[Pressure] Danger Involved - Changing your own CPAP pressures

[lmoretti]

Just to add to this:

I had an in-home sleep study, got called the next day with the diagnosis that I had severe OSA (40-50 AHI). It was 2 weeks before they could get me in for a titration study. During the titration study I was shown a video and then only saw the tech who ran my study.

When they called the next day saying that they "Had a prescription" I asked about actually talking over my study with a doctor, and got a response like I was insane. They said they'd have the front desk call to schedule me. I called back that afternoon, talked to the front desk, but they "couldn't schedule an appointment as they didn't have an order". WTF. Finally got the order the next day and the soonest they could "get me in" was over a month out. I'm not going to skip treatment for a month!

So now I'm on a fixed pressure prescription without EVER talking to a doctor. I asked about getting a copy of my prescription, and got the run-around. I asked about getting a copy of the study data, and they said they'd mail me a HIPPA disclosure form that I'd have to fill out to see MY OWN RECORDS.

My DME was great at answering questions and printed out their copy of the prescription for me, but can't do anything that's not signed off by the mysterious "doctor" in the ether. They missized my mask, so I took it upon myself to try the different size nose pieces to get a better fit.

I have a "follow up" with "my doctor" in a few weeks. I've been tempted to dispute the charges with my insurance company, as I have no clue who the names on these bills are.

My AHI is still higher than I'd like (~2-3) and I'm still having issue being tired during the day (but my wife & family say I'm MUCH better than I was) and I plan on downloading my card and seeing what's going on. I also plan to -shockingly- set my machine up on Auto after my consult, doing a small +/-2cm around my prescribed pressure and then seeing how I respond. Based on how much pressure my machine uses in the night, I'll adjust the range from there.

So the summary is that while it would be nice to work hand in hand with a qualified doctor to make the most of my therapy, they've told me to leave them alone and just pay my bills.

[ClarkK]

For me there will be no sophisticated sleep lab titration study to reference -- I had a major panic attack during my titration study and had to sign out early after hours of trying to calm myself to the point I could lay down again. In those cases, an Auto-CPAP can be prescribed, letting the machine find the appropriate pressure in the absence of an 'ideal' clinically recommended one.

The first time a change was made, I worked with the system. It took several weeks to get the auto range adjusted upward from 5-20 to 8-20, as I was very uncomfortable starting at 5, and my median pressure and 90% pressure were over 8 and 10. It was very frustrating to wait that long, and it was a determining factor for me in deciding I needed to take control of my therapy -- and use the medical professionals as advisers rather than ongoing facilitators.

The adjustments I've made set me closer to the settings the Auto-CPAP was taking me to -- not dangerously high ones outside of my required range. I now wake up less often because the pressure varies less.

Seems to me the machines should allow a patient adjustable range with guidance as to how and when to make adjustments -- and appropriate warnings. Some drugs are prescribed "as needed" with guidance as to when and how to use them, and what the maximum dose should be. Why not CPAP? Especially if Auto-CPAP is already a medically accepted option that allows pressure to go up well beyond what I'd ever set for myself.

The current system that often works out to 'set 'em and forget 'em', is not helping raise compliance statistics.

[eseedhouse]

Seems to me the machines should allow a patient adjustable range with guidance as to how and when to make adjustments -- and appropriate warnings.

They do allow that, actually, at least the more modern ones. You just have to find out how to get into the "clinical manual". Usually it's just a combination of buttons to push down together for a few seconds.

If you go to the top of this page, just under the logo you'll see a menu of links, one of which is "CPCP setup Manuals". Click on that link!

I adjust my pressure as I want it. Neither the DME nor my Dr. have any problems with that. I use the Sleepyhead software available from this site to track how I am doing.

[vcottom]

I am a Respiratory Therapist who works in the home care field. Prior to working here I worked in a sleep disorder lab. When I stumbled across this site I was shocked. I saw the article at the begining that states with such bravado that there is no law that states you cannot change the pressure on your own CPAP machine. You are correct to a point. The law of common sense would tell you not to manipulate the pressures when you are completely unaware of the consequences. Hell you can go buy a gun and stick the barrel in your mouth, I don't suggest you try that but it can bring about the same results. 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. These machines are medical devices not toys, so the author who compared them to a leaf blower is showing just how little his understanding is of these systems. I would strongly suggest any person who feels they do not get enough relief from their CPAP unit to consult their physician or homecare provider. Otherwise feel free to follow the advice of the collectively ignorant and take your own life or well being into your own hands.

So, what do you do when the system is delivered to your home with no instructions. I've had this System one for 21 months, nearly two years, and it has never been accessed from the outside, nor have I ever been asked to bring the system, or the chip into the suppliers office! The FIRST time I put it on and started it the accursed machine near blew my ear drums out. I "removed it"and tossed the whole thing into the back yard.

The next day I went to my "family" doctor the inquire. I could not locate who prescribed it, or anybody that wanted to be responsible for my treatment.
Using this board, along with other sources my wife (a retired RN) and I went to work. We did out own pressures, and with a professional Oximeter, got my oxygen to a steady 97~98 24/7. I still use the system, it's paid for and I will continue to optimize it for my use.

[Sleepster]

Two years have passed since I was active in this thread. I have a learned a lot since then and have something to add.

I have a very good sleep doctor now. She knows what she's doing. But she doesn't have access to the amount of data that I do. I see the data from every night of my sleeping. She sees summaries. I tell her about adjustments to my pressure that I've made and ask her if she thinks I'm doing the right thing. I could send her an email message today asking that she write a prescription for a new machine for me. I would repeat the explanation she's already heard that due to aerophagia I need an auto-adjusting bi-level machine set to an IPAP pressure that ranges from 10.0 to 13.6 because that's what it takes to eliminate obstructives and hypopneas without inducing too much aerophagia, with a pressure support somewhere between 4.0 and 5.0 because that's what it takes to keep my central apnea index from elevating while not swallowing too much air, and she would just nod her head and do it. She knows that I know enough to know what I'm doing, that I've reached these conclusions empirically, and that when I don't know what I'm doing I'll ask her for help.

I'm not so stupid that I don't know what I'm doing, and she's wise enough to understand that the medical care industry is not the end-all and be-all of medical care. Especially when it comes to CPAP therapy.

[player]

It's a racket.

[SuperSleeper]

Bumping this old thread to the top 'cause I got an email from a doctor claiming we're promoting "illegal activity" by giving patients info to change settings on CPAP machines.

So, "Dr. Gary", read through this thread and see how we would have responded to you.

Cheers.

[OMyMyOHellYes]

I was wondering how this zombie got reanimated.

OMMOHY

[green wings]

[deleted comment about Dr. Gary] Never mind.

[Luvmyzzz]

The PA, after 3 ($6000/each) sleep lab tests, AND, me calling him over the holiday because my vpap didnt feel like it was giving me adequate pressure, FINALLY told me over the phone how to adjust my machine. OMG! It was like getting the keys to a car after I got my driver's license! He had me at 14 inhale pressure and 7 counter/exhale pressure. After spending a couple hours testing up and down, I discovered my optimum intake was more along the lines of 17! (Yes, i adjust it every couple days depending on how I sleep the night before!) I immediately started feelilng the benefits they (the docs) said I'd get initially, but didn't.
Futhermore, I video-cam my sleeping some nights and review the data. The website creator has it absolutely 100% correct when saying, "nobody cares more for your health than you do." My sleep disorder PA has a zillion patients and he tries hard to do a good job, but the science behind treating apnea with an air-pressure machine isn't exactly rocket-level engineering! After researching my own condition (central brain apnea), I feel I know as much or more "practical knowledge" of the procedure. Why is that? Well, my PA doesn't have sleep apnea, for one, so he can't possibly have the motivation to understand it like I do. Duh.

Not everyone can wait the weeks it takes to be seen for cpap/vpap adjustments, NOR can they afford the costs! Furthermore, I think those who seek the information on how to adjust the pressures understand their personal needs...thus the impetus for the research. I wouldn't have dared adjust my machine (more than the once when my PA told me how over the phone) had I not carefully studied my condition. Quite frankly, I'd rather be in control of my treatment than a mildly-concerned 2nd party. Sorry, but I'm acutely aware of just how nebulous and tenuous the apnea-world is on treatment...sure, they can diagnose (and talk about overkill!!!...it's funny that they expect an accurate sleep-reading on a person who's hooked up to a hundred servos, wires and got glue all over in their hair...sleeping in a strange bed-lmao!), but they struggle to find the "perfect" pressures for your treatment. A person in REM sleep (in the lab) gets air blown up their face from the attending nurse/PA and rudely awakened.

They go back to sleep and have more adjustments by the PA, trying to take care of the apneas. Sure, they do their best with what little time they get to figure out the correct pressures, but it's simply not enough time! Even 2 or 3 tests cannot fully accommodate ALL the conditions/situations a patient may experience. Tissue inflamation one night may be much worse or much less the next. Someone on sleeping pills or pain medication may have more blockage due to relaxed muscles. Conditions change constantly. Here's the thing (the analogy from hell): you take your kid in to the ER because he has a temp of 102, the ER doctor says take 2 Tylenol and call in the morning. Being the worried parent you are, you do as you're told. However, an hour later your child's temp has now risen to 103.5! You feel like and idiot rushing him back to the ER after you were just there and the doctor was explicit in his instructions of what do you...yet, you feel like maybe he missed something. The doctor has trained himself to be emotionally detached (he has to!)from his patients, unfortunately this detachment (and over-work) also means he isn't giving your kid the necessary attention. If YOU had been the doctor, you'd have kept the kid in the hospital to see if the temp went down...you'd try various solutions, etc. But you're not the doctor! It's the SAME with CPAP users and their worry about treatment not being effective. We HATE going into them with our concerns and being told we're being silly, hasty, or over sensitive...or worse, to schedule another sleep test in 2 weeks. Meanwhile, you're dying. So, "Chip" (if that IS your real name), if you're they type of person who enjoys putting up with delays in treatment, if you have 100% confidence in your physician AND his ability to dedicate the time necessary to find your exact treatment, and, if you don't mind letting others be completely in control of your life-and-death situations, by all means, be that way! But I seriously doubt you are! You're in the sleep-care industry? How'd you learn everything to be such a professional?? Guess what? You're not the only one who can read and understand texts, manuals, mandates, and medical journals! This isn't meant to be rude; it's meant to be realistic Before we can get anywhere in a discussion, we have to be honest with ourselves. My truth (and I'm guessing most ppl would agree) is that I don't have limitless faith in my doctor--not in his knowledge, not in his time-constraints, and certainly not in his empathy. He does his best, I'm sure, but many times his best is not good enough.

As for the sleep-care "professionals" out there who clamour about self-adjusting CPAPs, I certainly hope that if you or someone you love ever (God forbid!) get a disease, that you don't leave 100% of your care and treatment to your physician. That's apathy...and, it's illogical...and, un-american! If you are able, you'll do EVERYTHING in your power to better understand and treat the condition. If you wait for a doctor, or a break-through treatment, you're have given up your power as an individual, as the master of your temple. Sorry this got philosophical, but it's the root of why we rebels in the CPAP world do what we do...to us, it's natural (in my opinion).

I know that my response to this thread is quite out of step of the conversation, But Supersleeper, YOU ARE the BOMB, I can only imagine the number of CPAP users you have greatly influenced regarding their therapy! It scares me to think that there are some who think they can apparently "ween" themselves off their equipment! or just change without monitoring the results of the change! (Was there ever a conclusion about the supreme court justice not having his PAP machine on?...just wondering)