UARS: A Critical Link to Optimizing PAP Therapy Results

ozij wrote:Mindy, if the Respironics machine lets you set equivalent top and bottom pressures, you may get CPAP treatment with APAP recording.

Hi Ozij,

If I understand the APAP I have, I gather that there is a minimum spread between low and high. Since I've gotten it down to 2 apart, I would surmise that might be the minimum.

Mindy

Snoredog-I'm thinking that the anxiety part of Dr K's post is important. As far as any of the parameters recorded by my Remstar-my treatments is successful. I'm below 1-2 RDI nearly every night. I still have suboptimal sleep and I have been unwilling to present myself as having anxiety-out of fear that care providers might dismiss or minimize ANY symptoms I present. And I minimize my anxiety to myself.

Some Responses.

1. Correct Pressure. Great point. I don't think I've seen one patient in the last 3 years where I was convinced we found the "perfect" pressure on the first titration. At our center, the norm is retitrate patients at least two more times in the first year. And, among my colleagues at the annual sleep society meeting, I hear more sleep docs moving in the same direction.

2.Initial Response Followed by UARS Emergence. This was one of the first clues to the problem of titrations in general and UARS components in particular. Many patients reported this initial great response, lasting a few weeks or months, and then a gradual or sudden deterioration. When they returned to the lab, the pressure needed to be raised to eliminate "new" or "emerging" UARS. I'm of the belief that it is nearly impossible to get a perfect titration the first time, because the body needs to go through many adjustments. Having adjusted, the pressure almost always needs to be raised or lowered. At Stanford, the model in 1993 was full night diagnostic, followed by full night titration, and then retitration 30 days later.

3. Good FL numbers. It's not so much good numbers; it's normalized airflow, because it is not so easy to count UARS events. Still, you can find a way to count flow limitation events, and you certainly want to reduce them as much as possible. There are data from Rapoport's group that suggests that an RDI consisting only of UARS (FLs, RERAs) in the range of 15 to 20 is clinically significant, so a number lower than this level should be and usually is the minimum to shoot for. In our lab, we occasionally get some patients below 5, but it's the lab environment, which I think in and of itself prevents the "perfect" titration.

4. Ideally, zero. Yes, zero is ideal, and we certainly like to see patients approach "normal." Does everyone realize that a normal sleeper's airflow curve is identical to an SDB patient who is getting a great response on PAP Therapy?

5. Snoredog's Frustration. Please forgive me, but you're setting me up to say that the answers to most of your questions are provided in my new book, Sound Sleep, Sound Mind http://www.soundsleepsoundmind.com, so thanks for the plug (Ha! Ha!). However, let me add that if you think you're frustrated about this information not being disseminated, can you imagine how I feel? And, compared to the 2 of us, can you imagine how Dr. Guilleminault feels? It goes all the way back to 1982 when he discovered UARS in children.

As I indicated above, "conventional wisdom" and "consensus medicine" routinely retard the dissemination of information into the sleep medical community. If you haven't read Malcolm Gladwell's The Tipping Point, I think you'll get a big kick out of his perspective on how things stick and then spread.

For example, does everyone realize that "nocturia" will probably overtake "snoring" as the most meaningful marker of SDB and that once the nocturia connection http://www.nocturiacures.com is appreciated by primary care doctors, the diagnosis rate of SDB will shoot through the penthouse.

6. Data Monitoring. Again, I should spell out that you must be very careful of the data you get from these machines; it's much more qualitative than quantitative, in my opinion. The best test is being with a sleep tech that knows how to use a pressure transducer system and knows that it is possible to achieve a rounded or elliptical airflow curve in most people.

7. Ignore the Snore. The real value in snoring is that during the titration, it would usually mean that the inspiratory flow curve is not rounded, so keep increasing pressure to see if it will round. There are exceptions in that there really are cases of primary snoring, but in my opinion they are much less frequent than commonly advertised.

Good night and sleep right!

mindy wrote:

ozij wrote:Mindy, if the Respironics machine lets you set equivalent top and bottom pressures, you may get CPAP treatment with APAP recording.

Hi Ozij,

If I understand the APAP I have, I gather that there is a minimum spread between low and high. Since I've gotten it down to 2 apart, I would surmise that might be the minimum.

Mindy

Ojiz,

Thanks for the info! I'll keep the PB420 in mind

Mindy

Thanks so much Dr K and you have answered the most important questions that I have been searching for answers in the last few years. I just started reading this cpap forum again recently after not following it for a few years and I am so lucky to read this tonight.

Anything else in your book that I should read. Felt quite indebted and should find a way to pay for your wisdom. Just bought 420e and found I have a lot of runs or FL like >20. So far feeling like apap pressure of 6-13cm as cf to 9-11 has not been as good. I was using resmed apap autoset spirit prior and was not able to see the runs or FLs. I have been altering the settings every night for the last 1 week.

Sounding like I should get a bilevel or use staight cpap to eliminate the runs. To now stopping my numerous runs I suspect the 3 possibilities are:

1. Not feeling anxious and able to adapt to a fixed pressure. Certainly a challenge. ?Better than bilevel in eliminating runs and hence snowdog's cpap preference.

2. To consider getting a bilevel.

3. An intermediate machine would be the resmed vantage with the cpap setting of a drop of 3cm pressure

Your article described me exactly and the whole argument is logical. Especially the nocturia bit and I was waking up even 4-5 times at night.


Thank you once again.

Just looked at the bilevel prices.

The PB 425 seemed like a lot cheaper and can do the job well.

You won't get any events data on the 425 reps.
Check the Silverlining demo file.

O.

Amazon was speedy-here is a review based on a quick read. I'm going back to the details of SDT so I can try the techniques.

If you have insomnia or PTSD-Dr Krakow's book is an excellent resource. You will find much new information; and old information presented in more detail or with a new twist. For example, he doesn't just tell you to get rid of your clock because it just makes you worry about time. You get an extended explanation and there is help in overcoming resistance to clock disposal. He calls his approach Sleep Dynamic Therapy or SDT.
About 2/3 of thee book is about insomnia and sleep disturbances following a traumatic event. There are several self-assessment tools and many techniques to help assess problems with sleep and breathing during sleep. Material about the anxiety and SDB connection is well presented. Dr Krakow has a wealth of knowledge and experience in helping people with PTSD and/or anxiety. His approach to these problems is well presented and avoids the idea that he has quick and easy techniques for relief.
There is a great section for those interested in tapering off sleep medication. He does not suggest a lock step tapering over a set time period and gives indicators about when to decrease your dose based on your response, not the calendar.
About 1/3 of the book is focused on people with probable SDB requiring PAP treatment. A significant number of those pages are geared to helping people who are resistant to the idea they may have SDB and have not yet had a sleep study.
Plenty of information on sleep studies, what to look for in a sleep lab, and what to expect at the sleep lab. Reading Dr Krakow’s comments about the follow-up to the diagnostic & titration studies would have been a help to many people here who express frustration with the information they received from their study. There is helpful information about starting treatment and dealing with problems.
The experienced PAPer looking for info and guidance to fine tune treatment won’t find much. That doesn’t mean the information on SDT would not be useful to many.

PS Dr Krakow, do you think you will write a book for experienced PAPers to tweak their treatment?

New Responses

1. Book Review. Wow, Krousseau, what's it going to cost me to have you post that review on Amazon? Thanks much for your great comments. You read fast and hit the nail on the head in nearly everything you said.

You are correct that the book does not appear to be geared toward the advanced PAP user, but I firmly believe that the sections on imagery skills, emotional processing techniques, and the parts on aspiring to normalizing airflow actually can have a great impact on advanced PAP users in ways they may not immediately appreciate.

As you mentioned earlier regarding my comment on anxiety, I think many if not most SDB patients have some degree of anxiety that they have not reckoned with, because I strongly believe that if you have suffered tens of thousands of mini-suffocations in your sleep through the years, there's almost no way that you wouldn't have been influenced to feel some anxiety about the bedroom experience. In sum, I predict we will find that anxiety has a much more dramatic impact on fine-tuning or tweaking our PAP therapy responses, and that's why my section on emotion-focused therapy may prove critical for all types of PAP users, not just those with obvious mental health problems.

2. Advanced Users. The goal is to write a companion guide probably in parts that will go up on the website http://www.sleeptreatment.com sometime next year with some parts functioning like a forum and other sections providing concrete steps in modular form. Ideally, we'll also produce videos that will address hands-on issues in more practical ways.

3. PB 425. It's the device I use, and it's the best travel one on the market due to its size. It also has some very special sensitivity settings on it having to do with the triggering of inspiration and expiration. We now have them in the sleep lab as well, and it's been informative to have our techs tinker with the sensitivity settings, tailoring them to each patient. There are some durability questions about the machines, but my sense is that Puritan Bennett has replaced devices that fail.

4. APAP vs Bilevel. I used APAP for 2 years, 420E, and thought I was getting a great response until I switched to bilevel. As before, it is a shock to the system to create a new "normal" with say new pressures or a new machine, and then some months or years later, try some new device or pressures and discover that there really was another newer and better normal. Can you get a great response to APAP? I think it's possible, but I wonder if there's a way to work with your sleep doc and DME to rent a bilevel for 1 to 2 months and see what happens. However, it still boils down to getting a great bilevel titration in a sleep lab, where the sleep tech understands the objective of rounding the airflow curve on inspiration and expiration.

5. Nocturia. Yes, notwithstanding other medical conditions, it's absolutely amazing how remarkable and meaningful the nocturia angle is. I can't believe how many patients I've seen who reported prostate or bladder problems, drinking too much water at night, diabetes, or medication side-effects, and declared with great certainty that these were the real causes of their bathroom visits. And, yet so many of them saw dramatic reductions or outright elimination of nocturia with PAP therapy.

I tell my patients it is an 80% or better marker of results, that is, my sense is that if you eliminate nocturia, we should be somewhere in the vicinity of close to 80% improvement in SDB, but that of course is a clinical guesstimate. On the other hand, I see maybe just 2% of patients who report that nocturia got better but they still hadn't seen improvement in fatigue or sleepiness.

6. Quantitative Data. Reminder, please be very careful in how you make use of data from these machines. As a human being, you potentially have much greater sensors for figuring out your responses when you develop a very active and accurate "observing self." Then, you will see exactly how to rate your symptoms and how to gauge your responses to treatment. Your own assessment and intuition are often much more reliable than data about runs, etc, in my opinion, although over night sleep studies with good sensors and a great sleep tech often times are more reliable than anything else out there.

krousseau wrote:PS Dr Krakow, do you think you will write a book for experienced PAPers to tweak their treatment?

I second this request. As an example I have found nothing in any sleep apnea book that comes close to the info I have found on this forum. But of course a forum is not organized in any fashion and you have to sift though a lot of noise some times.

I would like to see a book with real technical info for regular users. Things like understanding your sleep study details, self titration, minimizing leaks and hose management, getting the most from PAP software, understanding BiPAP, AutoPAP algorithm comparison, effects of untreated apnea on the body, exhalation relief algorithms, ASV and other less common machines, etc, etc.

Some of us like to understand all of this... There have been many topics over the past year on this board that I thought should be in a book because you never see it anywhere else. Most doctors won't even discuss this stuff with their patients because they either think we are two stupid to understand or they don't know the answers themselves.

BarryKrakowMD wrote:[Reminder, please be very careful in how you make use of data from these machines.

Yes I think a lot of us here realize that. However I believe that some data is a lot better than no data (which many doctors seem to be happy with). If we could all get full PSGs regularly instead we would. Personally I have found the data from machines invaluable for my treatment. Data like leak rate was important in getting CPAP to work in the beginning. Over time Total time in apnea value became a quite reliable predictor of how I had done during the night and almost exactly tracked how I felt (I strongly believe that AHI is a too simple a index and we need something that takes into account the length of each apnea and possibly sleep length, but thats a different discussion)

NFS

The experienced PAPer looking for info and guidance to fine tune treatment won’t find much. That doesn’t mean the information on SDT would not be useful to many.

Yes I did think that the SDT and anxiety info would be useful at any level of PAP experience. And just as an aside. Even if you consider yourself experienced the section of the book related to SDB is worth the read to see if there is anything you "left out"; or have some misperceptions.

And after reading it I decided that it was not just about the numbers-my treatment was not going nearly as well as it had for many months. Called Stanford expecting to get as appt in April or May-but they got me in today.

Dr Krakow thank you for your work on PTSD-I have a close friend with PTSD and the sleep issues are incredible. Got her to have a sleep study-of course no apneas and doc & she were satisfied. When she gets through this exacerbation I hope she will read at least that part of the book and starts to see the connections.

Hi everyone.

Very timely topic for me. I have in front of me a referral on a client which will be denied by Medicare, her primary insurance.

Her sleep physician ordered a REMstar Auto after reviewing her sleep study. The problem is, her overall AHI was only 0.3, elevating to 7.3 events per hour during REM sleep.

The physician states in his recommendation: "No significant OSA observed, however the patient is strongly suspected to have UARS given the frequent arousals. Most of them are associated with snoring. The patient might still potentially benefit from CPAP if all other measures are unsuccessful."

Her history indicates "progressive shortness of breath with CHF of the diastolic disfunction type. The patient has metabolic syndrome with diabetes, obesity, and hypertension and she has a history of atrial fib."

But, NO WAY can we get Medicare to approve XPAP.

Or can we?

Dr. Krakow, any suggestions on wording an appeal to Medicare? I am sure the physician will sign any document that would help get treatment for his patient.

BTW, we do have an indigent program, but this person in no way is indigent. She states that if insurance will not cover, she is not interested. A shame, based on her history, I bet she would see tremendous benefit. Another ticking time bomb

Thank you for the great post. The information presented added immensely to my understanding of the diagnosis and therapy of sleep apnea and SDB. I am surprised, though, at the minimal response to your claims about machine data, considering the discussions that have gone on here regarding previous claims (or warnings) to its use by the patient.
While your claim that sleep studies are quantitative while machine data is qualitative is less insulting than telling us we are not qualified to understand the data, but I believe it is equally specious. In fact it made such little sense to me that I had to make sure I understood the difference between quantitative and qualitative.

Qualitative - involving distinctions based on qualities

Quantitative - expressible as a quantity or relating to or susceptible of measurement

So assuming my understanding is correct, these points:

1. While a sleep study has better equipment and better trained persons monitoring, it is not strictly a quantitative study. The measurement parameters were defined through a qualitative process and as a result (as you yourself claim):

sleep assessment technology for measuring respiration and arousals has a long way to go…

Also the sleep tech makes qualitative observations during the study due to uncontrollable variables (foreign environment, sleep position, mask discomfort. Etc). And how the study is applied involves qualitative judgments such as:

but if the sleep lab doesn’t use the proper respiratory sensors, they will not see it: "what you don't look for, you will not see!"

and

many sleep lab techs do not push forward with the titration at this point (flow limitations), believing that their job is done. Even some proportion of sleep medicine physicians do not mandate that their sleep techs increase pressure for flow limitation

And lastly the person scoring the sleep test makes qualitative decisions based on both the quantitative data and the qualitative observations of the sleep tech.

2. Machine data is not qualitative. It is based on the same medically accepted parameters as the sleep study and provides specific measurements. You can correctly argue that the data is less complete or less accurate but it is quantitative just the same. Now, the process used by patients can be qualitative (this mask is better, these settings will lower my numbers) but the machine data that confirms or denies these assertions is quantitative feedback. And the data is most useful in showing a pattern over time (it is often said a week of tracking is the minimum for each change), which is a method you advocate:

I'm of the belief that it is nearly impossible to get a perfect titration the first time, because the body needs to go through many adjustments. Having adjusted, the pressure almost always needs to be raised or lowered.

3. Self assessment through observation is entirely qualitative and subject to misinterpretation. Not only do other variables affecting sleep (illnesses, stress, diet) make it almost impossible to isolate the effect of the therapy, but the limitations due to lack of perspective and experience dictate that self observation is only one limited aspect of tracking your therapy. You say:

Your own assessment and intuition are often much more reliable than data about runs, etc, in my opinion

But you also say:

…it is a shock to the system to create a new "normal" with say new pressures or a new machine, and then some months or years later, try some new device or pressures and discover that there really was another newer and better normal.

This is one reason why many of us require the quantitative data from the machine to verify or dismiss our qualitative observations.



I know that the industry line is to dismiss the machine data in favor of tritration studies, but after your comments about “consensus medicine” and the influence of insurance companies on diagnosis and treatment, I am surprised you are agreeing to reject a method for the patient to participate in making critical decisions based on their own process. For example, on my follow-up visit to my sleep doctor I took in data charts that showed my auto bipap spent most of the time at the lowest setting during exhales. He decided that the machine was “pushing” the bottom limit and wanted to go lower (a qualitative observation) and suggested lowering the Epap setting. Once I did it certainly went lower than the previous limit, but the pressure proved inadequate and the hypopneas and flow limitations greatly increased (quantitative machine data). Restoring the minimum to the previous setting returned my AHI to acceptable levels.


Quantitative and qualitative are not opposite types of data, but two complementary processes that can be used to achieve a complete understanding. For me, access to the quantitative data from the machine has helped me achieve successful treatment from the beginning nearly six months ago.

Response on DME

The Medicare dilemma is not an easy one to navigate (as you well know). In the situation described there are some immediate problems I see, and I'll list a couple of steps.

1. AHI. It's true that the AHI is all that Medicare wants to see, but if the sleep doc wants to build the case for the patient an RDI is critical to submit as well. If the RDI is greater than 15, then it meets AASM criteria and that carries weight (not a guarantee).

2. Pinning down the UARS diagnosis. It sounds like a UARS diagnosis was not made with advanced respiratory monitoring (as in, "...strongly suspected to have UARS..."). Again, this would be a lot stronger if esophageal manometry, pressure transducer, or EMG intercostal sensors confirmed the UARS diagnosis.

3. Documentation.. More documentation of symptoms is necessary. if the Epworth is high it will help; spelling out in greater detail the heart dysfunction including arrhythmia as well a letter from cardiologist describing difficulties in managing CHF; any history of car accidents should be included, etc.

Now onto some other practical steps, based on the following key point: I have rarely met or spoken with a Medicare medical director who was not sympathetic to the need for a patient to get considered as an exceptional to a rule. These medical directors are doctors, and I have always found them receptive to discussing cases, and even recommending a number of options to move things forward such as:

1. Repeat the diagnostic study only in the supine position. (This is the first thing our local Medicare Medical Director tells us do, so we do it automatically now, if we think there's a reasonable chance of the AHI increasing).

2. Conduct a titration study, and show that SDB resolves, have patient pay out of pocket for a one month trial rental, and if she reports a good response, use that information to demonstrate the need.

3. Definitely call the Regional Medicare medical director to see how much he/she knows about UARS. The sleep doc should not only educate the medical director, but also state that their reading of the scientific literature indicates that this patient has the potential to benefit from PAP therapy. It is very important that the sleep doc impress the medical director with evidence-based knowledge. Unfortunately, there are no studies on UARS and heart disease, but nonetheless, if the UARS yielded an RDI of 15 or greater then it meets AASM criteria, and the Medicare official will hear that piece of information.

I'm not at all suggesting that these steps are a slam dunk. Rather I'm describing a process that takes months/years, and I've gone through it for several years and found that it produces some results and some benefits for my patients, so I believe it is worth the time.

Last, the patient's perspective is not a favorable one in this situation. The notion that the patient will only buy into the program if insurance covers the cost of the machine suggests too much skepticism on the patient's part. In a situation like that I think the sleep doc is at a distinct disadvantage. Ideally, the patient would use nasal hygiene, nasal strips, etc. to see if conservative treatment yielded results that would raise the patient's motivation to try PAP therapy. Then, the patient can also write a letter to the medical director at Medicare describing her initial experiences and why she would like to try PAP therapy. Again, though, if the patient would pay for a one month rental to use PAP (assuming she can afford it), that's an even better step forward if the patient has a good response. Conversely, the patient may have a bad response, because it is more difficult in general for mild to moderate UARS patients to use PAP therapy. And, it might be worth considering a dental device (oral appliance therapy).

Hope to address data comments/questions later tonight or tomorrow.