Progressive sleep apnea?

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

If CPAP once was a joy, then you have had some good experiences with it, even if you are going through hell right now. So hold onto those positive memories and use them as an incentive for using the data recorded by your machine to start figuring out why things have gone downhill.

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).

Pardon me for saying it, but this is a really silly excuse for not looking at your data or results.

If you were getting decent sleep with the machine, the data wouldn't matter. But you're NOT getting decent sleep with the machine. And the data may provide you with some clues about why you're not getting decent sleep AND give you some insight into what kind of things you might need to do in order to get back to where you ARE getting a decent night's sleep most of the time.

Fifteen minutes of standing up and both nostrils are clear and in working condition (but who's going to believe that?).

More people here than you realize have had this problem. As Julie says, sometimes the fix is as simple as turning the humidifier down or off. Or, if you are already using a very low humidifier setting, you may need more humidity to keep the nasal mucosa happy.

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.

All the more reason you need to be looking at your own data. You have a full efficacy data machine. So LOOK at the DATA yourself. If your apnea really is getting worse, it will show up in the data. If not, then the data is your friend and you will be in a position to intelligently question the need for a different machine that may be even harder to get used to.

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!

It takes some work and imagination, but it is possible to sleep in almost any position with a CPAP mask on your face. I'm also a side sleeper with my pillow pretty much in the position you describe. It's no problem with my nasal pillows mask. For folks who have to use a larger mask, sometimes the fix is as simple as draping the mask off the end of the pillow. Or, if they're not too thick, using a CPAP pillow with a cutout for the mask works.

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.

Long daytime naps (particularly without the mask on) are just making it that much harder for you to rein in the CPAP-induced insomnia.

(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.)

True, you need to travel with the equipment. But it does NOT count against your carry on luggage quota if it is in its own bag and clearly marked as necessary medical equipment.

True, camping requires a battery, and that makes backpacking pretty difficult. But camping in campsites that are either drive in or a short walk from the parking lot is not that difficult.

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

In the meantime, start looking at the data that is currently being recorded by your machine. It will help you figure out what questions you want answered. It may also help you understand why the doctor is concerned enough about the situation that he's sending you back to the sleep lab.

The nose starts out fine for a number of breaths. The lower nostril always blocks first. (One of the main reasons I turn to the other side is to give the downside nostril a chance to breathe.) The upper one clogs next. (I’ve tried netti-pot, saline spray, saline gel… My nose feels raw.)

I’m practicing sleeping with a t-shirt on because of the sleep clinic. But one big plus of the t-shirt is I don’t have that constant air flow from the mask against my upper arm (when I breath in! rather than when I breath out, as I would expect—no one has ever explained to me why the mask expels significantly more air on the intake than when I breath against it.)

I dislike using humidity because it gives the air a “heavy” feeling to me. But I like using the humidifier because it makes the machine more silent. So I either use no water (setting all the way off) or with water (setting all the way off).

I hardly ever slept on my back, but some of the best sleeps I've had have been on my back. They would happen on some rare occasion like when I was on a meditation retreat or in some completely stressless situation. But I worked to never sleep on my back (when the local wisdom was that it was bad for you) and so have always slept on my side. I’ve never snored…

I doubt the doctor has a stake in a manufacturer. It would have to be the HMO (Kaiser) and with organizations that big one never knows.

Will the sleep clinic confirm/deny the doctor’s hypothesis or can the information the clinic comes up with be interpreted any way the doctor likes?

AfibApnea wrote:The nose starts out fine for a number of breaths. The lower nostril always blocks first. (One of the main reasons I turn to the other side is to give the downside nostril a chance to breathe.) The upper one clogs next. (I’ve tried netti-pot, saline spray, saline gel… My nose feels raw.)

Remember the meditation retreat. Remember breathing quietly. THAT is how you need to breath while using CPAP and a good state of mind to shoot for while using CPAP.

You might try doing some meditation during the day. Take note of your breathing. Add the machine and match levels (pace and volume).

FWIW eucapnic techniques facilitate my smelling the flowers all spring summer and never needing allergy medications. A stuffy nose is usually the first sign that I am over breathing.

AfibApnea wrote:I’m practicing sleeping with a t-shirt on because of the sleep clinic. But one big plus of the t-shirt is I don’t have that constant air flow from the mask against my upper arm (when I breath in! rather than when I breath out, as I would expect—no one has ever explained to me why the mask expels significantly more air on the intake than when I breath against it.)

If I understand what you are saying that should not be. Vent rate depends on pressure and should remain about the same through the cycle.

You might check your intake filters.

AfibApnea wrote:I dislike using humidity because it gives the air a “heavy” feeling to me. But I like using the humidifier because it makes the machine more silent. So I either use no water (setting all the way off) or with water (setting all the way off).

I use other means to have less noise present at my nose which also blunt the systems tendency to produce a pressure bump at the start of exhale which many with central apnea find difficult.

AfibApnea wrote:I hardly ever slept on my back, but some of the best sleeps I've had have been on my back. They would happen on some rare occasion like when I was on a meditation retreat or in some completely stressless situation. But I worked to never sleep on my back (when the local wisdom was that it was bad for you) and so have always slept on my side.

With my pressure adjusted to the point where obstructions do not occur I too prefer sleeping on my back. Then the weight of the belly become a negative factor in respiratory control system gain and I tend to have more stable breathing.

I apparently do not have tongue muscle issues so no obstructions from that.

AfibApnea wrote: I’ve never snored…

You lucky dog!

AfibApnea wrote:I doubt the doctor has a stake in a manufacturer. It would have to be the HMO (Kaiser) and with organizations that big one never knows.

Will the sleep clinic confirm/deny the doctor’s hypothesis or can the information the clinic comes up with be interpreted any way the doctor likes?

The data from the sleep clinic lab will be analyzed by standard means. How the doctor sees that...

AfibApnea wrote:Will the sleep clinic confirm/deny the doctor’s hypothesis or can the information the clinic comes up with be interpreted any way the doctor likes?

Do you know whether the sleep test will be a titration study? And if so, will you be on straight CPAP (at your current settings) for a certain amount of time? Or will the whole test be an ASV titration study?

You need to know the answers to those questions before you go in for the sleep test. Beacause the answer to your question really depends on what kind of a machine (if any) they plan on having you use.

If the tech has you sleeping with a CPAP at pressures similar to your current pressures for at least part of the night, then the test should confirm/deny the doc's hypothesis. An in lab PSG will accurately detect all the central apneas that occur during the sleep period. If Emergent Central Apnea or Complex Sleep Apnea is a real problem (i.e. if your doc's hypothesis is correct), central apneas should be present in clincally significant numbers when the tech has you using CPAP mode with pressures similar to the pressures you use each night at home. If Emergent Central Apnea is not really an issue, there won't be a significant number of centrals recorded even though the tech has you using CPAP mode.

But if the study is an ASV titration study, you may still not be satisfied with whether the data conclusively confirms your doc's hypothesis or not. With an ASV titration the tech will be responsible for two different kinds of pressure adjustments: The adjustments to the baseline EPAP that is used to control your OSA and also the adjustments to how much additional IPAP you need to keep your breathing stable when (if) you start to have centrals or periodic breathing with (central) hypopneas or apneas during the nadir of the periodic breathing cycle. If the tech is lucky enough to quickly find therapeutic settings for the ASV, then your CAI might be very low for the sleep test simply because the ASV is working at the chosen settings.

Because you are questioning the doc's hypothesis since it is so diametrically opposite of what the RT has been telling you for so long, it is in your interest to find out why the doc suspects Emergent Central Apnea. And by that, I don't mean a vague statement like "I looked at your data in Encore and it looks like you might have Emergent Central Apnea." What I mean is you need to find out exactly which data the doc was looking at when he came up with that hypothesis. Ideally you need a conversation with the doc where he actually shows you the Encore data and explains it: He ought to be able to point to what parts of the data support his hypothesis, both on the long term summary data and on whatever Detailed Data days were included in the report.

It's a pain in the butt to do it, but you really do need to call the sleep doc's office and say that you really need to speak with the doc because you do not understand why he thinks you have Emergent Sleep Apnea and you also don't understand exactly what kind of a sleep test the doc has scheduled. You need to request a call back. If your sleep doc's practice has some kind of a "patient portal" where you can email the doc, I'd strongly suggest signing up for the patient portal and emailing the doc your questions.

The nose starts out fine for a number of breaths. The lower nostril always blocks first. (One of the main reasons I turn to the other side is to give the downside nostril a chance to breathe.) The upper one clogs next. (I’ve tried netti-pot, saline spray, saline gel… My nose feels raw.)

Yep. I'm familiar with that pattern. But for me it's a nasal pattern that long predates CPAP. Any time I would get a nasty head cold OR whenever my seasonal nasal allergies were really acting up, that's exactly what would happen to me. The old "how long can I lay on this side before it feels like the snot in my lower nostril is rock solid and I have to turn over" feeling petty much went away when I started PAPing because my nose likes the filtered air and the additional humidity. But your nose is not my nose, and it's a shame that your nose is not really happy with or without humdity.

An idea: When you were using the heated humidifer were you using it in conjunction with a heated hose?

I hardly ever slept on my back, but some of the best sleeps I've had have been on my back. They would happen on some rare occasion like when I was on a meditation retreat or in some completely stressless situation. But I worked to never sleep on my back (when the local wisdom was that it was bad for you) and so have always slept on my side. I’ve never snored… (emphasis added)

If you have had some good sleeps on your back in the past, you might want to try sleeping on your back with the PAP machine. Yes, conventional wisdom around here is "back sleeping is bad", but the whole point of having a PAP machine is to allow you to sleep in any position that you want to sleep in without having an excessive number of apneas and hypopneas.

So if sleeping on your back is in any way more comfortable than sleeping on your side with the PAP, then just do it and let the machine supply the needed pressure to keep the upper airway open.

Since those "best sleeps" have also happened when your stress has been at a minimum, you might also want to do some work in figuring out how to destress yourself before bed. If meditation helps you to destress, then figure out a way of doing some mediation every day. Use meditation techinques (if possible) when you're in bed with the mask on if you start to get stressed out or if you start worrying or dwelling on anything connected to the whole OSA/CompSA thing.

AfibApnea wrote: I’m practicing sleeping with a t-shirt on because of the sleep clinic. But one big plus of the t-shirt is I don’t have that constant air flow from the mask against my upper arm (when I breath in! rather than when I breath out, as I would expect—no one has ever explained to me why the mask expels significantly more air on the intake than when I breath against it.)

If you were using a BiPAP, the answer would be easy: On the inhalation the pressure is increased and with the additional pressure, the intentional vent rate goes up.

But even though you're not using a BiPAP, a similar explanation may be at work.

First, if you are using A-Flex, there is indeed a (small) increase in pressure at the beginning of the inhalation and you may be noticing the increased air flow through the mask that is part of the increased pressure.

Second, when we inhale, the machine has to increase the airflow into the semi-closed pressurized system so that (a) there's enough air for you to inhale and (b) to maintain pressure in the upper airway when much of the air is now moving towards your lungs (and decreasing the pressure in the upper airway). Hence the machine has to increase the airflow into the system to compensate for the air going out of your upper airway and into your lungs. It does this by increasing the airflow into the system. And any time the machine is blowing more air, there's more air that winds up being vented out through the mask's holes.

For what it's worth, I too hate the feeling of that airflow onto my arms and my chest. I also hate how it bounces off the covers and back into my eyes. In all but the hottest weather I now routinely sleep in my hubby's fleece robe so that I can wrap an extra layer or two around my chest and arms.

robysue wrote:For what it's worth, I too hate the feeling of that airflow onto my arms and my chest. I also hate how it bounces off the covers and back into my eyes. In all but the hottest weather I now routinely sleep in my hubby's fleece robe so that I can wrap an extra layer or two around my chest and arms.

Using the Airfit P10 completely eliminates the airflow. Big difference from the Swift FX.

AfibApnea,

One final thing before I go to bed:

Did you ever get a copy of the full sleep study report with summary graphs for your original diagnostic study and your original CPAP titration study? If not, you need to request copies from your sleep doc. The reports will each be between 3 and 6 pages long. And you should request a copy of the new sleep study's results (together with the summary graphs) as soon as they are available.

When you have the follow up with your sleep doc, ask for him to show you the summary graphs and have him explain what he thinks is going on. Ask specific questions to pin down which parts of the sleep study data he is using to support what he is telling you.

And once you get your hands on the sleep study results and the summary graphs, it may be useful for you to post them here (after blackening out any identifying information). There are folks around here who can tell you more about what all the data and graphs on the sleep study reports actually mean in terms of your apnea.

ems wrote:

robysue wrote:For what it's worth, I too hate the feeling of that airflow onto my arms and my chest. I also hate how it bounces off the covers and back into my eyes. In all but the hottest weather I now routinely sleep in my hubby's fleece robe so that I can wrap an extra layer or two around my chest and arms.

Using the Airfit P10 completely eliminates the airflow. Big difference from the Swift FX.

I'm currently trialing an Airfit P10. Yes, the airflow is substantially less, but it's not completely eliminated. It's about 85-90% eliminated in my opinion. And that's a big plus.

But the P10 is NOT as friendly to squishing my face towards my pillow or my hubby's armpit as the Swift FX is. That hard plastic caddy with the vents that the P10's pillows hook onto is more prone to being dislodged when I'm trying to snuggle into something, and that creates (small) leaks that I don't experience with the FX.

Did you ever get a copy of the full sleep study report with summary graphs for your original diagnostic study and your original CPAP titration study? If not, you need to request copies from your sleep doc. The reports will each be between 3 and 6 pages long. And you should request a copy of the new sleep study's results (together with the summary graphs) as soon as they are available.

I never took a “full sleep study”. After being diagnosed with afib I merely had a (significant) car accident involving falling asleep at the wheel, was told to check for sleep apnea, and then was hooked up to a portable machine (I forget the name) that I took home, along with an oxygen sensor (that went on one of my fingers) and was instructed to activate the machine and wear the O2 sensor and return both. Did so, and found out that the oxygen sensor hadn’t worked. To be on the safe side they decided I had mild sleep apnea, etc.

Ever since then I’ve been trying to get a proper—in house—study. It took a year to see someone "higher up" than an RT, and now I have a study scheduled.

Despite having only a partial report, do you think they had enough information that I should be able to get something useful from this “original diagnostic study”?

AfibApnea wrote: I never took a “full sleep study”. After being diagnosed with afib I merely had a (significant) car accident involving falling asleep at the wheel, was told to check for sleep apnea, and then was hooked up to a portable machine (I forget the name) that I took home, along with an oxygen sensor (that went on one of my fingers) and was instructed to activate the machine and wear the O2 sensor and return both. Did so, and found out that the oxygen sensor hadn’t worked. To be on the safe side they decided I had mild sleep apnea, etc.

Ever since then I’ve been trying to get a proper—in house—study. It took a year to see someone "higher up" than an RT, and now I have a study scheduled.

Despite having only a partial report, do you think they had enough information that I should be able to get something useful from this “original diagnostic study”?

That's really a question for your doc to answer. Although the falling asleep at the wheel is a big symptom of sleep apnea of some sort.

It depends (a lot) on what data the portable machine was able to gather. And keep in mind that not everybody with sleep apnea desaturates when they have events. And another thing: unless the portable machine had some kind of belts to measure breathing effort, there was probably no way for the portable test to clearly distinguish between CAs and OAs. Perhaps the doc is actually worried about the afib causing central sleep apnea (CSA) and he's not real worried about OSA at all.

And how did they arrive at the pressure setting? Did they just give you an APAP for a couple of weeks and then download the data and look at the 90% pressure level???

It sounds to me like you need a diagnostic (or split study) to find out what's really going on in the first place and then a titration study if the diagnostic part indicates there's a problem. On the diagnostic part of the study if there's a problem with CAs caused by the afib (as opposed to CAs caused by PAP), the CAs will show up on the in lab test.

You say you've seen the data the doc and RT were looking at when they gave you very different reports about what was going on PAP-wise. Can you post that data here? It might help us help you sort out what is most likely going on.

Or could you down load SleepyHead and post the overview data for the whole time you've been on PAP and a couple of detailed data screen shots---one from a really bad night and one from a more typical night? That would also help us help you sort out what is going on.

Posting information:

When I insert my card in the reader I'm presented with two text files (last.txt and encore.txt) and a folder named P09etc. That folder contains properties.txt and folders: p0, p1, p2, p3, p4, each containing scads of (e.g., 0000000773.002) numerically named files. I assume this is NOT information you are looking for.

I start up Sleepyhead (V9.3.0) and import all the data. File/Export (as CSV) allows me Quick Range options; and Resolution options (Details, Sessions, Daily). I'm not feeling qualified to pick which is a bad day from what I now view to all be bad (recent) days.

What (Quick Range/Resolution) shall I export? How do I post a .csv (comma separated values) file?

Just do a screen shot of last night or a recent night with at least 5 or more hours of use showing.
Do just the daily detailed for one day. Don't worry about exporting anything. Don't worry about bad vs good for the moment.
We talk about how to do screen shots here...and there are some examples you can see.
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779
Main things
The AHI and breakdown on the left side of the daily detail report
and on the right side
Events graph top right
Flow rate graph
Pressure graph
Leak graph
maybe a couple of others..depending on what the left side information shows

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.

robysue wrote:...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...

...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).

So it is much worse than I thought. Even the doctors cannot find this through the data apparently.

The wide spread in the “literature” of 5% to 15% (20% in a recent study I read) indicates to me simply that they do not know. And so here we see why they do not know!!!

It is certainly hard to find what you cannot even look for!!!!!!!!!!!!

Attached is last night. Last night was not a good night but is typical of what’s happening recently. (A midday nab can be much better, even with CPAP attached. But I can’t make it too long for fear of losing sleep at night…)

Some things went on in this reading that I’ll inform you of later after I get a couple ‘reads’ on the data.

Please don’t do this unless you enjoy it. I’m embarrassed at all of you good people’s time I’ve taken up with my questions.