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new to bipap, lots of central apneas
#1
new to bipap, lots of central apneas
Hello,
To start, though I'm new at this I have already found a wealth of information on this forum, thank you all for sharing your experience, knowledge and expertise. I would be lost without it.

Backstory: I've been sleepy almost my whole adult life, tried all kinds of therapy/drugs, meditation, etc. with no success. Because both I and my husband were self-employed I was reluctant to have a sleep study because any diagnosis of sleep disorder would make it impossible to get insurance. But with the ACA I finally was able to have an in-lab sleep study in 2013. The diagnosis was OSA, though I think it was really UARS -- AHI less than five, only one OSA the entire night, some centrals but mostly hypopneas plus RERAs and an RDI of 12. I was put on APAP but it just made things worse and I gave up after several months. Tried an oral appliance but it didn't help with sleepiness and made my teeth and jaw hurt. In 2015 I had surgery to repair a half-inch hole in my septum, which was making it nearly impossible to breathe through my nose. Subjectively I slept better but I was still sleepy, some days hitting 20 or higher on the Epworth scale, making me pretty much non-functional.

I'd pretty much given up on getting any help from the medical profession, but last year I decided to try again and lucked out with a new sleep doctor who actually is very knowledgeable, willing to listen and to work with me. So in November I had a home Watchpat study, which showed the OSA had progressed (it was a really bad night due to back pain and a cold, but still)--AHI 20.5, with about a third centrals, and an RDI of 27.5. I was adamant about not trying CPAP again because my last experience was so bad, but I really have been getting desperate. Long story short, we agreed it made sense to do a trial with bipap, with the idea we could switch to ASV if it doesn't work.

So I have now had three nights on an Aircurve 10 VPAP, set at auto with min EPAP 4 cmH2O, max IPAP 25 cmH2O and PS 4 cmH2O, with a Dreamwear nasal cushion mask. The good news is that the bilevel is waaay more comfortable than the APAP, the mask ditto over whatever I had before. In some bad timing the same night I started bipap I also stopped taking baclofen, which I have been taking for several months because it was the one thing that helped with sleep and seemed to have no side effects, until I realized that it was causing increasingly severe reflux and GI problems (I have paradoxical reactions to most drugs and this was no exception). So, rebound insomnia on top of dealing with the new machine. I felt I hardly slept at all the first two nights. Last night I took an ambien and felt like I slept pretty well, though awake for quite a while around 4.

So far so good, or at least improving. But -- my central apnea index seems unreal. The first night I was a little surprised to see that the AHI was 18.43, but the CA index was 12.33. OK, I figured, I was mostly awake and restless. And the OA/Hypopneas were just over 6, so that was good, right? Second night, more of same, awake a lot, only used the machine about four hours. The AHI jumped to 27.83, almost all centrals, 24.63. OK, still could be explained by restlessness, and the OAs and hypopneas were way down. Then last night, when I slept better and used the machine almost eight hours, I expected the numbers to be better. And they are some, but not much -- AHI 20.99, centrals 17.20. And looking at the Sleepyhead data I think most of the centrals were when I was actually asleep. I am wondering if it has to do with my usual breathing pattern, when awake anyway, which tends to be slow with sometimes long pauses between breaths -- an effect of years of meditation practice and swimming. Or if it's actually an indication of complex sleep apnea. Or if it's something that will go away as I get used to the machine.

Trying to insert screenshots from last night's Sleepyhead -- not sure if this is working (if not, what am I doing wrong?):
   
   

Would love to hear some thoughts.
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#2
RE: new to bipap, lots of central apneas
I think you need to lower your PS to 2 or 3 the PS of 4 is causing the CA’s the BI Level machine is worse for you and an ASV will be required
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#3
RE: new to bipap, lots of central apneas
I think jaswilliams is right. Try the settings he suggested first. But the fact you already had a central index over 5 on your sleep study, together with the very high pressure-induced centrals suggests an ASV is the way to go. Sometimes the pressure-induced centrals go away of there own accord, but I'm reasonably certain there is an ASV in your future.

There are two issues with ASV: 1) They can be expensive and your insurance company will make you jump through hoops to get one. 2) If you have severe heart failure the ASV can make things worse. Your doc will know about item 2, and it sounds like he/she's pretty switched on and will hopefully help you through the maze to get the ASV.

If you do go the ASV route, the consensus is that the Resmed model is far superior to the Philips for the great majority of patients.
DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: new to bipap, lots of central apneas
Two things are going on here. Over 17 AHI of CA and nearly 3 AHI of OA. Cutting back on pressure support is the first priority to reduce the CA events. I would start with EPAP min of 5.0 with 2-3 cm of PS. Since you have some flow limitation we don't want to go too low on pressure support, but the high central index needs to be the current priority. OA events are not particularly clustered, but I'm suspicious of the possibility for positional apnea. I guess we can deal with that possibility later. For now, let's limit the pressure range to EPAP min 6.0, IPAP max 12.0 and PS 3.0.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: new to bipap, lots of central apneas
Thank you all for such fast and helpful responses. Last night was a bit better, 16.41 overall, but still mostly centrals - 13.92 vs 1.92 obstructive and .57 hypopnea. So it's not just going away. Re: positional apnea, I sleep almost exclusively on my sides, sometimes on my stomach, almost never on my back so don't think that's a factor.

I suspected that I might end up needing an ASV, which is why I'm renting the bipap instead of buying it. I am nervous, though, about changing the settings myself, precisely because I don't want to run afoul of Kaiser and Medicare when it comes to coverage, and I don't especially want them to know I can override the script. My doctor has stated flat out that she will fight for whatever we think I need, but I need to be careful how I go about it. So I think I will email her and see if I can arrange to go in and have Kaiser or Apria change the settings on Monday. It means a couple more nights with the high pressure but seems safer overall. Any suggestions on how I can get them to use the settings you've proposed?

I don't have heart failure so that's not an issue. And Kaiser apparently only uses Resmed so that's ok, too.
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#6
RE: new to bipap, lots of central apneas
I would ask them.

Just state, I was thinking of changing my settings to xxxx for these reasons yyyyy, what do you think, or should we wait a bit and see what happens? If he agrees just say I can change them to what you agree with right now, is that ok?

I would also ask him if his goal is to justify an ASV machine in your future, if yes ask how can we accelerate the process?

Positional is not just sleeping on your back. That is consistent and as such easy enough to manage. Frequently, all too frequently, we see chin tucking which can and does occur in all positions, especially side sleeping where there is a tendency to curl up in a fetal position. There are hints of this happening but it is not serious, your centrals are, as you know, serious.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: new to bipap, lots of central apneas
Oh, you are right -- I do find myself tucking my chin and try to correct it when I notice it. Any tips on how to prevent it?

Regarding changing the settings -- I was paranoid about letting her know that I could change them myself as it seems like the medical profession in general is not big on letting patients be self-sufficient. But she is generally very open and seems to respect my intelligence, so probably worth a try.
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#8
RE: new to bipap, lots of central apneas
With the chin tucking, we suggest a loose fitting soft cervical collar or an anti-snoring collar and much better than a traditional chin strap.
We don't see enough of this to recommend you do it now.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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New to Apnea? Helpful tips to ensure success
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: new to bipap, lots of central apneas
So I went ahead and changed the settings (forgiveness over permission Cool ) to:
Max IPAP 12
Min EPAP 4
PS 3

It was a more comfortable night breathing-wise, and the numbers improved a chunk. OAs and hypopneas dropped to almost nothing, AHI was 13.04, nearly all centrals, flow limitation a little better. So it seems like I'm going in the right direction, but the question seems to be, can I tweak the settings enough to get rid of the centrals without bringing back the other events. I wish that the Resmed tracked RERAs as those were the bulk of my events in studies -- can I extrapolate them from flow limitations?

These are the screenshots from last night:
   
   

Should I tweak some more, or let these ride a night or two?
(btw, the big leak was when I removed the mask to pee without turning off the machine)
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#10
RE: new to bipap, lots of central apneas
This is an article we put together outlining justification for getting an ASV machine.

Justifying_Advanced_PAP_Machines

What you are showing in your latest charts is exactly what you need to qualify for ASV.  


  • Titrate to minimize OSA, that is the obstructive AHI to less than 5 per hour. This typically is raising EPAP or pressure until obstructive AHI is less than 5 per hour, we expect this to make the Central and Complex Apnea worse thus failing the current treatment
  • Record the central apnea-central hypopnea index (CAHI) (looking for greater than or equal to 5 per hour and greater than 50% of total AHI)
  • Document the presence of at least one of the following symptoms: These symptoms are specifically noted by Medicare. These are key symptoms that we look for by asking "How do you feel?". Do not limit your answers to the following and do not fabricate the answers.

  1. Sleepiness, "How do you feel?"

  2. Awakening short of breath, "How do you feel?"

  3. Difficulty initiating or maintaining sleep, "How do you feel?"

  4. Frequent awakenings, or "How do you feel?"

  5. Nonrestorative sleep, "How do you feel?" Nonrestorative sleep is defined as the subjective feeling that sleep has been insufficiently refreshing

  6. Snoring, Can be documented on Sleepyhead

  7. Witnessed apneas Most of us have this one with our significant others
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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