ac123 Treatment Thoughts/Help

[G. Szabo]

Anyway, do you or anyone else have any thoughts on the relationship between leaks and flow limit?

My two cents:
Case 1) The instrument increases the pressure when flow limits are detected. At this higher pressure, leaks could also increase when your mask is not set properly. 
Case 2) Small leaks should not prevent the instrument from adjusting the treatment at combat flow limits. However, large leaks can compromise the instrument's capability, and as a result, one might experience increasing flow limits. 

[Deborah K.]

Your leaks are not high enough to be detrimental to your therapy. On the chart they look high, but if you look at the graph on the left they only register as 0.01. They are not a problem.

[ac123]

Quick update. I stayed at the lowest possible setting (4, no EPR since it can't work that low) for 18 days, the Dr. wanted to know what would happen, she was concerned that some of the obstructive events were actually central and I was having really intense aerophagia. Turning it down helped me get used to it and the RDI wasn't so bad (1.94 average across the 18 days) but no improvement to sleepiness.  We then turned it up to 5-7 EPR 1.  and have been there for 18 days.  Average RDI is 1.88, slightly less but not a huge amount, varies quite a bit by day but always under 5. I'm struggling to get OSCAR to give me flow limit statistics across specific days - the only one that I can see is under "changes to device settings" which show them all as zero, which is wrong for a mean or 95% (maybe it is showing median which could be right). Anyway, I think that flow limits have gone down with the change, but I am noticing a pretty clear pattern.

Two or three times per night, at roughly the same times, I start to get hypopneas, OAs, and RERAs, and flow limits and the pressure goes up to the top and stays a while. This corresponds to times of the night with lots of variation in pulse. Although I do wake up frequently it's often for only a minute or two and there's no way it's this whole time. Then, pulse goes back down and I instead get either nothing or centrals.  Some nights more centrals than everything else combined, others more of all the other stuff. 

I'm a pretty active sleeper and you'll notice a couple of short but large leaks - these are either (a) me flipping over and pulling the mask part way off (except one time ever this wakes me up and I put it right back on) or (b) my arms getting tangled in the hose (I have the type that attaches at the top of the head -this happened a lot more before when it was the other type) and pulling it out of the mask, which makes a terrifying sound and wakes both me and my spouse up. 

Is there any way for me to figure out if this is REM sleep or positional? I'm guessing if it's REM related there's not so much I can do, but if it's positional I can try to stay out of that position. I usually fall asleep on my back but wake up in any position. I'm hesitant to jack up the pressure (even though it's fairly low) because of the centrals that happen between the clusters and that I had a lot of aerophagia when I was on 4-12, but only on the nights it got up higher. Perhaps with more experience I'll get less of that going higher.  Thoughts if any? Thanks so much!

[G. Szabo]

I'm a pretty active sleeper and you'll notice a couple of short but large leaks - these are either (a) me flipping over and pulling the mask part way off (except one time ever this wakes me up and I put it right back on) or (b) my arms getting tangled in the hose (I have the type that attaches at the top of the head -this happened a lot more before when it was the other type) and pulling it out of the mask, which makes a terrifying sound and wakes both me and my spouse up. 

Is there any way for me to figure out if this is REM sleep or positional? I'm guessing if it's REM related there's not so much I can do, but if it's positional I can try to stay out of that position. I usually fall asleep on my back but wake up in any position. I'm hesitant to jack up the pressure (even though it's fairly low) because of the centrals that happen between the clusters and that I had a lot of aerophagia when I was on 4-12, but only on the nights it got up higher. Perhaps with more experience I'll get less of that going higher.  Thoughts if any? Thanks so much!

Here are my two cents: 
Increase the pressure because you hit its limit. Hitting the limit is at least as bad as having CAs, if not worse; simultaneously, set EPr=0 to mitigate the CAs. 
Purchase a hose hanger on Amazon to avoid entanglements. 
Also, use a CPAP pillow, which helps to prevent FF mask leaks when you sleep on your side. 
Try to avoid sleeping on your back. There are quite a few devices available to support your habit change. I know it is difficult, but this is one of the most effective ways to reduce OAs.

[ac123]

Thanks! I will try some adjustments. I have a hose hangar and CPAP pillow but am still having those issues sadly. I will work on the rest.

[ac123]

Hello all, I've been doing pretty well and overall I often have an RDI of 1 - 1.5. But I have been having some nights where I'm just a mess. Under 5, but still a lot going on. I am struggling with what to do to adjust to this sort of thing (see image).

There are more centrals than obstructives, so I'm not sure increasing pressure would be helpful. There are both flow limits and centrals, meaning it's not clear to me if I increase or decrease EPR (or neither).  Any other thoughts?


Edit: ack, I forgot about not pasting images. Sorry! Corrected now.

[G. Szabo]

You had lower AHIs in APAP mode. Why did you switch to CPAP?

[ac123]

G. Szabo, thanks for taking a look! I really appreciate it.

Long story short, we increased the pressure for comfort and because it was reaching the prior max (7) several times every night. 

Early in my therapy I was having difficulty with intense aerophagia, so my Dr. set it way, way down (to the very minimum for a while) and then we started going up from there. I was stable for a while at 5-7 APAP (which I know is still quite low) but then I started having many instances where I suddenly felt like I needed to take a deep breath and I couldn't do it fast enough. Some would be while I was falling asleep, some I would wake up for, some would be when I woke up in the morning but before I could muster the energy to get out of bed. Feeling like you can't get enough air is a scary feeling and was making everything else worse. So, my provider recommended trying fixed at 8 instead. She was also concerned that sudden pressure changes might be part of the trigger for centrals for me (although that's looking less likely). The good thing is that I'm not getting the original intense aerophagia (it wasn't clear exactly what level it had to get to to trigger it) although I'm sometimes getting all the stuff you saw on that chart.  The only externally obvious issue I've been having is leaks increasing recently, although I replaced some of my equipment and I think it was just those items wearing out because they went way back down. 

For better context, I've also attached a recent good day and a recent "okay/medium" day as well as trends. You'll see a very obvious spike in centrals after increasing, but I think the are fading. This has been my experience throughout - each time we increase the pressure that gets worse, but at the lowest pressures I wasn't getting any obvious benefit of the therapy. FYI, my AHI was never really all that high (I qualified for treatment because of RDI), but my provider thinks it's more subtle disordered breathing not as easily picked up by the machine that's contributing to my symptoms.

[G. Szabo]

Your flow limit was too high on September 22 (0.25). Hence, you would benefit from some more increased pressure. It would, alas, increase your CAs.