Leakage galore

[GreenAvocado]

Hi jlm255, just wanted to comment on your struggles with the mouth leakage. I had a similar surgery (LAUP- Laser-assisted uvulopalatoplasty) back in 96, and I also struggle to maintain the proper seal for nasal breathing while asleep.

Like you, I have no trouble breathing through my nose while awake; it's how I breathe by default, and I don't really even think about it. But the moment I fall asleep something shifts in the back of my throat and I get an instant stream of air out of the mouth.

I think that what's going on is my tongue is relaxing and ever so slightly breaking the seal, then the PAP pressure just forces it open. I think the surgery left me with just enough soft palate tissue to make a seal with some minimum effort, and once the effort is removed the seal is no longer maintained.

I've tried mouth-taping with the nasal masks without much success. What happens in my case is that once the tongue loses its seal, the PAP pressure forces air so violently into the mouth that it wakes me up instantly. The cheeks puff out and I get bad pain in my eyes & ears from the force of it, and the overall pressure shock feels vaguely dangerous.

Interestingly enough, I tried mouth-taping before I got my PAP, and it was actually very useful for alleviating dry-mouth. It just doesn't work for me with the added pressure of the PAP.

So I've had to move on to using full face masks. Trying the Evora now. Obviously it leaks way more than a nasal pillow, but it generally works. What I don't like is that I still end up with a dried out mouth almost every time time. In fact the dry mouth is way worse than it was before PAP therapy. I guess the volume of air moving out of the vents is enough to dry me out really fast. I have Sjögren's as well, so the dryness is really a problem for me.

Feel free to get in touch if you want to trade problem-solving stories.

[jlm255]

Thanks Laurence Shaw very helpful that that's actually what I did the next night. I moved it so that it is definitely not wrapping around the chin, only underneath the chin, because we don't want a backwards movement for the jaw, right! We're apneics after all. If anything, the opposite direction (oral appliance therapy). 

Supplier #37 -- looks like a very nice chin strap. Thanks for showing, I bought the Dual Band Plus.

I'm appear to be having a problem with Trigger and Cycle (Inspire / Expire). I'm pretty sure I am in the "mixed" or straightup "hypoventilate" category given so beautifully on this video below by CPAPFriend and Dr Thomas (very helpful thank you!)
https://www.youtube.com/watch?v=EdhTJwvn1jI&t=2022s
My phenotype starts around the 26 minute mark. My breaths per minute were like 8-10 before adding EERS and now it is in the 12-13 range average. Even in the day I think I am a slow steady breather.

So I need some kind of bilevel or ASV, CPAP does not fix my issue. If you look at the Inspire time on the attachment, it is all over the place and I think it is a sign of constant respiratory distress.

So I moved my Trigger/Inhale to the easiest setting #5 (if it thinks I might be starting a breath, it starts it) and Cycle / Exhale to the hardest setting #1 (well #2 in the first wakeup and then moved it to #1 and went back to sleep). I also use Ti Control of 1.1 min, 4 max. Whenever I drop Ti minimum below 1 disaster seems to strike, severe anxiety next day, lots of spikes on my pulse (Wellue oxygen watch).

It has cleaned up a lot, still not perfect. But the issue at hand is if you look at wakeup1, right before I wokeup I basically stop breathing for like 15 seconds and I believe that is what woke me up. It wasn't flagged. After you see a huge inhale which to me means i was oxygen hungry.

Then after I went back to sleep (for about 45 minutes) a similar pattern. Woke me up again.

Anyone have any ideas for me to try? I might buy an ASV unit and see how that goes. If anything I think with a pressure support of 5 (IPAP 9, EPAP 4) I am overventilating myself on average, but the underventilating times where my tidal volume drops to 0 is where the damage is occurring. My minute ventilation is typically in the 10-14 range.

Even though my AHI is 0.00 consistently I think it is obvious on the CPAP nightmare graph that AHI = 0 is not a guarantee of fixing the problem.

[jlm255]

Green Avocado, extremely interesting, thanks for replying! I sent you a PM.

Yep for me the leakage tends to happen the moment I fall asleep. I have had nights where I fell asleep like 5 times, all to no avail because the instant I fall asleep this whooshing sound of air wakes me up. Obviously very frustrating because it takes at least 30 minutes to an hour to refall asleep for me (at least on those nights that was the average).

For some reason it doesn't happen every night though (thankfully).

[GreenAvocado]

In that case maybe you can train yourself over time to maintain the proper tongue position and prevent the leaks. For me it only seemed to work when I buried my head under the right combination of cervical collar and various arranged pillows. And then I would spend the subsequent one or two nights failing to replicate the position and ultimately give up, and put on the FFM.