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 3 of a multi-part in-depth, critical review. This is taken from his blog. Read Part 1 and Part 2.
In chapter 4, Dr. Park returns his discussion to one of my favorite topics in managing CPAP patients, and he sums it up quite nicely and in bold no less: It’s your mindset. For a book that’s only a little over 100 pages long, it is inspiring how often Dr. Park returns to this topic to help people realize they hold the power within themselves to determine whether or not they will succeed with PAP. So many other books, research papers, and lay articles incessantly talk about conventional wisdoms such as find a comfortable mask, be persistent, start with lower pressures, use a humidifier, and don’t give up. Now, all these suggestions are worthy, and Dr. Park addresses them as well, but Totally CPAP is different because it goes to the heart of the matter, which in a word is: YOU! And, ultimately the way you choose to think and feel about CPAP.
Even more to the point, he immediately brings up the emotional challenges anyone might face when confronted with the diagnosis of obstructive sleep apnea, and I was extremely impressed that he used the word “traumatic” to describe how someone may feel about learning of this diagnosis, which clearly is going to initiate a life-changing experience and perspective. It is remarkable how many sleep doctors do not use the word traumatic or the term we use, “traumatizing,” in describing patient responses to either the diagnosis of the condition or its treatment with PAP therapy. We have used this terminology for a long time because we work with so many psychiatric patients with OSA who report having been traumatized by previous unsuccessful encounters with CPAP. Yet, in the actual scientific literature of sleep medicine, where you would expect to see the latest and greatest discoveries to help patients overcome barriers to PAP, the conceptualization of a traumatizing experience with OSA as a diagnosis or regarding CPAP as a treatment is almost never mentioned directly and rarely alluded to indirectly. Despite the facts that millions of people have failed or rejected CPAP, the majority of these individuals who might eventually return to a sleep center often take years to build up the courage to retry.
Next, to help the reader work through this process Dr. Park cites the work of Mike Moran at CPAPtalk.com who apparently coined the term: “Seven Stages of CPAP.”
To briefly summarize, there is the initial denial of the condition followed by the eventual realization that something must be wrong with your sleep if others are commenting on your scary breathing observed during the night. Then, the individual completes the diagnostic testing phase, after which he or she may often navigate through the healthcare maze that not infrequently leads to many rounds of frustration in the quest to make CPAP work.
Last, there are the related areas of immersion, ownership and inflation. With immersion, your commitment level is on the rise, and so you make the effort with diligence and dedication to leave no stone unturned. You probably bug your sleep center staff and the DME for support and advice. You have probably found a friend, family or a neighbor using CPAP who provides motivation as well as pearls for success. You are also looking on the internet for advice, not to mention reading Dr. Park’s Totally CPAP book. For such individuals, the immersion process means you are tapping into your curiosity and can-do spirit to problem solve and trouble shoot, and for most CPAP users this phase is often key because it leads directly to success. In particular, success most commonly means that your use of the device has provided you with tangible benefits such as more consolidated sleep at night, less trips to the bathroom or more energy during the day.
Ownership refers to the end result of all your immersion activities. Once you learn all the ins and outs and dos and don’ts of PAP therapy, it becomes very clear you have mastered nearly everything needed to maintain regular use of the device. Some of the more simplistic and yet crucial things include finding the right mask or masks for your facial structure, gaining confidence in the fit and recognizing when new cushions are needed or when mask liners must be used. Additional steps include experimenting with additional tools like nasal dilator strips, chinstraps and even eye coverings to minimize any air blowing in your eyes. A huge insight is learning to know when your pressurized air settings feel too low or too high, because contrary to the conventional wisdom, sleep apnea patients pressures may change frequently, especially in the first couple years of use and thereafter whenever you suffer inter-current illnesses that affect your health, or you gain or lose weight, or you happen to age as you get older!
Inflation is the final phase, but in my vocabulary, it’s an odd choice of words, because its most common usage in society means to see prices rise without a commensurate rise in value, such as real estate prices rising despite housing property not undergoing appreciable improvements. I believe the idea expressed here though is still relevant as the author is indicating an increasing degree of both use and benefit from PAP therapy. The author is attempting to express how individuals may have an initial encounter of great change in sleep with exceptionally noticeable benefits, but then things settle into a more consistent pattern of benefit without a “Wow” factor emerging every morning or during the daytime. Though I understand this pattern, the problem I see in its conceptualization is the equally common phenomenon in sleep apnea patients of the “ceiling effect,” something that we have posted about on this site a few times here and here.
In brief, many sleep apnea patients, if not most, have nothing to compare their response to other than how they felt before starting treatment. They have no way of knowing what an optimal response to PAP should be or what it would feel like. For these reasons, once you obtain a consistent response to PAP, it is more common to believe your experience must be as good as it gets.
Unfortunately, this perspective is rarely accurate, because clinically and physiologically it is nearly impossible to attain an optimal response to PAP therapy in the first few months of use. Rather, it is much more likely you hit a plateau and make the wrong assumption by believing the plateau is the same as an optimal response. In our clinical experience, most sleep apnea or UARS patients require anywhere from 6 to 18 months to sort through a variety of treatment steps, after which they come close to or actually achieve optimal results.
In fact, many years ago a study was published (regrettably, I cannot find the citation in PubMed) that examined patients’ daytime sleepiness problems over a longer period of time, that is, years later. The most remarkable finding was that even after four years of CPAP, patients were still reporting further improvements in their problematic sleepiness, undoubtedly by gaining better and better responses to their PAP device. In our clinic, this perspective is the norm in how we relate to our patients, but you might be surprised to know how many patients are satisfied with their plateau and choose to stick with what they’ve achieved instead of asking themselves should they push for more.
The best example of this entire phenomenon deals with nocturia, trips to the bathroom at night. As you know from previous posts where we talk about OSA impact on the kidneys (www.nocturiacures.com), sleep breathing disorders are a leading cause of trips to the bathroom, because of the strain OSA/UARS places on the heart, which in turn leads the cardiac muscle to release its own natural diuretic (atrial natriuretic peptide). Obviously, the diuretic leads to more work for the kidneys throughout the night, leading to more urine production and then more trips to the bathroom. Yet, OSA/UARS patients do not necessarily consider this symptom as a factor to evaluate in their response to PAP treatment. We discuss nocturia episodes with virtually all patients to monitor how they are responding. And, when their trips to the bathroom are not decreasing as might be expected, we inform patients they are not receiving optimal results, but you may not be surprised to know that a great many patients are unwilling to pursue further efforts until a much later date, because they are more interested in reaping their current gains that feel satisfying and satisfactory at this point in time.
The second half of Chapter 4 involves an excellent summary and tips on the 10 most common objectionable things in trying to learn to use PAP therapy. As we go through the list, I will point out aspects of Dr. Park’s insights that so many patients must attend to, and on occasion, I will add a pearl from our own work.
- “Can’t imagine wearing a mask to sleep.” Once again, Dr. Park scores a bulls-eye as he quickly reminds the reader the most obvious connection a patient might know about regarding a mask worn on the face; namely, someone on their deathbed in a hospital. This insight is very astute, because even though nowadays many people know someone else using CPAP, it is probably more common to have seen a friend or loved one in the hospital suffering from a serious illness and wearing an oxygen mask. As before, Dr. Park is keenly aware of the emotional negativity that may arise with PAP therapy. And, he notes this perspective can be reversed to the patient’s advantage when they try CPAP and discover that it is “not nearly so bad” as expected. One pearl we often use in our setting is to exclaim that PAP therapy is just the opposite of a death mask as it provides the “breath of life.”
- “Claustrophobia.” Dr. Park makes two key points that often are not broached at many sleep centers. First, desensitization techniques are very successful in treating OSA patients. Interestingly, most people who report claustrophobic symptoms suffer more of what we call claustrophobic-like problems, and these individuals do extremely well with desensitization. Actual claustrophobic patients who have been diagnosed with the condition, often need to work with a trained behavioral specialist. Second, Dr. Park mentions that nasal breathing treatments often facilitate overcoming claustrophobia, but again it is not clear to us how many sleep centers or DMEs inform their patients of the need to open up the nasal passages in this context. One pearl we use is the same phrasing “breath of life,” because the chief complain t of a claustrophobic patient is the feeling of insufficient air. When we explain PAP provides air and does not rob you of air, it seems to move things forward in a positive direction.
- “CPAP is about as romantic as a Darth Vader mask.” Here, Dr. Park uses the example of the benefits that might be gained as using PAP might actually improve libido either directly by actions on sex hormones or indirectly simply by increasing daytime energy levels. Sometimes, with patients demonstrating a good sense of humor, we note that PAP is the ultimate “sex toy” given that actual cases of impotence have reportedly been cured just by treating OSA.
- “Travel issues.” I like Dr. Park’s way of comparing all the electronic gadgets we carry around including a laptop, tablet, phones and more during business or recreational travel, and how he points out that adding a PAP device will make for a better trip because of the human energy it provides to the individual to use all of his or her devices and so much more.
- “Family comparisons.” On this problem, Dr. Park is referring to family members, often younger folks comparing themselves to their parents. If someone younger sees their parents using PAP therapy, a feeling or idea might emerge like, “I don’t want to end up using that machine like my parents.” But, Dr. Park’s comeback slugs it out of the park, because he explains to the younger patient about all the cardiovascular-OSA connections from which their parents suffer. When the younger patient then comprehends the connections between OSA and heart disease, he or she may instantly realize it is the use of PAP that will literally stop them from following in their parents’ footsteps. By the way, this scenario highlights the creativity of Dr. Park’s approach and to my mind shows why he must be an expert clinician when dealing with his patients one on one.
- “Nasal breathing obstruction.” Dr. Park describes several of the tools we use in these instances including nasal hygiene regimens and nasal dilator strips, not to mention specific medications and site-specific surgery in the nose.
- “Finances.” Although insurance coverage is a great thing for PAP devices and supplies, the blossoming market in used or lower-priced equipment is expanding exponentially. As I mentioned earlier, I appreciate Dr. Park’s referencing the cash-based changes in healthcare systems, and here he reminds individuals that available resources can help someone find a PAP machine and supplies at surprisingly affordable prices. My experiences with Classic Sleepcare as well as with secondwindcpap.com have been very satisfying for several of my patients in these circumstances.
- “Noise pollution.” Dr. Park informs the reader of the relatively low decibels (25 to 30 range) compared to double or triple that level when it comes to loud snoring. Many spouses report that PAP serves as a white noise machine. However, in our clinical experience it is the pitch of the sound not the volume that sometimes proves most irritating, and earplugs may be needed for the spouse or the patient.
- “Forgetting to apply the mask.” As Dr. Park highlights, when someone is gaining a good to great response to PAP, they are not likely to forget to put on the mask at night before bedtime. But as he astutely infers, there are a group of patients whose results may be mixed or their motivation may be ambivalent. Putting these responses together will lead some people to “forget” to use the mask, but in actuality what’s more likely to be occurring is the patient’s resistance to the whole PAP experience, that is, PAP is proving to be too much of a hassle or the benefits are lackluster. Clearly, when an individual starts waking up in the morning, jumps into the shower and starts singing, “oh, what a beautiful morning,” such a person is not going to forget to put the mask on each night. That said, there are those who need additional coaching, and Dr. Park reports success for some of these individuals when they learn to put the mask on sooner in the evening, perhaps while reading or watching television to overcome their forgetfulness. The only caveat is that the mask should not be connected to the tubing because carbon dioxide might build up. Normally, the pressurized air system and mask ports assist in flushing out carbon dioxide in your exhalation breath when the PAP device is turned on.
- “I don’t like things on my face.” Dr. Park returns to his previous points about avoidance behavior and how important it is for someone to “try it.” We concur, which is why we developed the PAP-NAP so patients can test-drive PAP therapy without all the cumbersome sensors or wires hooked up during the night in the sleep lab.