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Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:08 pm
by Pugsy
Julie wrote:But would he really need the high pressures if in fact they're caused by high leakage made worse by (vicious cycle) higher pressures - pushing Pap air out of his mouth instead of down his airway?
Julie...his leaks never got to that point no matter what the cause.
With his machine at his pressures...large leak territory is going to be at 90 L/min at least.. the worst he ever got to was briefly at 70 and that was a only a spike and the rest of the time at 56 or below which is probably pretty close to the accepted vent rate at that high of pressure.
These new PR S1 machines don't go chasing leaks with more pressure anyway...in fact they will/can actually reduce the pressure briefly when a big leak is sensed.
His pressures aren't leak driven...they are OA driven.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:09 pm
by ATXFerret
CPAP info posted.
Why has no one suggested that you try a bilevel pressure machine? Has it ever been discussed?
It has never been discussed.
I don't see much value of seeing another doctor or additional sleep study. It seems you don't have CSA (those few are induced by CPAP) at all, You already have the APAP for OSA and you need right now is to optimize the APAP treatment.
Unfortunately, I do not own this APAP. It is on loan for 30 days.
But would he really need the high pressures if in fact they're caused by high leakage made worse by (vicious cycle) higher pressures - pushing Pap air out of his mouth instead of down his airway?
I use a full face mask, and a jaw strap to keep my mouth shut because, otherwise, I dry out really fast. Probably due to one of the various meds I'm on for other things.
The min was set to 4. I set it to 15. Maybe tonight will be better. I'm a little beyond optimism, but I will still do whatever might help.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:16 pm
by ATXFerret
Pugsy wrote:Go to Preferences/Appearance tab and remove the check mark for "use Pixmap caching" and let's see if the pressure line straightens up. It's not showing properly.
I did, it looks the same. I think it is accurate in the pic. When it wakes me up, the only way I can get it to stop leaking so that I can go back to sleep is to turn it off and back on.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:22 pm
by JDS74
Do you have Ramp turned on? For how long?
Having a long ramp time helps with going to sleep, but makes making sure the mask fits properly problematic.
At the end of the ramp time, the pressure goes up anyway. So, if you are using Ramp, have you tried just a short time?
BTW, you don't have to turn your machine off and then on again, just push the Ramp button.
The user manual for your machine mentions a Mask-Fit function. Is it available and have you used it to adjust your mask?
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:25 pm
by Pugsy
If your minimum was 4...SleepyHead is showing min of 13 on the statistics column where it shows min, median, 95% and maximum...which is known to be buggy on occasion but not in that particular spot normally.....
Be that as it may....a minimum of 15 is a good start..let's see how things go after tonight...you might get lucky and not need what I thought you might need in terms of over 20 pressures..
You would still benefit from bilevel though....it's soooooo much nicer to use at those pressures pushing 20.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:30 pm
by JDS74
I see VS events that look like they are at the time of rapid pressure increases. That looks like leaks and not really actual snoring.
With a FFM, you don't get air blowing out your mouth except by leakage. So, getting the mask adjusted properly will be very helpful.
ATX can you go back to your DME for a proper mask fitting?
If so, do it lying down with your machine at pressure. Have them set the pressure to CPAP mode and 18 cmH2O for purposes of the fitting. That way it will fit after the ramp goes away.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:33 pm
by ATXFerret
They did fit it at a pressure of 17 originally. Once I'm asleep for a while, something about my face or the mask changes, because it doesn't "fit" anymore. I have tried multiple masks, and this is the best one, but they all had this issue. I'm guessing it's my stupid face.
Edit - and Ramp is off. I don't have a problem falling asleep at 17.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:35 pm
by Bill44133
Pugsy wrote:If your minimum was 4...SleepyHead is showing min of 13 on the statistics column where it shows min, median, 95% and maximum...which is known to be buggy on occasion but not in that particular spot normally.....
Be that as it may....a minimum of 15 is a good start..let's see how things go after tonight...you might get lucky and not need what I thought you might need in terms of over 20 pressures..
You would still benefit from bilevel though....it's soooooo much nicer to use at those pressures pushing 20.
+1
You poor man, I am sorry this is happening to you. I am on high pressure also and the Bi-level will make breathing so much easier for you.
You are in a good place here. This website is a life saver. The medical community is not much good at getting the therapy optimized. You are going
to have do that yourself with the help and support from this website.
I wish you well..
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:42 pm
by JDS74
Yes, your face changes because you relax. Same reason you have obstructive events - loss of muscle tone.
The ideal time to get your mask adjusted properly is during a sleep study when the technician can do it while you are asleep. Think about doing that or asking for that when next you can afford one.
BTW, the mask leak rate for your mask at 18 cmH2O is about 51 so your leak numbers are not too bad if SleepyHead is reporting total leaks as does Encore.
With a FFM, have you tried a soft cervical collar instead of the chin strap.
For me, a chin strap moves my jaw back slightly and aggravates my obstructives.
You mentioned dryness in your mouth. Perhaps that is because you are mostly breathing through your mouth and not your nose?
I hope some of this conversation is helpful.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:46 pm
by Pugsy
Something to think about...Padacheek mask liner to help with mask leaks.
We have a lot of forum members using high pressures who have great success with it.
http://www.padacheek.com/PAC_Maskliners.html
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 9:57 pm
by ATXFerret
Should I be looking at this, instead?
http://www.padacheek.com/PAC_AntiLeak_Strap.html
And I very much appreciate the support from all of you guys.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 10:07 pm
by Pugsy
You can look at either the liner, the anti leak strap or both. People use both.
More people use the liners than use the anti leak strap though.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Fri Apr 18, 2014 10:18 pm
by ATXFerret
I went ahead and ordered the liner. Thank you.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Sat Apr 19, 2014 9:21 am
by musculus
I bought two PRS1 biPAPs and supplies ($300 each) from craigslist from a guy working for DME and they are pretty good (<50 h use).
If you really don't like the trouble with sleep doctors, DME, or sleep studies, you may find a good auto biPAP machine online.
ATXFerret wrote:I went ahead and ordered the liner. Thank you.
Re: Am I missing something, or do I just have a crappy doctor?
Posted: Sat Apr 19, 2014 9:58 am
by Julie
Btw - when you lie down everyone's face changes quite a bit, which is why we suggest trying on potential masks while lying down - ask your DME about doing that.