Six months and still struggling

Hi everyone, I'd like to get some help from the group here on figuring out my apnea therapy. I've been at this for six months now with the AirCurve 11 (currently) and I'm not finding any success. I think my tongue dropping off the roof of my mouth is my main issue.

Here are the last 30 days of my SleepHQ data, plus Apple Watch data too: https://sleephq.com/public/teams/share_ ... /dashboard

I'm going to try to condense my history as best I can.

BACKGROUND:

2022: Had a tonsillectomy because I showed an AHI of 30 on a sleep test and was waking up gasping for breath. The surgery reduced my AHI to 3 and I felt subjectively much better.

2023-2024: Definitely experienced periods of fatigue that were usually related to waking up in the middle of the night and not being able to go back to sleep. I assumed this was a psychological issue related to anxiety and sleep maintenance insomnia because I was shown to "not have apnea anymore." So I worked on some psychological approaches, but didn't really find any success with the night wakings.

Late 2023: Decided I needed to get tested for apnea again and found that it had increased to around 10 on a sleep study. I had gained weight so I tried to lose weight. I lost a significant amount of weight, about 20 pounds, but yet I still did not feel better and I still showed that I had an AHI around 8 on the post-weight-loss sleep study.

CPAP ATTEMPTS:

First try: Got an AirSense 10 through insurance. Did not help. I could not get full face mask to seal. I'm a mouth breather and realized I haven't been able to breathe through my nose all my life. Tried nasal pillows and could not breathe at all so I gave up quickly.

ENT Surgery: Consulted an ENT and got surgery to reduce my turbinates with a microdebrider device and also fixed my deviated septum. I can now breathe through my nose again. Which is really nice.

Second try: Tried CPAP again but auto pressures were no good. When I tried to raise pressure it felt like too much and would wake me up. I started reading UARS subreddit and Barry Krakow and did a consultation with him. I decided I would try to get a bilevel machine. I got my insurance to pay for it and I currently have an AirCurve 11.

BiPAP TITRATION JOURNEY:

Decided to get into self-titration because I wanted to try to solve the problem with BiPAP before moving onto more serious options like surgery. I started working with a sleep tech who I'm still working with now to try to titrate myself. I also consulted with Dr. Barry Krakow and he encouraged me to focus on nasal issues before figuring out best PAP pressures.

Used the BiPAP and tried a lot of different pressures to see what worked. I tried lots of things. Tried EPAP up to around 7 and then raising PS up from 4.

Around like 7 EPAP, 12 IPAP on S mode I couldn't tolerate it and backed off. I tried other settings, somewhere between like 5-10 EPAP and 4-8 PS, and nothing really worked. Higher PS seemed to cause leaks and definitely caused very bad aerophagia so I got a little scared of higher PS.

Since then I have experimented with higher EPAP. For weeks I've been using CPAP 13 with EPR 2. I don't feel as BLOWN UP as I do with higher pressure support, so it’s more comfortable. But at the same time I still am getting really inconsistent results. I wake up frequently throughout the night and just can't seem to get any solid sleep.

I still feel extreme fatigue nearly every day. Yet my AHI from the machine usually shows like somewhere between 0-2.

CSMA SLEEP STUDY (Dr. Jerald Simmons):

Frustrated with BiPAP not helping, I got a sleep study done at the CSMA clinic with Dr. Simmons in September. Flew to Texas from NJ for it. They found that my optimal pressure was 8 CPAP with EPR 2. They said pressures above that exacerbated leak. They did not even try me on BiPAP because they said all events were resolved enough at 8 EPR 2.

Later on Dr. Simmons told me that he thinks the Pes device actually stimulated my nasal airway and that that's why I had subjectively one of my best nights while there. Which, of course I thought was weird given all the wires I was hooked up to. But I really did feel I slept great. So he thought I probably needed more.

I consulted with Simmons after the test and he thought that actually something like 10/5 pressure made more sense because the Pes device probably overstimulated my nose giving a wrong result. Didn't feel great about going to Texas for that, but whatever.

Simmons also said that UARS is sleep apnea and there's really no reason to use the term UARS. So I didn't even get a real "UARS diagnosis," but that said, he believes lower-obstruction arousals are included in the definition of apnea, so he's not writing me off or anything—he does think I have apnea. He just defines it differently.

I have not gotten much help from CSMA since then. I keep calling to ask for help given how horrible my sleep has been but they are very reluctant to do anything unless I have an appointment, and it's hard to get on their schedule unless you have many weeks' advance notice.
I also was tested for narcolepsy and hypersomnolence by CSMA (Simmons' clinic) and was negative.

CURRENT SITUATION:

Simmons' office is saying that I should give each pressure change two weeks to see if it helps me. I just don't understand that because in a sleep study, they change you every couple minutes if they feel your events are not being resolved. So why do I need to wait so long to make pressure changes? I really don't have so much time to suffer.

I am also not sure how much my nose is an issue. I am over 6 months post-turbinate/septum surgery. Up until a month ago, I used mometasone nasal rinse nightly (similar to fluticasone or Flonase) as well as azelastine nasal spray twice a day. But I stopped using all of this because I find that my nose doesn't feel any different with it. When I am upright during the day I can breathe well through my nose and it's great that I can do this for the first time in my life.

BUT I do feel my nose blocks up on the side I'm sleeping on at night. With the nasal pillows I feel I can breathe through my nose, but it's probably not perfect. And I use mouth tape and Intake nasal strips and a cervical collar.

Btw I've tried Afrin a few nights and don't notice a big difference.

My setup: AirCurve 11 and P10 nasal pillows mask. Generally the mask feels comfortable for me.

MY CURRENT CONUNDRUM:

I am currently slowly increasing my pressures by 0.4 every night to see if it helps. But for example, last night I woke up multiple times after moving up from 13.6 EPR 2 to 14 EPR 2. Why was the sleep so much worse than the night before? I have no idea. But looking at my Apple Watch data I am waking up constantly.

My theory is that my biggest problem is my tongue dropping during REM. This happens to me nearly every night. When I am near waking time, I feel air rushing into my mouth behind my mouth tape and it wakes me up. Since I'm using a cervical collar and mouth tape (and I've used chin strap in the past too) I’ve struggled to solve this. I've experimented with what's happening when I'm awake and I'm pretty sure that even with those things in place, my tongue is dropping off the roof of my mouth. I've tried training my tongue to stay in place during the day but it just doesn't seem to work later in the night.

The other issue that I frequently experience is wetness in the tape I'm using. I use kinesiology tape horizontally across my lips and then I cover that over with a larger strip of Cover Roll stretch tape going cheek to cheek. I do have a beard so this kind of set up is the only thing that really works. The wetness seems to get better when the humidity is at one versus two, but it's inconsistent and sometimes I just get wetness regardless of the humidity level. It's hard to tell if it's caused by the humidity or the mouth opening and drooling or both.

TONGUE STABILIZER EXPERIMENTS:

I bought a cheap tongue stabilizer device (this one) on Amazon and tried it last night. It did seem to keep my tongue in place but when I put on my nasal pillow, the pressure got really tight in my mouth and started squeezing my tongue and so I'm not sure if it would work along with CPAP.

That said I was very curious to see if it would work and I'm thinking of trying it tonight without CPAP just to see what kind of effect that has on my sleep. The problem is I think I still need CPAP because I'm not really able to breathe through my nose without the nasal pillows.

I'm exploring some tongue stabilizing solutions and am hopeful that these may help me, though I'm not sure if they'll work alongside CPAP:

Good Morning Snore Solution
AveoTSD
Airwaav
NoseBreathe (trainer or full mouthpiece)
QuitSnoringSolution ST-2

I'm hopeful that maybe something like the Airwaav or NoseBreathe might work better because it keeps my tongue on a shelf and creates natural suction, and not held in place by suction, which is uncomfortable.

I'm open to trying a mouth guard to see if keeping my jaw in place might also help keep my tongue on the roof of my mouth too. I've tried the ZQuiet one and it was very painful so I couldn't continue with it. But maybe holding my jaw forward is what I need.
I'm also very curious about the iNap device. I'm wondering if that might be what's needed to keep my tongue in place and prevent the drop which causes the air to flood into my mouth.

I should mention that I also at one point tried the MouthShield to try to keep my mouth closed, but I found that it was very painful and uncomfortable and I don't think it really helped anyway with my tongue location.

BOTTOM LINE:

I'd like to at least eliminate the tongue drop variable so I can figure out then if I need more PAP pressure and what to do from that point forward. Any advice would be greatly appreciated!

Any prescription or OTC drugs in addition to mometasone nasal spray?

I take drugs for ulcerative colitis (mesalamine) but I'm pretty sure they're unrelated to my treatment. Nothing psychoactive.

A few observations:

You go to bed at around 1 a.m. most nights, it seems, but your sleep schedule is pretty irregular aside from that. I'm especially curious to know why there are so many breaks in therapy, some of them quite long. What's going on there? Maybe the colitis? Or something else?

I also see that your total time per night using the machine isn't nearly enough for getting a solid 8 hours of actual sleep.

I can see that you change your settings quite frequently. Please do change one thing at a time, and give each change at least three or four nights before trying to evaluate. Yes, a sleep study is just one night, and a titration study may have you mere minutes or hours per each change in settings. But those are very sub-optimal features of sleep testing. Not much we can do about that, but it's not good to duplicate those features when we don't need to.

You have a lot of arousals. Some seem to come after leaks; others after flow limitations; and still others for no obvious reason. For the leaks, you can try readjusting your mask after viewing online videos. For flow limitations, the best tool is pressure support, though for some people higher pressure is also part of what helps. -- That's assuming your FLs originate in your lower airway, where the tissues lining your airway can relax and sag when you're asleep. If they're originating in your nose, however, your settings are unlikely to help, because the nose has a fairly rigid structure.

For the arousals, you might get some help by making sure you're following these guidelines for better sleep:

• Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
• Set a bedtime that is early enough for you to get at least 7 hours of sleep.
• Don’t go to bed unless you are sleepy.
• If you don’t fall asleep after 20 minutes, get out of bed.
• Establish a relaxing bedtime routine.
• Use your bed only for sleep and sex.
• Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
• Limit exposure to bright light in the evenings.
• Turn off electronic devices at least 30 minutes before bedtime.
• Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
• Exercise regularly and maintain a healthy diet.
• Avoid consuming caffeine in the late afternoon or evening.
• Avoid consuming alcohol before bedtime.
• Reduce your fluid intake before bedtime.


In your place I'd leave the settings along for a few days and work on following the guidelines and improving the sleep schedule. I'd also start keeping a written record of how rested you feel each day so you can try to find correlations with other factors, including your settings, sleep schedule, any pain problems, etc.

Thank you for the comprehensive response. I think maybe my post was too long because there's so much here to think about that it's hard to zero in on any one thing as THE PROBLEM.

Right now my theory is that my issue relates to my mouth dropping open when I go into REM sleep. I wake up constantly every morning feeling like air is rushing into my mouth. I've read previous threads on here about this and tried pretty much everything except a headband/strap over the mouth. I did that last night with this elastic strap (https://www.walmart.com/ip/Mueller-All- ... /188222171) and it looks like my leaks were better controlled than I've ever seen them.

Here's the night in SleepHQ: https://sleephq.com/public/41446ebc-a52 ... 6f9b51fb02

My thought was to try a few nights at my current pressure of 15/11 with the elastic strap to see if I can at least prevent the morning wakings that seem to be messing everything up.

But I'll admit I'm worried that's not going to work either because it doesn't really account for my tongue dropping. I don't really know why last night worked. I'm wondering if it has to do with the fact that I didn't even go into REM sleep because I didn't have my typical morning catch-up sleep, which is when the REM is really bad.

I spoke to my sleep medicine specialist earlier today and they think it's worth trying a better tongue retaining device. And if that fails, maybe an oral appliance to pull my jaw forward, which would then pull my tongue along with it.
Do you think that makes sense as next steps?

I agree with you that there may be many other factors affecting my therapy. But my hope is that I can at least solve the constant awakenings in the morning when I'm in REM since it's such a difficult variable. My thought is that this way, I can adjust my pressures/make other changes knowing that I've controlled for that confounding variable.