Sourced from Classic Sleep Care- Increasing Compliance with Advanced PAP Therapy in PTSD Patients
Our co-authored (Krakow, Obando, Ulibarri, McIver) paper on PTSD and PAP compliance which was recently published, provides me with the opportunity to delve more deeply into the nuances of the research paper itself. To my knowledge, this paper represents a milestone in demonstrating (for the first time) that trauma survivors appear to adapt easier and use more consistently advanced PAP devices (e.g. ASV and ABPAP).
There are many aspects of the paper that also relate to OSA/UARS patients in general and not just PTSD patients. As we delve into it, keep in mind the material may be relevant to many mental health patients using PAP therapy as well as those with more classic presentations of sleep apnea. The most difficult aspect in organizing a retrospective chart review of this type (which was the research design for this study) is the need to avoid cherry picking the data that might make something appear more effective than it really is. Moreover, since our study was not with a sophisticated control group, the results only represent what are called “associations,” which is a lower level of evidence in research. Just because lots of people do well with ABPAP or ASV doesn’t necessarily clarify whether ASV or ABPAP are superior modes of treatment when they were not matched against CPAP devices.
One factor in the research, however, that provides a highly relevant degree of credibility to the work is that every patient in the study had tried CPAP in some way, but failed it, found it intolerable, or outright rejected it. Such patients then are said to serve as “historical controls,” because they tried one treatment in the past that clearly did not work for them and then tried a different mode (ASV, ABPAP) that did work. Of course, you can see if you don’t know all the circumstances surrounding their failure with CPAP, then we can’t be certain the comparisons are valid. For example, suppose before visiting our center, all the patients had attempted CPAP at a sleep center that provided very little support for its patients. Or, suppose the CPAP settings were frequently too low or too high, because the sleep laboratory they used did not take the time to fine-tune their pressure/pressures if the patient had been prescribed an Auto-CPAP (APAP) device, an increasingly common practice. In other words, there are so many variables that could alter our perspective about the nature of CPAP failure, we just cannot know reliably if we should assume CPAP could never work in these individuals.
Another major concern about the flow of patients in this sample is the problem of inherent chart reviews where individuals will have missing data or drop out along the way. Which means how could you declare that your findings are fully representative of the points you are trying to establish? In fact, you cannot, and you must report this problem as a major limitation of the study. Let’s look at our published flow chart to understand the problem:
We start out with 229 PTSD patients who marked their PTSD as moderate or worse and who had been tested and shown to suffer from OSA or UARS. The PTSD scale was a well-known, validated survey known as the PSS-SR published by Foa and colleagues a few decades back. Nonetheless, we did not conduct specific PTSD interviews with the patients to confirm the diagnosis. Instead, we selected the higher severity level (moderate or greater) as a more likely indication PTSD was probably a valid diagnosis from the patient’s perspective.
Next, to examine whether or not these patients would do well with a certain type of PAP therapy, they would also need to undergo a titration study and of course be prescribed a PAP device to use at home. This step brings us to a major design flaw in our work. Because 47 people refused to return for a titration study despite receiving clear information of their diagnosed sleep disordered breathing, and another 35 patients who despite undergoing a titration never filled a prescription to attempt PAP at home. You see that we are already down to a new subtotal in our chart review of 147 who completed the additional steps noted above. But that means we had nothing to look at in 82 (47 + 35) patients or nearly one-third of our original sample.
At this point, we don’t throw in the towel because we know that in medical research in particular, it remains a worthy exercise to make observations and analyze data on active treatment-seeking patients. Although we recognize our data would be more generalizable if all 229 patients had followed through, and in reality patients drop out of care all the time and for numerous reasons. They may even still be treatment-seeking for their sleep problems, but they simply were unwilling or unable to proceed with the PAP approach to treatment.
Of the remaining 147 patients who attempted PAP, some early good news was that only 17 patients provided no further data, because 8 got the device but let us know they stopped using it. Another 9 were lost to follow-up, so we have no info on them. That leaves us with 130 patients who were diagnosed with sleep-disordered breathing, filled a prescription for PAP therapy. All these patients appeared to be making some reasonable effort to use the device at home. There were four criteria we applied to make this observation, any one of which was sufficient to declare the patients a current user:
- They had recently received a prescription to renew PAP supplies
- They had a recent clinic appointment where they confirmed they were using PAP
- They returned to the sleep lab for retitrations and confirmed they were using PAP
- They had been in contact with the sleep center staff and confirmed their use
With these categorizations, we would have hoped to provide insights on the 130 PAP users, but here again we have the dilemma of capturing downloads off their machines either through our efforts at the sleep center or from data provided by their DME company. In fact, 28 patients had no such data available in their charts, and even after we searched other resources such as contacting their DME company, we were left with a final sample of 102 PTSD patients who met all criteria. This included the essential data acquired from the machine. Now, you see that we are down to a sample that remains sizable and is considered large as it involves 100 patients or more, but it is less than half of the original working group. Again, these adjustments may bias the research because we do not know what the outcomes were for the other folks in the original sample who did not meet all the requirements. As you can see, these are the major weaknesses of a chart review.
Forging ahead, we can still learn a lot from the 102 PTSD patients, but we must respect the fact that these individuals may be more highly motivated to pursue PAP than others who dropped out of care. Thus, when we come to the point of making our observations about their use of advanced PAP devices, we need to be realistic about how our approach may apply only to PTSD patients who are not only treatment-seeking but perhaps with a higher level of motivation than other PTSD patients.
And this flow of patients now brings us to the main data point of the study, which was 59 of these patients (or 58% of the working sample) were not only using the device, but using at a high level. They were all compliant or adherent, using nearly 7 hours per night on 94% of possible nights. Another 19 patients were called “sub-threshold” compliant because they did not meet the insurance standard of 4 hours per night for 5 nights/week or about 20 hours per week. Nonetheless, many of them were nearly compliant because they average more than 25 hours per week. However, since they might have lower hours on some nights or not used on some nights, they did not meet the insurance convention.
This concept of sub-threshold compliance was a major reason we wanted to conduct the chart review, because we knew that many PTSD patients require a longer interval of time to adapt to a device, even if the device should be an advanced one (more on this idea later). The last group used minimally, averaging a few hours for a couple nights per week. However, as we described later in the discussion section of the paper, the question must be asked, what would make a minimal user become a sub-threshold user, and what would make a sub-threshold user become a compliant user? Clinically, these questions are extremely important to answer, because they directly address some of the difficulties so many sleep centers experience in trying to help patients use their PAP machines.
Just how difficult are these patients to treat? The concept of “difficult to treat” is really hard to define. But we can at least describe some aspects of our sample so you get the big picture. All these patients suffered something approaching severe insomnia. On average, they took more than an hour and a half to fall asleep at bedtime. Once asleep, they would later spend more than two hours awake in bed. The insomnia issues alone are very problematic, since several studies have described how insomnia often interferes with efforts to use PAP therapy.
In addition to the PTSD problem in all the patients, 76% of them suffered from one or more additional anxiety disorders (generalized anxiety, panic attacks, obsessive compulsive disorder), and 82% suffered from one or more depressive disorders (depression or manic-depression). Most of the patients suffered moderately severe sleep apnea with an average AHI of 26 and an RDI of 57. With this information, we know the difference between these two metrics that our patients (on average) suffered many RERAs. The exact mean was 31 events per hour, so many patients suffered from more RERAs than apneas and hypopneas. And, patients with more RERAs may prove more difficult to treat, because when trying to eliminate the RERAs with higher pressures, expiratory pressure intolerance (EPI) is often triggered.
Indeed, this finding of the high RERA index explains in part the finding that 64 of the 102 patients developed the problem of complex sleep apnea, the condition where central apneas emerge as a side-effect to the use of pressurized air. The other 38 patients were on auto-bilevel (ABPAP).
Now that you know some of the major findings in the research, let’s back up to the beginning of the story to see why we elected to conduct this chart review in the first place. Then, we’ll spring forward again to further elaborate on key clinical points in our patients experiences with advanced PAP. Finally, we’ll end with our discussion section where we talk about how patients and sleep professionals might make use of this research and what new research is needed in this area.
The beginning of the story is not exactly what you might expect. Of course, we delved into how difficult it seems to be for PTSD patients to use CPAP therapy. And, we report on one of the most recent studies from the Walter Reed group in Maryland that shows low rates of compliance—around 30%. But, we also cited a much more interesting and motivating reason to explore PAP in PTSD patients – which is the early findings that treatment of OSA/UARS might actually be associated with a decrease in post traumatic stress symptoms. We cited two studies, the work of Youakim and colleagues in 1998 (1) and our own study in 2000 (2). Although we did not go into the details of these two works, it is worth mentioning here that both of them reported on small samples of PTSD patients who appeared to improve their symptoms by using PAP therapy.
The clinical relevance of our paper could not have been timelier, as several other researchers have published on the same or similar ideas in just the past two years. Just inserting the words PTSD and CPAP into a PubMed search will bring a list of 10 recent papers during 2016 and 2017, covering either the difficulties in PTSD patients using PAP therapy or the effects of PAP therapy on relevant PTSD symptoms. A search of “PTSD and OSA” brings up additional relevant articles. This new input is a radical change from the past where the comorbidity of these two disorders was virtually ignored, except by a very small number of research groups. Now, the advances are coming so fast that there have even been articles looking at the relationships between OSA and their impact on PTSD patients responding to specific PTSD treatments. For example, exposure therapy or cognitive processing technique, which are two of the most advanced and consistently validated therapies for trauma survivors.
We could not be more delighted to see this sudden change in interest. In fact, we co-authored a commentary on this topic, (3) pointing out the fallacy in one study that had attempted to argue that sleep disorders assessments did not required prior proceeding with the treatment of PTSD. (4) In our commentary, we cited the excellent work of my co-authors who demonstrated how the presence of untreated OSA seemed to be associated with lower therapeutic effects in PTSD patients attempting exposure therapy. (5)
In our lengthy introduction in the paper, we also describe two specific areas of interest that relate to the general population of OSA patients, as well as to psychiatric patients including PTSD cases. The first concept is that of “sub-threshold compliance,” a woefully under-researched area in PAP studies. Sub-threshold compliance is also termed “partial use.” Though research has previously shown that using PAP just 2 or 3 hours per night (and in some cases even fewer hours) leads to clear-cut clinical benefits. We often find no support for this clinical pearl in the general sleep medicine community or in dealing with insurers who seem to be caught up in the decidedly non-clinical construct of adherence. Specifically, the Medicare criteria for compliance is 4 hours per night on 70% of nights. This amount of use translates into 4 hours x 4.9 nights per week or rounded up to 4 x 5, which is 20 hours in the week. Yet, no insurance carrier (to our knowledge) will sign off on a patient using PAP 20 hours per week unless the 20 was achieved through the arbitrary and to repeat decidedly non-clinical construct of 4 hours on 4.9 nights/week over a one month period. We’ll delver further into this idea later in the post.
The second key concept is how our approach is different than most others in managing the problem of PAP compliance. Most centers use behavioral change models, psychoeducation, or other coaching techniques. Although our sleep center in New Mexico uses some of these tools as well, our primary focus targets the patients “experiential and emotional reactions to pressurized air.” Summing up the approach in the paper:
“…psychiatric patients exposed to CPAP are susceptible to the problems of anxiety sensitivity and somatosensory amplification. In our clinical experience, both of these transdiagnostic vulnerabilities are triggered when attempting to use fixed pressurized air. As CPAP delivers the same pressure setting on inspiration and expiration for any given breath, the patient is always exhaling against a pressure greater than required to maintain a patent airway, an objectively proven observation described in the sleep literature since 1990. This fixed pressure on exhalation often produces an uncomfortable sensation sufficient to trigger PAP intolerance, and in vulnerable patients, claustrophobic or panic reactions flare up. Thus, at our sleep medical center, which specializes in the treatment of psychiatric patients with sleep disorders, we observe CPAP technology itself as a major cause of low adherence or outright rejection.”
The way some people might experience headaches provides the most practical way to explain these concepts. Some people develop a headache, come up with an effective plan to treat it, and then continue on with their daily activities. Other people experience a headache, and some part of their personality makes them continually reflect back on or monitor what’s happening with the headache. This extra attention given to the headache is called attention amplification or attention bias. Bottom line is that when you pay too much attention to the headache, the problem not only fails to resolve, it often worsens in intensity. The nearly identical process occurs with unpleasant sensations from CPAP. The patient is unable to stop thinking about the mask on her face or the pressurized air being delivered, which makes either of these sensations more uncomfortable than originally experienced. Eventually, the patient notices these sensations so much that falling asleep becomes impossible.
One might think that teaching a patient to distract the mind to pay attention to something else would solve the problem. In fact, we use an imagery distraction technique. Which is self-guided daydreaming in the mind’s eye, to help people stop thinking about the mask and the pressure. Yet, despite great success with this approach in many patients, it does not bring the patient all the way into a place of comfort to be able to tolerate the fixed pressures of CPAP. This is because imagery distraction cannot always resolve the problem of expiratory pressure intolerance. Instead, by switching patients to bilevel, auto-bilevel (ABPAP) or ASV devices, we find the patients can gain comfort when breathing out against the lower pressurized air. This change in technology is what helps them to avoid paying too much attention to the “unnatural” flow of air into the nose and throat.
These approaches appear to us to be the most relevant ways in which we can help someone overcome their adaptation difficulties with CPAP. First, teach them how to distract themselves from the sensations of CPAP so that the experience is not emotionally overwhelming. Second, provide the patient with advance technology, which in and of itself leads to greater comfort and therefore acceptability from the patients’ perspective.
In the next post we’ll delve deeper into other fine points of the results from the research and finish up with our discussion points on how to use the information in clinic and what research is needed in the future.
- Youakim JM1, Doghramji K, Schutte SL. Posttraumatic stress disorder and obstructive sleep apnea syndrome. 1998 Mar-Apr;39(2):168-71.
- Krakow B, Lowry C, Germain A, Gaddy L, Hollifield M, Koss M, Tandberg D, Johnston L, Melendrez D. A retrospective study on improvements in nightmares and post-traumatic stress disorder following treatment for co-morbid sleep-disordered breathing. J Psychosom Res. 2000 Nov;49(5):291-8.
- Reist C, Gory A, Hollifield M, Krakow B. Potential benefit of sleep assessment prior to PTSD treatment. Psychiatry Res. 2017 Aug 30.
- Sexton MB, Avallone KM, Smith ER, Porter KE, Ashrafioun L, Todd Arnedt J, Rauch SAM. Sleep disturbances as predictors of prolonged exposure therapy effectiveness among veterans with PTSD. Psychiatry Res. 2017 Oct;256:118-123. doi: 10.1016/j.psychres.2017.06.044. Epub 2017 Jun 14.
- Reist C, Gory A, Hollifield M. sleep-disordered breathing impact on efficacy of prolonged exposure therapy for posttraumatic stress disorder. J Trauma Stress. 2017 Apr;30(2):186-189. doi: 10.1002/jts.22168. Epub 2017 Mar 8.
Sourced from Classic Sleep Care- The Mode Less Traveled: Revisiting Advanced PAP in PTSD Patients
Sleep Review wrote a piece on our research paper, ‘Positive airway pressure adherence and sub-threshold adherence in PTSD patients with comorbid sleep apnea’ recently published it in Patient Preference and Adherence. The Sleep Review article can be found online at their site, here. This article provided an opportunity to offer more details on our rationale for using advanced PAP in trauma survivors. In addition, their article garnered reader attention, and three specific comments were posted to which I subsequently responded. You can read these comments and replies at the link above.
In discussing our research with the Sleep Review writer, Dillon Stickle, I emphasized our “drowning in air” analogy as the core behavioral response that threatens trauma survivors when using PAP therapy, particularly fixed CPAP pressure. This sensation is very close to the feeling experienced when you stick your head out the window of a car traveling 60 mph or greater. For some individuals, it might feel like a refreshing way to clean your teeth. But, for individuals with high levels of anxiety, the strong blast of the air can lead to a startle response in your respiration. Meaning a sudden urge forces you to stop breathing if it feels like you are drowning in air. This response could occur while breathing-in or breathing-out, but when CPAP is applied, most people can tolerate pressurized air breathing-in at low-pressure settings. This is because the direction matches—you are breathing in along with air delivered inwards. Expiration changes things dramatically, because you are now trying to breathe out, but the CPAP pressurized air is still delivered inwards.
PTSD patients specifically (and many other anxiety patients in general) experience and complain about discomfort of CPAP during the expiratory phase of respiration. Patients have previously informed us they were “drowning in air,” a term we now use as a useful analogy in clinical practice. As you might imagine, the stronger the sensation of suffocation, the faster the patient will rip off the mask to stop the flow of pressurized air. Unfortunately, depending upon the intensity of the response, some patients literally reject CPAP immediately afterwards and often do not return for treatment until months or years later.
In a sleep lab, this experience can be sorted out easily before lights out when a patient is working with the sleep technologist during the desensitization, pre-titration period. The technologist is spending this time before the study commences to fit the patient with various masks. At the same time, to my knowledge, most sleep laboratories also provide the patient with a taste of pressurized air so the sensations are not surprising or overwhelming. However, at this key point, it appears many sleep labs are not providing their patients with the chance to determine whether a more comfortable air pressure delivery mode (e.g. BPAP) is more appropriate.
This lack of choice has always puzzled us, because it seems obvious enough that as many as 30% to 60% of patients will describe a negative initial experience to fixed pressurized air delivered with CPAP. In our lab, we almost invariably deliver CPAP, BPAP and ABPAP during the desensitization period to gauge the patient’s response. In a smaller proportion of cases, we will try out ASV even though the patient has not yet qualified for this more sophisticated delivery of air. As far as I can tell, one problem arises if a sleep center is wedded to the belief that CPAP is the only mode of care needing to be offered, because somehow everyone can get used to CPAP. As this thinking goes, if they cannot tolerate CPAP, then no other pressure delivery mode would provide any improvements. Another possibility might be the untoward influences of insurance carriers that push people into CPAP-only prescriptions, which then feed back to the sleep lab and inhibit sleep techs from trying other modes. There may be many other factors, and I’m not suggesting here I am aware of all the thinking and circumstances that induces so many sleep centers and labs to stick with CPAP far beyond its worthiness. And, when our field considers that as much as 50% of all CPAP users fail or reject the therapy, one would think additional options might be considered.
This failure of imagination has long affected the field of sleep medicine, and even among the few research studies on PTSD and PAP, CPAP is the predominant mode of treatment. Yet, in most research investigations the adherence rates among PTSD patients falls below 50% and often resides in the 25% to 40% range. Thus, failing to imagine other options, namely BPAP, ABPAP or ASV, leaves patients without important access to rescue devices.
The irony, as discussed in the Sleep Review piece, is that CPAP is literally traumatizing some patients, and PTSD patients would be one of the cohorts most susceptible to these adverse outcomes. Many facilities, however, gain little to no training or experience in dealing with PTSD patients for the obvious reasons that most sleep centers and labs are not owned and operated by psychiatrists or psychologists. Because we specialize in mental health patients with sleep disorders, we were persuaded by 2005 to examine other PAP options, and so our quest began with BPAP at that time. Next, in 2008 to 2010, we used a lot of ABPAP. Then, from 2010 onwards we use ABPAP in about two-thirds of our patients and ASV modes in one-third. Regarding ASV therapy, we usually discover a central apnea problem among patients fighting CPAP therapy, and so these individuals qualify for the diagnosis of complex sleep apnea and thus obtain insurance coverage. However, over the past few years we occasionally encounter an isolated case in which the patient cannot tolerate any other device, but doesn’t qualify with the central apnea issue. We have appealed these cases to insurers and also have had the patient try out the ASV mode in the sleep lab to build our case for insurance coverage. Surprisingly or not, in these latter cases, some insurers have granted coverage to the individual, because no other form of PAP therapy worked or could be tolerated.
This last point raises an interesting example of a traditional view about medical practice. That is, if a patient fails Drug A, then Drug B, then Drug C for diabetes or depression or arthritis and so on, the physician is obligated and in the insurer is usually willing to accept a petition (prior authorization) for the patient to try Drug D or Drug E. This standard of practice is widespread in managing medication regimens for millions of patients for whom the first couple drugs provided no treatment gains or inflicted serious side effects. The question should arise then as to why this formula is not widespread in the practice of sleep medicine, wherein physicians could recommend more advanced PAP therapy modes for struggling patients.
This lack of responsiveness to CPAP failure patients begs the question, because a major underlying premise that fuels this CPAP fixation is that no definition of CPAP failure has been standardized in the field of sleep medicine or among insurers. Many sleep professionals mistakenly think of CPAP failure in terms of hours of use, when in standard medical practice the patient’s poor response to treatment should almost always be the guiding principle for assessing whether someone is failing therapy. If someone averages 6 hours per night for 6 nights per week, they are easily adherent based on the arbitrary Medicare guidelines for compliance. But, these hours reveal nothing in many cases about whether the patient is gaining benefit from the device. Failure then should not be based on using or not using except in the case where someone rejects CPAP outright and needs to try something else, be it advanced PAP, OAT or ENT surgery. Failure is about the poor response to treatment, but nowhere can you find a standardized definition that would push insurance carriers to accept a patient’s need to move beyond CPAP and onto advanced PAP modes. With this information, a physician would possess the capacity to go to bat for the patient and argue the need for more advanced PAP therapy in discussions with insurers’ medical directors, many of whom sadly know very little about PAP therapy and also believe in the one size fits all model of CPAP, CPAP, CPAP.
The last part of the Sleep Review piece delved into the construct of partial users or sub-threshold adherence, wherein patients may not be achieving the 4 hours per night for 5 nights per week threshold, yet they are still using the device and receiving benefits such as decreased insomnia and sleepiness. Several papers prior to our work have reported on the status of partial users and the rationale for supporting their efforts, because of their treatment gains. But again, nothing has been codified in the sleep literature or insurance policies to make things easier for these patients to continue with their devices. This point was raised by one of the commenters, who is a sleep tech, and she astutely pointed out how PTSD patients are the type of sleepers frequently experiencing shorter sleep periods, which further complicates their difficulties with achieving PAP adherence.
Another commenter mentioned the use of OAT aka mandibular advancement devices (MAD) as an alternative to PAP therapy, given that this mode of treatment might have higher compliance rates. My only concern with OAT/MAD in trauma survivors is that I notice they often suffer more frequent episodes of temporo-mandibular joint (TMJ) dysfunction, which is a relative contraindication against using dental devices. Nevertheless, for those not susceptible to this issue, I think the use of OAT/MAD is an excellent first choice for many individuals with PTSD, given the cumbersome, and as discussed, traumatizing nature of PAP therapy. Then again, bear in mind that for some trauma survivors inserting something into the mouth may itself prove re-traumatizing among individuals who have suffered sexual assault.
The last comment was a very biting, critical and cynical paragraph directed at the insurance companies. The gist of the ideas were that insurance companies create obstacles so patients fail or otherwise drop out of care and then since the patient moves on in time to another insurance company, there is no reason for the insurer to be focusing on improving a patient’s health. What’s remarkably ironic about these ideas is their similarity to what was said about health maintenance organizations when they arose in the 1970s and 1980s. Many medical professionals railed at that time against the obvious “hoops-to-jump-through” systems. And, oftentimes these complaints were valid.
However, the deeper issue is why did HMOs arise and why do we have a healthcare system now that is no longer focused on the actual term “insurance.” Think about buying auto insurance or homeowner’s insurance. When you need new brakes, do you call your auto insurer to make a claim to get coverage? How about when your house needs to be painted? Do you call the homeowner’s agent to put in a claim for coverage? Of course not! These insurance policies reflect real-world concerns about risk. Might you damage your car in an accident? Might a tree fall on your house? How much are you willing to pay to cover the costs of these events should they occur to you? Insurance companies pool their information for millions of automobile owners and homeowners and then establish risks and rates, after which you select and pay for a policy you can afford and presumably suits a good proportion of your needs should bad things unfold.
Health insurance actually used the same system a very long time ago in which you bet on the cost of catastrophic medical illness and paid for coverage. Not everyone had the money to do so, but this form of coverage known as “major medical” was the only game in town as far as I know about the history.
The big change occurred in the late 1940s when the U.S. Congress was under severe restrictions from current wage-and-price control laws, so it passed new legislation that allowed for health insurance through employers as a benefit that was provided without raising wages (against the law at the time). While on the surface, this approach would have certainly seemed like a good idea, many physicians realized the fatal flaw in such systems. In fact, an organization was specifically founded at that time by a group of physicians, Association of American Physicians and Surgeons, and on their website you can read many stories about this history and their current efforts to turn medicine into a more free market experience.
Unfortunately, many people hear the words “free market” and imagine that it describes our current system, but there are notable differences and nearly all the distinctions center around the problems caused by having a middle man business relationship. That is, the insurance companies come between doctors and patients. Making matters worse, the government frequently steps in to put rules and restrictions on both insurers and doctors that ultimately work their way into the direct medical care of patients on an individual basis.
Think for a moment about our apnea-hypopnea index and its use in sleep medicine. Where did it come from? Is it a scientifically sound and solid way to approach sleep breathing disorders? Why is it still in use? Who benefits and who is harmed by the use of the AHI? We’ve discussed many of these points in past posts. Suffice to say that the AHI is based on soft science. Millions of people can have sleep-disordered breathing without meeting the standard AHI criteria, so that means the AHI is serving as an artificial cut-off that allows any mix of authorities, including doctors, insurers, and government regulators to unequivocally swear you don’t have a sleep breathing disorder when in fact you do.
When I spoke with Dillon Stickle about the piece in Sleep Review, this issue reminded me of a patient who I recently ran into when visiting my own primary care doctor. She was one of the first of the “non-official-UARS-but-you-really-have-UARS-anyway” patients we began to work with in the early 2000s. Not only was her AHI less than five, but her RDI was less than 15, however, when you looked at the airflow curve, there was not a single instance of normal breathing the entire night. Instead, the patient’s airflow curve was flattened as in classic flow limitations or RERAs in the UARS pattern, but because she could go 10 or even 30 minutes of flattening before an arousal occurred, the event was scored as lasting the 10 or 30 minutes. This scoring approach contrasts sharply with how 99% of all apneas or hypopneas are scored, which are almost invariably based on the standard 30-second polysomnogram epoch. In other words, when you have an apnea or hypopnea, it is exceedingly common for your breathing volume to drop 50% to 100% for 10 to 20 seconds, followed by an arousal in the brain or a full awakening. This timespan is the whole event, and the classic OSA patients repeats this cycle all night long, resulting in hundreds of scorable breathing events.
My patient, showed none of this pattern, but again none of her breathing was normal. Yet, her RDI was around 8, because of the long stretches between arousals or awakenings. We had a lengthy conversation at the time, during which I had to explain insurance would not cover her costs. I also pointed out it would be “experimental” in that I could not guarantee treatment of this “condition” would decrease her sleepiness. She listened attentively and without hesitation simply asked for instructions on how to buy a CPAP device. Within the first few weeks, it was apparent to her the device was a life changing experience that fully eradicated her daytime sleepiness and fatigue. When I recently saw her, she had reported using the device faithfully for a decade with fantastic results. Never at any time would an insurance carrier cover this “condition.”
In a free market system, not only would the experience have been altogether different, but the prices for everything the patient had to pay out of pocket would have dropped dramatically. There would have been no insurance factor to determine eligibility; only the doctor and patient would make the decision about what to try. The patient would have bought the CPAP device directly from the physician’s sleep center or from a DME company like Classic SleepCare, and the prices would have been anywhere from 25% to 50% less costly, because again no insurer or government regulator would have been sticking their nose into the business dealing. The patient as a consumer could shop for the best price instead of being forced to use a particular CPAP supplier, a policy increasingly in practice nowadays. Hitting close to home, many of our Medicare patients were disappointed to say the least when they could no longer work with Classic SleepCare. The old sarcasm, “We’re from the government, and we’re here to help,” never rang more true.
Where does one go with this cynicism and deep concerns about malfunctions in the healthcare system? To be sure, just examine the past 50 years during which no solutions have yielded consistently optimal results, but all of them suffer this same flaw: the belief that health insurance doesn’t have to follow an insurance model. Health insurance can just be prepaid healthcare expenses to cover everything under the sun. As people are often naturally greedy to want the government to solve more problems, we only need to look at the current mess that has now led to outrageously high deductibles and the ensuing complaints: “with deductibles like this, who needs health insurance?”
Paradoxically, these experiences just might lead people to realize medicine in general is moving toward cash-based programs, where there will no longer be an intervening influence from the insurers. Patients will go directly to the doctor and agree to the fee. As people begin to see the futility of the high deductible programs, they will start to concentrate their resources in two ways. First, finding the best catastrophic or major medical policy (sound familiar?), and second look for new opportunities in healthcare like internet services or cash-only urgent care clinics. I don’t think we can say these approaches are booming in the economic sense, but the ideas are booming and about to explode across the country sooner than later. Just consider all the people who now sit at their laptops for psychotherapy treatment instead of traveling to a clinical site.
The wave of the future for healthcare economics is decentralization. Why go to a doctor’s office and wait when instead you can schedule an online appointment to discuss a problem that often may not require a hands-on physical exam. In sleep medicine, we want to know what our patients’ data means regarding leak, residual breathing events, persistent central apneas, hours of use, and subjective response to the PAP machine. Telemedicine resources can cover nearly all this information. Why would anyone want insurance to be involved in the middle of these scenarios?
The irony of ironies is that a sleep doctor sitting at home in his or her pajamas could eventually provide anywhere from 50% to 90% of the knowledge and information that someone needs to acquire and then apply to improve the response to PAP therapy. As you know from past posts, the sleep laboratory remains a critical resource especially for struggling patients, but the telemedicine wave will probably reach so far that eventually the advances in home testing will be at the same level as the sleep laboratory. When and how we get there depends on many factors, but the more we rely on insurers and government regulators to intercede “on our behalf,” the longer it will take to arrive there, and the longer it will take for more sleep physicians to advocate for advanced PAP therapy devices in CPAP failure patients.
Sourced from Classic Sleep Care-Totally CPAP by Dr. Steven Park: Part X (Final Words, Thoughts and Controversies)
Let’s conclude this ten-part blog series of Dr. Park’s book, Totally CPAP, with a review of his final chapter. Dr. Park brings up highly relevant topics in summarizing key points in his programs, as well as offering additional options on how to proceed should CPAP simply not be the right fit for you. We will delve deeply into some of these themes, because they bring to light crucial controversies in the field of sleep medicine on how to deal with CPAP failure.
At the outset, I wish to clarify some points from a recent conversation with Dr. Park in which I learned that he performs all the CPAP coaching himself in his office (very impressive!) and despite being a surgeon he is a stalwart defender of the use of PAP therapy in the majority of his patients. For those of you who follow his website, blogs and podcasts, you also know he is quite iconoclastic and remains steadfastly in the hunt for new and better ways to effectively treat sleep apnea patients. The most remarkable thing about Dr. Park, in my opinion, is to see someone attain such heights of excellence while simultaneously at the mercy of the various sleep labs and DME companies. I say this because he does not operate a sleep center or sleep laboratory in his own practice. Given the advances he has made already in his sleep career, I would strongly advise him to open up his own sleep center for which he would undoubtedly function superbly as a medical director of both a center and a lab. Knowing how rapidly he acquires knowledge, I am certain he would be successful, and I hope many other professionals will encourage him to consider such a path at some point in his career.
I trust this backdrop will also make very clear the distinctions between Dr. Park’s practice models and that of mine at Maimonides Sleep Arts & Sciences. Nearly all of which I would attribute to Dr. Park not gaining the opportunity to deal directly with a sleep laboratory and numerous sleep technologists. In opening my center (Maimonides Sleep Arts & Sciences) 16 years ago and working at a university sleep center for several years prior, there is no question that my largest library of knowledge came from direct contact with a series of sleep technologists and of course, my patients.
And, this approach to knowledge acquisition brings me to one of the very first items Dr. Park asks of his patients, which is “what if you tried and failed CPAP, APAP or BPAP?” And, here is where our paths diverge, because my next question would be, “and what about ABPAP or ASV?”. Dr. Park humbly and honestly engages his CPAP failure patients within two frameworks:
- A) Those not receiving an inadequate response to PAP
- B) Those reporting the worsening of sleep when trying to use PAP
These circumstances, where the cure is not just worse than the disease, but the cure worsens the disease, are what drove my sleep technologists and me to attempt to find a new way. We assumed this worsening of sleep must be considered a huge “red flag,” signaling a need to explore new treatment pathways. At first, the path was bilevel or BPAP in 2005, but ultimately between 2008 and 2011, the answer turned out to be ABPAP (auto-bilevel) and ASV (adaptive servo-ventilation).
And, what drove us to these advanced technologies? Fixed pressure, whether it is the single fixed pressure of CPAP or the auto-adjusting fixed pressure of APAP (it’s fixed in time and space for every breath taken), or the fixed settings of BPAP (it’s fixed at one pressure when you inhale and fixed at a lower pressure when you exhale) is not natural to human respiration. And, though some people can and do adapt to fixed pressure models and many report excellent responses to these devices, there remain CPAP failure cases at a rate of 50% or greater at any given moment in most clinical practices. Shockingly, instead of asking the question, “what could possibly be wrong with CPAP?” most sleep centers dance around the technology side of the equation and keep foisting the blame upon patients, demanding they work a little harder and a little longer. Apparently, if you simply persist in your efforts at CPAP or APAP or BPAP, you will succeed—except you don’t—if you are among half of the patients who fail miserably with many of these modes.
We have now treated several thousand patients in these circumstances, and their stories are nearly identical. They were never offered an advanced mode of therapy. They were never informed about advanced modes of PAP, and, most glaringly, they were led to believe that they were the cause of CPAP failure. Somehow, they just could not be properly educated on how to use PAP. Somehow, they just could not adapt because they did not try long enough to adapt, and somehow, they really weren’t cut out for PAP therapy.
This hogwash by the way, is the same line of reasoning we hear repeatedly from medical directors (almost never board-certified sleep physicians) of insurance companies who direct us to tell our patients to try a little harder and try a little longer or else just give up and try again in the future when your motivation is a little stronger because you have been suffering a little be more.
Dr. Park raises the most salient question of WHEN should someone be able to detect the difference in the effects of PAP therapy on sleep quality, especially in the context of someone having experienced years of sleep debt from untreated OSA/UARS. After all, if you have suffered for decades from horrible sleep deprivation due to the years of chronic sleep fragmentation from hundreds of respiratory events during the night, why would you expect to feel better right away? It’s a great question, but the fallacy is one often overlooked by so many sleep physicians, even among those who run their own sleep operations. Dr. Park’s question is spot on, but because he is not in the trenches of a sleep lab facility, he does not have the opportunity to see why in fact a person could experience a transformative single night of higher quality sleep with advanced PAP. Indeed, this magical night of sleep is experienced by 70% to 80% of our patients the very first time they use ABPAP or ASV, and they respond tellingly by informing us, “I slept better on this one night than I have ever slept during five years of CPAP.”
Becoming aware of this phenomenon not only corroborated our experiences with advanced therapy but drove us to understand the scientific basis for such superlative results. The answer proved to be close at hand. When you treat flow limitation in most CPAP failure patients, you can avert the problem of expiratory pressure intolerance by manually titrating the auto-adjusting algorithms of the advance PAP devices—either ABPAP or ASV—and the result is one or more obvious changes in sleep architecture as described next. These stunning results appear to correlate with the patient demanding to know, “why wasn’t I offered the chance to use this device ‘fill-in-the-number’ years ago?”
These sleep architecture changes included more periods in the night with fully normalized airflow, less time spent in lighter stages of sleep, more time spent in consolidated REM sleep, and so on. None of these magical experiences for our patients were based on magic. To paraphrase William Jefferson Clinton, “it’s the technology, stupid!”
Yet, repeatedly, thought leaders in the field of sleep medicine, most of whom work in top-tiered academic sleep medicine centers at major universities around the world, pay scant attention to the role of technology in improving patient responses to PAP therapy. Even less than scant attention is paid the nexus between efforts to titrate our RERAs while ameliorating the problem of expiratory pressure intolerance. And this turning of a blind eye toward technology has greatly narrowed the options that would so greatly benefit CPAP failure patients. Nowhere is the evidence more robust, to reiterate, in the first night titrations of CPAP failure patients introduced to ABPAP or ASV when manually adjusted by the sleep technologist. And the other variation of their responses quite commonly was, “Where was this device when I was first treated?”
In sum, there is another way, but this way remains hidden from view because so many people in the field of sleep medicine just cannot imagine how technology might solve the problems of PAP therapy. This failure of imagination is incredibly ironic as I have mentioned before when one considers the technological age we are living in where invention after invention and upgrade after upgrade to these inventions are dramatically improving the quality of our lives. Hopefully and much sooner than later, hanging on to CPAP will in fact be perceived as planned obsolescence, after which more and more sleep professionals will demand newer technology for their patients. Such a day cannot arrive soon enough, in my opinion.
Dr. Park then moves on to spend time going over certain principles for those who will switch from PAP to OAT or surgery, and I think his singular comment here is worth spelling out: “There are good published guidelines by various specialty societies that are great rules to follow, but an in person evaluation by a qualified sleep surgeon is away best.” He also lists several other alternatives such as the didgeridoo wind instrument and tongue exercises that some people may want to explore. In your investigation of mandibular advancement devices (oral appliance therapy, OAT), he also suggests how the role of sleep endoscopy can provide precise data on likely success rates. To that I would add the standard jaw thrust maneuver where you hold your lower teeth (thrust) forward in front of your upper teeth, and with your lips still closed, notice whether nasal airflow is any smoother or the volume is any larger.
Next, there is a discussion about the value of the online community, and in general I agree with Dr. Park’s strong recommendation to engage with other patients in this realm. Undoubtedly, you will find social media an excellent way to communicate on various issues, many of which other sleep apnea patients have already experienced and resolved. The main weakness to online communities is that they are only as effective as the knowledge base being discussed. One of the most reliable and worthy sites is CPAPTalk.com, which covers numerous areas and where much informative and entertaining discussion occurs. Yet, you will not find many answers there about manually titrating ABPAP or ASV in a sleep lab. Moreover, you are more likely to find skepticism about the use of advanced PAP devices, because even among most sleep apnea patients the lingua franca by and large remains CPAP then, CPAP now, and CPAP forever with only an occasional hat tip to APAP or BPAP. Not to mention almost no recognition of advanced PAP.
Then, there is a discussion about data capture, including your own device’s download plus the use of 3rd party software to more easily capture data. Although I anticipate such software will continually improve, serious concerns currently revolve around whether they provide accurate data on flow limitations. Other concerns involve accuracy of standard breathing event indexes such as AHI as well as leak measurements. In both instances, when we are using data downloads from the device itself, we target the AHI to be less than 1.0 and preferably less than 0.2. Leak numbers have greater variability due to mask types and PAP modes, but again, we are targeting less than 4 lpm in all patients and preferably zero leak. Therefore, when using other software, I want my patients to know precisely where things stand and whether these targets can be met.
I very much appreciate how Dr. Park encourages you to remain vigilant on a nightly or weekly basis to look for small changes that might interfere with your response. Chronic nasal congestion could worsen AHI, flow limitation, and leak, so it should be addressed aggressively. Some patients unequivocally must switch to a full-face mask and some unequivocally must use a chinstrap. Remarkably, many sleep professionals often do not recognize that some patients unequivocally require FFM and a chinstrap together.
As Dr. Park concludes, the most pro-active patients who show the most resourcefulness are the ones who achieve the best responses. But, what in fact is the best response? One of the most common questions we ask of our patients is, “Do you think this is as good as it gets?” Or, “Do you think there is still ‘more better’ to be attained?” This type of conversation between patient and sleep professional is essential for any attempts to truly find the pathway to optimal results.
Wrapping up his discussion, Dr. Park brings up a huge administrative factor regarding your medical records. He astutely points to the necessity for obtaining and maintaining copies of most or all of your sleep records, especially your sleep studies. I can assure you, you will be eternally grateful to Dr. Park for taking this step as it will allow you much easier access to equipment and supplies whenever you move to a new location or switch to another sleep center.
It has been a great pleasure as well as an honor to read and review Dr. Park’s book,Totally CPAP. I have learned a lot and hope some of my comments have also added to your knowledge base. As I indicated previously, this book is an outstanding resource for new PAP users, and I admit that the book would be quite helpful to many sleep doctors and sleep technologists, who will learn more about a sleep apnea patient’s perspective, struggles and solutions in working with sleep medicine professionals to learn how to use CPAP.
Thank you, Steven, for your practical, valuable, and easy-to-understand contribution to the sleep medicine literature.
Sourced from Classic Sleep Care- Totally CPAP by Dr. Steven Park: Part IX (CPAP Success Program and Where to Begin)
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.
Sourced from Classic Sleep Care- Totally CPAP by Dr. Steven Park: Part VIII (Surgical Options)
In the second half of Chapter 8, Dr. Park focuses on the surgical options for the three most common conditions causing nasal congestion that might not be relieved by the medical options we discussed in Section 1 of this post: deviated septums, swollen turbinates and flimsy nostrils.
Septal Deviation and Septoplasty
Dr. Park begins with a discussion on how the septum or midline structure that separates the nostrils into two openings has a cartilage portion in the front and a bony portion in the back. When the septum is crooked for whatever reason, you may be more susceptible to a stuffy nose, and a septoplasty (to straighten the septum) may improve the stuffiness. However, you might also possess a crook septum and not have a stuffy nose, so there is no requirement to undergo surgery on your nose in such circumstances.
Dr. Park describes a very interesting theory about the origin of deviated septums. The conventional wisdom is that the septum becomes crooked following trauma, usually during delivery at birth or getting punched or knocked in the nose later in life. However, in this newer theory, in a nutshell, anatomical development of the jaw and dental structures are shrinking in modern society due to dietary and other influences, which changes the nasal cavity in such a way that the normal septal development must occur in a smaller space than normal. As a result the septum “buckles” and becomes crooked.
In Dr. Parks’ own words with some paraphrasing, here is a more detailed description:
“….jaws are shrinking due to what and how we eat….Soft foods, bottle-feeding, thumb-sucking, pacifier use, prematurity and nasal congestion…are all factors in crooked teeth….Crooked teeth means your jaws are not big enough to hold all your teeth….in some cases, the roof of the mouth doesn’t drop down normally, leading to narrow dental arches, resulting in smaller oral cavity size and crowding inside the mouth….Inside your nasal cavity, if the floor of the nose (the topside under which is the roof of your mouth) does not drop down, the nasal septum cannot grow properly and buckles from the limited space….The nostrils in turn will be pressed closer to the midline, leading to greater risk of collapse when breathing in.”
Dr. Park next describes the basics of a septoplasty, but without a diagram or other graphic to follow along, it was a bit difficult to follow the narrative, and I would not want to attempt to retrace his steps as I possess no surgical background. A main theme of this section is that the surgery must be done well, otherwise various side effects may occur; and at our center, we have noted that many patients with deviated septum repairs still demonstrate persisting septal deviations years later. It is also not a rarity for the surgery to fail and then be repeated within the next year, so we resonate a great deal with Dr. Park’s main point that the surgery must be done very well to get things right.
Post-surgery, your expectation should be that some immediate improvement in nasal breathing can occur in as little as 2 to 5 days, but the total healing process may take weeks or months, during which there will be ups and downs due to crusting, swelling, bleeding, and the need to evacuate the debris in a very gentle manner as well as managing the regular mucus build-up. Final, healthy scar tissue that situates things in their proper place could take weeks to months before benefits are maximized. Pain-wise most patients do well with over the counter pain killers.
The main risks from the surgery are infections and bleeding, but these problems are not very common. Careful follow-up by the surgeon can usually rectify these issues and insure no further consequences. Despite the high success rates for septoplasty, nasal congestion may return in some patients. Dr. Park points out the three most likely problems causing the persistence of congestion in these circumstances: (1) the septal repair was not aggressive enough; (2) the turbinates are swollen and need attention; and (3) the problem of flimsy nostrils.
Turbinates and Turbinoplasty
The turbinates are “like wings on the sidewalls of the nasal cavity.” They function to regulate airflow, moisturize the air, and also warm the air you breathe in, all of which improve the comfort and sensations of breathing. However, when turbinates swell up, the sensation turns into congested, stuffy or blocked feelings. Inflammation, irritation, and infection can all induce swelling in the turbinates. Even more subtle changes in weather, including variations in temperature, barometric pressure, and humidity can influence the swelling in the turbinates.
In this section, Dr. Park explains how the turbinates are particularly susceptible to changes from the non-allergic or vasomotor rhinitis problem that we’ve discussed in several prior posts. And, he notes that acid reflux can also trigger the same problems, that is, engorgement of the turbinates ultimately leading to excessive mucus production. The result is a congested, stuffy or runny nose.
Last, turbinates are also part of the nasal cycle, the change in the insides of the nasal cavity that can sometimes be experienced as an easier or more difficult period of breathing. The turbinates can increase in size in alternation between left and right sides every few hours. You may or may not notice these changes, but if you suffer from a deviated septum on one side and the turbinate enlarges on that same side, you have a greater chance of feeling the restricted airflow during that interval.
In beginning the discussion of turbinate surgery, I was very pleased to see Dr. Park’s direct approach to the problem of “empty nose syndrome” where the inferior turbinates are completely eliminated from inside the nose. While this condition is much rarer than in previous times, I have met patients with this condition, and it can prove psychologically debilitating. Due to the sensory capacities built into the turbinates, the empty nose syndrome not only can lead to problems with nasal congestion, but in some cases, the individual feels unable to obtain a full breath on inhalation. I was very fortunate in the 1980s to talk about a patient with Dr. Eugene Kern, who first wrote and talked about this condition. A very good friend of mine had experienced the full removal of her turbinates and developed severe anxiety problems in the aftermath. She visited Dr. Kern to eventually obtain the correct diagnosis of empty nose syndrome. You can learn more on Dr. Kern’s video.
As Dr. Park notes, we now know that turbinates play a vital role in respiratory physiology and that a certain degree of nasal resistance is required in order for the individual to experience “proper breathing.” Therefore, surgery is now directed at preserving this external turbinate tissue by focusing on shrinking procedures as opposed to surgical resection.
Dr. Park then describes various shrinkage procedures starting with a few that can be completed in a doctor’s office and then moving onto several inpatient procedures that require inpatient care involving general anesthesia. Again, not being a surgeon I will leave these details for when you read Dr. Park’s book. Following the surgery, Dr. Park points out a fact I had never heard previously, which is that turbinate procedures are usually not painful and do not require pain meds.
Debris, crusting, and mucus all are a part of the healing process, which takes weeks or longer, and it is imperative to be very cautious in evacuating material too forcefully from the nose after the surgery. Using nasal rinses are a preferred approach to assisting in the clearing of junk from the nose. Again, like with nasal septum surgery, bleeding and infection are major but rare side-effects. And as before, turbinate surgery failure occurs when the procedure may have been too conservative, there is a persistent nasal septal deviation or you suffer from flimsy nostrils.
As we noted earlier, the problem is that your nasal anatomy is just too small to begin with or the walls of your nostrils may not been sufficiently strong enough to let a normal volume of air flow into the nasal cavity. For some, this problem is their natural anatomy, while for others past nasal surgery may have weakened how the nostrils are functioning when trying to inhale. In this section of the book, Dr. Park provides 3 steps to self-diagnose the problem:
- Look in the mirror and watch the openings in your nose when you take a deep breath in; if the sidewalls collapse, that’s the problem.
- Place a fingertip next to the nose on each side and gently pull up the skin towards the outer corner of the eye. If breathing in is noticeably easier, it also suggests this problem.
- You can perform a similar #2 experiment by using the handle end of Q-tips, placing one in each nostril and gently lifting up and sideways. Again, noticeably improved breathing suggests this problem of flimsy nostrils.
Prior to surgical interventions, Dr. Park reminds us that this collapsibility may also be aggravated by the previously described problem of nasal congestion due to allergic or non-allergic rhinitis. Therefore, it is imperative to address beforehand any aspects of the congestion that might respond to appropriate medical treatments.
The basic rhinoplasty procedure that Dr. Parks describes for flimsy nostrils involves the addition of a small piece of cartilage onto the current flimsy sidewall cartilage that is causing the problem. This surgery is called the open rhinoplasty approach. Another way is to work directly inside the nose to examine and realign the internal cartilage, which then produces a “mild nose-lift” effect. A third possibility involves nasal valve repair.
Overall, this chapter of the book was the most detailed for the obvious reason surgical interventions were discussed. My sense is that many sleep doctors and patients are unfamiliar with much of this detail, so I believe many people would benefit from this information. Though I am not surgically-minded, I share the same sense as Dr. Park regarding the value of nasal surgery to make PAP easier to use. In fact, Dr. Park closes the chapter with a story about a man who had been struggling with CPAP until he underwent septoplasty, turbinoplasty, and nasal valve repair. After the procedure, his CPAP pressures needed to be lowered, and his response to treatment was much better, including a better adjustment to the lower settings and less episodes of mouth breathing. As Dr. Park highlights, many patients currently struggling with CPAP often benefit from a nasal evaluation from a skilled ENT physician. And, I would add that all of this information is equally relevant to individuals who forego CPAP and use the OAT dental device instead.