Joined: Mar 2016
Machine: ResMed Airsense 10 Autoset
Mask Type: Nasal mask
Mask Make & Model: Philips Wisp
Humidifier: Built In
CPAP Pressure: 9-13
CPAP Software: SleepyHead
Other Comments: First diagnosed with essential hypertension @ age 25 (precursor to CHF)
Location: This side of the MilkyWay
RE: Danger Involved - Changing your own CPAP pressures [copied from old forum]
(02-23-2012 04:42 PM)SuperSleeper Wrote:
shawnesty Wrote: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)
I enjoy being with a group who like to share their "Hosehead" experiences, to remind me I am not alone.