Challenges of Diagnosing Complex/Central/Mixed Sleep Apnea

I think improvements at sleep labs happen all the time.

The human involvement is much of what makes it the gold standard, though.

And good robots are still expensive.

If all the data gathered at a lab could be gathered at home safely, reliably, cheaply, that would be a good thing. Sure. But a human would still have to watch the tape and read the squigglies to keep from getting sued or whatever.

The pros will always vote for covering their own, uh, assets, when it comes to reserving diagnostics for themselves, if for no other reason than to prevent patients from self-diagnosing "medical conditions," and the system is such that the pros are the customers right now. That has to be fixed before the patient will start coming truly first.

I applaud the efforts of the early PAP gods to get docs and manufacturers involved. But it is time to move on, in my opinion. Right now the system is that more money is spent testing, documenting, and doing paper work than the treatment itself actually costs--which is STUPID, financially speaking, since response to treatment would probably be a better diagnostic tool in the first place, if the insurance would jump on board with that concept--which they might if they understood just how much cheaper the machines could be without all that hassle. Right now the system is "Hey, let's spend several thousand dollars figuring out if the guy just might feel better using a $200 machine that is harmless for the non-apneic to try! Good idea!"

That said, I think a lab titration with a human present is probably the most valuable part of the process to a patient, since that screens for the limb dance and parasomnias and all the sleep stuff that goes with, or can get hidden by, the breathing problem.

I am very comfortable holding to all my opinions that constantly contradict each other in my head. Well, at least as long as the arguing factions in my mind can keep the noise down and don't make me spill my beer.

Pugsy wrote:You know it wasn't even until the most recent advancement in technology that we even got the added central data to our software reports from our cpap/apap machines. Prior to the advancements we had reports that really only lumped everything in the obstructive apnea or hyponea basket. 3 years ago when I first started therapy only the high dollar BiPap ASV machines would flag a central. We had no idea if we were having centrals or not...real or not.

Pugsy, could you show some data from your M Series Auto that was the "top of the line" just a few years ago when I fought so hard to get it from the DME? Sometimes ignorance is bliss!

DoriC wrote:could you show some data from your M Series Auto that was the "top of the line" just a few years ago

I don't have anything other than what I had on Photobucket because some dummy (who shall remain nameless) stupidly tried to combine the Encore Pro M series data with PR S1 data and totally ignored the messages that such an endeavor was not the thing to do and all my M series data went POOF.
So all I have is a few of the detailed reports that had been stored on Photobucket.
M Series...no wave form...no distinction as to centrals or clear airway. Have since discovered that with the M series and older machines that clear airways got lumped into the obstructive category.
Of course no RERA but I don't think that was a great loss. The reports haven't really changed all that much..just a little more additional data to evaluate...or drive a person crazy.

My two cents; not worth a nickle...

jnk wrote:...That said, I think a lab titration with a human present is probably the most valuable part of the process to a patient, since that screens for the limb dance and parasomnias and all the sleep stuff that goes with, or can get hidden by, the breathing problem...

ChicagoGranny wrote:...I don't place much value on the accurate scoring of PSGs for most patients. For most patients the importance of a diagnosis is only to know that he has SDB. This should be done utilizing a minimum of resources as resources are limited. The resources should be focused on effective treatment...

suzjohnson wrote:...It's alarming to read that two techs can score a sleep study differently...

jnk - I agree COMPLETELY. For me the lab was vital (even though they erred...).
ChicagoGranny - I would argue your comment except that you caveat with " For most patients..."
suzjohnson - no kiddin'

I've known for over fifteen years that I had "Apnea". Didn't understand the ramifications of leaving it untreated until a cardiac problem came to light a year ago. The cardiologist insisted I be evaluated for SDB. The first lab visit was a half night sleep, and after the tech saw and AHI of 85+, a half night titration. A visit to the Neurologist (sleep specialist) a week later revealed that the technician had incorrectly evaluated the titration. The doctor related that a more experienced tech would have noted that the CPAP application resolved most of the apneas and hypopneas but resulted in a huge spike in the number of "central" apneas. A follow-on study resulted in a diagnosis of "Complex" apnea and I was prescribed ASV treatment. My point here is that even a dedicated sleep lab and/or trained technician can incorrectly interpret a study.
I fear that with our equipment available as OTC I would/could have purchased a CPAP device and made my problems severely worse by "fiddling about". This assuming I have limited knowledge of anything more than the definition of Apnea... (which leads to my next bit)

suzjohnson wrote:...The number of people that follow their data must be WAY in the minority. This became astonishingly clear to me when the RT at the DME I use, said I was the only one of all of his several hundred patients that track their data or had even shown an interest in doing so, ...

+10 - I (and I believe I can say we) have taken a real interest in our problem, diagnosis and treatment. We have attempted to educate ourselves and become an active part of our treatment; most folks simply do not. Those who don't/won't/can't place themselves in real jeopardy should they begin tweaking dials and pushing buttons. "Danger, Will Robinson"


Thank goodness (and our host) for this board and others like it where those that have a desire to understand these "disorders" can exchange information and experience. I began treatment this January and feel MUCH better. I have learned more than I thought possible from the contributors here. THANK YOU one and all.

Henry Jr wrote:... I (and I believe I can say we) have taken a real interest in our problem, diagnosis and treatment. We have attempted to educate ourselves and become an active part of our treatment; most folks simply do not. Those who don't/won't/can't place themselves in real jeopardy should they begin tweaking dials and pushing buttons. "Danger, Will Robinson" ...

By the way, did you know that some researchers actually found that patients who are taught to self titrate their CPAP therapy can be as effective as a sleep laboratory?

... this study demonstrates that self-titration of CPAP in patients with OSA is as efficacious as manual titration in a sleep laboratory, with similar subjective and objective outcomes, and CPAP compliance.

For the fully study, see:

http://ajrccm.atsjournals.org/content/167/5/716.full

In short, is it for everyone? No! But some of us can definitely be quite effective if we take hold of our therapy and attempt to gain the best possible results. If your doctor questions it, then use this study as your evidence. I'm fortunate that my doctor is actually excited to work with a patient who takes the time to understand his therapy and get the most out of it.

JohnBFisher wrote:...For the fully study, see: http://ajrccm.atsjournals.org/content/167/5/716.full
In short, is it for everyone? No! But some of us can definitely be quite effective if we take hold of our therapy and attempt to gain the best possible results. If your doctor questions it, then use this study as your evidence. I'm fortunate that my doctor is actually excited to work with a patient who takes the time to understand his therapy and get the most out of it.

Very interesting study. THANKS for the reference. I especially like this from the conclusions: "...Resources currently allocated to manual in-laboratory CPAP titration might be better spent on specific attention to patient education and support rather than pressure titration. A treatment algorithm that focuses on such ambulatory patient education and support rather than in-laboratory CPAP titration may realize significant efficiencies in the management of OSA without loss of treatment efficacy...."
Reinforces ChicagoGranny's previous comment.
Only qualifier I note is not specifically stated: the study discusses OSA only. There is no reference in this study to any instances of "Central" or "Complex" apnea in the study population.

Remarkably short training session: "A technologist provided 30-minutes of instruction on CPAP treatment for OSA, facial/nasal CPAP appliances, and symptoms that would suggest an incorrect CPAP setting before randomization. Patients were shown how to adjust the CPAP ..." Too cool that this was effective.
Can't count the number of times I've seen someone post here that very little information and even less machine operation instruction is what they received. I was fortunate in that my neurologist and his RTs were very infomative and whetted my appetite to learn more; the DME folks were much less help...

When we had a visit with our Primary Dr last month, he had a first year Resident with him doing rounds for a month. His specialty is going to be Pulmonology. Our Dr really put me on the spot when he asked me to explain to the Resident how I know how to adjust settings and read data,etc. The young man was amazed and never heard of a patient who actually knew how cpap machines worked and knew how to self-titrate and wanted to know what training I had, what courses I took, etc. Of course you know my answer...cpaptalk taught me everything I know. I told him there were many more of us out there doing the same thing because the medical community was letting us down. He kind of shrugged when I told him I only saw the Pulmon once for our first and only 15minute followup and he was more interested in MY explanation of the reports I brought him and how I learned to analyze them. I think he may change his specialty!!

jnk wrote:Anything called a "sleep test" really should, uh, measure SLEEP, shouldn't it, and not just breathing? That's why the lab/center tests are the gold standard and are considered by many to also be the most cost-effective way to address sleep complaints.

Your average sleep doc, as a general rule, couldn't care less about treatment-machine data. He gives a diagnosis, he prescribes a pressure, then he's pretty much done. He leaves the details to the DME RT to work out. If we want to use the data for trending to find our most comfortable and most effective pressure, we can. That doesn't mean it needs to be done by every patient or for every patient. It is an option.

Ignoring the data collected by a CPAP machine because it's not as good as an in-lab PSG is like ignoring the results of a blood pressure reading because it's not as a $2000 nuclear stress test.

Hi Padster!

Until now we have not had the technical capability to find out how people really sleep, night after night, in their own home in their own bed. If you are talking about those with things such as complex and mixed apnea the need for in home testing not limited to a single night or week of is much greater because the persons nervous system is so sensitive.

Even using something a crude as an Auto-PAP the in home testing with Auto-PAP "titration" has proven itself a better way. I really believe the days of the "golden standard" super expensive single night in lab studies are limited indeed. I think they never gave a good view of “the average night” anyway (sleeping in a lab was never an average night for me anyways).

While I may have "jumped the gun" on the "perfusion graphs available" pulse oximeters - I am happy to see the iBrain coming into view, apparently with sleep study use well in the development sites. So perhaps in a few years I will have flow data from my PAP, pulse oximetery from my pulse oximeter, brainwave analysis from my iBrain (true arousal data!!) along with audio and video (some nights) from recorders easily available now.

The whole diagnosis and treatment process needs to move into the home and be much less time limited (testing needs to be done over days, weeks, perhaps months to really see what is going on) for the sake of the person being treated. Data needs to be constantly gathered during PAP use, analyzed daily, and feedback provided to the person to note problems as they occur and lifestyle changes that would be wise. I believe that to do less than this is medically irresponsible, simply, and do indeed challenge the medical community to prove me wrong if they can by doing long term in home sleep testing research trials. This has many fewer technical obstacles than it used to and amounts to basic research never done that now needs to be done.

We really know little about what “the average sleep night” might look like and have even less idea of what extreme nights might look like and how they would effect health. We really do need to change that!

FWIW

Todzo

Todzo wrote:We really know little about what “the average sleep night” might look like...

What you mean "we", White Man?

A "Normal" night looks like

archangle wrote: . . . the results of a blood pressure reading . . .

Excellent example!

When problematic BP, as measured at a doc's office, does not respond to lifestyle changes or treatment, the doc may ask the patient to begin keeping records of readings taken at home over a period of time, since the home BP monitors (unlike home-treatment-machine counts of AHI as compared to the real AHI at a lab) can be just as accurate as the readings taken in the office and will accurately show daily variations at different times of the day--if the pressure is taken properly. However, for someone without doc-office documented BP problems, asking that patient to do that all day every day would obviously be considered overkill and totally unnnecessary.

It is much the same with OSA AHI. If a patient continues to have complaints, optimizing PAP pressure may be a useful thing to do and home-machine trending info can help with that. But my point is that we have to remember that the majority of PAP-using OSA patients get a test, get handed a machine at the prescribed pressure, never have problem one, and never have a reason to end up at this site looking for ideas to make it work for them. It already does. Spending the time to tweak their pressure would be a waste of time for a doc or an RT or the patient himself. Lab titrations are done to titrate for worst-case scenario--supine REM in a strange environment. The idea is to prescribe a pressure that will be sufficient in that circumstance so that what happens in the patient's own bed, or in a motel, or anywhere else, is covered.

Getting back to the well-chosen example of monitoring BP, I am sure that any person without BP problems who wishes to go out and buy a BP monitor for fun is free to do so. And, for that matter, if he decides to work to get his averaged resting BP down from 120/80 to 118/79, just to see if that makes him feel better, he is more than welcome to do so. The process of trying will probably be good for him, as far as that goes, if he does it in a healthy way, and keeping track is a good reminder for anyone. But he can't expect his family doc to be excited about a reduction of that small a magnitude, since the doc would not consider that to be something clinically significant according to the way he was trained based on evidence-based medicine.

I am all for patient-tweaked pressures; I tweak myself. But that doesn't mean I think it is for everyone or that it should be standard practice for all PAP users. It is only useful for pappers with residual problems and indications that pressure-tweaking could be productive. Other than that, improvements in sleep (as in, more than just the breathing of sleep) are more likely to come from good sleep hygiene, I believe--which, as is the case with blood pressure in general, should not be ignored, and those habits ARE all about the patient in the patient's own bed night after night.

In my opinion.

A doctor should consider all the available data.

Especially the data that's cheap to obtain, requires little effort from the patient, and gets taken every single night.

All you have to do is look a the data. If the data looks good, you have a large degree of confidence the treatment is eliminating the apnea without any further expensive testing.

If it shows a severe AHI, you probably need to do something right away. At least look at the data and see if you can see something and adjust the therapy. If that doesn't work, consider more expensive, intrusive, and inconvenient investigation.

If it shows mild problems, use your judgment. At least look for problems and maybe make some minor tweaks. Ask a few more questions of the patient.

Also, don't forget that the data shows number of hours of sleep/usage, sleep patterns, etc. All in objective form automatically recorded without counting on the patient's memory, honesty, and your effort to write it down.

DoriC wrote:Pugsy, could you show some data from your M Series Auto that was the "top of the line" just a few years ago when I fought so hard to get it from the DME? Sometimes ignorance is bliss!

The really great thing about data from the previous generation M series and similar machines is that if it said you weren't having apneas, you weren't having apneas. There wasn't much room for doubt. You knew you had an effective treatment pressure.

If you did have events, you didn't get as much breakdown other than the number of events and when they happened.

I think the M series also did not give you any indication of the duration of the event. That's a very useful thing in my opinion.

If you still have problems despite CPAP, the newer machines give you a lot more info about what particular type of problem and clues about how to treat it.

Newer machines also give you better clues about things like RERA and flow limitations. They might be a little better about weeding out borderline events in the "grey" zone.

The airflow waveforms on newer machines also tell you a lot if you know how to read them.

I probably still have some encore data available from my old M series Auto machine on the old computer if you want to see some particular details.

I have M Series data stored too, just don't know how to post it here so I asked Pugsy to for the benefit of those who might be interested in seeing how basic the data was just a few short years ago and how far we've come in the last few years. Actually, I think the M Series was a good start for a newbie who's dealing with so many unknowns and has so much to absorb. All I had to worry about was finding the right mask, the right pressure, AHI, Leaks, sleep hygiene and looking for improvements in his health. Today I see so many overwhelmed newbies who are also dealing with the same issues but who are on overload overthinking their data, trying to analyze every blip they see, worrying about every detail and not keeping their eye on the prize which is to get some restful sleep and see improvements in how they feel. Don't get me wrong, I love my S9 and PR and when our therapy went down the drain recently I was glad I had all the information at hand to make adjustments but I don't know what I would have done with it as a newbie.

The 1% and the 99%.

The 1% posting in this thread have some excellent technology available.

The 99% -

- eat a very poor diet
- are physically inactive
- will not see a sleep doc
- "will not wear a mask to bed"
- would not even come close to considering interpreting simple CPAP data

With my friends I may reduce my activity to a short simple paragraph -

"You have more than one symptom of sleep apnea. Sleep apnea is a devastating condition. You need a consultation with a sleep doc. If you are prescribed CPAP it would be wise to let me help you pick out the appropriate machine. Period. End. Goodbye."

Sorry, but I am just coming off a week where a friend's husband died unexpectedly during the night. He was slim and athletic but he snored heavily. Friend kept telling him she could hear him stop breathing in his sleep but he refused to do anything about it.

Now my friend will live maybe 30 more years without her life mate. Sad. Avoidable.

So glad my DH started using CPAP years ago. He is a one-percenter and taught me also.