Progressive sleep apnea?

I was diagnosed with obstructive sleep apnea about a year ago and been on CPAP for that amount of time.

During regular visits the RTs have told me I had mild sleep apnea and that my CPAP (software) results are good (with an occasional muffed day or two-per-month). And of course there have been times I was congested and all bets were off.

I recently see a pulmonologist and sleep apnea expert. He inspects the same data and tells me I’ve been going downhill; probably have Emergent Central Apnea; and I’m going to need “an advanced machine called a BIPAP ASV” to optimally treat my apnea.

I’m kinda shocked. To be honest, I don’t believe it.

Q1) Is sleep apnea like afib? Is it a (negatively) progressive condition? (Even if it is, the rate of change I'm hearing—all over the first year—seems rather phenomenal.)

Q2) I have the data the RTs and pulmonologist saw. Where in that data do you suggest this amazing difference of opinion can be found? Where should I look, and what should I look for?

I recomend you dowload a copy of the new version 0.9.5 SleepyHead software and load it on your computer.

You can get help here learning to read and understand the reports generated by the software. It will probably provide much more detail then what you have been given.

The RTs probably only look at complience data, did you use the machine every night for at least 4 hours? You already know the answer there without their help or any type report.

The doctors may have looked at the Encore Pro software reports which give them moderate detail if they bother to look at it. They may only be looking at the daily averages and trend reports, which is how they know you are not gaining ground in your battle with SA.

Whith the SH software on your own computer you can look at minute by minute graphs of what is happening. This can empower you to work with your doctors on any neccessary adjustments to your therapy.

After 3 years on APAP I was also movedto an ASV machine to improve my therapy. I was the one monitoring my results and insisting on seeing a qualified sleep doctor. I am about 7 months into the ASV treatment and my stats have improved and I am getting used to te new machine. It is different.

I have version 0.9.3. I'll upgrade.

I noticed from another post that there is an EncorePro about. Is EncorePro available?

I know everyone says Sleepyhead runs circles around Encore. From what I see I'm more impressed by Sleepyhead.

However I have been using Encore because that is what is used by my health care folk and I think it will be easier to relate to them if I used it. (I have EncoreLite. Not the Pro version.)

There is no reason you can't use both and compare your results.
It only takes a few minutes to load your data in each and glance at your reports.

There will be days you may spend hours pouring over the details, but when things are going well a quick glance at the statistics and a few graphs and you know you are good to go or maybe need some help.

Could you post some representative nights and your overall stats so we can see what your sleep doc may be seeing that the RT didn't?

AfibApnea wrote:I was diagnosed with obstructive sleep apnea about a year ago and been on CPAP for that amount of time.

During regular visits the RTs have told me I had mild sleep apnea and that my CPAP (software) results are good (with an occasional muffed day or two-per-month). And of course there have been times I was congested and all bets were off.

I recently see a pulmonologist and sleep apnea expert. He inspects the same data and tells me I’ve been going downhill; probably have Emergent Central Apnea; and I’m going to need “an advanced machine called a BIPAP ASV” to optimally treat my apnea.

I’m kinda shocked. To be honest, I don’t believe it.

Q1) Is sleep apnea like afib? Is it a (negatively) progressive condition? (Even if it is, the rate of change I'm hearing—all over the first year—seems rather phenomenal.)

I am kind of suspicious that sleep apnea gets better our worse along with our over all health. Which is chicken and which is egg will probably not be sorted out soon.

Relying on “standard care” xPAP to deal with your sleep apnea will likely result in a downward health trend (slower than without xPAP but...).

In my experience treating sleep apnea with well managed CPAP (data looked at several times a week and responded to when problems occur – e.g. EERS [1] to deal with emergent centrals), along with the pursuit of an active lifestyle as well as learning to eat well and a bit of TCM has resulted in being able to use half the pressure (which also tends to drastically reduce emergent centrals in my case).

Now if I had used CPAP “flying blind” and not done the other good things I think that – well – I likely would not be here. My OSA at sleep study was very severed with extremely low oxygen desaturations. What do look to be “centrals” emerged along with post traumatic stress from a severe assault and robbery.

Simply I believe that if you count on “standard care” to move you toward health I do believe you will be disappointed. But I have found you can find improved health.

AfibApnea wrote:Q2) I have the data the RTs and pulmonologist saw. Where in that data do you suggest this amazing difference of opinion can be found? Where should I look, and what should I look for?

Well since your doctor talked about emergent centrals (i.e. complex sleep apnea (CompSAS)) you might look for times when you use more air (a wider flow waveform likely with a ragged look) with pauses occurring during those times of unstable breathing.

Even the people here do not seem to be able to discern unstable breathing with resultant central apnea in the data downloads. It is almost as if there is a layer of denial around the subject being a second layer above ignorance. I am not shocked that your RT did not find it.

I am glad that your sleep doctor did. But then he has expensive machines to sell.

I have come to believe that emergent problems most likely relate to changes in arousal threshold and breathing control loop gain. Both are affected by the amount of stress in the life I know from my own experience. And they are also affected by the pursuit of an active lifestyle, eating well, and TCM along with good stress control meditation.

I think that both arousal threshold and loop gain could be related to a too low or too high vitamin D3 level. Where I live we get no UVB from the Sun from about August to April. Vitamin D levels drop all that time.

Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health.

It would probably be wise to check your vitamin D3 levels. See “The Vitamin D Council” for assay details.

Talk with your doctors about [1,2].

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

Where do I start?

I’m fighting this two-(related)pronged health attack of afib and sleep apnea. The last thing in the world I want to do is be totally preoccupied with either or both.

But, of course, with a piece of technology (CPAP) in my hands generating data, I, at one time, felt compelled to see what I could do with all the data it generated daily. Pugsy’s posts convinced me, to my benefit, to adopt a more laid back attitude toward this machine that had invaded my life. If the AHI isn’t going bonkers; and there are no tidal wave leaks in the mask, and I feel OK (incidentally, that nebulous thing called “feeling OK” seems to be the only determinant I can employ to gauge my response to afib drugs) then, for the most part I was handling my apnea as best I could. I think this is what Todzo calls “standard care xPAP” (pse correct me if I’m wrong).

Well since your doctor talked about emergent centrals (i.e. complex sleep apnea (CompSAS)) you might look for times when you use more air (a wider flow waveform likely with a ragged look) with pauses occurring during those times of unstable breathing.

So…

I’ll go look into the data and see if I can recognize this. (I’ll probably have more questions about this.)
I’ll go back into taking daily D3 (how many units/day?).

But I’m a bit alarmed by the statement:

I am glad that your sleep doctor did. But then he has expensive machines to sell.

Because I know the BPAP machine will be big bucks, and I’m concerned that this is just the beginning…
Does this mean that with intelligent use of the CPAP machine I should be able to forgo having to invest in progressively more expensive machines?

Also, (again) is EncorePro available? (By the way, am I correct in assuming that no matter what machine I have to get that the machine in question will generate data that Sleepyhead and Encore will read?)

AfibApnea wrote:Where do I start?

I’m fighting this two-(related)pronged health attack of afib and sleep apnea. The last thing in the world I want to do is be totally preoccupied with either or both.

Indeed, you need to keep stress levels down to reasonable if at all possible.

AfibApnea wrote:But, of course, with a piece of technology (CPAP) in my hands generating data, I, at one time, felt compelled to see what I could do with all the data it generated daily. Pugsy’s posts convinced me, to my benefit, to adopt a more laid back attitude toward this machine that had invaded my life. If the AHI isn’t going bonkers; and there are no tidal wave leaks in the mask, and I feel OK (incidentally, that nebulous thing called “feeling OK” seems to be the only determinant I can employ to gauge my response to afib drugs) then, for the most part I was handling my apnea as best I could. I think this is what Todzo calls “standard care xPAP” (pse correct me if I’m wrong).

You are aware of and using your xPAP data. You are not flying blind. You are way ahead of “standard care”.

With continued interest as you are showing the gap between what you are doing and “standard care” will widen.

AfibApnea wrote:

Todzo wrote:Well since your doctor talked about emergent centrals (i.e. complex sleep apnea (CompSAS)) you might look for times when you use more air (a wider flow waveform likely with a ragged look) with pauses occurring during those times of unstable breathing.

So…

I’ll go look into the data and see if I can recognize this. (I’ll probably have more questions about this.)

What happens with hypocapnic central apnea is that you breath enough to remove enough carbon dioxide from your system that your body notices and stops breathing to let the levels catch up. However during all this the excessive respiratory effort will likely breach the arousal threshold and the arousal process will release stress hormones and fracture sleep.

So you note a time where the flow waveform is “not so wide” and pretty consistent. That is probably normal sleep. Then you note a time when the flow waveform widens, you should also see the minute volume go up, and then a pause, followed by at least as much but probably even higher volume breathing.

The process tends to be progressive (more periods of over breathing and likely worse as the night progresses perhaps waning after 3 a.m.).

AfibApnea wrote:I’ll go back into taking daily D3 (how many units/day?).

We all use and absorb vitamin D3 at different rates. As well any sun we get produces it rather efficiently. So the only way to know if you are within the useful range is to measure as mentioned previously.

AfibApnea wrote:But I’m a bit alarmed by the statement:

Todzo wrote:I am glad that your sleep doctor did. But then he has expensive machines to sell.

Because I know the BPAP machine will be big bucks, and I’m concerned that this is just the beginning…
Does this mean that with intelligent use of the CPAP machine I should be able to forgo having to invest in progressively more expensive machines?

I have found this to be true. I started with CPAP at 12 cm/H2O – over several years was using CPAP at 15 cm/H2O – was having emergent centrals but learned to control them with EERS – learned to move better and eat better and that some TCM and relaxing meditation would allow me to use the machine at 7.5 cm/H2O happy!

AfibApnea wrote:Also, (again) is EncorePro available? (By the way, am I correct in assuming that no matter what machine I have to get that the machine in question will generate data that Sleepyhead and Encore will read?)

I do not know. I will let the many other good people here guide you with this.

I was told the same thing back at the end of Feb. I have. Resmed s9 vpap auto now. It was a little weird to get used to but I can't believe how much better my numbers are and mostly how much better I feel.

Do you monitor your numbers with sleepyhead rescan etc. it really opens your eyes to what is going on

What is EncoreLite? That SleepMapper thing? Or EncoreBasic?
Don't let the "Pro" thing make you think that it offers something that "Basic" does not offer because it doesn't. The main difference between Pro and Basics (besides the headaches for dealing with Pro) is the SQL server database thing Pro uses...Basic does not use the SQL server thing so that frequent install issue is avoided. Plus Basic doesn't come with the password log in ID stuff that can be messed up and cause Pro to lock up and then you get to reinstall Pro (another one of those headaches I mentioned).

The actual reports that Basic offers is identical to the reports that Pro offers.

The drawback to Basic now is it won't install on Windows 8.xxx but I know how to make it work by bypassing the installer.
Can't do that with Pro. There may be a Basic version that will install on Win 8.xxx but I don't have access to it.

Check your private messages. We can get you fixed up with some sort of Encore product that offers detailed data (if you don't already have it) but it depends on what operating system is on your computer as to which installs easiest.

So despite the "basic" in the version...there's nothing basic about EncoreBasic in terms of reporting. It all about ease of install and use and lack of potential headaches.

The treated CAI is the critical piece of data for determining whether you might have Emergent Central Apnea (also known as Complex Sleep Apnea or CompSA.

So that's the piece of data that you really need to be looking at. And, to piggyback on what Pugsy said: By EncoreLite do you mean Encore Basic or SleepMapper?

If you mean SleepMapper, all you see is the unbroken down AHI data and you really need to look at the data in Encore Basic/Pro or SleepyHead. With Encore Basic you see the full AHI data broken down into the CAI, OAI, and HI.

What has your AHI been like? And if you use Encore Basic, what has the CAI been like?

As for your specific questions:

Q1) Is sleep apnea like afib? Is it a (negatively) progressive condition? (Even if it is, the rate of change I'm hearing—all over the first year—seems rather phenomenal.)

Obstructive sleep apnea can get worse with time (and no PAPing). But if your OSA was getting worse AND your pressure needs were changing, it would be the OAI and HI that would get worse, not the CAI.

But Complex Sleep Apnea or Emergent Central Sleep Apnea is a different can of worms. It's a different medical condition that became evident (or possibly developed) after you started PAP therapy. And because it's a different medical problem, it requires a different (PAP) approach for treating it---hence the doc's mentioning an ASV machine, which is designed to treat central apneas as well as obstructive apneas.

For what it's worth, the medical literature typically says about 10-15% of new PAPers wind up developing clinically significant problems with central apneas after starting PAP therapy; this is usually called Complex Sleep Apnea (CompSA). And the severity of the OSA has no correlation with the risk of developing CompSA, but the pressure needed to control the OSA may be correlated (somewhat) with the risk of developing CompSA after starting CPAP. However, patients with certain types of heart disease (including afib) are at a potentially higher risk of having clincially significant problems with emergent centrals because those patients are much more likely to have clincially significant period breathing patterns, including a pattern called Chenye-Stokes Respiration (CSR). And in CSR, there is often a central apnea or a central hypopnea at the nadir of each waxing/waning breathing cycle. And that could be what your pulmonologist is talking about when he's talking about Emergent Central Apnea.

Q2) I have the data the RTs and pulmonologist saw. Where in that data do you suggest this amazing difference of opinion can be found? Where should I look, and what should I look for?

As I said earlier, the first critical piece of data to look at is the CAI. If that's going up and it regularly over 5, then central or complex sleep apnea is indeed a real possibility.

But in light of the fact that you also have afib, there's another thing the pulmonologist might be looking at in the Encore report that the RT may have ignored: Periodic Breathing. PB can be associated with afib, and if your Encore report is showing a lot of PB going on in the detailed data, then that might be why the pulmonologist is worried about Emergent Central Apnea.

Here's the thing about the PB. It can be totally insignificant---if it appears now and then and doesn't make up more than a small percentage of the night. Or it can be very signficant---if the patient has a history of heart problems AND the PB appears frequently; often makes up 10-15% of the night or more; or there's a high correlation of Hs and/or CAs that get scored during the PB episodes. In patients with certain types of heart disease, there is a particular periodic breathing pattern called Chenye-Stokes Respiration (CSR). In CSR, the nadir of the waxing/waning respiratory pattern often involves a central apnea or a central hypopnea.

So it's possible that what the RT looks at in the data is the overall AHI and maybe a cursory look at the break down in events and the RT says everything is fine because the AHI < 5. And the RT doesn't look at the PB data at all.

And it's possible that the pulmonologist is looking at a subtle increase in the CAI (and possibly the HI) AND the amount of PB that's going on AND has also noticed that many of the events that are scored by your machine are happening in areas that are also flagged as PB.

So here's where I'd start if I were you: Get SleepyHead or Encore Basic (or Pro) and start looking for trends in your data concerning the following things:

• Overall AHI
• CAI
• Periodic Breathing
• Relationship of CAs, OAs, and Hs to the areas also marked as Periodic Breathing. If most of your Hs are in areas scored as PB, there's a chance those Hs are central in nature rather than obstructive. If many of your OAs are in areas scorec as PB, there's a chance those OAs are either misscored CAs or mixed apneas rather than plain old OAs.

So it would really help us help you if you'd post a couple of sample nights of data----one from a really bad night and one or two from a much more typical night would be useful.

AfibApnea wrote: Also, (again) is EncorePro available? (By the way, am I correct in assuming that no matter what machine I have to get that the machine in question will generate data that Sleepyhead and Encore will read?)

PM pugsy and she can set you up with where you can get Encore Pro right now.

But be aware: Encore Pro will not show you any more data than Encore Basic does. It will show you a lot more data than the on-line SleepMapper tool.

Todzo wrote:

AfibApnea wrote:Q2) I have the data the RTs and pulmonologist saw. Where in that data do you suggest this amazing difference of opinion can be found? Where should I look, and what should I look for?

Well since your doctor talked about emergent centrals (i.e. complex sleep apnea (CompSAS)) you might look for times when you use more air (a wider flow waveform likely with a ragged look) with pauses occurring during those times of unstable breathing.

Even the people here do not seem to be able to discern unstable breathing with resultant central apnea in the data downloads. It is almost as if there is a layer of denial around the subject being a second layer above ignorance. I am not shocked that your RT did not find it.

If the RT and the doc are looking at Encore reports, then they are NOT looking at the wave flow data at all: The standard Encore Detailed Data report does NOT include wave flow data. And so there's no way someone looking at an Encore Detailed Data report can see "a wider flow waveform likely with a ragged look". Now, it's true that Encore Pro will save one or two wave flow charts each time the data is downloaded. But looking at the wave flow in Encore requires clicking on a separate (small) icon, and (unlike ResScan or SleepyHead) the wave flow data is static---it is shown in one time scale over several pages and there is no way to zoom in or out to get a feel for whether a particular chunk of wave flow is substantially more ragged than other parts of the wave flow. And I'd be real surprised if the RT had ever checked any patient's Encore data downloaded wave flow data; it's simply way to difficult to exam the saved wave flow data from inside Encore on a routine basis.

Moreover Encore Pro does NOT show any of the following respiratory related data for plain old CPAPs, APAPs, BiPAPs, and BiPAP Autos: Respiratory rate, tidal volume, minute ventilation, inspiration time, and expiration time. These all show up in SleepyHead because they can be calculated from the (raw) wave flow data, but for whatever reason, Resprionics has chosen to NOT display those numbers in Encore Pro. But it is this kind of data that can be critical in finding out whether unstable breathing might be an issue and if it is an issue, when the unstable breathing might be happening.

Hence an RT is not likely to find any evidence of unstable breathing patterns by carefully looking at the data in an Encore Pro Detailed Data report simply because the kind of data needed to detect unstable breathing patterns are NOT part of an Encore Pro Detailed Data report.

In other words, it is unreasonable to expect an RT to see something in the Encore data that suggests unstable breathing when the data needed to detect unstable breathing is not present in the data the professional Encore Pro software displays.

As to why the pulmonologist may be picking up on the potential for complex sleep apnea or other sorts of emergent central apnea problems: First the pulmonologist may be much more familiar with the patient's full medical history, including the history of afib. And the doc may be much more aware of the the connections between afib and central apnea problems than the RT. And, if there are a lot of CAs, Hs, and OAs being scored during PB episodes, perhaps, the doc is more aware of the significance of these events being scored inside PB episodes in an afib patient than the RT is. Or perhaps the pulmonologist has had a chance to go through all the data (including the wave form) that was recorded on the CPAP titration test and saw something in it that raised some flags.

So much stuff…(And I thought my heart going bonkers was the big problem…)

I took the falling asleep with CPAP poll. Seems I was one of the majority in that “I adapted right away to a few weeks” and part of the minority in that “I don’t think it will ever feel natural to me”.

CPAP had been a joy to start. Initially, it was like a breath of fresh air. Now it’s a nightmare.

As soon as I don the unit and put my head down my nostrils, previously clear, start to clog. Soon I am breathing in through one of them and out through my nose (or at best in and out through one of them with an occasional “realign” outbreath through the mouth). I haven’t looked at my results because I don’t have any evenings I can feel proud of to measure against (“proud of” means had a decent sleep). Fifteen minutes of standing up and both nostrils are clear and in working condition (but who's going to believe that?). I’m being told all this awful stuff about my apnea condition worsening and new equipment in the horizon (I should start counting $s to get to sleep.) when what I believe is really going on is just a stuffy nose and maybe something older folk have had for centuries a bit of insomnia. My partner suggests propping myself up into a semi-erect sleeping posture but that is extremely uncomfortable to me (most comfortable is horizontally on my side the head (on a pillow) perpendicular to the shoulder)—and anyway, if we could all just fall asleep while standing up none of us would have sleep apnea!

Although on the worse nights it’s equally difficult for me to breath when I throw off the equipment, for the most part it’s a relief to sleep naturally and not to have air shoved through my system. Incidentally, after getting little sleep last night I slept for three hours this afternoon (forced myself to wake up because if I don’t I won’t be able to get to sleep tonight) with the equipment and it was just like the old days.

(And, oh yes, there’s the prospect of not going anywhere without my equipment (forget about carry on luggage) and camping with a set of batteries strapped to my back.)

I’m hoping that the sleep study I’m scheduled to take in a few weeks will answer some questions…

Does your nose get blocked once the machine's on when you lie down, or beforehand? If it happens when the machine's on, try lowering your humidity levels (if not turn it off altogether) for a couple of nights because it definitely can cause congestion in people, including myself, particularly if you live in a relatively humid place to begin with.

Also, I would experiment with different sleep positions - i.e. on your back provokes more events, so try sleeping on your side for a couple of nights (if necessary, use some kind of bolster behind you to keep yourself from flipping back) and see how you do that way... makes a big difference to many of us.

I would also want to know if the doctor has a stake in the company he's sending you to for a bipap - that's not meant to be as cynical as it sounds, just a heads up re some doctors actually having money in certain companies or DME's. Don't let this be a red herring, but just a little thing to find out about if you can.