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[Diagnosis] Should I press for harder for ASV?
#1
Should I press for harder for ASV?
On my previous thread, http://www.apneaboard.com/forums/Thread-...yne-Stokes, it was clear that I didn't have Cheyne-Stokes but a level of Central Apnea events... so I wanted to started a new thread since the original question was no longer relevant.

The good news is that my CA events on most nights is below AHI of 5. But, I do have nights where it is 10 or 15 at times. However, even on nights of low AHI, I do have situations where I stop breathing for 8 seconds, but not the 10 to make it an event. My doctor thinks no further action is required. However, I remain concerned and wonder if ASV is still the proper treatment. Seeing the lowered numbers, however, I don't think this would ever get approved by my insurance company even if I could convince the doctor. Not sure what I can do to help demonstrate ASV as it usually assumes AHI >5 is required, and I think most nights, not 1 out of 7.

Should I stick with my APAP compliance for the next three months and then get a ASV unit on my own? Is ASV crazy at this point? It is costly so if it won't help I'm not sure I want it. I would like to have 7/7 nights of good sleep and not 5 or 6.
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#2
RE: Should I press for harder for ASV?
Have you ever tried re-introducing EPR? I'm wondering if it still a big CA trigger for you.

Your pressures are set wide-open at 4-20, but run 4 to 6. Obstruction is resolved for you at very low pressures. In addition to centrals, you have a lot of breathing that varies in flow rate and volume, which was the cause of the CSR flags. You do pretty well at these low pressures, and if we introduced something like ASV that would involve pressure support that would resolve the irregular breathing, hypopnea and central apnea, but that extra pressure support would likely trigger its own centrals, so I think you would be fairly dependent on the machine for much of your respiration at night. It's possible that would not be very comfortable since you would go from predominantly spontaneous breathing to a considerable amount of backup pressure breathing.

The questions I have to ask is, how much functional impairment do you sense with the current situation? Will that get better if you turn-over the respiratory effort to a machine? I know JesseLee obtained an ASV through an estate sale and decided it wasn't for him. It would be fantastic if we could all try something at no risk ASV machines are pretty rare, but they do come up at surprising prices from time to time. If you have the time to wait, then start searching (SearchTempest) and keeping an eye out on some of the used machine channels (someone may else may suggest a few without posting links). At least you can get the machine you want to try and the risk is minimal if you can get back what you paid, if it doesn't work out.
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#3
RE: Should I press for harder for ASV?
Hi cisbrane,
How long have you been using your machine?
Like you I had CPAP emergent central apnea. After a few months it had largely been resolved. Mine settled down to a CAI of about 0.7 and has stayed there.
Depending who you listen too, and what measurement is being use, the studies say that a majority of people with treatment emergent centrals have them resolved within 3 months.

A summary of my startup on APAP.
https://i.imgur.com/qqQpiFR.png

I only have the first week, then decided to not look at the data on a recommendation. It was a rental, so I don't have the data for the next few weeks.
When I got my own machine I was pleasantly surprised.
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#4
RE: Should I press for harder for ASV?
cisbrane, from my limited experience and what I've read on this forum, few sleep docs look at anything but averages of averages (daily avgs converted to monthly avgs) and insurance compliance. otoh, I hear tell that some docs are receptive to charts thrust at them during one's 10 - 15 minute compliance or other follow up appointment. if you can convince them that even though your ahi is sort of okay, the machine you are using isn't solving whatever - in my case it's fragmented sleep and just not feeling any better than before apap - many will move you to the next step. for several reasons, I didn't wait to go through all that, found a used asv to experiment with, and after 10 days or so am very very happy I did. I haven't read through your thread in a while but I seem to remember we have some similar issues. I'm not remotely qualified to make any kind of recommendation however so you'll have to decide whether and how to proceed. nor am I encouraging you to operate outside the medical and insurance 'system'. but if you can find a used machine to try, I'm told there's sufficient demand (as others have noted above) that you'll probably get most of your $ back if it doesn't help you. meanwhile, keep trying the suggestions of experienced folks here until you feel you've exhausted the potential of your existing machine to resolve your problems. it took me 1.5 years on apap and months of getting help from forum members before I realized I wasn't likely to experience any additional improvement with my apap. it's really a shame the system puts some of us in the position of having to gamble for any hope of improving our situation, but it is what it is. I wish you the best. keep us posted.
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