Read what Dr. Barry Krakow, author of Sound Sleep, Sound Mind: 7 Keys to Sleeping through the Night, has to say about my new book, Totally CPAP. This is Part 5 of a multi-part in-depth, critical review. This is taken from his blog. Read Part 1, Part 2 Part 3, Part 4, Part 5, Part 6, Part 7, Part 8, and Part 9.
Continuing with our review of Totally CPAP, written by Dr. Steven Park, this next section discusses implementing a program for CPAP therapy success. Dr. Park has developed a very interesting seven-step, seven-day program to help someone integrate all the major instructions from the book. His goal is to enhance your first week of efforts to use the PAP machine, although as you will read below, the focus is more on the seven steps and not actually seven consecutive days. And, he begins quite rightly with the question, “Where do I even start?”
His first step is all about “Education and Goal Setting.” He believes individuals should start with a sleep journal to track various data points such as how much you are sleeping with the mask, how you feel the morning after and related themes connecting CPAP effects to your sleep. Obviously, this step involves more than just one night or day, but the idea behind it is to capture data to provide feedback to create realistic expectations and appropriate goals.
I’m not a big fan of sleep diaries/journals, although they certainly have their place in treating insomnia. And, I certainly appreciate Dr. Park’s perspective here and believe this approach will work for a certain segment of CPAP attempters, particularly those who tend to be well-organized and function in an orderly, rational way when approaching tasks. My concern is that an extremely large proportion of CPAP attempters do not react rationally to PAP therapy. Instead, many people are highly reactive to it, exhibiting an almost exclusively emotional response. Now, when you imagine all the possible emotional experiences associated with PAP therapy, there is no question fear, anxiety, guilt, embarrassment, and shame could individually or in combination thwart any efforts to use the device. In the worst case, the emotions converge into a traumatizing, impossible to forget adverse experience after which many patients drop out immediately, never to revisit PAP following the very first encounter.
Which brings us to Dr. Park’s second step, “Practice, Practice, Practice,” which I believe is the best first step for a sizeable number of patients. Here, Dr. Park and I agree that a hierarchical desensitization approach is optimal for many patients, but many DME programs may not be set up to accommodate patients. Specifically, he writes about the hypothetical scenario where a patient could receive just the mask first and practice wearing it in various settings throughout the day to deal with this issue straightaway before the person ever attempts to experience pressurized air coming through the mask. Practically, a person could fill their prescription for the mask, tubes, and PAP device, but simply work on the mask issues first.
My only objection to the instructions is the notion a person could fall asleep with the mask on when it’s not hooked up to the machine. I see the idea behind it, because if a person could fall asleep with the mask on, it may give them confidence the process is progressing well. The problem arises when you might have a breathing event once sleeping, since no pressurized air is flowing; then, you wake up gasping for breath with a mask stuck on your face. Such a scenario would not only be traumatizing, but it also connects the wrong dots in which the individual would experience the mask as somehow triggering the breathing event. Thus, I would never recommend someone falling asleep with a mask on, unless they want to sit upright in an easy chair and doze off briefly.
In step three “Apply Pressure,” Dr. Park brings up some excellent experiential points when you start using the pressurized airflow. Not only does he want you to learn to distract yourself from the sensations, he also wants you to experience some of the side-effects of PAP so you won’t be surprised by them in the middle of the night. I really like his idea to intentionally open your mouth as well as intentionally move the mask around so you experience the sensations associated with leak, that is, leaks through mouth breathing or leaks through the mask itself. These steps are sound ideas to make you aware of some of the major barriers to successful PAP use.
A key point in this step is the problem of anxiety or claustrophobic tendencies when breathing out against pressurized air. As you know from our work, these side-effects are unacceptable, which is our rationale for switching patients to bilevel modes as soon as possible. Dr. Park’s comments suggest that a certain number of patients will report these experiences, but he expects these side-effects will abate if the patient proceeds slowly. We do not find such outcomes to be so common, but we accept that others might presume we give up on CPAP too quickly. Nonetheless, I believe patients should be informed about bilevel up front so they can request a quick comparison while in the sleep lab or at the DME, after which I would predict the vast majority would choose dual pressure (BPAP) over fixed pressure (CPAP).
Step four is where Dr. Park has his patients begin using CPAP to sleep. I want to reiterate here that while Dr. Park and I have different opinions on aspects of his first three steps, the overarching theme of his initial steps are exceptionally well-crafted, because they are all about effective preparation. So many people feel as if PAP therapy is thrown at them not only in chaotic fashion, but worse they feel the “use it or lose it” stress right from the get-go. Dr. Park’s system, like some of the strategies of Classic SleepCare, encourages you to slow down and learn about the process and put your toe in the water and try to feel what’s going on before you jump in the deep end of the pool. Regrettably, so many sleep professionals do not offer this approach, which is why I want to single out Dr. Park’s wisdom and commend him for integrating his approach into a book where PAP users will learn that slow and steady wins the race.
This section on “Sleeping with CPAP” is succinct and focuses on two main points. First, did you notice any problems using the device? If so, then track them for future discussions with sleep professionals, or ideally see if you have enough information and skill to solve them yourself. I like his recommendation to leave the mask on when you must get up at night to use the bathroom, but I would add the caution you might want to practice walking back and forth twice, that is, once with the lights on and once with the lights off to determine how safely you can navigate the trip. Some full-face masks clearly interfere with your line of sight; moreover, if you are sleeping with another person, you may not be able to turn on the lights in the middle of the night.
His second point is about your ratings of the sleep experience and any side-effects from using it, for example taking the mask off in your sleep, waking with a dry mouth, and most importantly how well did you sleep. Many of these factors require immediate attention because their persistence may be so aggravating you quit using the device. For example, dry mouth can become quite exasperating, and the solution is not to drink more water, but often means you’re going to need to try a chinstrap or a variant to hold your mouth closed. Yet, lots of people refuse to use a chinstrap, or if they are motivated to pursue it, they may discover lengthy delays in trying to get their sleep doctor to write the prescription and send it to the DME, after which there might be further delays if the DME cannot readily dispense what’s needed. Such a scenario would demonstrate the classic negative conditioning influences that emerge when PAP experiences are unpleasant or disturbing. Would you want to keep trying your CPAP device for a week or two while you wait for the chinstrap? All the while waking up with a dry mouth that’s so problematic you are beginning to develop sores inside your oral cavity? Or, should you stop using CPAP even though you were beginning to experience some clear-cut improvements in the quality of your sleep?
As you can imagine, a risk-rewards interplay drives most decision-making in this process. In the worst case, however, the dry mouth means you’re mouth breathing and therefore a sizeable leak is occurring that diminishes the necessary pressurized air. As a result, this leak allows apneas and hypopneas and flow limitations to return from the lack of air pressure. In other words, not only do you experience a dry mouth, but your sleep remains fragmented and of poor quality. We would not expect this patient to continue using the device while waiting for the chinstrap. But, what if the patient doesn’t recognize the connection between all these factors? In fact, this lack of knowledge occurs frequently, thus setting up patients for failure, because no one may have connected the dots for the patient so he or she could solve the problem immediately.
In the best-case example, the sleep quality is improving no matter what the side-effects, so the patient remains highly motivated to maintain the momentum. Later at follow-up, which could occur 30 to 90 days later, the patient is reporting various gains from continued use of CPAP, but he or she also now has the chance to discuss the side-effects in the context of real progress being made. When these side-effects are effectively managed, further gains are achieved.
Which brings us to Dr. Park’s fifth step for “Troubleshooting.” This section is very short, because Dr. Park wants you to refer to the Part II of his book, chapters four through eight, which provide an enormous amount of troubleshooting information, and which will now make even more sense as you have begun your experience with CPAP. The most important and powerful statement in this section is the following, “Communicate with your DME or sleep physician ASAP.” Truer words were never spoken. Basically, my variation on this theme is to inform patients, “If something’s wrong, then something’s wrong.” You are not supposed to feel pain or side-effects or discomfort, even though there might be some unpleasant sensations in the early adaptation. Nonetheless, I tell my patients at my sleep clinic in New Mexico to be finicky, because no one will ever adapt to PAP therapy if it hurts or causes consistent periods of discomfort. You are not going to adapt to this pain or discomfort, so why give it more than one or two nights to determine? This problem must be fixed ASAP.
Among the patients who struggle more with the process, I may have to give them a bit more information that they may not enjoy hearing, but which can at least enlighten them enough to know why things aren’t going well or might take longer than anticipated. The monologue goes something like this:
“You appear to be suffering from at least five factors that are going to interfere with your getting a good response to PAP. In no particular order, you cannot get the mask to seal well, you are mouth breathing, psychologically you have not adapted yet to the foreign and sometimes threatening sensations of pressurized air, you haven’t really embraced the idea of PAP yet, because you are still suffering some embarrassment issues about having to use it. Compounding all these factors, we cannot be certain yet whether you are suffering an independent leg movement disorder or not.”
Undoubtedly, all this information cannot be given to certain patients who would be overwhelmed. On the other hand, a fair proportion of patients appreciate knowing that their sleep professionals, technologists and doctors truly understand the barriers they face.
In Dr. Park’s sixth step, “Modify and Try Again” he is mostly reiterating how important it is to continue troubleshooting, because there are so many little tweaks that might be needed. By paying attention and solving each of these problems, things should continue to improve on a nightly basis. A major emphasis here, which I strongly endorse, is the need to reevaluate whether you’ve got the right mask or not. Unfortunately, there has been a great deal of flak targeting full face masks, but in reality, a huge proportion of patients are ultimately going to need to switch to the FFM for numerous reasons, one of which Dr. Park points out regarding any sort of nasal breathing difficulties.
He also mentions the importance of returning to the care of a sleep technologist where you might be able to undergo a desensitization program. He also mentions our PAP-NAP procedure, which is available at some sleep centers around the country. At this point, we would add the use of the laboratory for a retitration study, including our REPAP protocol, because so many patients just cannot get over the hump of the PAP experience itself. They not only need more coaching, but more importantly they need more experience using PAP under the skilled direction of a technologist where the troubleshooting is literally nonstop for your entire study.
In Dr. Park’s seventh step, “CPAP Success,” he makes a few points I might disagree with, but again his overarching approach to the problem of CPAP adaptation appears much more comprehensive and therefore likely to be successful than most efforts I have seen written about in other books, research articles or blogs. When he remarks that most people will get the hang of things in that first week, I am not sure whether he is talking about his own personal experience with his clinical population or whether he is making a prediction about what will transpire if you follow his steps. In our clinical and research experience, we believe one of the two largest problems leading to early dropouts are that CPAP is the wrong device for nearly all the patients who fail CPAP, and they should have been switched to BPAP or other more sophisticated technology within one or two weeks of their initial struggle with CPAP.
The second largest obstacle relates to the first: when someone is not given the chance to use an advanced PAP mode such as BPAP, ABPAP or ASV, their chances continue to dwindle for long-term adaptation and regular use. At my sleep center, we have repeatedly conducted quality assurance statistics, and I am pleased to say that on every occasion where we looked at 100 consecutive patients who filled their PAP prescription, that is, got a device and started using it, 85% to 92% were using the device 6 months later. Ever since changing my system to regularly prescribe our patients ABPAP and ASV more than 98% of the time, we have conducted this in-house evaluation and arrived at the same results each time.
Notwithstanding, Dr. Park makes the corollary observation that, “don’t think it’s [a good response] going to last forever.” He delves into this phenomenon in several ways including whether your device and equipment are being properly cleaned, whether you’ve gained weight, whether other intercurrent health factors are affecting your sleep, and of course the process of aging, which can also worsen your sleep apnea. He points out the absolute necessity for vigilance about your sleep quality. Are your results being maintained at the level of your most optimal benefits, whenever you achieved this benchmark? Are you suddenly noticing a bit more fatigue in the afternoons; are you a bit more irritable in the evening and snapping at your spouse or children? Or are you suffering an increase in trips to the bathroom at night?
How you monitor this information is a big deal. Dr. Park quite rightly recommends his sleep journaling ideas, which are a smart strategy for individuals who might let things slide. On the other hand, the larger problem arises among some individuals with sleep problems as well as many medical professionals outside of sleep medicine, both of whom tend to still disrespect the value of sleep. In such circumstances, you may not naturally harken back to recall what things were like before you used PAP therapy and your regular doctors may not remind you of your past symptoms. If so, you may then point your finger at something else to explain the slippage in your results, like a medication side-effect, or you are stressed out, or you are squabbling with your boss. All of these factors are valid reasons for worse sleep at some level, but the very first item on this agenda could be to check whether your response to PAP is fading, which more often than not is the primary troublemaker.
Obviously, reconnecting with your DME or sleep center resources is critical in these times as well as working with online support groups, such as this blog site at Classic SleepCare. Online support may prove pivotal for many patients, because you can lay out precise details in print about your struggles with PAP, after which several commenters who might be more experienced than you will delve into a range of solutions. However, even with all this support, professional or otherwise, you still have to realize that identification of a problem must begin with you, which means you must develop reliable metrics to assess your experiences over the course of months and years.
Unfortunately, one of the leading metrics that far too many patients want to rely on is the data coming from their machines. Sadly, much of this data is misleading, inaccurate, or downright distracting from what’s going on in your actual sleep period. Take for example the AHI numbers. Suppose you have seen a decrease down to say 2 events per hours (AHI =2). Would you be satisfied? We teach our patients to respond, “heck, no.” Why wouldn’t an AHI of 2 be a good thing? It is good, but it’s not predictive. If you continue to show an AHI of 2, you are probably continuing to suffer a lot more flow limitations, but you might never see these events until you go into your sleep center or call/see your DME to capture a full data download. Thus, you could see an AHI of 2 but no matter how you feel, you might think to yourself that “this must be as good as it gets.”
Another common misconception would be leak values. Many manufacturers use symbols like smiley faces to let you know you had a good night with low or no meaningful leak. I cannot count the number of times the smiley face was giving the wrong information to the patient, because unequivocally, all leaks not related to natural ventilation of CO2 is a bad leak. In contrast, PAP machines are often calibrated in some ways to allow for a certain level of leak with the understanding the machine somehow compensates for this problem. In our experience, this compensation does not lead to an optimal response. How do we know this point to be true? Easy. We have witnessed more than 1000 patients whose leak was NOT zero (yes, not big fat 0…we’re not kidding) but instead suffered leaks ranging from 4 to 100 liters of air per minute. In nearly all these cases, when we could work the system to bring the leak down to 0 or let’s say less than 2, the patient always felt better, even if the starting leak was in the 4 to 10 range, which many sleep professionals for some reason think is acceptable. We cannot guarantee every patient can attain zero leak, but we strive for it and encourage patients to strive for it too, because all the evidence points to their receiving a better response with no leak whatsoever.
I would like to mention sometimes I can register 0 leak for months on end and other times the leak runs between 2 and 8 liters per minute. There is no question in my mind that zero leak correlates with a better night of sleep.
This wraps up Dr. Park’s ‘seven steps program’ in Chapter 9, from which I believe many CPAP users will benefit. In his final chapter of the book, which I hope to review next, he pulls together several areas to help individuals with poor results as well as those who might need to consider different options beyond PAP.