Leakage galore

[jlm255]

I have a big leakage problem that I can't seem to control. Here are some facts about me that may help:
Nasal congestion problem, had a septoplasty and turbinate reduction as well, on allergy shots and it seems cold air congests me. I have tried the humidification a few times and it seems to make the problem much worse.
GERD issues. Had the Linx surgery to correct. I don't think it is tight enough so not sure it helped.
Mask: I use the P10 medium pillow. I tried smaller in the hopes that it would get up further into my nose and thus prevent leakage but the night I tried XS it felt like it was extremely irritating to my nose, woke up an hour later and switched to small. I think small is also not the best fit because if I fiddle with it (simulating getting pressed up against a pillow) the leakage is pretty bad. Back at the medium.
Recently I tried the eclipse halos, Stuart even did a zoom call with me (thanks!) and I can't seem to get it right. My leakage has been significantly higher, maybe I'm just doing it wrong. I feel very confident that the increased leakage is coming out of the nose where the tape is coming up a little.
I've tried just straight CPAP and it does a decent job, Leakage seems to be quite a bit less (almost 0) especially at low pressures like 4 but I seem to get substantially higher flow limitations and generally seem to feel less good (at least compared to a BIPAP night where the leakage wasn't too excessive, when leaks excessive with BIPAP, CPAP probably would have been better). Sometimes I put it at 4 because my tongue should be not blocking and so all it has to do is blast its way through my nasal passages and soft palate, how much pressure should that take? 4 seems like it would be enough.
Tongue issues: I was on CPAP for quite some time and felt awful, I added a mandibular advancement device, first time I did slept 4 hours only and felt the best in my entire life, but have had inconsistent results since then, some days feel amazing, other days super despondent and depressed or high anxiety. I feel extremely confident that this is 100% due to the quality of my sleep and also frustration that I just can't get this correct. Since then I now use a "tongue bulb" or tongue retainer which seems to do better than the jaw device. So I don't tape my mouth, but my mouth is pretty much covered from the silicone. Yes there is a possibility that air is escaping out the corners of my mouth. 
I know most of you are going to suggest first that I get rid of the tongue bulb and just tape my mouth, but I have tried that many, many times, and I highly doubt that it is a placebo affect because many times I took it out with great confidence that taping my mouth was going to be better, and I have never yet had a fantastic day that I can remember without the MAD or tongue bulb.

I sleep almost 100% of the time on my left side, partially because of the GERD issues. Even after the linx surgery when I sleep on my right side I get really bad results, oxygen desaturations like crazy compared to the left side. I use a Wellue oxygen watch and I have a Wyze video camera to see what things are looking like, I use a time lapse generally so I can go over it quickly. I am terrified to sleep on my back and never do it, I feel like my tongue will flop back. There was a time where I slept sitting on the couch and surprisingly felt like I slept so awful, I would have thought it would have helped with the GERD. I'm almost positive I was using the soft cervical collar. I generally don't use the collar, have never really noticed any improvement but I am open to trying it again.

OK so the crazy thing is that if (when awake) I open my mouth as wide as possible, my machine will show zero leaks. So this is probably naive but I don't get how having the mouth slightly open would create leaks.

Obviously though sleep is not the same as being awake because the only idea I can think of that is causing my leaks is that even before I drift off to sleep I feel that air gets trapped somewhere and I have to "burp" it up. It's not even really a burp but it just will kind of escape out my mouth or possibly even goes back up and out the nose (in between little imperfections in the seal).

With the medium pillows on the P10 I try to simulate things that might cause leaks like pushing on it several different ways and it is hard to create a leak.

The past 3 nights I have taken sudafed to get rid of the congestion. It does a pretty good job but I also think it jacks me up and makes it harder to sleep (google insomnia and sudafed and I think there is decent evidence). I've also tried Afrin or nasal sinus rinses and the sinus rinses I feel like are sometimes counterproductive because I lay down and all this water comes out (despite doing my best to get rid of it) and even with Afrin I sometimes will still be full of snot. I blow my nose a lot when the congestion is bad and then sometimes it will go away for a few weeks. I definitely sleep better (on average) when the congestion is gone.

To avoid having to upload files one by one I made a google slides with info like my settings for the night, then my oscar data, and how I felt that day. Please DM me for the link anyone willing to help. 

Also one other thing, my inspire time is super duper messy and I think that that is a symptom of whatever problem I am having. On some nights it is like a thick blue band across the whole night (meaning that it is sometimes .5 and sometimes 4 and back and forth all night. I do some Ti control and having a minimum of 1 or 1.1 seems to help, but that might be just because it is masking the problem I am having, IE my leaks are so bad which makes me hypoxic, and the Ti control gives me a little thrust of air when I need it most. Anyway, that is what I am thinking.

I do EERS because I am pretty sure that I have loop gain. I have 3 sons with sleep apnea and they all seem to have high loop gain, adding tube length really stabilized their breathing, at least in NREM sleep. I added tube to me as well but with the leakage it won't do much good if any. But I suspect my loop gain isn't as bad as my kids. I have a pretty low arousal threshold unfortunately, the sound of leaking air was almost definitely waking me up last night.

Thanks for anyone who can help. As many of you can probably relate to, these problems are very debilitating.

[SarcasticDave94]

I'd suggest you take a look into getting the free OSCAR chart downloading it into your computer. OSCAR takes data stored on an SD card you have to put in the CPAP slot before you sleep. Otherwise, the SD card can obtain summary data only.

We're data and visual driven. You would not need weeks and months of data posted. Start with one or two within this week.

With CPAP, leaks affect results and pressure requirements. High enough, leaks affect accuracy of the report and therapy is diminished.

Also have you tried a large P10 cushion? They do not go in your nose but rest on the nares. In equals too far.

[jlm255]

Attached. Last night I started at 10.2/6 with Ti control 4/1 then I switched to CPAP 8, then 9.2/5 in an attempt that less pressure would mean less leaks. The only real sleep I got was about an hour at the first (felt really crappy) and then about 3 hours at the end.

I am very confident that all the little blips of leakage throughout the night was me starting to fall asleep and then the leakage waking me back up. Normally I can sleep through quite a bit of leakage (still crappy sleep but asleep nonetheless) but last night every little leak was waking me up which I attribute to the sudafed, not sure what else it could be. I think I "almost fell asleep" last night at least 5 times.

Then I attached Jan 30th because it was CPAP mode pressure 7, you can see my inpiration times all over the place, quite a bit of leakage, and lots of flow limitations. That may have been bad luck or some other variable, with pressure 4 I have had much less leakage, and usually inspire time all over the place, one time I believe it looked a bit better.

I have tried the large P10, I do have it, this was before I cared about leakage so much and I think my leakage was more but I'll try it again awake now to see how it works.

[SarcasticDave94]

Leaks pattern seems to include some mouth and mask leaks. Typically mouth leaks are broad arching looks, and mask leaks look spikey.

[jlm255]

Thanks Dave, much appreciated.
After reading about palatal prolapse, I definitely had it and I would guess still have it a little bit. I had UPPP surgery in 2022.
I think that's why when awake the air never goes out my mouth but when asleep it does.
Trouble is I think if I tape and the air can't escape it will bulge in my cheeks and cause an arousal. I have actually experienced this several times and seen bulging cheeks in my oldest son (also sleep apnea).
It seems that raising the pressure and going away from pressure support is what most people are suggesting, anecdotally when I go below PS 4 trouble seems to begin, also I use Ti control some and anything under 1 also seems to cause trouble (might be a combination of the settings).
I was thinking I'd lower the EPAP to 3 and that would make it easier for it to slip out the nose but I guess it's the opposite? I tend to get insane nasal congestion with IPAP above 11.5 so if I raise pressures very high I would guess that I would get congestion.

And for some reason I seem to feel better with a lower rise time, like 750 or 700.
First attachment is to show what my breathing looks like with a leak.
With a CPAP pressure of 4, this is what things looked like one night (attached).
Another night I had pressure of 7, if you look from 2 to 230 am the leak stopped, but then my inspire time starts undulating wildly.

[jlm255]

In digging through my son's Oscar data I found this, I think it looks like palatal prolapse.

[jlm255]

Anybody seen another case where the inspire time changes so often? Thanks,

[Rickyricardo]

How new is the P10? I quit using it but I could tell when the rubber straps were too floopy because the leak rate would rise and those white circles with the teeth do little because they are not strong enough - the teeth can't get decent purchase in the straps to take out the slack.

I used to pull the straps through the white circles then stitch a couple stitches through the straps but eventually I'd switch straps to the much cheaper ones from Amazon or any non ResMed version since they all fit and they all suffer the same problem.

I finally dug out my old Swift FX and got a new one as well from my DME and because it has proper adjustments, my leak rate is nothing. From feel and lots of use I think the Swift and P10 are identical sized pillows in terms of nostril size and spacing between the two pillows.

[jlm255]

Thanks for the response. Ricky. Yeah my P10 is at least a year old. But I did fix my leakage for the most part by using a chin strap, which sometimes gives me a headache. Just tying a shirt around my head under my jaw seems to work just as well or better. I think when I fall asleep my jaw relaxes just enough for little bubbles of air to escape, because I have used a camera to watch my mouth all night long and it doesn't gape open, appears basically closed all night.

One thing I don't understand is that if I am awake with the nasal pillows on, and I open my mouth up completely, it says 0 leakage. So the only thing that makes sense to me is that when I'm asleep the palate closes and diverts air so that it has to go out the mouth.

I still don't get the inspiration times, I would have thought that a long inspiration time would mean that I am inhaling constantly for four seconds (or whatever). However, in looking at the data it appears that what is actually happening is that my exhale is blunted and so the next breath has a very short inhale time (more of an afterbreath). So I guess inspiration time is the difference between one peak and the next peak. But much of that time is spent in exhaling not inhaling.

So my choppy inspiration times are more a factor of choppy breathing rather than me just inhaling for 4 seconds straight, which is how I was originally interpreting it. And it is quite difficult to inhale that long.

[LaurenceShaw]

Thanks for the response. Ricky. Yeah my P10 is at least a year old. But I did fix my leakage for the most part by using a chin strap, which sometimes gives me a headache. Just tying a shirt around my head under my jaw seems to work just as well or better. I think when I fall asleep my jaw relaxes just enough for little bubbles of air to escape, because I have used a camera to watch my mouth all night long and it doesn't gape open, appears basically closed all night.

I assume that when you say you used a chin strap, you mean a traditional neoprene one.  The headache is probably caused by the fact that the design of traditional chin straps is problematic.  They wrap around the tip of the chin and the top, back of the head, the problem being the jaw joint (which is located just in front of the ear) falls right along the line between those two points.  (The More Info page of Supplier #37 has a good x-ray drawing which illustrates this.) That means that traditional chin straps force the jaw directly into the jaw joint, which is the most uncomfortable and ineffective direction to be applying force for this purpose.  Your shirt wrapped under you jaw is a great solution and about halfway to the Knightsbridge Dual Band chin strap, which has straps which pass under the jaw and lift vertically.  

You may want to look into the Knightsbridge.  It will probably stay in position through the night and is easier to use than your shirt solutions.   (Please use the Supplier #37 link!  Keyword searches will still likely lead you to counterfeits, although that should finally be rectified in a few weeks!)