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Need advice on UARS and CPAP treatment
Need advice on UARS and CPAP treatment
Hi, all,

Really sorry in advance for the long post, but I want to share as much information as possible. I'll break it down into sections, and I've attached my CPAP results for the first two nights, and you can download my PSG results here: https://1drv.ms/u/s!Asc45368ezQs4HuGYR6D...f?e=unehah. Thanks in advance to anyone and everyone who replies. From the bottom of my occasionally palpitating heart, I really appreciate all the work you guys do to help others get better.


31 male, classic apnea/UARS symptoms, ruled out a bunch of other possible causes, diagnosed deviated septum and inferior turbinate hypertrophy, did a PSG (link above) that showed no apnea but possible UARS, got a SleepStyle Auto covered by insurance, PLEASE HELP!


So, I'm a 31-year-old ostensibly human male and have had issues with daytime fatigue and sleepiness, brain fog, ADHD (diagnosed but never treated with ADHD meds) and anxiety (with full on panic attacks since 2019, but now very successfully treated with Effexor) since at least my teens, and lately an elevated heart rate and heart palpitations (supposedly anxiety-related and harmless based on 24-hour Holter monitoring and a heart ultrasound). 

Luckily, my GP is great and tried to help as much as possible, but all the specialists she sent me to always said I was physically perfectly fine, and the neurologist I saw to check for a sleep disorder summarily dismissed me as just being depressed. After years of doing all sorts of blood tests (including B12 and D3), a hormone panel, stool tests, etc., which always came back normal, exercising religiously, trying all sorts of elimination diets for months, and trying about 5 or 6 antidepressants, none of which helped at all, I've more or less exhausted all my options.

Recently, after nearly 10 years of constant rhinitis, I went to the 4th or 5th ENT, who finally decided that my deviated septum and inferior turbinate hypertrophy warranted surgery. I was scheduled for this June 15, but as my luck would have it, I got a text from the office two weeks before the surgery saying that they were short on nursing staff, so they had to postpone it until October 2022. Yay.

Sleep study

It finally clicked for me recently that I couldn't remember the last time I woke up feeling rested, even if I slept for 8 hours or more, which is usually the case, although I do occasionally have trouble falling asleep or get periods where I wake up after 5 to 7 hours and can't fall back asleep, but that's usually due to external stress factors. So I went to get an in-lab PSG done, which showed I didn't have apnea (AHI 3.8), but I had a total arousal index of 14.6 (15 respiratory, 36 leg movement and 64 "spontaneous" in total), mostly concentrated in the REM phase (24.0), and a prolonged REM latency (345 minutes) with reduced REM sleep (12.1%). Interestingly, the report said I had 0 RERAs, but I've read on this board and on Reddit that that's basically impossible and their setup likely just didn't monitor for them. I slept over 8 hours and only remember waking up for short periods to adjust my position, so I basically slept just as well (heh) as I do at home. Link to my results is in the first paragraph.

Getting a CPAP machine

I then saw a pulmonologist who looked at my results and said they looked pretty normal and I think he was about to dismiss me; however, I then told him I'd read about UARS and mentioned my deviated septum, turbinate hypertrophy and chronic rhinitis, and the fact that my fiancée has recently told me a couple of times that it sounds like I'm choking during sleep. And I was in luck for a change, because he actually knew about UARS, so he concluded based on all that information that all of my various issues might actually stem from UARS, and said I might benefit from CPAP therapy.

He wrote a prescription and sent it to a local provider, who called me last Thursday to come in so they can set me up with all the equipment (insurance covers everything, including a new mask each year). I went on Friday and they gave me a choice between an AirSense 10 AutoSet or an F&P SleepStyle Auto. I told him that I don't have apnea (like the doctor specified in the prescription, probably due to insurance coverage), but UARS, so I wanted to get the AirSense 10 AutoSet, preferably the For Her, based on the recommendations I saw here. However, he didn't know about UARS at all and finally talked me into the SleepStyle, saying that it tracks more data and was easier to get used to because of the SenseAwake feature, and they could always help me with the settings remotely based on my results. 

I was skeptical, since they obviously can't help me if they don't know a thing about UARS, but figured I'd just find some other software and switch to OSCAR when it gets support and dial it in myself. I checked the board when I got home and it turns out GuyScharf is working on SleepStyle support in the new version of OSCAR, so I got access to the beta test forum and downloaded the latest alpha version.

First two nights with the F&P SleepStyle Auto

I didn't use the machine on Friday because I went to an open-air gig for the first time in about 18 months and managed to overdo it with the alcohol because I very rarely drink nowadays. On Saturday, I set the SleepStyle to min. pressure at 6 and max. pressure at 11 with EPR at 2 and SenseAwake at 6 and slept for about 8 hours. According to OSCAR, SenseAwake was triggered 4 times and I had 1 apnea and 1 large leak lasting 2 minutes, but the pressure never went above 6. All in all, I slept about the same as any other night, although, granted, I was brutally hungover the day before and definitely didn't get enough sleep.

I spent most of yesterday evening looking through others' threads and concluded that the pressure might have been too low to do anything for UARS, so I turned off SenseAwake and upped the pressures to 9 and 12 with EPR at 3 to see what that does. Bad idea. I woke up a bunch of times during the night and slept supine for a lot of the time (I normally sleep exclusively on my sides, almost on my stomach), and experienced pretty bad aerophagia, burping constantly, and a bunch of hypopneas. I finally got up after less than 7 hours feeling completely exhausted and bloated. It took me a while to get at least most of the air out of my stomach and intestine.

Request for advice

Firstly, based on what I've described and the results of my sleep study, would you say the diagnosis of UARS is reasonable? I'm worried I might have been too eager to jump on it because I've been struggling to find a solution for so long, and the pulmonologist might have been happy to find any excuse to prescribe CPAP therapy because he's in cahoots with the supplier or something.

If you think I might, in fact, have UARS, I'd really appreciate some advice on where to go from here. For starters, I'm considering asking to switch to an AirSense 10 AutoSet (for Her, if possible), as I've noticed that the SleepStyle doesn't show or flag flow limitations, which, as I understand it, is essential for UARS. Since the guy I spoke to didn't have a clue about UARS and why the AutoSet for Her might be better suited to treat it, I would appreciate if someone could give me some pointers on what I should tell him, i.e., which features make it better.

After that, or alternatively, if you think I could continue with the SleepStyle, I would be eternally grateful for some help getting my settings dialed in, as I'm having a hard time with all the technicalities. Unfortunately, the pulmonologist I saw probably won't be of much help, as his report basically just recommended APAP at 4 to 20, which even the supplier thought was a bit weird, so I'm reluctant to ask him for more advice.

Lastly, please note that I'm from Europe, so I might not have the same options available as in the US or elsewhere and our medicine is way behind in certain areas. Even getting a PSG was a pain in the posterior, as I think there's only one clinic that does them here, so I had to go to a neighbouring country to get it done. But I'd nevertheless highly appreciate any and all advice and I'll try to figure out my local options where possible.

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RE: Need advice on UARS and CPAP treatment
August 2 - 3rd night

Pressure: 7 to 11
EPR: 2
SenseAwake off

Tonight was about the same as last night as far as my quality of sleep and aerophagia go. I remember waking up several times to burp, and again had a lot of air to let out after waking up.

Interestingly, the machine didn't flag anything at all tonight; the app reports an AHI of 0.0, as does OSCAR, and the pressure never went above 7. However, there was definitely something going on with my breathing throughout the night, but I can't make sense of the graph. The longest continuous period of this raggedy breathing pattern was from about 2:16 to 3:30, after which it stabilized for a while until around 5 a.m.

I've attached screenshots of the entire night and zoomed in on the start and end of the disrupted pattern. Can anyone tell me what this is? I've tried looking at the Guide, but it doesn't look like any obvious pattern to me, though I'm extremely foggy right now, as you can imagine.

I've also decided to call the CPAP supplier today and ask them to switch me to an AutoSet 10, as I think all of this is useless if I can't look at (and have the machine correct for) flow limitations. 

Also, do you think I might be better off with a nasal mask given the aerophagia and the fact that I normally breathe only through my nose despite my septum and turbinate hypertrophy? On a conscious level, I don't really find the full face mask uncomfortable at all, and I actually find the pressure soothing after a couple of minutes of having it on, so there's a silver lining at least. I have noticed, though, that my mouth tends to puff up a bit (that's the chipmunk cheeks I've read about, right?) if I relax my jaw and tongue completely before I fall asleep. I've looked into mewing - is that something that can help fix this?

Thanks in advance for any and all advice.

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RE: Need advice on UARS and CPAP treatment
Minor update: I now have both the SleepStyle and the AirSense 10 Autoset for Her for a couple of days so I can test both out and keep the one I prefer. The technician said that my aerophagia might be due to the full face mask, but he said I should play with the CPAP devices and settings first before we try a nasal only. He also said the lack of any events last night might mean my UARS was already effectively treated at 6. Is that possible? From what I've seen, UARS usually requires much higher pressures. And that doesn't explain the irregular breathing. Anyway, I'll try the AirSense tonight at 5 to 10 in the special For Her mode and see what happens.
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RE: Need advice on UARS and CPAP treatment
Your detail 2 Aug 3:26-3:28 at the beginning is awake breathing. Most of the rest of your disturbances are arousals. With UARS you want higher EPR/PS, set min to 7 EPR=3
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RE: Need advice on UARS and CPAP treatment
(08-03-2021, 09:40 AM)Gideon Wrote: Your detail 2 Aug 3:26-3:28 at the beginning is awake breathing.  Most of the rest of your disturbances are arousals.  With UARS you want higher EPR/PS, set min to 7 EPR=3

Thank you for your input, Gideon! However, I was a bit afraid to set it to 7 again what with the aerophagia the previous night, so I set it at 5 to 10 with EPR at 3. Good news - the AutoSet for Her worked way better than the SleepStyle, and I didn't get much aerophagia last night, just some minor burps, I think.

And unlike the SleepStyle, which I found only flags FLs as events and didn't flag any for me, the AutoSet shows a lot of flow limitations. I've attached the screenshot for last night and a detail of one of the FL periods. 

The break in the middle is when I woke up with a full bladder and turned off the machine to go empty it. It was a bit of a restless night in general, partly due to the AutoSet being a bit louder than the SleepStyle, which bothered me slightly despite my ear plugs (which I always use because I have three cats and live next to a highway and have always been awakened by the slightest sound). The machine emits sort of a whining sound during inhalations and exhalations - is that normal? The loaner machine I got was used, but seems to be in good condition.

Since the pressure went all the way up to 9 during the FLs, I should probably up my minimum pressure, right? Should I try setting it at 7 to 10 or 11 and see what happens?

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RE: Need advice on UARS and CPAP treatment
August 4, night 5 - The Return of the Burps

So, last night, I set the AutoSet at 7 to 10 with EPR at 3. I got one OA and 2 hypopneas, and still a lot of flow limits and aerophagia-induced burping, especially towards the morning. What I find interesting is that the FLs seem to get worse as the pressure increases. Should I maybe try straight CPAP at 6 or 7 with EPR at 3?

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RE: Need advice on UARS and CPAP treatment
How are you doing now?
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RE: Need advice on UARS and CPAP treatment
Well, I unfortunately didn't get any advice here, so I gave up after a couple of months of absolutely no improvement with the CPAP. I also went to see a neurologist who specializes in sleep disorders, and she told me my sleep study results were totally normal and I shouldn't even be using a CPAP machine, lol. So yeah, back to square one, I guess. Meanwhile it's basically impossible to get ADHD drugs as an adult in my godforsaken country, so I can't explore that avenue either. I've recently noticed I'm clenching my jaw during sleep, so I'll try to get that sorted and see if it helps at all.
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RE: Need advice on UARS and CPAP treatment

No advice from me, since I'm also a newbie, but I just wanted to empathize a bit.
The sleep disorders neurologist is saying no to apnea/cpap... do they have any suggestions?  Unrestful sleep with no help from the medical community is a complete drag.
I have been told multiple times that it can take 6-12 months of optimized cpap treatment to feel improvement. ugh.

I also relate to the adult ADHD struggles. I wasn't diagnosed until my 40s and effective treatment seems to be elusive. I can get the meds here, thanks to an amazing mental health nurse practitioner, but they are not improving my ADHD symptoms. I did finally find one med that helps with the chronic fatigue, so that does let me function somewhat like a normal human, but the executive function disorder still limits me. 

Keep advocating for yourself.
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RE: Need advice on UARS and CPAP treatment
So sorry, also a newbie here so not much of advice. But I read that cpap is not good for uars but you need bipap and maybe asv. Then you probably should pay for yourself. The best study to discover uars is using a watchpat for a night. Might be possible to get this study done online. That will record the sleepdisordered breathing. i think you can order it here; [DME Link Removed] Search for "Watchpat Sleep Test
Dont give up yet.

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