Pokey49 - Therapy Thread

[Pokey49]

Super Pilot: You indicated you think my issues are outside pap therapy. Maybe yes. maybe no. I started out on this path with an AHI of 16. After therapy for 3 months my AHI is routinely low. Last night .87  My first week to 10 days of therapy I felt really good. Its been down hill since. My pulse OX indicates I have quite a bit of variability in my SPO2 over the night. I have a mitral valve issue, could that be causing that? I dont think so as Ive had that for 19 years.  A couple 3 weeks after starting PAP is when I was put on 50mg of Doxepin, an AD. It might be the culprit?? Problem is I cant just stop it to find out as doing so can cause really bad discontinuation sxs. 

 Bottom line is I dont know what the hell is going on. I just know most nights/mornings I am waking up feeling like ( and I am not trying to exaggerate) I am awakening from a near dearth experience. Its scary!!!!  

I am wondering now if I should even switch to BIPAP? Burt I guess if Medicare will cover it there's no additional downside in doing so is there? It would just provide a more comfortable therapy experience as I understand???

[ejbpesca]

Flow Rate graph waveforms and Flow Limitations may correlate.  

The Flow Rate graph when zoomed in to 1-3 minutes shows an up and down line.  The up is inhale and down exhale.  A smooth curve on top of the up is good inhaling then the line drops showing exhaling.  I rarely get the desired round tops.  Mine waves have ragged tops with peaks, sometimes flat, and if there is no up or down of the line for 10 seconds an apnea event is flagged.

My ragged, jagged waveforms on the Flow Rate graph correlate with the Flow Limitations.  The cause of my Flow Limitations is probably due to several factors.

Few flagged events (low AHI), round-topped waves, and under .10 Flow Limitations (little to no peaks on the FL graph) indicate therapy is effective.  Yours is going very well except for the "starved for air," feeling and not feeling rested as a benefit of PAP therapy. 

What could be ruining your sleep?  It is not the lack of effective PAP therapy.  Is it the irritation of PAP therapy?

[Pokey49]

EJB: yes I note that my numbers look good, but I cant figure whats causing all those spikes in my flow rate and why I feel so rotten most mornings. When I look at Super Pilots and others flow rates the peaks and valleys appear pretty much level/smooth. I got all those spikes up and down??? I'm frustrated, I need to go to the health club for some exercise and stop thinking about this stuff for a while, Catch you all later. thanks as always for your help.

[super7pilot]

Pokey. If I was given the opportunity to switch to BiLevel, I would in a heart beat. I recall a video from a pap specialist (might have been Lankylefty or uncle Nicko) It was said that true BiLevel should actually be the standard machine for apnea treatment and that a servo model is only needed for true Central Apnea's.

But your own statement of having treatment anxiety shows that it is an issue. And to be sure. it is not uncommon. Most folks don't even know about it. It falls under the broader heading of sleep hygiene.

I suffer it as well via my dry eye and lumber issues that cause burning in my feet and eye pain. So my sleep was disrupted (a lot) even though I had a low AHI and stellar compliance in using my machine. Those two conditions I have made a dramatic negative effect and are totally unrelated to Apnea but effect how I felt.

The vast majority of folks who have some sort of anxiety or condition that negatively effects treatment. Just take off the mask and throw the machine into the closet to gather dust. We the folks that are part of this forum are the one's at least trying to be open and proactive about our treatment. But we are the minority.

My stats chart in OSCAR show that my median night is over 7hrs since starting treatment in early October. Yet I never consistently hit 7 plus hours until mid December. So I have been getting some pretty long sleeps since to up my median to 7hrs. But even then, I wasn't feeling rested until I got my eyes feeling better in the last 6 weeks. And I still need some improvement in the eyes and back. But I'm working towards a solution or at least as much reduction in the negative effects as possible by using eye meds and physical therapy. So in my case a Bilevel would be great but how I felt would likely be unchanged because of those outside apnea issues.

[ejbpesca]

Please be sure to zoom in on 1-3 minute views of your Flow Rate across the graph to see if those spikes (no rounded waves) persist throughout a sleep session.  Mine are not correct, and I think for reasons other than Sleep Apnea.  I try to address these Flow Limitations with PAP therapy and fail.  I would like a BiLevel machine to see if it helps.

[jdougc]

Pokey,
You have seen one very important benefit of cpap therapy, as badly as this has been going for you.
This has helped minimized your heart Atrial fib episodes.
Hopefully this shows other forum members a real tangible immediate benefit.
I am sorry that you went through that though.

[SarcasticDave94]

Don't overthink this. You have the process to get the VAuto bilevel started. Just get it.

[Pokey49]

I’ve worked things out to get the BIPAP with a new DME. I’m picking it up today. The Rx was written for pressures of 6-25 PS 4. Does that sound reasonable as a start. And What about other settings? This is a whole new learning curve. 

I’ve been doing  7-15 EPR 2 on my APAP

[SarcasticDave94]

You are or were on pressure 7-20 with EPR 2 as of chart 5/21. When EPR 2 works, your real minimum on exhale is 5.

With the VAuto and those settings, the numbers from the script: 6 will be EPAP/exhale Min , the lowest it will be allowed to go. 25 is IPAP/inhale Max, the highest it can possibly go. Then PS 4 (pressure support) is similar to EPR but here it adds to EPAP to give an inhale that's forced to be a bit higher, and set by this static PS number. PS 4 may be a bit more than you need but it's not a terrible choice on paper.

The other settings like Ti Min and Max, Cycle, and Trigger, unless you really need those leave them at default. I'd say leave them be for the time being.

Focus on the pressure settings. Stay out of rabbit holes, AKA digging too deep into details that distract. Focus on basics and intermediate items.

On paper, the settings on the script might be fine, most suspect right now might be the PS 4, which 3 might be a bit easier to adjust to from where you are now.

[Pokey49]

A pressure of 25 about blows my head off and i can feel if really inflating my lungs and cause leaks.  I think it’s too much.  Can’t tell about the epap of 6 and PS combo. What do you suggest. Don’t think I can live with it as is. Certainly isnt the comfort I’m hoping for yet