you already own is capable of bilevel therapy using EPR. The hurricane in your nose is most likely the result of a leak.  Please consider joining our forum, downloading the free software and posting a therapy thread where we can help guide you to more comfort and effectiveness.

[Gideon]

79Tarheel,
The one thing that makes AB different is we use data as the basis for advice. Detailed data that goes down to a breath by breath basis when needed. There are many here that are very good at interpreting and understanding the data at least as well as most doctors and we are all PAP users and most of us for many years. We understand all that the medical system has put you thru and generally we can help you receive much better treatment than you feel you have been getting. Once you have been diagnosed with apnea we tend to not suggest additional titration studies, when we do it is usually to prove efficacy to a doc on a specifics machine.

Post a nightly screenshot in a new thread and try. You have nothing to lose.

[SarcasticDave94]

It can but only get better.

[HockeyGoon]

I'm not sure if anyone has had the same experience, but the entire process can seem like a scam.  Let me explain...

I told my PCP about my thoughts that I may have sleep apnea based on my general relationship with sleep.  Snoring, waking up feeling ill, morning headaches, morning fog, falling asleep in the evening, and lack of energy.  We agreed that I needed a test.

Two months lead time to get a home test.   Home test went well.  Was told that I would receive the results in 7 to 10 days.  After 10 days, I had to call 4 times to get the results.  They told me, you have it, we will need to schedule an overnight titration.  Another two months to schedule that  Never received a report, results, or discussed with anyone other than a nurse at my PCP.

Had the titration, the tech told me my AHI numbers verbally.  Titration went fine, said they would review and get back to me within 10 days.   Same story after 10 days has to call several times.   Was finally called by my PCP to say that the prescription was sent to the local DME.  Had to wait another two weeks.  They told my I would need to rent the machine for 10 months at $115/month, $225 to set up, $175 for mask.  Asked the price to purchase outright.  Was told $1,500 plus setup fee and mask.

Requested my prescription and bought machine online for under $700, already set up with prescription settings.  Never met with a sleep doctor.  Never received my reports.   
In my experience and opinion, the sleep industry is a racket.

Came to this board, uploaded my results and tweaked my settings, my AHI is consistently below 1.  My apnea is moderate, but I am in control of my machine and have found a place to go and research my treatment in a way that my PCP, the sleep lab, and the local DME neglected to do.  If anyone is concerned with this board, it should be the patients that cannot find the help they need to the healthcare system.  There would not be a need for this board, if there was communication from the medical field.  I am glad this board exists.  I would be lost without it.