UARS/OSA newbie

[slowriter]

Background and Diagnosis

Male, 50, newbie.

Recently diagnosed with UARS after some time of increasing fatigue that I or doctors couldn't otherwise explain.

After seeing my sleep study results, the sleep specialist described my case as "classic UARS," with 18 RERAs/hour during the study, and "mild sleep apnea."

So she prescribed me an auto CPAP.

Initial Setup

The DME really only gave me the option of a Resmed Airsense 10 Auto (which pleasantly surprised me).

After reading here and elsewhere as the order was in process, I asked them for the "for her" model instead, thinking it ought to be a good option to have given my condition. They were happy to change it.

My doctor's office initially set the machine as follows:

• auto "for her" mode
• EPR = 3
• Min Pressure = 5
• Max Pressure = 15
• auto ramp

Experience

In the week that has followed, the auto-adjusted pressure has generally varied between 5 and 7, with times as high as almost 10 (though I think has actually been when I've been awake, so misleading).

I used the ramp feature for the first few nights, and then turned it off, which I prefer.

During the entire time I've been using the machine, it has reported 0 RERAs (I confirmed with the Rescan software, since OSCAR won't report the data if not there).

My initial struggle was really only waking up in the middle of the night, usually at least twice, and in some cases, struggling to get back to sleep; so, getting sufficient quantity of sleep.

But with some adjustments (notably, no liquids after 8 PM and taking 5-htp and GABA before bed), I seem to be making progress. As you'll see below, though, I woke up once last night for maybe 30 minutes.

Still, I'm feeling reasonably good; on a good day, much better than I've felt in years.

Data



Questions

So ... two questions:

1. What should I make of the fairly low pressure values, and the complete absence of reported RERA events? I was assuming I'd see at least a few reported.
2. Am I right to conclude the pressure range is more-or-less fine, but that I might look to narrow it; say from 5-10 or 6-10?

More generally, anything else I might be missing?

[Julie]

You'd rarely want to narrow the pressure range... only raise the min. by 1-2 cms (it is quote low... MD's tend to be conservative) and even raise the max. a bit, though I suppose leaving it at 15 for now wouldn't matter a lot.

[Pugsy]

You are going to have to rely more on how you feel than any numbers you are seeing for evaluation of how well you are doing.
These machines aren't really designed for UARS reporting of anything. They are mainly for OSA reporting trends and patterns.

The RERA flags....that's a maybe...a good educated maybe but still a maybe.
What they are reporting, when they report RERA, is that the breathing looks like the breathing of people who have a RERA that is well known to happen in a sleep lab situation where sleep status and breathing can be evaluated at the same time.
These machines can't measure sleep status so they don't know for sure if a person was awake when something gets flagged.
They just call them like they see them and their vision is limited.
What gets called a RERA in a sleep lab with the tech monitoring sleep status doesn't necessarily equal what the machine would call RERA.
The machine is saying that your breathing looks like RERA breathing might look but since it can't say for sure you were asleep...it's not a 100% for sure RERA.

The absence of any RERAs.....doesn't really that any UARS related arousals didn't happen. Just means that the breathing doesn't appear to look like it. We are never really told exactly what the breathing has to look like either.

It is a good thing though to not have any RERAs flagged. When we see a lot of RERAs flagged it usually at least means crappy sleep with lots of arousals. People without UARS can get them too.

Your minimum pressure is your most critical setting....it needs to be high enough to hold the airway open and prevent airway collapses.

The maximum pressure doesn't really matter so much if you never go near it anyway. If the max is never reached then it becomes a moot point anyway. Doesn't change the response time really if the max is never reached anyway.

[slowriter]

Your minimum pressure is your most critical setting....it needs to be high enough to hold the airway open and prevent airway collapses.

And the only potential downside to raising the minimum pressure (say to 6) is comfort? As in, might as well try it and see?

[Julie]

There might only be a (rare) downside if you raised it a whole lot more, possibly generating some 'centrals', but I think if you go up slowly, 1-2 at a time and don't e.g. go over 10 (and why would you really anyhow) it's unlikely to be a problem at all.

[slowriter]

Right; makes sense.

Thanks to both of you.

[Pugsy]

Potential downside with more minimum is indeed comfort..... mainly in the air in the belly department.
A few people will experience central apneas pop up with pressure increases but that is rare...and can happen with as little as 4 cm pressure anyway.

We have a few members here with the UARS diagnosis and the minimum pressure always seems to be the most important and in fact often people have to use a little more to feel better than what gives good "numbers".
A minimum of so and so might give good numbers when someone has plain jane OSA but that doesn't really equal what someone with UARS might need.

I usually tell people to not put much stock in what the machine is wanting to do or says it is doing when all someone has is UARS.
The machine just can't really tell us much that is all that helpful for UARS therapy evaluation.
There is some thought that the Flow Limitation graph might be of benefit...and while yours doesn't look horribly horrible..it is a bit active.
More minimum pressure is what we usually suggest for Flow Limitation reduction as long as the person isn't having a lot of nasal congestion.
Nasal congestion can make the FL graph look ugly but the problem is in the nose and not the part of the airway that UARS affects.
More pressure won't really help nasal congestion.

You really have to go mainly on subjective feelings and I understand how hard that is because so much stuff happening can affect our sleep quality that can cloud the results. We like to have numbers to validate how we feel but unfortunately numbers can't always tell us the whole story.

[slowriter]

You really have to go mainly on subjective feelings and I understand how hard that is because so much stuff happening can affect our sleep quality that can cloud the results. We like to have numbers to validate how we feel but unfortunately numbers can't always tell us the whole story.

But even narrowing down the variables like this goes a long way, particularly given how complex this can all seem for a newbie.

In essence, I can focus on how I feel in relation to the minimum pressure and the flow limitation activity.

[dogsarelife]

Hi - welcome. As a fellow UARS sufferer, does your sleep specialist know anything about pressure esophageal manometry? if you can find a lab that does it,it will help. The esophageal manometry, it's a thin length of water filled tube that goes through your nose and then down your throat with sensors on it and wearing it in a sleep lab helps determine what pressure you need on your xpap. I don't know if I'm a rare case of UARS or not, but I was also set up for 5-20 cm H2O on an apap and my apap never got up to the pressure it needed to on its own - It would mostly stay at 5 cm H2O all night at first. The reality was that I ended up needing 16-19 cm H2O to feel better. My machine was never going to give me that amount of pressure on its own because the algorithm wasn't set up to account for the upper airway resistance.

This is a story of someone your age who also struggled with getting the right pressure for UARS so you see how dramatic a difference getting the right pressure can make for UARS - https://www.islandpacket.com/news/busin ... 38163.html

You're probably going to have to keep a journal of how you feel at certain pressures. In an ideal world, you wouldn't have to futz with the pressure too much. I'm sure there are people with UARS out there who feel fine with pressure in the single digits. So, not to get too far ahead of things, but if you still feel like you're not making progress after a while than hopefully your sleep specialist knows of a place that can give you a study with pressure esophageal manometry to get your pressure better set for your needs through all the stages of sleep. Or you can figure things out by reading and studying up on things from cpaptalk. There's a lot of good info from other people who have had UARS if you just search around.

[slowriter]

Very interesting @dogsarelife!

Not sure if she's aware of it (I'd guess yes), but I'll keep it in mind.

So, if I may probe a bit, what am I looking for in terms of "feeling better"? How did you know the the apap setup you had wasn't working, and how has the (much higher) pressure you're now under translated?

[dogsarelife]

Very interesting @dogsarelife!

Not sure if she's aware of it (I'd guess yes), but I'll keep it in mind.

So, if I may probe a bit, what am I looking for in terms of "feeling better"? How did you know the the apap setup you had wasn't working, and how has the (much higher) pressure you're now under translated?

So, some background - I don't know what the symptoms are that you're experiencing that made you seek out a sleep specialist. From the site of ENT Dr. Steven Park - this is a good interview for instance on UARS https://doctorstevenpark.com/expert-int ... leep-apnea

he writes that it's rare to get a UARS diagnosis outright, and what is more common is for people to seek help for years for the somatic symptoms that are a result of UARS - GERD, IBS, anxiety, depression, fatigue, and that many of the patients end up turning to alternative medicine because they're so frustrated by getting the run-around by the medical establishment and no one tying their issues together.

So for me in particular, I knew that my apap setup wasn't right because I was still having the same symptoms that led me to suspect sleep disordered breathing in the first place. I had seen an initial improvement in GERD, fatigue, anxiety, etc. with xpap followed by things starting to get worse again.

So in my opinion and experience, UARS type symptoms that improved with xpap should only get better or become more stable, not get worse. Keeping a sleep journal of pressures, mask changes, and of course looking at things in sleepyhead/OSCAR will help you understand your therapy and gradually understand the configurations (pressure, mask, pillow, jaw strap, exhale pressure relief, etc) that help you feel better overall and/or help any symptoms of UARS you might have.

[slowriter]

Based on above discussion, I decided to raise the minimum pressure by 1 each night, until either a) I saw reductions in flow limitation and (ideally) reduced daytime fatigue, or b) experienced negative side-effects.

Below is results at 7 and 8 respectively.





As you can see, as expected, flow limitation decreased, without any negative side effects (discomfort, or increased CAS).

Problem:

I keep waking up, every single night, somewhere around 3 or 4, for somewhere around 30-60 minutes. Pressure change has no effect positive or negative on this.

While this is an improvement over my first few nights, because I'm not sleeping through the night (e.g. not getting enough sleep), it's hard to assess how the pressure change is impacting the quality of sleep and how I feel, because I mostly don't feel great.

If I zoom in around the time I wake up (I am unsure if it is just preceding it, or after), though, I see this:



Suggestions?

[Pugsy]

I know you don't want to hear it but those wake ups might not even be related to any airway issues.
The zoomed in breathing air flow rate you just posted is most definitely awake breathing though. Arousal breathing.
Now what caused the arousal....million dollar question.

The wake ups around 3 or 4 AM...might even be the normal wake ups that people get after a REM cycle is complete...those wee hours of the morning is when we have more REM so chances are greater that there can be a post REM wake up.
Post REM completion wake ups are normal. We all can have them but unfortunately some people don't just roll over and go back to sleep.

You have got some insomnia issues going on and unfortunately the list of culprits is miles long and airway issues are just one item on that list.
The machine can't fix insomnia issues that aren't related to the airway no matter how much we want or expect it to.

[slowriter]

I know you don't want to hear it but those wake ups might not even be related to any airway issues.

Right. Not that I don't want to hear that; more that I want to figure out which it is, so I can adjust accordingly.

If non-airway related insomnia, then it would it seem to make sense to keep things stable for awhile with the machine settings; right?

[Pugsy]

Yes...keep things stable for a while and see if things maybe settle in better.
UARS people tend to be on the hyper sensitive side of things (from what I have read) meaning sometimes the least little thing ends up bugging them and causing wake ups and having insomnia issues.
Of course I had my own insomnia issues last night myself...and I don't have UARS.
Sometimes we just get a visit from the insomnia monster for no good reason.
This is where you have to be extra patient about things and give your body a chance to adjust to anything new like a new pressure.
Don't make changes too big or too fast. Give your body/brain time to adapt to the new norm.