UARS - No improvement in symptoms even after a month on CPAP

[seepap12345]

I was diagnosed with UARS, I had quite a few RERAs but no more than 4 apnea events / hour.
The night in the lab the day after my first sleep study they put the CPAP on me I slept quite well and I felt quite alright the next day although now I believe it was placebo effect as I wanted it to work so so much.
Since then I've used the machine for about 5 weeks and I feel like my fatigue is at the same level as before and my sleep quality feels like it is the same as it is or was without CPAP.
Can I still expect my symptoms to be reduced if I just keep using the machine for a couple more months? Fatigue and brain fog.

[Pugsy]

had quite a few RERAs

How many is "quite a few"?

I was diagnosed with UARS,

How did they come up with this diagnosis? Did you have a sleep study with a Pes device?

Since then I've used the machine for about 5 weeks and I feel like my fatigue is at the same level as before and my sleep quality feels like it is the same as it is or was without CPAP.

Exactly which machine, what settings?

How many hours of sleep are you getting?
Do you wake up often during the night?
Do you take any medications of any kind? If so, what?

Is fatigue your main complaint?

[seepap12345]

had quite a few RERAs

How many is "quite a few"?

I was diagnosed with UARS,

How did they come up with this diagnosis? Did you have a sleep study with a Pes device?

Since then I've used the machine for about 5 weeks and I feel like my fatigue is at the same level as before and my sleep quality feels like it is the same as it is or was without CPAP.

Exactly which machine, what settings?

How many hours of sleep are you getting?
Do you wake up often during the night?
Do you take any medications of any kind? If so, what?

Is fatigue your main complaint?

I'm not sure, I think it was about 30 RERAs an hour, I can check later perhaps. Why?
Yes, the doc inserted a Pes device down my nose.
Resmed Airsense 10 Autoset for Her with humidifier. Setting CPAP, 7 pressure.
8-9 hours. Same as before, everything is as if I was not even using the machine.
I do not wake up often at all, usually 0, sometimes up to 2 times.
No medication.
Fatigue and brain fog.

[Pugsy]

I'm not sure, I think it was about 30 RERAs an hour, I can check later perhaps. Why?

Because it's important to know how many RERAs for the UARS diagnosis.
Your "quite a few" might be different from my "quite a few".

You had a diagnostic sleep study using the Pes device...did they happen to also put you on cpap and try to figure out the best pressure you need so as to deal with the UARS effectively?

Resmed Airsense 10 Autoset for Her with humidifier. Setting CPAP, 7 pressure.

How did they come up with this pressure setting?

Have you checked your detailed reports from your machine to see if you are still having very many RERAs or not?
If not...you should look.
OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation

I suspect that you probably need more than 7 cm fixed cpap pressure to prevent the RERAs that accompany UARS.

[seepap12345]

I'm not sure, I think it was about 30 RERAs an hour, I can check later perhaps. Why?

Because it's important to know how many RERAs for the UARS diagnosis.
Your "quite a few" might be different from my "quite a few".

You had a diagnostic sleep study using the Pes device...did they happen to also put you on cpap and try to figure out the best pressure you need so as to deal with the UARS effectively?

Resmed Airsense 10 Autoset for Her with humidifier. Setting CPAP, 7 pressure.

How did they come up with this pressure setting?

Have you checked your detailed reports from your machine to see if you are still having very many RERAs or not?
If not...you should look.
OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation

I suspect that you probably need more than 7 cm fixed cpap pressure to prevent the RERAs that accompany UARS.

Yes, they put me on cpap on the night after my sleep study and determined my pressure setting that way.
Thank you, I'll check my machine for RERAs.

[Pugsy]

Well it sounds like the medical care team did everything they could to get you optimal treatment.
It is odd that you felt good initially and now have sort of back slid a bit and not doing as well.
Have you contacted your medical care team about the return of unwanted symptoms?

Makes me wonder what might have changed...if anything changed to cause the return of the unwanted symptoms.

[seepap12345]

I only felt good the day after my titration study, only until the evening. After that as I kept using my machine at home my symptoms were back to normal as before. The team has not replied to me when I told them my symptoms persisted even though I'm using the machine. I believe that I may have other issues that cause my symptoms but UARS may be one piece of the puzzle. That is why I asked whether I can expect improvements after long term use.

[Pugsy]

As you probably already know...UARS is extremely difficult to treat.
You don't have any of the usual data points to gauge results by that those of us using cpap for OSA have available.
Looking at the AHI won't help you because your AHI is already low.
I don't know if anything else in the reports that your machine will generate will offer anything or not.
Most of the time we don't see much but we might take a look at a typical night's detailed report from OSCAR and see if anything stands out screaming that it needs fixed.

If you hadn't had a sleep study using cpap AND the Pes device to figure out just how much pressure is needed to prevent the RERAs...then I would be thinking more on the lines that you just need more pressure. It's rare for the Pes device to be used just for diagnosis and even more rare for it to be used during the titration sleep study to try to figure out optimal pressures.

You aren't on any medications that we might blame some of your unwanted symptoms.
I assume no other physical or mental health issues are going on???

All I can offer is that maybe you need more pressure to keep any RERAs away. That seems to be the most common need when it comes to treating UARS.
It's too bad your medical team hasn't been there for you. Maybe you need to be a louder squeaky wheel????

It's really difficult to know what to offer since we really don't know what is going on in terms of the data the machine records....heck it's hard enough even when we see the data when it comes to UARS because most of the time the data isn't all that remarkable but people still feel like crap.

[seepap12345]

Thank you Pugsy.

Should I just keep upping my pressure by 1, like instead of 7 try 8, then next night 9, then 10, etc.? Until I feel alright? Would this be a good strategy?

I am willing to experiment.

How do other UARS sufferers find their correct treatment? Do their symptoms vanish right after finding the correct pressure?

I know of no other physical or mental issues however I am experimenting with other health improving methods in order to improve my health. Such as gut health optimization, etc.

I may try to message my medical team again.

You said that most of the time people with UARS have unremarkable data but still feel like crap. How do they usually get better?

[Pugsy]

Should I just keep upping my pressure by 1, like instead of 7 try 8, then next night 9, then 10, etc.? Until I feel alright? Would this be a good strategy?

That is what I would do except I would give the experiment more than just one night because one night at a new setting doesn't give the body time to adjust to the new setting. I don't like to make changes based on just one night unless I have an urgent need ....like a boatload of events being flagged which points to an urgent need for a big change.

UARS treatment means we have to rely on subjective feelings more than what we see on the detailed reports.
It's really hard to rely on just how we feel but that's about all we can do when UARS is present.
These machines weren't designed to report or respond to the very subtle differences in airway changes that point to UARS. The machine isn't designed to treat UARS.

You said that most of the time people with UARS have unremarkable data but still feel like crap. How do they usually get better?

Again they have to rely on subjective feelings and they just keep increasing the pressure until they notice an improvement.
Most of the people who end up doing this haven't had the sleep study done with the Pes device for pressure optimization.
You did....and they came up with 7 cm with the Pes device being used so I would think they at least got close and you reported at least one night where you noticed improvement.
Maybe you had a one off really good night and the one night in the sleep lab with the Pes and CPAP was some sort of an outlier good night. Lets face it...sleeping in a lab setting isn't really indicative of what we do at home. I know that when I had the in lab titration for my OSA I didn't sleep well just from the foreign environment.

It's your choice how quickly you want to keep upping the pressures but I think at least 2 or 3 nights at a change is needed....preferably longer experiment but I do understand that we humans don't have a lot of patience.

You probably need to learn how to scroll through your breathing/flow rate graphs to look for evidence of arousal breathing.
http://freecpapadvice.com/sleepyhead-free-software
Watch the videos here...while it talks mainly about central flagging or false positives it gives examples of asleep breathing as well as arousal related breathing. Just because you don't remember an arousal doesn't mean it didn't happen.

I have some issues with my sleep due to pain causing arousals. I don't always remember the arousal but when I scroll through the graph of the flow rate/breathing I can spot the times where it looks like I had some sort of arousal from sleep.
Doesn't always have to have some sort of apnea event at the same time.
Here's a good example I like to show people so they can get an idea what real asleep breathing looks like and what arousal breathing looks like.
I circled the asleep breathing in red. You can see a marked difference in the breaths.

Here's an example of asleep breathing...note how regular and even it is.


and here is the one where I circled the asleep time in red....all that stuff after the red circle is arousal breathing.


Here is a more zoomed out image of the same segment.

[seepap12345]

Thanks a lot, it is very interesting to zoom in on the Flow Rate chart like this. I had a look at a section, I checked one hour of flow rate and it is mostly rhytmic but there are 11 events in the one hour I checked. 11 arrythmias of breathing. I guess those could result in RERAs or at least abnormal breathing, they look like higher higs and lower lowas for like 10-20 seconds each. Is it supposed to be nice and rhytmic for the whole hour ( or night) like the image you included about regular asleep breathing?
I checked in another hour, that one had six such irregular flow rate events. Another one had 10. Another one 7. Then 6. Anyway in average more than 5 such abnormal events every hour. I assume they are the UARS events as my AHI that night was 0.8 only.

I'm looking at a different night, similar results, some flow rate events are not quick highs and lows but elongated flat bits without them being apneas. Interesting.

Should I just keep upping my pressure by 1, like instead of 7 try 8, then next night 9, then 10, etc.? Until I feel alright? Would this be a good strategy?

That is what I would do except I would give the experiment more than just one night because one night at a new setting doesn't give the body time to adjust to the new setting. I don't like to make changes based on just one night unless I have an urgent need ....like a boatload of events being flagged which points to an urgent need for a big change.

UARS treatment means we have to rely on subjective feelings more than what we see on the detailed reports.
It's really hard to rely on just how we feel but that's about all we can do when UARS is present.
These machines weren't designed to report or respond to the very subtle differences in airway changes that point to UARS. The machine isn't designed to treat UARS.

You said that most of the time people with UARS have unremarkable data but still feel like crap. How do they usually get better?

Again they have to rely on subjective feelings and they just keep increasing the pressure until they notice an improvement.
Most of the people who end up doing this haven't had the sleep study done with the Pes device for pressure optimization.
You did....and they came up with 7 cm with the Pes device being used so I would think they at least got close and you reported at least one night where you noticed improvement.
Maybe you had a one off really good night and the one night in the sleep lab with the Pes and CPAP was some sort of an outlier good night. Lets face it...sleeping in a lab setting isn't really indicative of what we do at home. I know that when I had the in lab titration for my OSA I didn't sleep well just from the foreign environment.

It's your choice how quickly you want to keep upping the pressures but I think at least 2 or 3 nights at a change is needed....preferably longer experiment but I do understand that we humans don't have a lot of patience.

You probably need to learn how to scroll through your breathing/flow rate graphs to look for evidence of arousal breathing.
http://freecpapadvice.com/sleepyhead-free-software
Watch the videos here...while it talks mainly about central flagging or false positives it gives examples of asleep breathing as well as arousal related breathing. Just because you don't remember an arousal doesn't mean it didn't happen.

I have some issues with my sleep due to pain causing arousals. I don't always remember the arousal but when I scroll through the graph of the flow rate/breathing I can spot the times where it looks like I had some sort of arousal from sleep.
Doesn't always have to have some sort of apnea event at the same time.
Here's a good example I like to show people so they can get an idea what real asleep breathing looks like and what arousal breathing looks like.
I circled the asleep breathing in red. You can see a marked difference in the breaths.

Here's an example of asleep breathing...note how regular and even it is.


and here is the one where I circled the asleep time in red....all that stuff after the red circle is arousal breathing.


Here is a more zoomed out image of the same segment.

[seepap12345]

I was told by my sleep doc that my pressure setting is supposed to be 7. He did not tell me anything about EPR. Am I supposed to use EPR at all?

[Miss Emerita]

I was told by my sleep doc that my pressure setting is supposed to be 7. He did not tell me anything about EPR. Am I supposed to use EPR at all?

The use of EPR is standard in treating UARS. I’d suggest you start using it. What level? It’d be helpful to see an Oscar chart. Could you post one?