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Checking In, and a BPM experiment - tmoody - 08-11-2017

Hello.

I haven't posted here in over a year. I was pretty active while I was trying to figure out ASV settings etc, then I just settled into a routine and stopped fiddling--and stopped checking the forum.

As a quick recap: I was diagnosed with OSA/AHI=42 back in 2006. I got a Respironics S8 CPAP which I used faithfully for the next nine years. Never went back for a "followup." Then, about two years ago I got the idea to get a new machine. The S8 was getting noisy and I was hoping for something smaller, for travel purposes. I quickly learned that I needed to get a new prescription. The doc didn't order a new study; he just ordered me a Dreamstation auto-BPAP, and that's when things got interesting. I noticed pretty high Periodic Breathing numbers on the readout (the old S8 didn't have any data like that). I didn't know what that meant, but started to get alarmed. After a few months, a new sleep study revealed complex apnea and I learned about centrals, and the Dreamstation was swapped out for a Phillips System 1 ASV, which I'm still using.

With much help and encouragement from this forum, I adjusted settings, kept logs, and eventually arrived at what seem to be decent settings. My AHI for the past year as generally been under 2. In fact, SleepyHead tells me my average for the year has been 1.35, which I'm happy with. There have even been some zero nights, which made me wonder if the machine had malfunctioned.

In the past six months, my AHI has begun to creep up a bit. Some of that has been the result of a few really bad nights that threw the average off. For example, when I flew to France, got no sleep on the plane, and was up almost 30 hours before finally getting to bed, my sleep was agitated and my AHI the next morning was over 10. I got high readings (not that high, but 5-6) for the next few days until the jet lag wore off. Something similar happened again when I returned. Then I made another trip overseas, to the UK, and this trip was shorter so by the time I was adjusted to the new time zone it was time to return. The result was another string of high AHIs.

And frankly, sometimes it's just mental agitation that affects that number.

My bigger problem lately is...getting enough sleep! Most days I wake up after about seven hours, feeling like I'd like to sleep longer if I could. My AHI may be fine but I still wish I could sleep longer.

I decided to examine my Patient Triggered Breaths number. As a general thing, the average is quite high, 98% or better. But when it drops, it tends to be in the last hour or so before I wake up. I have the idea that the ASV action may be contributing to my early waking. To test that, I'm going to try taking the BPM setting off auto and gradually lower it. I'm starting tonight at 14, because my usual respiration rate is 14-16. I'll leave it there a few days and see what happens. Maybe some centrals will start to sneak in; maybe I'll sleep longer. I really have no idea, but since I haven't adjusted a setting in over a year at least I have a solid baseline.

Mainly I just wanted to say hello.


RE: Checking In, and a BPM experiment - Sleeprider - 08-11-2017

Nice to see you back on the forum. You are very aware of the variable that affect your treatment and are probably the best one to judge what's best, so I'll just welcome you back and hope you will hang around and help those that are following your path. As you probably know I have been leaning more to the Resmed Aircurve 10 ASV for those that need it, but I htink your take on the Philips Auto S/V would be a valuable counterpoint if you'd care to offer it.


RE: Checking In, and a BPM experiment - tmoody - 08-12-2017

Thanks for the greeting.

Yes, I recall you favor the Resmed Aircurve 10 for complex apnea. Maybe someday I'll get to try it. From what I read, the algorithms are somewhat different.

For what it's worth, when I went to bed last night I immediately realized that my BPM setting of 14 was way too high. I knocked it down to 10, then after about thirty more seconds, 8. It didn't help me to sleep any longer. I woke up after 7:15 hours. Maybe that's all I really need and my sense that I could use more sleep is autosuggestion. Whatever. My AHI was .9, so no complaints there. I put the data into SleepyHead and found that my PTB average was 98.5, which is about where it is when I have it on Auto, so no discernible difference yet. No OAs or CAs, just a handful of hypos. All in all, an uneventful night's sleep, which is what we like to see.

I'll keep BPM on 8 for a while longer to see if anything interesting happens. I guess when it's at zero the machine is effectively functioning as an APAP, no?

I usually fall asleep pretty quickly. I have the ramp set to 10 minutes. Occasionally, if I don't fall asleep that fast, the ASV action can be annoying, as the auto algorithm tries to make sense of my erratic waking breaths. Same thing as I wake up. So I did notice last night, with the BPM on 8, very little of that interference. I guess the trick will be to find the lowest setting that doesn't result in the reappearance of centrals.

On a completely different topic, during the past year I've met a number of people who either have started using, or been instructed by doctors to start using, *PAP therapy. I've become quite the *PAP whisperer to such people. As we see on this board, many many people insist they can "never get used to" the therapy, the mask, or whatever. I've been able to gently get them to take a fresh look at it.

For example, I made a point of showing my machine in some photos of where we stayed during our vacation in the south of France and Barcelona. I mention it's No Big Deal to travel with these gadgets. In addition, in the past year I've lost weight and been much more diligent about working out. As a result, I feel and look a lot better. I think it makes me a better spokesperson for *PAP therapy.


RE: Checking In, and a BPM experiment - Sleeprider - 08-12-2017

Interesting how you are adapting yourself and your settings to work for you. I think your experience with BPM is a good example of why I like the Resmed which uses "Pacewave" to set the rate at what is natural for an individual, rather than a minimum BPM setting.

I too have whispered about the benefits of PAP therapy, and have a brother that took it up this year after a sleep study showed his oxygen was dipping into the low 60s. He had spent the night here this past Spring, and I could clearly hear his apnea and breathing restarts.


RE: Checking In, and a BPM experiment - trish6hundred - 08-12-2017

Hi tmoody,
WELCOM BACK to the forum.!
It sounds like you really have a handle on your therapy, keep up the good work and CONGRATULATIONS on your weight loss.


RE: Checking In, and a BPM experiment - tmoody - 08-13-2017

(08-12-2017, 12:54 PM)Sleeprider Wrote: Interesting how you are adapting yourself and your settings to work for you.   I think your experience with BPM is a good example of why I like the Resmed which uses "Pacewave" to set the rate at what is natural for an individual, rather than a minimum BPM setting.  

I too have whispered about the benefits of PAP therapy, and have a brother that took it up this year after a sleep study showed his oxygen was dipping into the low 60s.  He had spent the night here this past Spring, and I could clearly hear his apnea and breathing restarts.

When the machine is set to "auto" it uses an algorithm to figure out the rate. I don't know the details of that algorithm, although I gather it has something to do with averaging over a moving time window and adjusting accordingly. My experiment with minBPM is just to see if that works better for me, especially after noting that some people in this forum prefer it. For what it's worth, my AHI last night was .7, again with minBPM=8. So, the last two nights have resulted in lower AHI than my recent, or even long-term, average. But that could be a coincidence. My PTBs last night were at 99.8%.

As for PAP whispering, I try to remember what it was like when I first started. Initially I felt like...an invalid. I had the self-talk, "How pathetic is it that I can't even do something as basic as sleeping without a bunch of stuff strapped to my head!" In short, PAP therapy didn't line up with the image of myself that I wanted to maintain. I don't know if that's a common reaction, but it certainly is a destructive one. So when I talk to people who are struggling with PAP, I don't preach about the health issues. I just try to keep it positive, joke about it a little bit, and try to convey the sense that it's just not a big deal and certainly doesn't define me.

And thank you Trish6hundred. The weight loss has been difficult, but it has made a difference both in terms of how I look, how I feel, and especially my blood pressure.


RE: Checking In, and a BPM experiment - Sleeprider - 08-13-2017

Interesting stuff. I thought that you had the auto option, but I'm less familiar with the auto sv advanced than I'd like. Good luck with your experiments, and perhaps your experience can help others. I could use the weight loss tips. Sad


RE: Checking In, and a BPM experiment - tmoody - 08-13-2017

(08-13-2017, 08:12 AM)Sleeprider Wrote: Interesting stuff.  I thought that you had the auto option, but I'm less familiar with the auto sv advanced than I'd like.  Good luck with your experiments, and perhaps your experience can help others.  I could use the weight loss tips. Sad

I do have the auto option, I'm just experimenting with turning it off. I have the theory that the auto option may be counterproductive during lighter sleep, but I may have it all wrong. I was hoping I'd sleep longer without auto but so far that hasn't been the case. My AHI has dropped though.

As for weight loss, I took the radical step of switching to a while food plant based diet, very low in fat. It hasn't been easy, and the weight lids has been slow, but slow is better than nothing!


RE: Checking In, and a BPM experiment - robertbuckley - 08-17-2017

Sleeprider - the PR ASV "Auto" breath rate is akin to the "Pacewave". Taking it out of auto and setting a number in the PR is setting a floor below which it won't let you drop. People that play with it out of auto mistakenly set it at their usual average BPM (like 16) and then wonder why they think they are panting part of the night. It is because the machine will not let you breathe slower than that. Best to leave it in auto, or if not, put it down in the 8 - 12 range as the slowest BPM.


RE: Checking In, and a BPM experiment - Sleeprider - 08-17-2017

Thanks, noted. I had casually observed this problem, but it's helpful to have you guys that are using the machine get involved...as long as you do, I won't feel a need to do so.