BiPAP ST User Needs Help with Centrals/Hypopneas

[BrianinTN]

A couple updates. First, the doc wasn't at all worried about the 20/13 pressure taking away my respiratory drive or work of breathing, so that's good I guess. He also pretty instantly surmised that this ain't working and hopped about the ASV bandwagon. So, looks like I'm headed toward yet another sleep study and new machine (assuming I don't get all stable on the BiPAP like I did last time in the lab, I guess).

So on that...take a look at the results he gave me for my last titration. Looks like I had three pretty stable hours at the 20/16 pressure. Comments or thoughts on this? Those stable results seem very different from what I've had going on at home. He did give me some samples of Mirapex ER to help my leg kicking, in case that's fueling my exhaustion.

Last night was short at 4:27, but with an AHI of 3.6, so I guess I'll keep sticking with the BiPAP for the time being.

[-SWS]

He also pretty instantly surmised that this ain't working and hopped about the ASV bandwagon. So, looks like I'm headed toward yet another sleep study and new machine

That's encouraging news!

So on that...take a look at the results he gave me for my last titration. Looks like I had three pretty stable hours at the 20/16 pressure. Comments or thoughts on this?

We can see why he commented about the BiLevel giving you excellent results. Those three hours at 20/16 look great. Unfortunately your subsequent 20/16 nights at home weren't nearly as good.

Those stable results seem very different from what I've had going on at home. He did give me some samples of Mirapex ER to help my leg kicking, in case that's fueling my exhaustion.

Good luck with that. Good idea to try and eliminate that possible fatigue root-cause before your next sleep study.

Last night was short at 4:27, but with an AHI of 3.6, so I guess I'll keep sticking with the BiPAP for the time being.

Keep on pluggin'!

[BrianinTN]

No word yet from the doc or the sleep center on setting up my follow-up study. In the meantime, let me ask two things I've been contemplating.

First, I still feel I'm in an exhausted haze every day, far worse than when I wasn't hooked up to the BiPAP. I'm pretty non-functional and out of it -- to the extent that I feel like I ought not even be driving my car sometimes. I've read some accounts of folks on here who have decent numbers but seem to start off this way -- and some of them don't seem to feel better, even after months. Other than "hang in there [indefinitely]," what words of wisdom or advice might you have? So far, the Mirapex hasn't had an effect, although it's only been a few nights at this point.

Second, but related, since my average AHI each night since I started 20/13 has been under 5, do I still even sound like an ASV candidate? Is there something beyond the rudimentary AHI numbers that the ASV might help accomplish that I'm simply not getting with the BiPAP S/T and that may be responsible for my exhaustion?

Thanks everyone (and especially SWS, since you're a veritable fountain of knowledge ).

[-SWS]

Bump for ideas/comments/suggestions/opinions...

In the meantime, let me ask two things I've been contemplating.

First, I still feel I'm in an exhausted haze every day, far worse than when I wasn't hooked up to the BiPAP...

Second, but related, since my average AHI each night since I started 20/13 has been under 5, do I still even sound like an ASV candidate?

I'll offer that Brian's high machine trigger rate at 20/13 and those symptoms suggest an ASV trial---which might turn out to be an inherently less sleep-disruptive therapy for Brian...

[rested gal]

Have been following but had no comment to make other than that I agree absolutely with trying an ASV titration study:

I'll offer that Brian's high machine trigger rate at 20/13 and those symptoms suggest an ASV trial---which might turn out to be an inherently less sleep-disruptive therapy for Brian...

A couple updates. First, the doc wasn't at all worried about the 20/13 pressure taking away my respiratory drive or work of breathing

Wonder if the doctor understood exactly what you were asking, based on the change you'd seen recently on your machine downloads... i.e., the drastic drop in number of your spontaneously initiated breaths. Wonder if the doctor thought you were just asking whether a pressure of 20 would do that to people in general?

[BrianinTN]

He at least seemed to understand. I took in crutch notes and used SWS's wording verbatim (about mechanical replacement for my WOB). Of course it's entirely possible he wasn't listening, or didn't understand, or simply doesn't know a ton about CompSAS. I lost the will to ask him how many CompSAS patients he sees, mostly because I didn't want to seem confrontational when we'd agreed upon an ASV titration already. Not sure he grasped how debilitated I am feeling though.

[rested gal]

I didn't want to seem confrontational when we'd agreed upon an ASV titration already.

Sounds like you definitely went about it right. Later (hopefully before the ASV night) you might have an opportunity to ask about the number of CompSAS patients he's treated -- asking in a way that might sound fairly innocuous.

Perhaps something along the lines of...

"Do there seem to be many people with Complex Sleep Apnea Syndrome...people that have even more centrals popping up when they are put on any kind of cpap machine, even a bilevel S/T? Do you see much of that?"

[BrianinTN]

So if y'all were me, how would you do things right now? Given my travel schedule plus the fact that they haven't even scheduled my ASV titration study, I'm at least two (and probably more like four) weeks away from even the possibility of being on the ASV at home. Given that I generally feel OK (but not great) after a night of no machine, but feel pretty awful day and night while on the BiPAP, would you all keep using it in the interim or take a chill pill until we get to the ASV data? I can post data screenshots if that would help, but in general, it's sub-5s for my AHI with a highly, highly variable amount of patient-triggered breaths.

And yes, I realize no one would ever say to a patient "Don't do your prescribed therapy!" -- which is why I'm asking this as what you would do rather than what you would counsel me to do. . If there is some reasonable likelihood that I merely need more time for my body to adjust to this, OK. But if I'm barking up the wrong tree for the time being, I'd rather get my life back for now rather than spinning my wheels and being an irritable zombie.

Thanks again (and again)!

[rested gal]

So if y'all were me, how would you do things right now?
----
And yes, I realize no one would ever say to a patient "Don't do your prescribed therapy!" -- which is why I'm asking this as what you would do rather than what you would counsel me to do. .

ok, I'll go out in a limb and say what I'd do... considering this (especially the part I put in bold red:)

Given my travel schedule plus the fact that they haven't even scheduled my ASV titration study, I'm at least two (and probably more like four) weeks away from even the possibility of being on the ASV at home. Given that I generally feel OK (but not great) after a night of no machine, but feel pretty awful day and night while on the BiPAP, would you all keep using it in the interim or take a chill pill until we get to the ASV data?

Sooooo...if it were me -- yeah, I'd probably put the machine aside for the time being. Only because of the bold red words. I'd wait for the ASV titration.

If unsure whether the doctor's office has actually contacted the sleep lab yet about scheduling an ASV titration, I'd start calling the doctor's office every other day, to ask if the sleep lab has given them a date.

After I found out the contact had been made, I'd call the sleep lab to confirm that it is, indeed, scheduled as an ASV titration...not a "regular" sleep study titration. And while I had them on the phone, I'd mention that if they have a cancellation on a night when the tech that handles ASV titrations is coming in, to please call me.

Actually, I'd first beg the doctor to let me try using an ASV at home while waiting. To have the DME loan me an ASV machine while waiting. Doctor probably won't go along with that idea...he'll say the settings have to be done through a PSG study, yadda, yadda. Meaning, he doesn't have a clue how to tell the DME what settings to put in an ASV for temporary use. Certainly, the settings should be arrived at via a PSG titration, but I'd still plead to be allowed to use an ASV at home while waiting. Since you've already been prescribed stratospheric pressures on the S/T anyway...

To make it easier for the doctor to consider your plea... during the begging suggest some settings for the ASV. Phrased perhaps: "While waiting for the titration...just to help me breathe at night until the titration takes place ...would it be reasonable to temporarily use an ASV at home with settings like IPAP ___, EPAP____, etc.___ just during the wait?"

See if you can nudge -SWS out on the limb (there's room for him right here beside me! ) for a suggestion of ASV settings -- "if it were him, in your situation."

[-SWS]

If it were me I'd try a night running with BPM=auto. Of course I'd first bounce that proposed experiment off my doctor... And I'd be darn sure to copy down ALL the machine settings BEFORE trying a night using auto-backup. Quite a few settings are over-ridden by reverting to auto-backup.

Anyway, techs typically titrate using the auto-backup feature UNLESS they can't control AHI or periodic breathing. Then they'll typically replace BPM=auto with an Inspiratory time of 1.2 seconds for starters, and a fixed BPM that is 2 points less than measured spontaneous breath rate. However, now that AHI is consistently under 5, I'd want to see if the auto-backup algorithm provided me with a less "spontaneous preemptive" backup rate. If so, that might make for more restorative sleep...

As a side note, increasing PS can marginally increase Tidal Volumes. And increasing Tidal Volumes sometimes diminishes both our need and spontaneous drive to breathe at our former faster rates. When that happens, a fixed BPM setting can be rendered marginally fast----thus preempting the spontaneous drive more often than necessary.

[BrianinTN]

Yeah, I was intending to call the doc's office on Monday to follow up, but what you said definitely confirmed for me that I should. I do have some fear of irritating the guy. I need him (or, I guess more accurately, I need a doc) more than he needs me, and I already feel a bit awkward since he's told me I'm the only patient he's ever had to come in with Encore printouts. He seems nice and chill enough, but I've also been around enough docs to know that some definitely resent a patient coming in who's less than obsequious. I haven't seen anything yet to convince me that this guy is like that, but I also know it's easy enough for me to misread people. I feel fortunate that I'm taking time off right now, so I don't have a boss or school or anything at the moment holding my feet to the fire. I have absolutely no idea what I'd do if i were dealing with real world obligations at the moment...

As for setting the machine on auto: I'd love to and wanted to a couple weeks ago when we were talking about various pressure settings, but unfortunately, the BiPAP S/T doesn't support any auto setting. (It doesn't support advanced data capabilities either, such as waveforms.) I've left my BPM at 16 per my prescription, but did adjust the inspiration time to 1.5, which made the BiPAP overall considerably more comfortable to use when going to sleep. I thought about using my CPAP, which is an Auto PR model and therefore can support an auto setting...but given that I do have a problem with centrals, it doesn't seem to me that doing so would be of much use. (If I'm wrong, feel free to correct me!)

So in light of all this, I may just chill out unless one of you weighs in and suggests I try something else. I figured I'd go ahead and share a sample of data from the last week with y'all too, in case it's useful either for my situation or for someone coming along later to this thread in the same boat.

[-SWS]

Since the BPM setting is really a backup rate---versus breath rate---it's typically set 2 or 3 below the patient's spontaneous breathing rate. So if you tend to breathe at 17 breaths per minute when sleeping/relaxed (w/out PB-driven rate skew), then BPM is typically set at 15BPM or even 14BPM as backup. When backup rate is set too close to spontaneous breathing rate, then the machine's timing can preempt an acceptable spontaneous breath rate---- to the point of being sleep-disruptive if not prohibitively uncomfortable to respiration itself.

Your recent Pressure Support (PS) increase raised your Tidal Volumes a bit. And raised Tidal Volumes can reduce both your body's need and spontaneous drive toward maintaining similar/equivalent Minute Volumes. So if/as your spontaneous drive attempts to maintain new and reduced BPM requirements---toward maintaining similar Minute Volumes---your unchanged machine BPM will preempt that downward-adjusted spontaneous breath rate more than before Tidal Volumes were increased.

So in summary, I'd experiment with a 1-point BPM reduction with doctor approval. Then pending those results, I might experimentally reduce BPM by 1 more point after that. Good luck...

[BrianinTN]

Thanks. You a seriously smart and helpful dude. I did a real number on my nose and forehead last night (something about these hotel pillows must have led me to overtighten my mask a lot more than usual), so I'm taking tonight and probably off to heal. I'll chat with the doc on Monday and report back middle of this coming week on how things are coming.

I really appreciate how awesome you guys are. If only I could redirect my insurance money and copays your way.

[BrianinTN]

I lied -- I'm not gone quite yet.

So, I wrote here that I had requested copies of my sleep studies. Well, what came in the mail this weekend wasn't them, but rather notes from my sleep doc to my primary doc. While that wasn't what I wanted, I was interested to note that the very first study from last June also noted PLMs and a "moderate" PLMD diagnosis with a movement index of 33.3. Last week was the first time anyone even mentioned the PLMs to me....

I went hunting on these forums to read the accounts of others with PLMD diagnoses, as well as those who had taken Mirapex (since I understand the generic version doesn't come in the ER capsules as the brand name). And lo and behold, I come across this rather old post of SWS's: viewtopic/t62418/viewtopic.php?f=1&t=46 ... ex#p422215

The interesting part was this:

My understanding is that a PSG can also help your doctor determine if those PLM's tend to cause the sleep arousals---or if the PLM's instead result from arousals associated with yet other origins such as apnea/hypopnea events, pain or sensory stimuli in general. So PLM's as a primary source of disturbance; or PLM's largely as a secondary consequence of yet other events with sufficient periodicity (and thus differentiated via PSG arousal-event sequencing). Or perhaps yours are currently only PLMs with but a few associated sleep arousals. A PSG can thus also help you and your doctor determine if PLMs are not the main culprit accounting for your daytime symptoms...

It may be best to take this to a totally different OT thread, and maybe a non-apnea board altogether, but just in case we can loop all this stuff together, let me ask my main question here first: How? More specifically, I suppose, if I'm looking at going on for my fourth sleep study in a year (and yet no one seems to have focused on the PLMD side whatsoever in the preceding ones), what instructions or requests can I make to figure out this chicken-and-egg problem and determine the best course of action?

[Mary Z]

I haven't found anything suggesting there's a medical risk to playing with pressures -- other than getting sub-optimal therapy, which I was obviously getting anyway.

I would ask the doctor if there are any known long-term risks to mechanically eliminating two-thirds of your spontaneous respiratory drive.

If a different treatment modality reduced your AHI WITHOUT disabling your spontaneous respiratory drive that way, then the alternative modality would clearly be preferable. BiLevel with supplemental O2 would be one alternate treatment modality for comparison. ASV would be yet another. Either of those treatment modalities might not impose such a severe iatrogenic effect on your spontaneous drive...

Then again, your autonomic breathing might eventually acclimate to that 7cm PS value, allowing your spontaneous drive to better tolerate those settings. Again good luck.

I don't know of any OSA/ Complex sleep apnea, central sleep apnea treatment that would disable your spontaneous respiratory drive. ASV inserts a breath or breaths when you're supposed to take a breath and don't, but no therapy inhibits your own drive to breathe.