Should I Question My Physician's Prescription?

[Zomby Woof]

I'm in Mask Hell trying, and so far failing, to find a workable solution for 23.4cwp average IP.
So of course I question why it has to be that high - 5cwp higher than the titration study pressures.

The 5cwp of additional pressure is a significant problem;
there was no trouble with my WISP nasal mask during any of the four studies using pressures up to 20/14cwp maximum;
there is nothing BUT trouble when I've tried to use it IRL at 24/16cwp!

Asking the DME techs is useless - they're terrified I might actually change the machine settings and upset the physician

With my very limited expertise I've scanned my Titration Summary (attached).

I seem to see a minima of AHI and SpO2% for REM sleep at 14/8 and worse results for both at higher pressures.
Also, it seems that for Non-REM sleep the best results for AHI and SpO2% are obtained at 17/11
also with deteriorating results at higher pressures.

Am I right to question the Rx, and maybe get permission to run the system at 20/14 for a week?
Or should I stop whining and continue to juggle masks, hostage tape and PoliGrip?

BTW, my average results after a month show 16.5 AHI approximately.
Given that there are lots of Large Leaks the real number would seem to be higher.

[Sheriff Buford]

Juggle all the masks until you find the right one for you. I went thru 7 masks until I found "mine". What works for me may not work for you and vice versa. What you are experiencing is normal and the key to success is to find a mask that is comfortable and doesn't leak. I can be very frustrating, but keep it up!

Sheriff

[Krelvin]

Was that while you were lying on your back? You have a good machine and it is an auto as well.

My first test came back with 20-27 (cmH20). Which was very hard to deal with. Finally got my PCP to lower it after I explained I never sleep on my back and the pressure should be lower sleeping on my side. She lowered it to 18-20 (cmH20), but once I found out I can adjust it myself, I have tinkered over the years.

My new S9 VPAP Auto was set to PS 4.0 over 10.0-18.0 (cmH2O) originally, but I ended up bumping up the low end after a while to PS 4.0 over 10.6-18.0 (cmH2O). Been there now since mid-Dec and works well.

Since the Sleep DR never looked at anything other than AHI and compliance, I took it upon myself to watch and monitor my own data using SleepyHead. I won't see the sleep Dr again for another 10 months or so if even then. For the first 9yrs no one paid attention to the actual info except me.

Others will have their recommendations... coming up.

[Zomby Woof]

Juggle all the masks until you find the right one for you. I went thru 7 masks until I found "mine". What works for me may not work for you and vice versa. What you are experiencing is normal and the key to success is to find a mask that is comfortable and doesn't leak. I can be very frustrating, but keep it up!
Sheriff

Thanks for the encouragement Sheriff. Will do.

[palerider]

I'd like to see some sleepyhead charts indicating what's happening to you now, with those pressures, before offering any suggestions about what you might want to do.

excellent information on how to do it on these pages: https://sleep.tnet.com/resources/sleepyhead/shorganize

[Zomby Woof]

Was that while you were lying on your back?
Since the Sleep DR never looked at anything other than AHI and compliance, I took it upon myself to watch and monitor my own data using SleepyHead. I won't see the sleep Dr again for another 10 months or so if even then. For the first 9yrs no one paid attention to the actual info except me.

Others will have their recommendations... coming up.

Amen Krelvin!

I don't believe that the DME tech's look at my reports much at all.
They should be concerned about the poor results and the Large Leaks.
Instead they repeatedly warn me about their 30-day limit on supplying trial masks.
They are MOST concerned about troubling the physician who read my study,
and the possibility that I might discover how to change the clinical settings ( spoiler alert: TOO LATE FOR THAT ).

ADDED BY EDIT:
And yes I do start the night supine. Later on I sleep on one or both sides.

Great things about the TAP PAP I was using:
NO STRAPS (I seem to be very sensitive to pressure on my scalp and neck and get headaches);
the pillow seals absolutely work with the high pressure; and
the pillow seals continue to work well while I'm sleeping on my side.

Bad things about my use of the TAP PAP:
jaw drop, chuffy cheeks and loose lips require me to use a cervical collar
AND tape up/polygrip my lips;
The TAP PAP mouthpiece makes getting a lip seal very difficult.

[Zomby Woof]

I'd like to see some sleepyhead charts indicating what's happening to you now, with those pressures, before offering any suggestions about what you might want to do.

Thanks for taking the time to look at this palerider.

Below are the Statistics page and the results from last night 8 May.
I'll provide more if you wish.
I was using the TAP PAP mask with a soft 3" cervical collar as grayghost suggested.

[palerider]

I'd like to see some sleepyhead charts indicating what's happening to you now, with those pressures, before offering any suggestions about what you might want to do.

Thanks for taking the time to look at this palerider.

Below are the Statistics page and the results from last night 8 May.
I'll provide more if you wish.
I was using the TAP PAP mask with a soft 3" cervical collar as grayghost suggested.

due to the current version of SH not quite working with the aircuves properly, I can't tell some things

it appears you're in vauto mode, so what are your minepap, maxipap, and ps?

[Zomby Woof]

due to the current version of SH not quite working with the aircuves properly, I can't tell some things

it appears you're in vauto mode, so what are your minepap, maxipap, and ps?

Thanks for your response palerider.
You are correct I am in VAuto mode.
The MD's Rx is: Auto-BIPAP Max IPAP-25 CWP MIN EPAP-12CWP MIN PS 8.0 CWP MAX PS-8.0 CWP BIFLEX 2 RAMP 20 min. with ramp start.

Actual machine setting by the DME differs only in that the Max IPAP is set to 24cwp. I've shortened the Ramp to 10 minutes.

[palerider]

due to the current version of SH not quite working with the aircuves properly, I can't tell some things

it appears you're in vauto mode, so what are your minepap, maxipap, and ps?

Thanks for your response palerider.
You are correct I am in VAuto mode.
The MD's Rx is: Auto-BIPAP Max IPAP-25 CWP MIN EPAP-12CWP MIN PS 8.0 CWP MAX PS-8.0 CWP BIFLEX 2 RAMP 20 min. with ramp start.

Actual machine setting by the DME differs only in that the Max IPAP is set to 24cwp. I've shortened the Ramp to 10 minutes.

I'm puzzled why the rx is that high, when, as noted your titration seems to indicate that lower pressures worked better, notably 17/11, as well as the fact that the titration was done with a ps of 6.

if it were me, I'd certainly be saying "hey, look, doc, this ain't workin, look at all these centrals' and, perhaps, lowering my ps.

I experimented with various settings, including a ps of 8 when i first got my vpap, and decided that it seemed to over ventilate me.... I'm pretty happy with 5, maybe sometimes 6, myself. of course, that's not a recommendation for you, but it's clear that what you're set at now isn't working for you...

the leaks, too, that's a big problem, as you've noted.

[Zomby Woof]

if it were me, I'd certainly be saying "hey, look, doc, this ain't workin, look at all these centrals" and, perhaps, lowering my ps.

I experimented with lowering the pressures and pressure support to conform
to the best results obtained in my titration study: 17IP 11EP 6PS

Last night's results are the lowest AHI and the lowest leak rate I've yet achieved.
Each measure is roughly HALF its monthly average (see attached SH result).

And yes, I DO feel better this morning

[chunkyfrog]

Who ever said that free advice was well worth it?

[Zomby Woof]

Who ever said that free advice was well worth it?

Don't know froggy but it was Casey Stengel who said "A verbal agreement ain't worth the paper it's written on."

[bwexler]

I had similar concerns when I started using my PR 1 960.
After 6 months I tried to make an appointment with the sleep doc, who would no longer see me since he was out of network.
Settled for now in network sleep doc who recommended increasing my pressure. I tried that for 1 night and my leaks went crazy. So I reduced my pressures and my wisp works fine and I have even been able to go back to my Sleepweaver Élan which I like even better.
So if I were me, I would lower my pressure and allow the auto functions to do their job.

[Zomby Woof]

So if I were me, I would lower my pressure and allow the auto functions to do their job.

Thanks for sharing your experience bwexler. I'm likely to do just as you did.

What's the point, after all, of having these advanced auto-setting machines if we don't use those features.