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Do I have Cheyne-Stokes?
#31
RE: Do I have Cheyne-Stokes?
Thanks for the words of encouragement and of other experiences. My AHI was 23.9 last night!! I did take my allergy meds again this time.... need to experiment to see if that matters lol, but at the end of the day, it probably doesn't matter. I plan to call my doctor today or tomorrow to check in the status and to confirm what type of study was ordered. I want to be sure an ASV titration would be included. My insurance took like 1.5 weeks last time to respond. I am hopeful for a solution as soon as possible.


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#32
RE: Do I have Cheyne-Stokes?
When it comes down to the choice of machine, I will encourage to to select the Resmed Aircurve 10 ASV rather than the Philips Respironics BiPAP Auto SV. Both are good therapy devices for central and complex apnea, but the Resmed seems to get better results with less tweaking of the settings, and is generally perceived as more comfortable and natural.

Keep in front of your doctor or nothing will happen.
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#33
RE: Do I have Cheyne-Stokes?
How are you sleeping, are you waking up frequently, feeling awful in the morning?  I got to the point I just couldn't take the lack of treatment and started setting my alarm for every 2 hours, this way I didn't get into a 'deep' sleep where I might start having such a high AHI.  Instead, I would more or less just doze and I wouldn't get as high of an AHI and while I was still tired, I wasn't oxygen starved when I got up.
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#34
RE: Do I have Cheyne-Stokes?
As I'm falling asleep I start to realize I'm holding my breath... Then when asleep, I wake up several times wondering why so much air is being pushed into me. That's what happened last night in the big gap, I couldn't stand air being pushed into me anymore so I disconnected the hose from my mask. I don't think I feel oxygen starved, but when I wake up from my alarm, I do feel quite groggy and tired still. I feel slightly better from my original diagnosis, but no where near feeling good. I wonder if I'm getting too much oxygen and my body is reacting?
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#35
RE: Do I have Cheyne-Stokes?
Yep, I too couldn't tolerate the air being pushed into me constantly.  I found it very uncomfortable to exhale and  even on ASV, I can't have my EPAP high, as a matter of fact, mine is at the lowest the machine will go; 4.  Being on the ASV feels so much better in that when I take a breath, yes, the pressure goes up to blow air in, which I normally don't need.  It's when I don't breath that the true benefit comes into play. 

When I don't breath and the machine builds up the pressure to force air into my lungs, it doesn't bother me at all, and the next biggest feature of ASV is the fact that once the 'volume' of air has been delivered, the pressure drops off and I can exhale.  With a CPAP of anything higher than 5 made it very uncomfortable for me, 10 was like forcing air and then taping my mouth shut so I couldn't exhale.
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#36
RE: Do I have Cheyne-Stokes?
Can a leaky mask be flagged falsely as a CA event? I noticed in some of my data that I have leaks around the same time as some of the CA events.

I did find this article which has some relation between leaks and CA events. However, my overall leak rate is much smaller than what I see in this document... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805805/

Could I be a mouth breather? Or would leak rates be much higher?
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#37
RE: Do I have Cheyne-Stokes?
I think your CA and periodic breathing are unmistakable and have nothing to do with mask leaks. I have seen leaks occur in other people that coincide with occasional apnea, and in those cases it can be the leak, or transitional sleep or movement that creates the event...not so much for you. Keep on the ASV path; you need it.
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#38
RE: Do I have Cheyne-Stokes?
@cisbrane

I think you are getting very good advice here. No surprise there.

I think you will get a lot of relief from your fatigue with ASV.

It was necessary in my case to drive my physician in this direction--and he is a highly qualified sleep specialist. It is work being the squeaky wheel.

Best,

Bill
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#39
RE: Do I have Cheyne-Stokes?
Thanks everyone. This weekend was strange. On Friday night I had AHI 30 full of CA events. Saturday night I adjusted the straps on my mask and it went to 2 AHI.... What?  However I felt really tired and only kept it on 4.5ht. but Sunday night i also adjusted the mask, and I managed to keep it on 8hrs. AHI was 1.3!? I'm quite confused how things could drop so dramatically. I didn't feel like my mask was poorly adjusted before. However I did wake up at times feeling uncomfortable in my bed so maybe that's how it dropped?

If the trend continues maybe it just randomly resolved, but I saw periodic breathing in my Saturday data. I'm having issues with my computer, so I have no data to post at the moment.
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#40
RE: Do I have Cheyne-Stokes?
Most central and complex apnea afflicted individuals I have seen seem to get consistently inconsistent results. You more than most. This makes it difficult when it comes to sleep testing, which characterizes short samples of sleep as" typical". If only doctors would learn to use the long-term data readily available to them from the PAP machines!

The point is, you still have enough nights with severe central apnea and periodic breathing to warrant proper treatment. ASV would treat those nights, and just provide supportive pressure when you are not having events. Any response from your doctor's office on testing yet? Have you considered just self-treating?
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