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Re: Frustrated
Posted: Thu Nov 10, 2011 1:18 pm
by Pugsy
Perrybucsdad wrote: but the higher I keep making my lower pressure the closer I am to true CPAP.
So what's wrong with that? Why does it matter?
Perrybucsdad wrote:Part of me wonders if I shouldn't say eff-it and max it to 20 and let it stay there and see what my AHI would be. I'm tolerating the pressure so the only issue would be starting at that pressure. I could then drop the pressure a half point each week until I see an increase in AHI.
The scary this though is what if I do the 20cm min experiment and my AHI is still high? Then what are my options?
Your options would be some sort of BiLevel machine but that is putting the cart way......before the horse.
If you can comfortably tolerate 15 cm minimum tonight with no EPR...please just try it. I know you don't know me but just try it. Believe it or not, there is a method to my madness. Quit worrying about that 20 max right now. Not a damn thing we can do about it at the moment anyway. What do you have to lose? Might gain being a puffer fish though.
Re: Frustrated
Posted: Thu Nov 10, 2011 1:29 pm
by Pugsy
I just read your sleep study.
You have more events during REM than NonRem. Quite common.
You have more events supine. Quite common.
Even non supine you have a little more than 3 times the number of events during REM than non REM.
off supine Index of 38.1 in REM vs Index of 11.7 in non REM
In other words you hit the Bifacta. Worse in both REM and supine. Quite common really. Side sleeping might help some but won't solve the problem.
Re: Frustrated
Posted: Thu Nov 10, 2011 1:40 pm
by Perrybucsdad
Pugsy wrote:Perrybucsdad wrote: but the higher I keep making my lower pressure the closer I am to true CPAP.
So what's wrong with that? Why does it matter?
What's wrong with that is there is no/very little head room for the machine to compensate more if it needs to (above 20cm).
Re: Frustrated
Posted: Thu Nov 10, 2011 1:54 pm
by Pugsy
Perrybucsdad wrote:What's wrong with that is there is no/very little head room for the machine to compensate more if it needs to (above 20cm).
True.
But for now there is no way to see if it really needs to go higher and we do need to see what would happen if you increase the minimum. You are worrying about something that for now is out of your control. I see your point and concern but please understand it is entirely possible that with sufficient minimum, the pressures won't go wild near the 20 cm mark. I know you are thinking "OMG I need more than 20 to control these things" but you may not.
Until we get the minimum up more we have no way to know for sure how much those things might need.
Even if you were using a BiLevel machine today...with 2 ranges...EPAP still has to take care of the bulk of the events and we let IPAP deal with the rogues. One can't set IPAP to 25 and EPAP to 12 and expect it to work. You could still end up with the same looking report but with 2 pressure lines.
Re: Frustrated
Posted: Thu Nov 10, 2011 2:46 pm
by Perrybucsdad
Okay Pugsy... I will give it a tryt and quit worrying about things I don't know.
I love it though... I just received an email from my doctor and he said "Looks like you might need a better mast fit. Call home care to help you." My Average Leak 95th% has been 1.2 L/Min... I don't think you can get a better seal than that. What the heck was he looking at. Wow...
Re: Frustrated
Posted: Thu Nov 10, 2011 3:00 pm
by Pugsy
Perrybucsdad wrote:love it though... I just received an email from my doctor and he said "Looks like you might need a better mast fit. Call home care to help you." My Average Leak 95th% has been 1.2 L/Min... I don't think you can get a better seal than that. What the heck was he looking at. Wow...
Scary isn't it?
Most common fixes that are offered.
"Lets try a different mask" or "give it time".
Duh....
Re: Frustrated
Posted: Thu Nov 10, 2011 3:41 pm
by robysue
Perrybucsdad wrote:
EDIT: Robysue... why did you go from ResMed to PR? I would have thought it would have been easier to stay in the same family, or is there a better feature set with PR?
At the time I was switched from APAP to bi-level, the S9 VPAP was still vaporware: Much talked about, but even calls to Remed resulted in "Yes we have some plans, but no we don't know when it will be released. So my choice was either an S8 VPAP or a System One BiPAP. I took almost a whole month of soul searching before making my decision.
Relevant posts include:
Questions about bi-level machines (posted 11/19/2010)
S9 VPAP? (posted 11/20/2010)
Being switched to BiPAP (posted 11/30/2010)
Called ResMed's Customer Service about bi-levels (posted 12/7/2010)
Finally made the decision on my bi-level machine (posted 12/12/2010)
Now that I actually use the PR System One and have a decent understanding of the AUTO algorithms of both the Resmed S9 VPAP AUTO and the PR System One BiPAP AUTO, I think in retrospect it was a good decision to just go with the System One instead of waiting for the S9 VPAP to be released: On the System One BiPAP Auto, the IPAP and EPAP are allowed to increase independently of each other, but that's not true on the VPAP Auto. Hence, when I start having flow limitations or hypops without clusters of OAs or snoring, it's only the IPAP that goes up. The EPAP stays nice and low and so my aerophagia stays manageable. On the Resmed S9 VPAP, the Auto algorithm increases both IPAP and EPAP at the same time in response to any event other than CAs. In other words, the pressure support (IPAP-EPAP) is variable on the System One and is fixed on the Resmed S9. I wrote about differences in the AUTO algorithms and a synopsis of the on-board data differences between the S9 VPAP Auto and the System One BiPAP Auto at some length in
this thread and
this thread
Re: Frustrated
Posted: Thu Nov 10, 2011 7:01 pm
by Perrybucsdad
Thanks Robysue... I'll make sure to read though those posts. If I have to go the BiPap route, I tend to want to go with the ResMed because I have the humidifier (well renting) and I purchased the take a part water tank and also purchased the climateline. I do love the climateline and don't miss haveing to worry about rainout, but that can't be my deciding factors.
Does anyone know where I can find the clinicians manual for the S9 Bipap? Same with the PR Sys One? I'd just like to start reading up on these when I have time.
Thanks,
John
Re: Frustrated
Posted: Fri Nov 11, 2011 7:26 am
by Perrybucsdad
Well, I tried the 15cm last night as the min, but it was inconclusive. For the first time in a long time, I had leak issues. No idea why either. I think my doctor and his comment jinxed me last night.
I will repeat again and see what happens.
Re: Frustrated
Posted: Fri Nov 11, 2011 7:40 am
by nichola
I believe the issue is the bottom pressure too.
In fact i had a very similar issue which i am only now starting to get under control. I have the same issues with hitting 20, BUT it is worth noting since i have upped the bottom pressure that has reduced considerably.
The mask leaks are likely due to the fit with the higher pressure.. you probably need to tighten you mask a tiny bit because of the added pressure. It took me a week to get my mask right at the higher pressures and every time i clean the bugger getting it back in position is a pain in the butt.
Id give it two weeks and see what happens
Re: Frustrated
Posted: Fri Nov 11, 2011 7:46 am
by Perrybucsdad
Thanks for your advice, but the tightening of the mask is not the issue. I will have from time to time an itch on my nose or something and I will wiggle my finger under the gasket and scratch it. Sometimes that will cause the pillow to work itself out from the grove in the hard shell of the mask and cause the leak. This I believe is what happened last night.
When I place the mask on and run the mask fit test, it will inflate all the way to 20, and I have no leaks with the way I have the headgear. You can also normally tell if the headgear is not tight enough if you just push on the mask and the leak stops. With last night, the leak never stopped when I did this and that was because it couldn't get a seal with the wedge it created in the groove.
Also, overtightening can be detrimental I have found on the FX. That cushion of air needs can't be too tight or it will not seal correctly.
Re: Frustrated
Posted: Fri Nov 11, 2011 7:51 am
by nichola
Perrybucsdad wrote:Thanks for your advice, but the tightening of the mask is not the issue. I will have from time to time an itch on my nose or something and I will wiggle my finger under the gasket and scratch it. Sometimes that will cause the pillow to work itself out from the grove in the hard shell of the mask and cause the leak. This I believe is what happened last night.
When I place the mask on and run the mask fit test, it will inflate all the way to 20, and I have no leaks with the way I have the headgear. You can also normally tell if the headgear is not tight enough if you just push on the mask and the leak stops. With last night, the leak never stopped when I did this and that was because it couldn't get a seal with the wedge it created in the groove.
Also, overtightening can be detrimental I have found on the FX. That cushion of air needs can't be too tight or it will not seal correctly.
I have the exact same mask... try tightening the bottom straps and losening the top...
is the leak on the top of the nose? if it is i have found fixing those easiest by sliding my finger under and pulling the pillow out a little so it inflates fully fixes them
the fx is very hard to not be leaking when you hit 15 and above :/
Re: Frustrated
Posted: Fri Nov 11, 2011 8:06 am
by Perrybucsdad
nichola... it's not the tightness. The mask pillow was not properly in the grove and that is what caused the leak.
Re: Frustrated
Posted: Fri Nov 11, 2011 8:11 am
by nichola
ummm ok i will stop trying to offer help
Re: Frustrated
Posted: Fri Nov 11, 2011 9:05 am
by Perrybucsdad
It's not that I don't appreciate the help, but I am really familiar with the tightness I need for the mask not to leak. This, upon inspection after my initial post, was clearly the grove holding the cushion in. I hate those darn things as they can easily slip out if you are not careful. Being that I was lax with my cleaning schedule in the past, I didn't have to mess with it too often, but now I wash them first thing each morning so they dry by night and have to fiddle with them before bed. OH well, tonight is a new night.
I am happy to see that your top number came down with the increase in the bottom number. Pugsy had stated the same thing and a thread she had sent indicated similar results. I hope that will happen to me as well.