"please keep me updated about oximeters "
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Wearing the mask correctly
Greetings, all -
This is my first post as a new member. I joined so I could avail myself to the collective knowledge and experience of this group, as I've been having problems with using the equipment and the treatment of my apnea in general.
I had a sleep study, got sent to a provider, got the popular machine and mask "de jour". . . and that was it! That was about 8 years ago, and I've been on my own ever since. No follow-up, etc. A friend recently took me to an apnea user's group meeting where I was introduced to current equipment and a discussion (repeated on this site and others) about how we've got to advocate for ourselves. Maybe other doctors follow up on their patients, but I never again heard from mine. Do I need retesting? Am I doing it right? Is it supposed to be this noisy? The only way I can get the mask to fully seal is to tighten the straps to the point where I wake up with a headache. Is there better stuff out there than my old pump and mask?
I've been looking into all these things, both here and other sites and groups. And the tips and info I've gotten have been helpful.
Yesterday I went to my provider to get a new mask. Mine was putting deep strap marks on my face, dents on my forehead, a rash on the back of my neck, and blisters/calouses on the side of my nose where the mask sits on my cheekbone.
Here's what I found out: My mask, though old, is a good one. I bought a new mask and the technician showed me how to put it on. She instucted me to put it on very loosely, lay down (tilt my head back in the office instead) and then turn on the machine. . If it leaked, lift the mask off my face and gently let it back down. I was totally suprised to find that this method worked just fine, and that I'd been strapping my mask on tighter and tighter to get a good seal, not knowing that a gentle amount of pressure, plus a fully pressurized (inflated, if you will) mask is all that is needed for a good fit. And minor adjustments to the straps if it leaks.
This really was an incredible revealation to me. My new mask won't arrive for a few days, but last night I tried her method and it worked like a charm on my old mask. I slept so much better, too, not having the tightness around my head from the straps being cinched too tight as I had been doing for years.
So, this forum and a friend got me to take steps toward my improvement, steps that weren't happening from the medical profession, as I'd "assumed" they would be.
The sad thing is that this is basic stuff that 1) should've been taught when I first got my mask and pump, and 2) should have been uncovered by a follow-up call from either the prescribing doctor, his nurse/assistant, the sleep study tech or the medical provider's personel who "fitted" me with the mask in the first place. If either one of these had better practices then my problem wouldn't have existed for years.
I'm not blaming them. It's what they do. Some do it well, some are very poor at it and only want to shuffle clients through and take their money. My dentist thinks that the whole sleep apnea "craze" is nothing more than an insurance scam. I can sort of see how someone would think that way, given the non-caring practices driven by greed that I've described, and that seems to permeate the industry.
Of course I vehemently told my dentist how wrong he was, how my breathing stopped over a hundred times in an hour, dangerously lowering my blood oxygen level and affecting my heart and other body systems. He just wanted to sell me an "appliance" to stop my snoring. Here's what I stopped: I stopped seeing that incometant nincompoop and found a dentist who did more than just make money doing unnecessary cosmetic work.
Well, I've ranted enough, and look forward to being part of many discussions on this forum.
Sleep well, y'all!
-David
Views: 98
Replies to This Discussion
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Permalink Reply by Mary Z on
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David, glad you finally got some much needed help with the mask. If your machine is data capable and you are able to read your numbers you should be able to tell if your therapy is successful. I don't know from your machine description if it is data capable. If you list your model someone here or at your support group should be able to tell you if AI and AHI are available via the lcd screen.
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Permalink Reply by David Starobin on
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Mary -
My bipap is old. It's not even listed on the Respironics site any more. It's not data capable. Of that I'm sure!
I'm eligable for a new machine, but I'm waiting for Resmed to come out with their auto-bipap version of the S9. At least my machine's pressures are correct and it's functioning properly (as verified by the technician yesterday).
I ordered a recording oxygen meter after reading reviews on the sites. That'll help me tell how well my therapy is working. When I get a data capable machine that will help even more. I had no idea that I had to do all this myself. I'd have thought that a decent sleep doctor would help. After all, isn't that why we go to them? To help fix a problem we have?
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Permalink Reply by betty m on
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I totally agree, i was never shown how to fit my mask either,i learned from this forum just recently and i was diagnosed with sleep apnea in 2006! Everyone that has ever shown me put it on so tight i could hardly stand it. i thought that's the way it had to be to seal! I have been trying to get a seal for over 4 years now !!!!!!
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I think part of the trick of fitting a mask is assuming as close to a sleeping position as possible as your tech did..
You were fortunate, as we all should be, to have a tech that knows how to fit a mask.
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Yes, Mary, that's true. Why weren't any of the other techs as knowledable over the years I've been using this provider? I sure wish I'd known earlier!
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Me too !!!!! What i have learned I have had to research and ask the people on the forum. I am still having problems but thank goodness these people are here for me. I have been leaving messages and trying for over 3 weeks to get my DME to call me back! Last time I finally got a call after 1 month of trying. they say they are sorry,they're just so busy! I just don't think that's right.
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I really feel better knowing that there are others going thru (or have gone thru) the same thing.
Thanks.
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Welcome to the forum(s), David! We ought to send your related experience to the Resmed CEO! (See the Resmed Rebate for Everything post in this forum).
Since your CPAP is 7 years old your insurance SHOULD be willing to buy you a new one. And THIS time we are going to send you into the local DME provider's lion's den fully armed w/the information you need to get a fully data capable CPAP and to find a good local DME provider IF there are any contracted w/your insurance.
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Thanks, Judy. That's a pretty high powered discussion about ResMed Rebate for Everything.
I forgot to mention that I am qualified by my insurance company to get a new mask. I need to get an Rx from the doctor, though. That guy who'm I've never met, the one who interpreted my sleep study nearly a decade ago. We'll see how cooperative they are, whether there needs to be more testing. Do my levels need to be adjusted? Has my apnea improved? Gotten worse? And finally, do I pursue the new machine now, or wait until Resmed releases an auto V-PAP version of their S9?
Maybe I'll search around for discussions/threads on the release of those machines.
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