xPAP still a disaster

(/rant on)

It's been just about 3 months now and other than 2 days where I got by with 2 less cups of coffee, I am not experiencing any benefit from xPAP.

Sure, I don't snore any more but the leaks, gasping and other weird noises wake my wife up every night any way.

I have not found a solution for my mouth blowing open when pressure rises so my mouth feels like the Sahara Desert every morning.

I have tried a chin strap (pressure came out my lips), tape (haven't found any that sticks yet), and a FFM (which lasted an hour until it leaked like crazy and woke me up with face farts.

My wife had learned to sleep through most of my snoring but can't sleep through the failing xPAP noises, and since I don't feel any better and she feels worse, it's looking tempting to just say eff it.

I won't feel any different and will probably end up falling asleep on the highway either way, but if I give up on xPAP, my wife will at least get more sleep.

(/rant off)

Can't †rack all your postings, so can you repeat what your settings are and have you tried raising the min. for a few nights?

Julie wrote:Can't †rack all your postings, so can you repeat what your settings are and have you tried raising the min. for a few nights?

Settings are in my sig.

If I recall, your's is an experimental treatment based on possible UARS mostly because it was something to try. I'd get back to my Dr and tell them it's not helping and move on to the next possible solution to your sleep issues.

TASmart wrote:If I recall, your's is an experimental treatment based on possible UARS mostly because it was something to try. I'd get back to my Dr and tell them it's not helping and move on to the next possible solution to your sleep issues.

I would love to do that, but the ENT has already said there's nothing structural they can see, so surgery is not even an option. I don't know if they have more extensive tests they can do - they only looked around with an endoscope...

The options are grim and the results of not treating it are even grimmer.

HAve you seen a neurologist and had an in-lab polysomnogram? Sorry if you have, I cannot recall. However, if you are suffering from disturbed sleep there are many non-breathing related causes, these are difficult to identify and address, but the first step would be to stop looking for structural defects if none exist and look for neurological causes.

TASmart wrote:HAve you seen a neurologist and had an in-lab polysomnogram? Sorry if you have, I cannot recall. However, if you are suffering from disturbed sleep there are many non-breathing related causes, these are difficult to identify and address, but the first step would be to stop looking for structural defects if none exist and look for neurological causes.

With the ASV, I have had periods of no mouth leaks, and my flagged hyponeas go down along with disturbance related breathing. Odds are I will still have some disturbances, but most people do. It appears that the ASV is capable or smoothing out my sleep - how much is yet to be determined because of all the leaks. If I could get solid sleep without flagged events and leaks, and THEN I still had too many disturbances, I would follow up with a neurologist.

Yes, I did have an in lab study and an in lab titration. If I can get rid of the leaks and am still too disturbed I'm sure they will schedule another one.

The Dreamwear mask doesn't leak during the "mask fit" option - even moving it around some, so my guess is that 100% of the large leaks are through my mouth.

I supposedly have an Amara View on the way, but with pressures frequently going to 25 and the way I sleep, I have my doubts that it will solve the large leak problem.

I use a bi-pap with high pressure 23/19. The only way I was able to successfully plug up the leaks is with liners. I started with the rem-zzz's liners and then made my own from that point forward.
I use the z-mask by Probasics. I like that it has NO forehead support and the on our cpap.com they are only $60. Once I started using the liners I was able to use whatever mask I wanted.


I wish you well..

xxyzx wrote:nope

you list some equipment
not any settings

Then what are these?
And ASV doesn't have EPR.

Currently using S9 ASV 8-12 EPAP, 5-17 PS.

Pugsy wrote:

xxyzx wrote:nope

you list some equipment
not any settings

Then what are these?
And ASV doesn't have EPR.

Currently using S9 ASV 8-12 EPAP, 5-17 PS.

Shouldn't he know that ASV does not have EPR since he apparently has an ASV machine? LOL.

Marillion wrote:Shouldn't he know that ASV does not have EPR since he apparently has an ASV machine? LOL.

You would think he should know but I think in his haste to increase his post count he just replies without thinking things through or even really reading thoroughly what has been posted.

S9 ASV 8-12 EPAP, 5-17 PS.
are pretty much all of the available setting on the S9 ASV in Auto mode...which I happen to know is what is being used.
Reducing PS max seemed to make sleep quality worse and sleep quality is what the main problem here happens to be.
Using ASV to help improve sleep quality because of potentially UARS going on. Not OSA and not central apnea for sure...documented by in lab sleep studies both with and without cpap.

OP also had a large number of spontaneous arousals on the in lab sleep study...and the best cpap therapy in the world isn't capable of fixing arousals not related to some sort of breathing issue. We were hoping that reducing the arousals from the potential UARS stuff would help the overall sleep quality enough to offer relief. We have no idea what is causing the spontaneous arousals...that's why they get called "spontaneous"....no known culprit to blame.

Pugsy wrote:

Marillion wrote:Shouldn't he know that ASV does not have EPR since he apparently has an ASV machine? LOL.

OP also had a large number of spontaneous arousals on the in lab sleep study...and the best cpap therapy in the world isn't capable of fixing arousals not related to some sort of breathing issue. We were hoping that reducing the arousals from the potential UARS stuff would help the overall sleep quality enough to offer relief. We have no idea what is causing the spontaneous arousals...that's why they get called "spontaneous"....no known culprit to blame.

Agreed. I suspect there is something else going on. The OP needs to take charge and advocate for themselves with the doctors and medical system. If one isn't persistent and methodical in situations like this, it is very easy to fall by the wayside. He needs to go get help for whatever is causing the UARS, I would think. I would keep the pressure on my doctors until they figure this out. Get a second, third, fourth or fifth opinion if need be. At least that is what I would be doing here in Canada. But I am not sure that one can do that in the US...

Marillion wrote:Agreed. I suspect there is something else going on. The OP needs to take charge and advocate for themselves with the doctors and medical system. If one isn't persistent and methodical in situations like this, it is very easy to fall by the wayside. He needs to go get help for whatever is causing the UARS, I would think. I would keep the pressure on my doctors until they figure this out. Get a second, third, fourth or fifth opinion if need be. At least that is what I would be doing here in Canada. But I am not sure that one can do that in the US...

Right now he is in the VA system and the VA sucks.

We don't know for sure if he even has UARS...need a very special sleep test with very special equipment to know for sure and the VA isn't going to be up to speed on that stuff.
We do know he doesn't have sleep apnea...and we do know that there were a large number of respiratory related arousals which could be UARS but there were even more spontaneous arousals that were unrelated to respiratory stuff and while xpap can help with UARS (assuming he does have UARS) it isn't able to do anything for the spontaneous arousals. Xpap only helps with the respiratory related arousals...not the arousals not caused by respiratory stuff.
I have no idea what to do about the spontaneous arousals because we don't know what is causing them.

EPAP alone doesn't provide EPR on an ASV machine.
It's the combination of EPAP plus PS that makes it offer something similar to EPR.
It's possible to set PS to 0 and if that was the case there would be nothing similar to EPR until PS kicked in...as in PS settings of 0 min and say 15 max.

It's possible to setup an ASV so that it functions like an apap machine with no exhale relief at all. It's all in the settings and there's a lot of different combinations.

xxyzx wrote:when epap is below ipap it sure does

Ah...but that's not what you said.

This is what you said...and as usual it is incomplete. You didn't mention PS at all.

xxyzx wrote:you should know the epap provides the EPR on an ASV
and not limited to only 3

And yes, thank you I am quite aware of what the ASV machine will or won't do since I used one for about 4 years I guess it has been.

There is no mention of EPR in the settings shown by the OP because EPR isn't available or a setting choice on the ASV machine.
Yes, we do get EPR like exhale relief by using PS but you failed to mention PS.

and OP does correctly have his machine's settings shown in his signature line which you said he didn't.