UARS? Need help

Hi, I hope I'm posting this correctly this time. I tried reading through the directions about posting a screenshot but it's a little confusing. I'm using imgur, but I don't know if that's required.

Anyway, I haven't had a decent night of sleep in years. I was diagnosed with sleep apnea in 2019 (AHI 37). I was given a CPAP with a pressure of 6, but it just wasn't working. My AHI was always under 5, but I always felt like crap. The doctor wasn't helpful wasn't helpful at all when I told him this. I convinced him to write a prescription for an ASV, but my insurance wouldn't pay for it because there were no central apneas in my sleep study, so I bought one out of pocket. I've tried different masks, different sizes of masks, different settings, mouth tape, chin straps, nothing was working. I was desperate, so I had jaw surgery in 2021 to correct the sleep apnea. The sleep study afterwards showed zero obstructive apneas. But I still haven't had a good night of sleep.

I've done 3 Oscar data therapy sessions with TheLankyLefty from youtube. He made some suggestions, but they didn't work either. He's the one who suggested mouth tape, which I do think helped with leaks. He mentioned that my problem looks more like UARS than OSA. He said I should be using a BiLevel instead of CPAP (I was using my ASV on CPAP mode), so I bought a an AirCurve BiLevel (not Vauto). I tried the settings he suggested, but it just wasn't helping. He said ASV could be manipulated to work the same way, so I've been using ASV mode ever since with different setting.

If the pressure is too high I get a lot of mouth puffing (with mouth tape). I've tried the tongue-on-the-roof-of-my-mouth tip, but it's difficult to do because I have to wear a retainer at night (because I had braces after jaw sugery).Right now I'm using a cervical collar to try to keep my jaw from dropping.

I go back and forth between using my machine and not using it. I just get really frustrated and give up sometimes. I've used a pulse oximeter on nights when I'm not using my machine and my oxygen levels always look good. I've used a snore app and can hear that I do have some light snoring when I sleep (if I don't use mouth tape).

My AHI is always under 5. Most of the time it's 0 or close to it. Is there a way to look at my data and tell that my issue is UARS? I've tried every setting I can think of. If the EPAP is too high it feels like I'm suffocating and I get a lot of mouth puffing, so I try to stick to a lower EPAP. My usual range for ASV is around this area: EPAP 6, Min PS 2, Max PS 11. I'm using nose pillows. I don't know what else to do.

Thanks in advance.






Not sure why I can't get the imgur link to work
https://imgur.com/gallery/S81MfUG

You got very thoughtful responses to similar questions in this thread:

viewtopic.php?t=186317

Is there something about the advice you received then that you find unsatisfactory?

I’ve looked for doctors in my area that do sleep studies with PES devices. There aren’t any.

I’m not “convinced” that I have UARS, but I did have a sleep study after jaw surgery that showed no obstructive apneas. I went to a different sleep doctor and showed him all of my sleep studies and his opinion was that I don’t have sleep apnea, and that I “barely” had sleep apnea in my first one. None of the doctors will listen when I bring up UARS, so I have no idea. I’m just guessing at this point. That’s why I came to this group, but it seems like people are more interested in snapping at people who ask for advice than actually giving advice.

I’m exhausted and feeling helpless.

Jtg073 wrote: ↑

Wed May 31, 2023 11:48 am

That’s why I came to this group, but it seems like people are more interested in snapping at people who ask for advice than actually giving advice.

i'm very sorry you feel that way. i agree that folk on here, including me, can come across as snarky. that's no way to help anyone.

having said that, i don't see any instances of folk snapping at people in the thread that miss e. linked. in fact, robysue (one of the best people here giving advice) asked you questions and pointed out some possibilities. yet you never replied.

that's your choice, of course.

i just want to point out, as politely as i can, that starting a new thread isn't really going to help much. those of us that frequent the forum read all the posts. and we can see, as it's right under your avatar, how many posts you've made. with that, we can look up your previous posts.

i'm not wagging a finger at you nor telling you what to do. i know how exhausted you are. i was the same way when i came here.

i'm just suggesting that you take it easy and try to read carefully the advice you're given.

i truly wish you good luck.

Thanks zonker. I know everyone can see my posts, but I wasn’t getting any info based on my Oscar data. I can zoom if that’ll help. I read the rules of the group and it said not to post a zoomed-in view. I was just hoping I could get some feedback on the Oscar data to see what I’m doing wrong and what adjustments I can make to get some sleep.

It would be great if somehow an adjustment to your PAP settings could fix your sleep, but this doesn't seem to be in the cards. You got some good questions and comments from robysue1; it'd be helpful to know your take on them (see below).

1) While you say you fall asleep easily every night, you have mentioned waking up over and over all night long more. But how do you know it is something with your breathing that is waking you up? Is that just a guess on your part, or do you actually wake up gasping for breath or have some other kind of evidence that it is your breathing that is waking you up instead of something else?

2) The most recent ENT sounds like he suspects that you have plain old sleep continuity insomnia; he most likely suspects that because the surgery did work--it eliminated your apnea according to a sleep study. And that's most likely why he offered the script for Trazodone. (Whether Trazodone would be the best pharmaceutical choice for treating sleep continuity insomnia is a whole different question.)

3) The fact that CPAP, APAP, ASV, and BiPAP have all not fixed your problem and your post surgical sleep study showed no sleep apnea, all points the the idea that your on-going sleep problems just might not be related to sleep apnea or UARS. Have you actually considered the idea that before you had the surgery done, there was more ruining your sleep than just OSA? xPAP fixes sleep disordered breathing, but it does not fix any other of a whole list of possible causes of bad sleep. For people with undiagnosed OSA, the usual assumption is that the sleep disordered breathing is all that's wrong with their sleep, and using xPAP to fix the sleep disordered breathing should fix the sleep. But sometimes other problems with sleep quality can emerge after the problem with sleep disordered breathing has fixed the breathing problem. And in that case, fixing the bad sleep requires addressing the other causes of bad sleep as well as the sleep disordered breathing problem.

I agree with Pugsy that since you are convinced your problem is UARS, you need to find a sleep lab that will do a sleep study with a PES device. But I think you need to be prepared for what happens if a sleep study with a PES determines that you do not have UARS.

Jtg073 wrote: ↑

Wed May 31, 2023 4:14 pm

was just hoping I could get some feedback on the Oscar data to see what I’m doing wrong and what adjustments I can make to get some sleep.

You want someone to look at your report and say "Aha I know the problem. Do this and you will be all fixed"
Is that correct?

The cold hard fact of life is you are wanting a miracle from a machine that simply doesn't do miracles and it can't fix a sleep problem (no matter what the settings) unless that sleep problem is directly related to airway issues.
The list of well known sleep problems (outside of sleep apnea which is all the machine will treat) is very, very long.
Insomnia...both sleep onset and sleep maintenance have very long lists of potential causes as well.

What are you current medications?