PullMeUnder therapy thread

[PullMeUnder]

Hello,
 
I’m 56, male, 160 pounds, and 5’ 9”.  I live in Wisconsin at an elevation of 1,100 feet.
 
My one-and-only sleep study was in the fall of 2019 (when I weighed ~145, so I’ve gained 15 pounds since then).  I was diagnosed with RERA and given a Resmed S9 set to APAP.  My RDI was 10 and my AHI was under 5.  They didn’t tell me exactly what my AHI was, because they did not titrate me.  I use a humidifier and set it to 4.5.  I use the Resmed Airfit P30i mask with a 6’ standard size hose coupled to a 2’ standard size hose.  8’ total.  I have the ramp feature turned off.
 
Originally, they set my pressure range at 4 to 10 and gave me a full-face mask.  After a few months of struggle, a sleep technician changed my pressure to 4 to 6.  I asked for (and received) a sample P30i.  Given the new lower pressure and a mask that I liked better, I was able to get used to it.  I now use the S9 every night and my life has improved dramatically.
 
I recently had my first appointment with a nurse practitioner in sleep medicine since my sleep study in 2019.  I was thoroughly unimpressed.  She looked at some of the data on my SD Card.  I asked if my pressure is set appropriately.  She said I need another sleep study in order to see if I need a pressure change, but it looked to her that I should be bumped up to 7 or 8.  She refused to change the pressure on my machine and she refused to write a new prescription.  So I have now changed my pressure to 4 to 7 myself.  So far, I have tolerated the new pressure with zero issues.  I haven’t really noticed any difference in how well rested I am.
 
I am hesitating to have another sleep study for a couple reasons.  One is it would cost me $4,700.  My deductible is $5,700.  I suppose I could afford it, but I really can’t see how I’ll get $4,700 in value out of it.  Two, they didn’t titrate me during my first sleep study, because my AHI was under 5.  The nurse said that titration is how they determine the correct pressure.  I asked the nurse if they would titrate me if I got another study.  She said, “If your AHI is more than 5, then they will.”  I said, “So if my AHI is under 5, then they won’t titrate me, despite that being the whole reason for undergoing the study!?”.  She didn’t really have an answer for that.
 
The nurse mentioned some concern about my Central Apnea Index (I think that’s what she called it - CAI).  She said CA’s are more dangerous that OA’s and that CA’s can sometimes be induced by the CPAP machine.
 
Settings:
·         Mode               Autoset
·         Max pressure   7.0
·         Min pressure   4.0
·         Max ramp        20 min
·         Start pressure  4.0
·         EPR                  Full time
·         EPR level         3
·         Mask               Pillows
·         Tube                Standard
 
Options:
·         Climate Control           Manual
·         Sleep quality               Usage
·         Smart Start                  On
·         Access                         Full
 
I’m going to try and post two screen shots.  The one from Tuesday February 6, 2024 has an AHI of 5.44.  The one from Sunday February 4, 2024 has an AHI of 3.74.  On Sunday, I tried using a Knightsbridge chin strap.  Let me know if I should post more screen shots.  I didn’t understand all of the directions regarding what should be posted.
 
I found the Knightsbridge chin strap kind of bulky in the temple and cheek area and it felt like it interfered with the fit of my P30i.  I’m not sure if it prevented any leaks or not.  The leak rate chart does seem to look better on Sunday than Tuesday, but I am not an expert.  If I was convinced the chin strap would help me, I could probably get used to it.
 
Questions:
1. Do you think I need another sleep study?
2. Do you think I should continue using APAP mode?
3. What do you think my pressure should be?
4. What, if anything, can I do about my Central Apneas?
5. Do you think I should use the Knightsbridge chin strap?
6. Any other thoughts or suggestions?


Thanks.

[Dormeo]

It looks like you have EPR set at 3 full-time, but I'm not seeing any EPR reflected in your pressure graph. I'm not sure what the story is there.

Your pressure goes up and down in response to your flow limitations. Some of your CAs come in clusters, which may reflect periods of unstable breathing. And some of those periods come after your pressure goes up.

Most adults find a pressure of 4 uncomfortably low. I suggest that you change your minimum to 6. And I also suggest that you change your EPR to 1. (EPR can sometimes exacerbate CAs.) Finally, I would suggest that you change your maximum to 6, so that you have a steady pressure of 6 throughout the night.

That's a lot of changes to try at the same time, and usually that's not a good idea. But I think we'll learn a lot from how you respond to these changes, and that may help us see where you need to tweak your settings further.

Meanwhile, as for spending $4K on a useless study -- no way!

[PullMeUnder]

I changed the following settings:

• Minimum pressure from 4 to 6
  
• Maximum pressure from 7 to 6
  
• EPR from 3 to 1
  
• Start pressure from 4 to 6.  I'm not sure if I was supposed to change this setting, but it seemed logical to change it.
  

I noticed more pressure on exhalation.  It was slightly less comfortable, but not a big deal.  I'll try to post a screen shot from last night.

[Dormeo]

No big changes by the numbers, but I'd say stick with these settings for about a week and let's see how it goes. I'm going to guess the mild discomfort exhaling will ease as you get used to EPR of 1.

I notice you had more leaks; any idea why?

[PullMeUnder]

My leaks seem to vary quite a bit from day to day.  I assume that they're mouth leaks.  I don't think they're mask leaks, because I have never had my mask fall off my head while I was sleeping.  I've also never removed my mask while I was sleeping.  I never even wake up with the mask askew.  I use the Airfit P30i, which of course doesn't cover my mouth.  I have not been able to tolerate any full face mask.

I just got a Knightsbridge chin strap.  I tried it once so far.  It seemed like that did reduce my leaks pretty dramatically.  I posted a screen shot of the night I used it in my first post.  I felt like the Knightsbridge was a bit bulky in the temple and cheek area.  It prevented the P30i from resting nicely on my face.  But I could probably get used to the Knightsbridge if I stuck with it.

I've also considered taping my mouth shut.  But I am not sure if that's a good idea or not.

Thoughts on the Knightsbridge and/or mouth taping?

[PullMeUnder]

I've been using the new settings for about a week now.  Here are screen shots from the last three nights.  I have been tolerating the new lower EPR setting without too much trouble.  My AHI does seem a bit lower with the new settings.  I still have some leaks, which I suspect are mouth leaks.  I am probably going to try and commit to using my Knightsbridge chin strap for a while (despite it being somewhat uncomfortable) to see if that helps my mouth leaks.  Any other suggestions?  Thanks!

[Dormeo]

I tape my mouth with no problems. If you want to give it a try, you might start by getting a box of Somnifix strips. The adhesive is pretty strong but the strips come off easily.

There are two reasons people sometimes worry about taping. One is that if they suddenly vomit in the night, they'll inhale the vomitus. I've never suddenly vomited in the night, so I don't give this a thought. The other reason is that if the electricity goes out, they may quietly smother. That doesn't sound very realistic to me either, but I put a circuit alarm on the circuit my machine is plugged into, just to be on the safe side. (I use the alarm made by Reliance.)

You continue to have CAs and flow limitations, but in your place I'd continue with your present settings, at least for now.

With time, the CAs may diminish on their own; if they do, you might try introducing more EPR to help with the FLs (though the FLs may actually not be hurting your sleep -- sometimes they do and sometimes they don't). Looking way down the road, if you reach the point where you want to try EPR of 3, you'll need to change your minimum to 7, since the machine can't go lower than 4.

Oh, and the comment about how CAs are more dangerous than OAs? Pure BS. But it is true that they can be induced by the machine. If the machine is helping you sleep better and your CAI is as low as it is, you shouldn't worry about it.

[PullMeUnder]

@Dormeo, thank you for taking the time to help me.  I appreciate it.

One more question, how often do you think I should go see the sleep medicine nurse practitioner at my local clinic?  She wants me to have an appointment once per year.  I have to pay for my supplies and my machine with my own money.  Hence I do not have any insurance/compliance reasons to see her on any sort of schedule.

I feel like I didn't get much from the appointment I had with her recently.  I don't know how much that appointment is going to cost me yet, but if I had to guess, I'd guess $200.

She had never heard of the Bleep Eclipse.  She was unaware that CPAP info is a popular topic on YouTube.  She was unaware that there is a thriving community of people discussing their CPAP issues on various forums.  OH!  And she had never heard of OSCAR!!

I just can't see why I should go back there.

[Dormeo]

Most of us don’t feel any need for regular appointments. I would spend the money on something else if I were you!