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ASV success stories?
#1
ASV success stories?
Hello,
I have struggled with extreme sleepiness and fatigue for years, trying multiple medications, nasal surgery, meditation, hypnosis, energy medicine, etc to no avail. In 2013 I had the first of several in-lab and home sleep studies that showed mild to moderate OSA, with a number of centrals, lots of RERAs and an RDI in the high 20s. CPAP just made things worse, as did an oral appliance.Last week I made another try, this time with a new bipap machine. The result has been lots of pressure-induced central apneas which now makes me a candidate for ASV.

So I would like to hear from people who are using ASV machines. The big question is, do you feel better? More awake and alert, less tired? Are you glad you are using it? How long did it take to feel better? Do I dare hope?

Thanks!
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#2
RE: ASV success stories?
I can't say how asv will work for you but here's a bit of my story.  I've been wanting to show off this chart because it so clearly depicts the difference between my experience with apap and asv (started asv 6.4.18). in retrospect I believe I've been a lifelong apneac. first officially diagnosed at age 32 in 1987, all central apnea.  no treatment available at that time.  I'll spare you the discouraging tales of the intervening years.  roughly 30 years and 40 pounds later, my most recent of many sleep tests, in late 2016, resulted in ahi of 72.4, almost equally divided between obstructive and central.  nevertheless, I was diagnosed obstructive and prescribed apap.  apap significantly reduced untreated ahi, both oa and ca nearly equally, but never managed to get long term aggregate ahi under 5.  1.5 years of apap and was still about as non functional as before apap and still felt awful.  with encouragement from board members I decided to buy a used asv.  you can see the differences in the chart.  I'm still very tired due to fragmented sleep, which I've come to understand is a consequence of periodic limb movement (which isn't treated by cpap), but I don't feel as sick and useless now as with apap.  while I want to feel still better, I felt noticeably better very quickly after starting asv.  in the chart you can see how my sleep session graph is getting more dense with asv; longer sessions and longer overall hours of sleep.  ahi is almost always under 1.  asv took a couple nights to get used to.  biggest issue is by design in the way it treats centrals: in the beginning it can be a bit unnerving to feel the machine 'nudging' us to breathe when we're slow to do so - it feels like no, I don't want to breathe, stop pushing me, stop waking me up, but after a couple nights I never felt that again.  in the early going the machine would also kind of take off on its own, increasing pressure to the point where at first I'd have to stop and restart the machine, but then I learned to 'blow back' forcefully and that settles the machine right down (reduces pressure).  since then I've learned to avoid the triggers that cause that crazy increase in pressure.  occasionally I retry apap, and while not horrible, ahi is higher than with asv and breathing with apap feels much less natural and I start feeling worse again.  I suspect it would have been a difficult path to get the 'system' to authorize an asv for me but I'm very glad I went ahead on my own (with the fantastic support of this forum).  I can only hope that the data will speak for itself when the time comes to get a prescription to replace it because I don't want to go back to apap.


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#3
RE: ASV success stories?
Briefly: My untreated AHI was 62, being 50% central. An initial trial on APAP was very little help, as was a subsequent trial on the Philips ASV. (This was in 2013, so the models I used are now superseded). I hated the Philips and it always felt like the machine was trying to force me to breathe when I wasn't ready.

I went from that to a Resmed S9 VPAP Adapt ASV. It was like chalk and cheese - the Resmed works with you and supports your breathing. It doesn't try to force you like the Philips did. My AHI dropped immediately and is now always under 2.0 and frequently under 1.0. I still have fragmented sleep, but that's because of other issues not related to the apnea. However the ASV has effectively "cured" my apnea and I do feel much better for having it. When I say "cured" I know that if I don't use the machine I will again experience the debilitating effects of an AHI over 60.
DeepBreathing
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#4
RE: ASV success stories?
Hi Bemused...
Your CPAP journey resembles mine, from the horrors of straight CPAP to the worse horrors of BiPap to the relief and almost joy of my initial ASV experience. ASV has made the therapy bearable, but as a complex trauma survivor I am very sensitive to the air pressure, so I don't find I am any better with  the ASV, but as least I am not choking to death anymore. If was going to say anything about the therapy I would encourage you to get the apneas under control, there is lots of help available on this site, then take a look at anything that might be contributing to persistent fatigue or sleepiness. A good start with sleep issues is the book Sound Sleep Sound Mind by Barry Krakow....
all the best with your CPAP journey, you are not alone....
Storywizard
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#5
RE: ASV success stories?
I will post a few graphs for me I only have CA’s during REM sleep but it was affecting my blood pressure and sleep quality here are some typical charts zoomed in on some flow to show what each machine does fir my CA’s

First atypical night on my Autoset 10
[Image: attachment.php?aid=10362]


Then my attempt with a BiLevel machine with a backup rate (a Resmed Aircurve ST)

[Image: attachment.php?aid=10363]


Finally a typical graph on my ASV
[Image: attachment.php?aid=10364]
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#6
RE: ASV success stories?
Hello bemused.
I have had some bumps in my ASV therapy. First I had a straight cpap set at 20cmh2o, I was not compliant, at all. Years go by and I feel like a zombie most of the time, gained weight and type 2 diabetes, then the six months or so that I know I slept but did not feel like I was ever getting rest. I asked my doc if I could see a sleep specialist, he agreed and the new journey started. I went through five in clinic sleep studies to get about three hours of sleep during the last one! during that last sleep study I never reached REM sleep, the first one was totally worthless as I only registered 19 minutes of sleep! My last study showed that I had the best results on ASV and I was prescribed (at my request) an ResMed Air Curve 10 ASV. I was not able to sleep more then 4 hours a night with it , at first, I then became complacent and stopped using my therapy and before long I went into AFIB. I of course started using my machine and could not get more then 4 hours of sleep at night, it seemed that after 4 hours I would wake up feeling great but would get tired before my shift ended and would become severely sleepy before going home for the day! I again stopped using therapy and again went back into AFIB and needed to have catheter ablation to stop going back into AFIB regularly.This was not a good plan, I needed to stay PAP compliant and put my mind to using my machine weather or not Slept 4 hours or what. It took time but gradually I started to sleep longer and longer as time past and I persisted in using my machine. I have been able to get at least 7 hours, usually 8 every night as my body became used to getting real rest during the night!
  
All I can suggest, as with my own experience, is to stick with it. If you are having trouble talk to the people here who seem to go out of their way to support those who are having issues!

I did have one more bout of AFIB, I ended up burring my chin tightly against my chest and my pillow ended up between my head and the headboard, this blocked my airway, my mask blowing off my face or my racing heart woke me, I made an appointment with my electrophysiologist the next day, and made arrangements to have a cardioversion done but ended up converting back to normal rhythm on my own!
"Right wrongs nobody" 
Mountain Charlie McKiernan 
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#7
RE: ASV success stories?
(04-15-2019, 01:39 AM)jaswilliams Wrote: I will post a few graphs for me I only have CA’s during REM sleep but it was affecting my blood pressure and sleep quality here are some typical charts zoomed in on some flow to show what each machine does fir my CA’s

First atypical night on my Autoset 10
[Image: attachment.php?aid=10362]


Then my attempt with a BiLevel machine with a backup rate (a Resmed Aircurve ST)

[Image: attachment.php?aid=10363]


Finally a typical graph on my ASV
[Image: attachment.php?aid=10364]

wow jas! thats a beautiful flow waveform, congrats!
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#8
RE: ASV success stories?
jas, the graph is textbook perfect. But what I really want to know is, how do you feel?
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