UARS Help - Nothing works!

[Jtg073]

Hi, new here. This is going to be a little long lol...

I was diagnosed with sleep apnea in 2019 (37.2 AHI). The doctor prescribed a CPAP with a pressure of 6. That wasn't working from the beginning. I used my CPAP every night, the whole night. I don't have a problem with wearing the mask, but I was still waking up over and over every night. The doctor's office was constantly swamped with patients and incredibly hard to get a hold of someone to tell them the pressure wasn't working. Appointments were always booked up for the next 2 or 3 months. I waited months to go back and see the doctor several times to tell him I wasn't feeling good, but he always said my AHI (with CPAP) is under 5, so there's no need to change anything. I didn't know about Oscar, and the MyAir app kept showing Clear Airway events, so I convinced the doctor to prescribe me an ASV. My insurance wouldn't cover it because I didn't have any central apneas during my sleep study, so I paid for it out of pocket. But eventually I just got frustrated with the doctor because all he seemed to care about was that my AHI was under 5. He didn't care that my sleep was still garbage. So I started watching youtube videos and reading groups like this.

I learned how to set the pressure myself, and tried lots of different pressures. CPAP, ASV, MAD mouth devise, chin straps, different nasal and full face masks. Nothing was working. I had been watching TheLankyLefty27's videos, and eventually did a CPAP therapy session with him. He made some suggestions, including mouth tape because I was getting a lot of leaks. I tried the different pressures he suggested for a while, but still wasn't sleeping great. Waking up over and over every night.

I really needed to get this resolved because I have to pass a physical exam for my job. Eventually I came across jaw surgery. It allegedly has a high succuss rate for sleep apnea, and I was getting desperate, so I had jaw surgery in April 2021. It was about a year of hell recovering from that, and I guess I'm part of the small percentage that jaw surgery doesn't work for. I could tell that my airway was a little bigger, but I still wasn't sleeping. I had another sleep study a few months after the surgery and it showed zero obstructive apneas, so my pulmonologist declared me cured.

I did a few more CPAP therapy sessions with Jason (TheLankyLefty), and he kept mentioning RERAs and Upper Airway Resistance Syndrome. I asked him what that was and he explained it, and said that's what it looks like I have. My AHI is always under 2, and most of the time under 1. I'm not having any obstructive apneas showing up on Oscar. Mostly hypopneas and sometimes Central Apneas. I don't know how to identify RERAs. But my sleep is garbage every single night, and its so hard to get out of bed every morning. Jason said people with UARS do best on a Bilevel machine. I didn't have one, so Jason said he could try to manipulate my ASV to act like a BiPap. He gave me some pressure settings to try. I tried each of them for a few days, and then had another session with him. My sleep was still horrible, so he said I should try to buy a Bipap. So I found one online and bought it (AirCurve 10 S). He gave me some suggestions for that machine, and I tried them. The pressure must've been too high for me because I got tons of central apneas.

I just don't know what to do anymore. I feel like I'm out of options. I go back and forth between using the ASV, CPAP, and BiPap, with different pressures, and then I'll go a few days or a week without anything at all. It seems the pressure isn't high enough to prevent the UARS episodes, but when I raise the pressure I get centrals and lots of mouth puffing (I'm still using mouth tape). I should also add that I think the jaw surgery deviated my septum and and gave me other sinus issues that I'm still dealing with.

So this is what most nights look like. I always fall asleep easily, but something with my breathing is waking me up over and over all night long, every single night. AHI is always really low. Can someone help me? Does this look like UARS? Is there anything I can do? I can include more screenshots of Oscar if you need it.

1398E221-8C45-4E5B-93EE-696C59EEF809.jpeg (93.27 KiB) Viewed 1233 times

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D21B4591-B68C-4806-A6DD-6BE7DC4F1767.jpeg (87.57 KiB) Viewed 1233 times

[Jtg073]

A few more

[Pugsy]

Find a doctor that will get you a sleep study done in a lab with a Pes device. That is the only way to know for sure if your problem is UARS. Don't keep guessing.
Then if you do have UARS get another sleep study done in a lab on a machine so that they can actually titrate you to a pressure that will prevent the UARS from happening. Auto adjusting machines designed for OSA or even central apneas aren't going to be helpful with UARS.

If you don't have UARS...start looking for other reasons for your crappy sleep and believe me...the list is miles long.

[Jtg073]

Hey pugsy, thanks for the reply. I haven’t heard of the PES device, so I did some googling and searched the group. Sounds interesting. But I have heard of a DICE procedure. I called my ENT and he doesn’t do it. I went to a different ENT and he refused to do it because I showed him my sleep study results and he’s convinced I don’t have sleep apnea. I asked about UARS, and he basically just shrugged me off and offered me a prescription for Trazodone, which I didn’t take.

I found this post in the group, and you gave someone else different advice about UARS and the PES. Can I ask what’s changed your mind about that?

viewtopic/t173830/Info-needed-about-PES ... l?start=15

[Pugsy]

Your history and all that you have had done to you makes your situation totally different and you shouldn't be guessing at whether or not you have UARS.

Your OSA has been fixed apparently if you had a negative sleep study post surgery. It would not be impossible for you to not have UARS and your sleep problems to be totally related to non airway issues and you need to know FOR SURE instead of guessing.

Your situation is more unique and the guesswork needs to be removed first....make an accurate for sure diagnosis and the only way to know for sure about UARS is with the Pes device.

So you can't compare your situation to that other person's situation. If he/she had done all that you have had done to you he/she would get the same advice from me.

Is there some special reason you didn't do your screen shots in the manner that we prefer ...at least initially.
The Events graph is totally absent.
http://www.cpaptalk.com/viewtopic/t1585 ... eview.html

[Jtg073]

I wasn’t being snarky, just curious. But that makes sense. I guess I need to find a doctor that does PES sleep studies. The ones I’ve seen here are pretty dismissive of UARS.

And I had a pretty hard time uploading pictures at all lol. At first they were too big, so I shrunk them down. I tried searching the group for a post explaining how to do it, but I kept getting an error saying the group was too busy to give me a search result. But thanks for that link. I’ll use that next time.

[ozij]

I agree with Pugsy.

Sticky: Newbies PLEASE READ BEFORE POSTING

[Jtg073]

@ozij Yeah, I read that.

[robysue1]

Jtg073,

In your first post you wrote:

The doctor prescribed a CPAP with a pressure of 6. That wasn't working from the beginning. I used my CPAP every night, the whole night. I don't have a problem with wearing the mask, but I was still waking up over and over every night.

And you wrote:

I had been watching TheLankyLefty27's videos, and eventually did a CPAP therapy session with him. He made some suggestions, including mouth tape because I was getting a lot of leaks. I tried the different pressures he suggested for a while, but still wasn't sleeping great. Waking up over and over every night.

And you wrote:

.It was about a year of hell recovering from that, and I guess I'm part of the small percentage that jaw surgery doesn't work for. I could tell that my airway was a little bigger, but I still wasn't sleeping. I had another sleep study a few months after the surgery and it showed zero obstructive apneas, so my pulmonologist declared me cured.

And you wrote:

But my sleep is garbage every single night, and its so hard to get out of bed every morning.

And you wrote:

I always fall asleep easily, but something with my breathing is waking me up over and over all night long, every single night.

In a later post you wrote:

I went to a different ENT and he refused to do it because I showed him my sleep study results and he’s convinced I don’t have sleep apnea. I asked about UARS, and he basically just shrugged me off and offered me a prescription for Trazodone, which I didn’t take.

I have some questions and comments:

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.