Rant/Question in regards to changing CPAP pressure range

[cubism_dream]

Hi Everyone,

It's been a few years since I've posted anything on this forum. My CPAP therapy most likely has been working according to my AHI and other data. However, it's difficult to tell because I've just been feeling even more lousy (severe cognitive/short-term memory issues, weakness, etc) on a daily basis and it may be due to other health issues that share similar symptoms, with chronic fatigue being a main issue.

Before I continue with my question, I'll provide a short history regarding my OSA and CPAP therapy. I was diagnosed a few years ago as having moderate obstructive sleep apnea. I was titrated later with a CPAP pressure of 8-12. That range has worked for me for quite a while now. Unfortunately, my health has worsened this year and I've been feeling more tired than usual and have been experiencing excessive daytime sleepiness. Because of this, I had another sleep study done, along with a MSLT (Multiple Sleep Latency Test) to see if I have developed any other sleep disorders. The sleep clinic decided that I needed to increase my pressure range to 12-15, If I remember correctly. The MSLT test said that I easily fall asleep, but not long enough to have narcolepsy.

That new pressure range hasn't been working for me. I've been waking up bloated (aerophagia). It's not like I immediately changed the pressure after one night of discomfort. I gave it a few more days to a full week before I changed the minimum pressure. I've been sleeping relatively better since the change. However, because of my feeling lousy, I adjusted the pressure to dial in a more comfortable range. This was done before my recent sleep clinic follow-up appointment. Since I had my machine on hand, they wanted to adjust my pressure and they discovered that it has already been changed, but not directly question me. They seemed confused. I just get the impression that OSA patients aren't supposed to adjust their own CPAP machines. I know how to change my own pressure range. I make incremental changes and I give it at least a week before I decide whether or not the settings are suitable. I try to stay within a reasonable pressure range when I make adjustments. Am I required to call and check my sleep disorder doctor every time I have a question about the pressure?

That was quite lengthy. So here is my question: how do you decide what to adjust when you change the pressure range, and what exactly are you adjusting? When you realize a new pressure range isn't working for you, do you await your doctor's approval, do you not tell them, or do you change it anyway? What do they say when you change it? Okay, that was more than one question.

As of this moment, that new pressure range isn't working for me. I feel worse. I have fragmented sleep. The pressure is too high and I wake up with a dry mouth and throat. I'm probably getting centrals from the excessively high pressure (please correct me if I'm wrong, I don't know about the intricate details of sleep apnea and CPAP). Right now, I'm debating whether or not to change the minimum pressure. I just feel a bit bothered about how sleep disorder doctors act like I'm incapable of taking matters of my health into my own hands.

Lastly, if it helps, I'm using a ResMed S9 AutoSet with Humidity Level at 6.0. Hooked up to that are nasal pillows connected by a ClimateLine.

[Julie]

Hi - If you lose therapy air from your mouth while asleep (could be a new development) and ramp up the pressure to accommodate a higher AHI or feeling worse, you'll lose even more air and feel even worse. It may be time for you to try a full face mask that would allow you to mouth breathe when sleeping and alleviate the dry mouth, a classic sign of mouth breathing.

And we all tweak our pressures routinely, not letting the DME"s or old fashioned doctors to intimidate us re our own treatment... don't worry about that!

[SleepyToo2]

I don't have an auto, and my pressure is lower than yours. However, my recent experience has been that using a chin strap and sleeping on my side is giving me much better sleep. I monitor my treatment with Sleepyhead. Last visit to the doc, I showed him my printouts without the pressure info. He said keep on doing whatever it is you are doing. So, I took that as an indication that adjusting my pressure gradually would be OK. I also just keep the humidity on bypass. Make sure the filters are clean. Take an active interest in the details of your sleep and how to improve it, and find a new doc to help monitor your apnea and its treatment.

[Pugsy]

Yes, lots of us change our pressures with seeing or telling the doctor but we do it based on what we see using the software available.
If you are having centrals...it will show up on the S9 reports.
Get the software and use it.
SleepyHead software works well with it. Information on getting and using it is in my signature line along with a little tutorial to help you understand what you are seeing.
The software will also show you leak data...it will show you if you are mouth breathing enough to seriously impact therapy.
Dry mouth can be from mouth breathing or from other causes and besides it take very little mouth breathing to dry out the mouth....and you need to know if leaks are a problem or not before you go changing masks unless you just want to change masks.

Full face masks don't eliminate dry mouth from mouth breathing...it just eliminates loss of therapy pressure out the mouth.
We have LOTS of full face mask users here that complain of dry mouth.

[palerider]

I'm probably getting centrals from the excessively high pressure (please correct me if I'm wrong, I don't know about the intricate details of sleep apnea and CPAP). .

I didn't notice anywhere that you mentioned that you were monitoring your data with sleepyhead (or resscan if you're a bit masochistic) if you aren't pulling the data, then you're just guessing blindly.

install sleepyhead, pull the data off the machine, and you'll know if you're having centrals or not.

[cubism_dream]

Thanks for all the responses. I forgot to mention that I use a chin strap and sometimes I tape my mouth. Mouth taping has helped with preventing leaks, but sometimes I feel suffocated and take it off in the middle of the night. Lately, I've only been using the chin strap without tape, but last night I used tape and woke up without dry mouth. Also, I decided to decrease the minimum pressure from 13 to 11 and noticed that I felt a bit better this morning. I'm not sure if my feeling better was a result of the pressure change, the tape, or both.

I'm happy with the Swift FX pillows and would rather not have to use a FFM. I actually tried it out a few times and wasn't able to wear it comfortably without leakage from the top of the mask. Honestly, I've been tending to my other health issues and haven't been paying enough attention to my CPAP therapy. Despite that, I still use my machine every night and according to the doctor's CPAP data printout, my compliance is great with normal leak levels. They basically said that I could rule out OSA as a cause to my other health concerns. I'm actually not sure why the doctors decided to change my pressure range. When I had my most recent sleep study, I didn't sleep well and the technician actually had to change masks in the middle of the night due to leaks. I have a feeling that these issues may have contributed to the pressure change that may not even be necessary. My weight has not even increased.

I've used Sleepyhead in the past and I think I'll start getting back into analyzing my data. Palerider, you're right, I'm just guessing blindly with making pressure changes. Pugsy, I'll take a look at the tutorial that you mentioned, thanks. Thanks for all the support everyone. I'll try to be more active on this forum. I just haven't been feeling great for so very long and I have very little social support regarding my health and well-being.

-Cubism

[Greg Riddle]

Yes, lots of us change our pressures with seeing or telling the doctor but we do it based on what we see using the software available.
If you are having centrals...it will show up on the S9 reports.
Get the software and use it.
SleepyHead software works well with it. Information on getting and using it is in my signature line along with a little tutorial to help you understand what you are seeing.
The software will also show you leak data...it will show you if you are mouth breathing enough to seriously impact therapy.
Dry mouth can be from mouth breathing or from other causes and besides it take very little mouth breathing to dry out the mouth....and you need to know if leaks are a problem or not before you go changing masks unless you just want to change masks.

Full face masks don't eliminate dry mouth from mouth breathing...it just eliminates loss of therapy pressure out the mouth.
We have LOTS of full face mask users here that complain of dry mouth.

It doesn't eliminate dry mouth but the dry mouth from loss of pressure through the mouth it's dry to an extreme

[Pugsy]

It doesn't eliminate dry mouth but the dry mouth from loss of pressure through the mouth it's dry to an extreme

Tis true, but from what I hear from some people they think their dry mouth using a full face mask is extreme.
I tell people that added humidity might help..might not but sure won't hurt to try.
My point is that while it can help a lot of people it doesn't always help people to the extent they want or desire or expect. I just give them the ugly facts of life. Full face masks can't fix dry mouth for some people. I wish it did. I hate for anyone to have any discomfort with this cpap therapy.