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Permalink Reply by Mary Z on December 12, 2009 at 10:32am

This makes a lot of sense Judy. I'm lucky enough to have doctor who sees me often enough and makes needed adjustments.
I'm on a BPAP and consider myself a complete layperson on the subject of what pressures are needed. I wouldn't think of changing any settings on my own. Mainly because the doc is there for me. On the other hand I agree there are those with the knowledge to make small changes in there pressures slowly. I think it would improve compliance by making someone feel impowered to really be a partner in their care.
I'm still battling with getting the bridge of my nose cleared up and leaks. My nose is getting better, but the constant pressure continues to cause redness. I hoping with the new cushion I got that will gradually improve.
I did get the ResMed software and USB reader for the back of the machine and find the data fascinating. It's going to take a while to learn how to read the data- a few more times going over the instruction manual and maybe a few questions here. Still won't attempt to make any changes though.
Thanks for your insight and encouragement to all of us, but especially to the folks who are capable of making small changes to their pressures.

Mary Zimlich

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Permalink Reply by Judy on December 13, 2009 at 6:50am

I started on CPAP 3 years ago. I found, since I am NOT a patient patient, that I had to push my sleep doctor rather than do things one month or every 90 days or every 120 days. Fortunately, I knew enough when getting my first equipment to insist on a fully data capable CPAP (to the point of returning the first Respironics basic CPAP w/o even compliance data capability) and so received a Resmed S8 Elite w/EPR. When the DME didn't want to do a weekly download and my sleep doctor wasn't interested in seeing data for just one week I bought the software and cable reader out of pocket. This resulted in faster changes from 6 cms, to 7 cms to 8 cms when I finally started seeing improvement.

But it still wasn't enough. So I self-purchased a lightly used Resmed S8 AutoSet Vantage. And I set it to a reasonable range: 8 cms to 12 cms. And I saw more improvement. But it still wasn't quite enough to satisfy me. And when I FINALLY convinced my sleep doctor to REALLY look at the data and the trends he suggested a bi-level titration. I INSISTED on the Resmed VPAP Auto when the titration indicated how much better I did on a bi-level. FINALLY I was almost satisfied.

But I kept asking about my high leak rates and the DME and my sleep doctor just kept on telling me today's xPAPs can compensate quite readily for leaks. Yeah, uh huh. They can - to a point. And my leak rate way too often was way past the compensable leaks of today's xPAPs. It took another bi-level titration, and a poorly done one at that, to meet w/someone who recognized the too high leak rate and addressed it by ordering a chin strap. THAT brought things into good line. Still high leaks due to "the lip flutters" but at least compensable.

At no time was a full face mask suggested to me UNTIL I asked to try one. The Quattro didn't work out for me and I was doing pretty good w/the chin strap and nasal cushion so I let things go for awhile. And then asked to try the new Respironics FullLife. My DME didn't have one in stock so offered the ProBasics Zzz-Mask full face to try and if it didn't work they would order a FullLife in for me. The ProBasics has my leak always way under the compensable leak. But ... my AHI increased dramatically so we are currently adjusting pressures again to find what pressure is needed for the Zzz-Mask. Most likely just a 1-2 cm raise in pressure but there have been cases of up to a 4 cm increase in pressure needed w/for some people and masks. And I'm feeling even better. I think we go w/o decent sleep for so long and are so grateful for the improved sleep we don't always recognize that we could do even better - until a change is made and we are surprised to find we are feeling even better!!

The telling factor was that w/the Zzz-Mask, despite the horrible AHIs I was getting, including horrible AIs I was feeling as rested or MORE rested than w/the higher leaks and better AHIs w/the nasal cushion and chin strap!!!

I strongly suspect that we are going to find that my original bi-level titration of IPAP 13, EPAP 8, PS 4 but using the Zzz-Mask full face instead of the nasal cushion and chin strap is going to be THE sweet spot of pressure needs for me. We shall see as we gradually build up to that. Or maybe that will be THE right pressure for me w/the nasal cushion and chin strap and I'll need a little higher pressures for the Zzz-Mask.

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