When we ask patients about the content of their racing thoughts, the common answers revolve around past or future events and the related worries about what has happened or what will happen. The circumstances are almost always about work problems, relationship issues, or concerns about health or finances. Other topics emerge, but they often lead back to these major categories of stressors in one’s life. A closer inspection of this content invariably reveals a deeper or more primal emotional basis for the worry in which the concern equates to some type of threat.
You are worried about a conversation you had with your boss and wonder if you overstepped your role or boundaries in your efforts to offer constructive criticism. Depending upon how well you communicated, you may be confident in having provided sound feedback. But if you are prone to worry you will soon develop racing thoughts about the interaction; and, underneath these ruminations lays the fear triggered by a threat (real or imagined) to your job security. Common sense would hope to prove there is nothing to worry about, but if the element of threat surfaces from the conversation, then the fear is a very real phenomenon even if you do not recognize or experience the feeling of fear. Instead, you experience the fear as racing thoughts, the signature calling card for most insomniacs presenting for treatment. However, over time as this pattern repeats itself, you often lose any awareness of the emotional underpinnings and instead confirm in your own mind that “I just can’t shut off my mind and now I’m going to have insomnia once again.”
In any of these major stressful circumstances, whether relationships, health or finances, something from the past and future seems amiss. You cannot control the past, because it has passed, and you cannot control the future, because it has not happened. But, you can certainly worry about the past and the future when you imagine no other ways to work through the emotional duress you are feeling about past events or future possibilities. Interestingly, worrying about the present or current issues may be healthy and appropriate, because an issue may require immediate attention and action. Still, in most circumstances, it is more likely that a present worry is actually related to something previously encountered or an expectation about the future. Again, a threat is usually at the heart of the matter.
However, threats do not indicate that fear is the only emotion to manage. Instead, any adverse emotion such as sadness, frustration, shame, embarrassment or guilt may be the underlying feeling driving your racing thoughts. In not uncommon circumstances, one can be overjoyed with anticipation for a future event in which the enthusiasm or excitement is too strong and triggers the racing thoughts. Too much emotion of any type that is ineffectively processed throughout the day will linger in the evening and bedtime and lead to racing thoughts.
The key to solve this source of racing thoughts is learning how to deal directly, immediately and spontaneously with troublesome emotions. Yet, if you have waited until bedtime to deal with these intense feelings, you are usually too late; and, the insomnia will be your bedpartner for a while. For these reasons, I describe in my book, Sound Sleep, Sound Mind, that insomnia starts first thing in the morning as soon as you wake up should you ignore your emotions and feelings for most of the day. By ignoring what you are feeling, you are building up a reservoir of emotional tension, sure to influence many of your thoughts and behaviors throughout the day. With healthier emotional processing skill, the individual pays close attention to feelings during the day and willfully chooses to “listen to the heart” to determine the relevant information embedded in these emotions. Although a broad term for this skill is “emotional intelligence,” the more accurate way to understand this capacity is to realize that any human can experience and identify a feeling, after which the goal is to feel the feeling and process it.
The two latter steps (feeling and processing it) are the most difficult for insomniacs, because they became insomniacs by not learning how to feel feelings or how to process them in effective and healthy ways. Instead, they learned to ignore and stuff emotion, after which they began to suffer from racing thoughts; and, in most cases, few made the connection that unprocessed emotional experiences is the root cause of their ruminations.
Many insomniacs are capable of identifying a host of emotional experiences, but their problem occurs when they can only think about their feelings instead of feeling them. As the very best example of this constrained approached to human emotion, insomnia patients are confused when asked, “where do you feel your anxiety or your stress or your anger or frustration?” It does not occur to them that feelings are experienced in any other place except the mind, so their most common response is to point to the head when asked these questions. Nonetheless, when explained to insomniacs that most feelings can and usually should be experienced somewhere in the body, notably in the chest (the anatomy that surrounds your heart), most individuals recognize they do not function in this manner. Instead, they recognize they are thinking about feelings instead of feeling them and when they comprehend this disconnect, they sense there is a difficult task ahead.
Generally speaking, they are correct. The good news is that intellectually they understand the deficiency or incompleteness in the way they are working (processing) with emotion. But, the bad news is that they are decidedly uncertain on how to learn to function in the healthier way. Unfortunately, for many of these individuals, months or years of new attention to emotional development is necessary. My book, Sound Sleep, Sound Mind, details many pathways to choose from and practical exercises to work on in developing emotional processing skill.
For the insomniac acutely interested in how to overcome this problem, while there are no simple answers for long-term success, occasionally a clearer recognition of the nature of the problem can start moving the individual toward fewer sleepless nights. The most basic way of attacking the racing thoughts is to literally say to yourself, “I know I am suffering racing thoughts right now, because something in my daily life is bothering me on a deeper level.” Then, add, “My guess is the thing that is bothering me is…[fill in the blank], and so I am going to reflect on that issue for a few minutes to see whether I can comfortably gain awareness of my feelings.” Even if the individual does not succeed in any insightful fashion, the simple acknowledgement that racing thoughts are a signal of a deeper problem accompanied by the willingness to minimize the importance of the racing thoughts may provide some relief, because people gain a great sense of security when they can define and understand an unpleasant experience.
Knowing that racing thoughts are not the real problem but the marker of a deeper issue means the insomniac no longer feels like something is seriously wrong for not being able to turn off the mind. Instead, there is comfort in knowing that racing thoughts are a predictable outcome when daily emotions go unaddressed. Just this small amount of knowledge can reduce the intensity of the ruminations and lead to faster sleep onset.
When the racing thoughts are not of the most severe type, unlike the problem in someone with serious mental illness who might be on the brink, imagery distraction techniques are another strategy to break the spell of ruminations. Although the human imagery system can be described in very complex fashion, one of the remarkable things about the mind is its ability to be influenced by non-verbal activity. If thinking or self-talk is what makes up most of your mental activity, day or night, it may only require a small push towards non-verbal experiences to quiet down the racing thoughts and ruminations. If for example you hop into bed and immediately set your mind to picture the round of golf you played earlier in the day or the walk in the park or the last time you were playing with your grandchildren and so on ad infinitum, you will often discover you are no longer overwhelmed by the experience of racing thoughts. Imagery proves powerful in taking over your mental landscape, after which the tendency to fall asleep comes to the forefront.
Imagery may also be potent for reasons related to the actual sleep onset process. As humans fall asleep, it is common to notice dreamlets or other bits of imagery just prior to dozing off. Thus, practicing imagery skills during the daytime and then bringing these skills with you into the bedroom and into bed may prove a convenient way to overcome racing thoughts and ruminations and induce rapid onset of sleep. We have prescribed this technique for thousands of patients who have visit our sleep center for more than a decade, and many of these individuals report remarkable benefits by adopting imagery practice to treat their insomnia.
To review what has been discussed so far, it is important to reiterate racing thoughts are a nearly universal problem among insomniacs, and a nearly universal cause of racing thoughts and ruminations is the inability to process emotion in one’s daily life. Thoughts manifest as the “safer” way to experience emotion when someone fears feelings or is simply untrained in the ability to work directly with emotions. For many insomniacs, many emotions appear very large and menacing, so it seems more natural to avoid such feelings. The good news, however, is that many feelings show potential for much easier management than anticipated, which is why the imagery technique provides so much relief. In contrast, when an individual is suffering a severe bout of racing thoughts and ruminations that do not respond to imagery exercises, we can predict the emotional basis is in fact at a very intense level of type that might only respond to psychotherapy or medications.
You can see from the above summary that the concept of threat is at the core of this process. A very high threat indicates very strong emotions; whereas a lesser threat suggests the emotions may be processed more easily upon brief reflection, or imagery might dissolve the issue (for the time being) so that sleep is just a few minutes or moments away.
This point about threat is essential to understanding the relationship between insomnia and sleep-disordered breathing and how the latter may provoke racing thoughts to cause or aggravate the former, all of which will be covered in the next post.
The inability to turn off one’s mind is the most frequently reported complaint of individuals who cannot fall sleep or return to sleep in the middle of the night. This factor is so prevalent, anywhere from 80 to 90% of insomniacs will report racing thoughts and ruminations as the chief cause of their insomnia. “I just can’t turn off my mind,” or “my engine just won’t shut down,” are common refrains among these folks, ranging from children to adolescents to adults to the elderly.
Racing thoughts and ruminations are the primary target of the pharmaceutical industry when developing prescription or over-the-counter (OTC) sleep aids. While the pharmacology is designed with a goal to create the feeling and sensation of sleepiness, the effectiveness of the drug can be measured by how effectively it overcomes the frenetic mental state. To be sure, there is no drug to eradicate racing thoughts (although some drugs advertise they can quiet the mind of an anxious or bipolar patients); rather, the drug’s ability to induce drowsiness must prove sufficient to overcome the racing thoughts and ruminations.
As is well known, many insomniacs shy away from the medication approach, prescription or OTC, for numerous reasons, two of which include drug side-effects and developing a dependency on the medication. Insomnia patients therefore are always looking for other means to eliminate racing thoughts and ruminations, which brings us to a recent article published at cnbc.com on their MAKE IT section under the heading tab “Careers.” No surprise, a lot of people suffer from insomnia when they are searching for new pathways in their professional lives.
The piece, entitled “5 tricks to fall asleep when your mind is racing about work,” describes five specific tips or techniques for overcoming racing thoughts:
- Stimulus control: get out of bed
- Read a book or color
- Schedule 10 minutes of worry time earlier in the day
- Exercise for 20 minutes every day
- Set up a sleep routine
I will briefly describe the pros and cons of each “trick,” followed by a deeper explanation of the fundamental causes of racing thoughts and how to manage them most effectively over the long-term without sleeping pills and without tricks.
Stimulus Control: this mainstay of cognitive-behavioral therapy for insomnia (CBT-I) is one of the most powerful tools for combating sleeplessness. It works on the premise that when you remain in bed while not sleeping, you are teaching yourself the bed is place to not sleep. To reverse the conditioning or habit, you leave the bed and bedroom and engage in some other activity until you feel sleepy, at which point you return to the bed to go to sleep. This technique works wonders in many insomniacs, but a sizeable proportion will return to the bedroom with persistent racing thoughts and ruminations. Thus, stimulus control is similar to drug treatment in that the goal is to get you sleepy enough to overcome the racing thoughts as opposed to directly targeting the racing thoughts. No doubt, whatever you choose to do outside the bedroom may have a direct impact on the racing thoughts. More later.
Reading or Coloring: Both techniques work well for many individuals with insomnia and what is especially interesting is each method could be used in bed before lights out for only a few minutes to bring on the requisite sleepiness. However, if prolonged reading or coloring occurs, these approaches are self-defeating, because they not only interfere with sleep hygiene but also may entrench a new learned behavior or conditioning effect in which the insomniac arrives in bed to read or color and not to sleep. Nonetheless, when reading or color is effective, it can be argued its effects are not simply inducing sleepy feelings; instead, by directly activating the mind in non-verbal ways (e.g. coloring is a visual experience; reading activates images from the book’s content), racing thoughts are directly targeted; reading and coloring then are potentially more powerful tools if their application yields rapid changes in the mental landscape.
Worry Period: This concept is legendary in sleep medicine history as well as in the treatment of insomnia and is considered another variation of stimulus control; it dates back several decades and shows validity when applied by mild insomniacs. However it may not function as an enduring system for moderate or severe insomniacs. The idea is simple: if you face your worries honestly for a few minutes earlier in the day or evening, then perhaps these same worries will no longer haunt you when you climb into bed. To turn the worry period into a routine behavior, you must repeat the process each day at the same time and in the same location. In the original anxiety research, 30 minutes duration was recommended. To repeat the above criticisms in a different way, if your worries are of a mild nature, then 10 minutes of worrying might do the trick, but when someone perceives her life stressors as more painful, complex, and unrelenting, then a great deal more mental and emotional work is needed to overcome these worry triggers as bedtime approaches.
Daily Exercise: Many people report daily exercise deepens their sleep and may enhance sleepiness around bedtime, which naturally would promote faster sleep onset, but I am unaware of any study that indicates exercise will decrease racing thoughts and ruminations directly, specific to the problem of attempting to fall asleep or return to sleep when awakened. That said, long and brisk walks sometimes enable individuals to “burn off” anxiety and worries and thus may actually decrease racing thoughts and ruminations. Whether or not this effect is maintained at bedtime or during the night if awakened is unknown. Thus, exercise is a great tool for general health and to promote sleep, but its impact on racing thoughts are more likely to be inconsistent and more of an indirect effect.
Sleep Routine: Here, the idea is to simply pick a time about one hour before bedtime to unwind in various ways to promote relaxation, which in turn allegedly decreases racing thoughts and ruminations. For example, stretching exercises, yoga, meditation, coloring and so on may encourage the mind to do less thinking and worrying and more accepting and relaxing. Eating and drinking during this window prior to lights out may prove counterproductive if indigestion occurs. Bathroom rituals such as flossing, dental hygiene, brushing hair as well as showering or bathing can all promote the mindset it is time to prepare for sleep. Again, while a sleep routine seems like common sense and indeed works very well for many normal sleepers, it may or may not yield consistent results among more severe insomniacs.
Overall, these ideas are worth considering, because they have helped many insomniacs, but for the most part these approaches do not directly address the nature and causes of racing thoughts. In many conversations with sleep experts over the years, I have often asked the question “why do insomniacs have racing thoughts at bedtime?” Surprisingly, the only consistent answer is that insomniacs suffer anxiety and tension surrounding sleep issues, and racing thoughts and ruminations are a component manifestation of the sleep disorder. Nonetheless, few have reported specific techniques that directly target the racing thoughts, which is the topic of the next post along with the etiology of the problem.
Now that we have completed a look at the six challenges, we move to the second main heading in the SAPCON article in Sleep Review, entitled PATIENT-SUGGESTED SOLUTIONS. This section is remarkable for its brevity and yet includes nearly all essential resources and strategies that must be considered in optimizing the care of OSA/UARS patients. Not only is the information the epitome of “less is more,” but also I would argue most sleep professionals would gain more by reading and attending to this set of prescriptive steps than sifting through lengthy review articles on the topic of PAP adherence.
My comments on each of their bullet points (below) attempts to provide some clarifying approaches to the steps they have outlined, but reading this section for yourself whether a patient or professional will expand your understanding of how to tackle numerous obstacles that interfere with any PAP management model.
In the introduction to this section, the authors point out how solutions derive from “improving basic communication” as well as efforts to “individualize treatment and management.” Sounds simplistic, right? In fact, it is exactly what most patients complain about not receiving while struggling with PAP. That is, most PAP patients want and need more information more readily available and tailored specifically for their circumstances and difficulties. Undoubtedly, all patients want this approach for any medical illness, but PAP management is different for all the reasons discussed in the prior posts on SAPCON and especially because we are dealing with a vexing and unwieldy physical device that is unique in comparison to prescribing a drug. To extend the analogy, PAP requires the engagement in a markedly different type of system compared to how one receives a medication through a pharmacy.
- Determine with each DME you work with the type of information addressed with each patient by sleep staff and DME staff, then fill in the cracks, which should naturally lead to who and when to call.
Comment: Excellent advice on paper, but its application always has the potential to be sabotaged by the turn over at either entity. In our experience turnover is much greater in our local DMEs than in our sleep staff, thus it is common for things to fall through cracks among less experienced employees no matter how dedicated they are to the job. On the other hand, administratively, I have been impressed with how often DME staff will alert us to rules and regulations affecting their patients’ access to resupply or even initiation of PAP treatment. The bottom line is we always err on the side of caution, which means assuming the current reliability of a particular DME may be lower than expected. Although this approach requires more work at our end, unfortunately we have not found consistent utility in providing constructive feedback to local DMEs, in contrast to our excellent working relationship with Classic SleepCare. Instead, we have grown to accept the waxing and waning pattern of diligence, which is most pronounced within the national franchise DMEs, perhaps due to their competitive bidding successes leading to lower reimbursements and plausibly fewer resources.
- Provide useful information in writing at appointments including key terms, website links, and a patient process map.
Comment: In medical school training and residency (1979-1986), we learned the importance of providing patient’s with written instructions at the end of an appointment so they would refer back to the steps needed going forward. Remarkably, to this day, a sizeable but unknown proportion of physicians do not provide written instructions for patients at the close of an encounter. In addition to written instructions, all of our sleep study reports (copies of which all patients receive) include a list of 30 key terms and their abbreviations. Regarding website links we have several on our own site to which we regularly refer our patients:
- Our nasal breathing video series has proven reliable in instructing patients to seriously examine and treat their nasal hygiene problems.
- Our sleep obesity series provides a detailed discussion on how weight loss may be very difficult for individuals chronically fighting off fatigue and sleepiness from untreated sleep disorders.
- Last, our very short video on the problem of nighttime trips to the bathroomexplains the link between OSA/UARS and nocturia.
- Our main site sleeptreatment.com also provides numerous links on sleep disorders, treatment pathways, and assorted other resources to help patients increase their sleep knowledge.
- And, our new patient process link provides a thorough description of what to expect from the ABCs to the ZZZs of a sleep treatment program in the form of an easy to read 16-page pdf that can be viewed online.
Some sleep centers no doubt have more or less of these types of resources, yet nothing replaces the human factor of being able to call the center to discuss a problem and gain a solution from a sleep professional – either at the sleep clinic, the sleep lab, or the DME.
- Follow-up calls early on or in timely periodic fashion should be a regular component of any sleep center or DME operation.
Comment: We concur with this point in spirit, but practically it is often the case more so than anyone might like to hear that lots of patients simple do not want to be bothered, because they view their efforts to treat their sleep problems from a different perspective than the sleep professionals. One typical patient encounter, probably seen at most sleep centers, is an individual who either rapidly gave up on PAP therapy and is in no hurry to start over or is using the device at a level satisfactory to him or her regardless of fair or worse outcomes. In other words, people live busy lives and once they have attempted PAP, they often make quick decisions to reject it if they cannot make the system work for them. Or, if they are using the device a few hours per night on a few nights per week, they presume this progress is an adequate start. While it is true many patients who quit early could be salvaged, it is not always easy to predict who will be receptive to coaching and new efforts. Will early follow-up help pinpoint who to maintain contact with? Certainly, but early contact is only as useful as the degree of motivation within the individual. We use early contact follow-up routinely and are routinely disappointed by those individuals who simply ignore any and all contact efforts. However, if we look at the people who remain motivated, there is no question that regular follow-up means a great deal to these individuals and serves to increase their motivation as well as enhance their skill set to be able to use PAP therapy.
- Discussing range of treatment options and their risk/benefits.
Comment: We discussed this concept in Part 3 of the series The only reminder I would add is that in nearly all cases, a patient is going to achieve the best response when using a PAP device, and most likely an advanced PAP device such as ABPAP or ASV, albeit some patients do so with CPAP, APAP, and BPAP, often with the addition of EPR systems. But, it cannot go without saying that OAT or a surgical intervention plays an important role in OSA/UARS treatment because of so many patients unable to tolerate PAP or unwilling to persevere due to the numerous hassle factors. A 50% improvement with OAT or a surgical intervention is most decidedly better than zero treatment, i.e. PAP rejection or intolerance.
- Be on the lookout for patients with greater complexity, including those with complex sleep apnea as well as co-occurring mental health processes such as PTSD and insomnia.
Comment: To their list we would add leg jerks, nightmares, hypnotic dependency, anxiety and depression as well as a host of co-morbid medical conditions, which in their own right also cause many extenuating circumstances in managing the patient, not the least of which is to worsen anxiety and depression symptoms. Heart failure or pulmonary patients dealing with life-threatening illnesses do not enthusiastically embrace something like PAP, because it is initially perceived as adding another barrier to catching one’s breath. Overall, as we have described in numerous related posts, it is imperative to make the PAP therapy experience as comfortable as is humanly possible. And, as we have described, the ABPAP and ASV devices provide added comfort by eliminating or drastically decreasing the problem of expiratory pressure intolerance. To underscore the point made by the SAPCON authors, I would vigorously argue that the complex patients are the norm at most sleep centers, because it is rare to find so-called straightforward cases of OSA. Thus, I always encourage other sleep doctors to use the “guilty until proven otherwise” approach, that is, by maintaining the attitude of “a more than meets the eye” perspective, fewer patients will reject PAP or be lost to follow-up.
- Patients who use PAP regularly yet remain symptomatic or who complain about the “awfulness” of having to use PAP are clearly headed down paths of noncompliance; therefore, it is essential to tease apart the issues that continue to prevent them from receiving benefits or from tolerating the device with a better mindset.
Comment: The key point the authors are exclaiming is the necessity to be very specific in querying the patient on what might have been missed previously or what simply is now coming to the forefront and creating the lack of benefit or interfering with efforts to use PAP.
While a list of factors needing to be addressed is not lengthy, it is noteworthy how often we hear about simple things being overlooked, according to second opinion patients we have treated. We have discussed many of these issues in numerous prior posts; here, I want to focus on out of the ordinary tips that address these italicized issues (below) that may fall through the cracks:
Leg jerks: Many sleep docs still do not appreciate leg jerks are not categorically linked to EEG arousal activity that disrupts sleep. In other words, leg jerks without EEG arousal may still be disrupting sleep in what are known as “autonomic arousals”—changes occurring in the brain yet invisible on the sleep study. Thus, patients who continue to demonstrate leg jerks without EEG arousal will often discover that treatment with medication markedly improves their response to PAP.
Aerophagia: While many sleep professionals may jump to the conclusion air swallowing must be related to mouth breathing or mask leaks, two frequently overlooked causes include leg jerks and chronic rhinitis. It appears leg jerks trigger the patient to swallow for unknown reasons. Rhinitis, especially of the nonallergic type frequently associated with post-nasal drip, causes swallowing all night long. One or both conditions must be treated in such patients to eliminate aerophagia.
Device Maintenance: Many patients imagine their equipment can be used night after night without cleaning the tube, headgear, and mask. Even a chinstrap can be washed. For the psychological benefits alone, it is a very refreshing feeling to climb into bed and wear a clean mask with clean headgear, breathing air through a cleaned tube and humidifier system. And, this cleanliness may yield other benefits by decreasing bacteria counts on the equipment and potentially reducing risk for infections.
Self-Reported Poor Responses: Do not trust the outcome surveys patients complete at follow-up appointments unless these measurements are consistent with the subjective complaints or improvements described by the PAP users. Many patients show values in the normal range for sleepiness, fatigue, and insomnia, and yet they know something is not quite right. Here, it is essential to probe the patient, because something is missing in the treatment package or something is incomplete in the diagnostic assessment. Clinical depression is one of the more common co-occurring conditions that confuse the patient and the doctor when trying to assess PAP outcomes.
Psychotropic Medications: In our society, far too many patients are hurriedly placed on medications for mental health symptoms. Although a sizeable proportion of these patients can and do benefit from improvements in mood and decreases in anxiety, nearly all these drugs cause side-effects, many of which directly or indirectly act on sleep architecture (stages of sleep) or to aggravate leg jerks. Because most sleep doctors are more likely to see patients downstream from when the patient was placed on these drugs years earlier, it is a delicate and lengthy process just to broach the topic of whether or not these drugs are interfering with the patient’s specific response to PAP or the general efforts to improve sleep quality, continuity, and duration.
Headgear and mask discomfort: We are now fortunate to live through the midst of a technological revolution on mask design, which has led to large improvements in comfort and usability. Dedicated sleep technologists at sleep centers or respiratory therapists at DMEs must diligent leave no stone unturned in helping patients to solve these problems. With the new array of mask equipment, the choices are so much broader and so much more precise; virtually all mask issues are now solvable. Plus, mask liners reflect another layer of mask technology development to improve fit and comfort.
Nightmares: Many patients using PAP therapy report a subsequent decrease in disturbing dreams. Therefore, in the early going, a patient with co-occurring OSA/UARS should be reassured that chances favor a reduction in bad dreams with effective use of PAP. For those patients whose nightmares do not recede or in rare cases worsen, there are numerous nightmare treatment strategies available, chief of which are Imagery Rehearsal Therapy and the drug Prazosin. In these less common cases, patients may stop using PAP until the nightmares are treated.
Insomnia: There are many strategies for treating insomnia among patients with OSA/UARS. Many sleep doctors will initiate medication trials, but we do not favor this approach. Cognitive-behavioral therapy for insomnia is a gold standard treatment; and, though many patients see a lessening of insomnia with PAP therapy, among individuals with persisting insomnia complaints discretion is often needed to determine whether PAP should be deferred temporarily until the patient completes a CBT-I course, after which PAP can be more easily re-initiated.
No doubt, you can think of other snafus as well, but as the SAPCON authors declared we must be vigilant and precise in our discussions with our patients to drill down to the level where the problem is occurring, so we accurately identify the issue, and then formulate a more complete plan for resolution.
This article is the sixth in a series, following:
Part 1 – They said I need a machine, that’s it?
Part 2 – So I have sleep apnea? So what?
Part 3 – Are there options besides CPAP?
Part 4 – Frustration rapidly leads to non-adherence
Part 5 – Delays in diagnosis or outright misdiagnosis.
The sixth challenge, “So, who do I call?” segues into their second main heading, entitled PATIENT-SUGGESTED SOLUTIONS, so we will lay the groundwork for the solutions section with our comments on this final challenge.
The first quote of the challenge says it all: “I often get the sense that equipment providers expect physicians to educate patients, and physicians expect home care providers to educate patients.” And, of course the unhappy ending: “This expectation on each side often leads to little or no education for the patient.“ The bottom line is the patient does not know what he or she does not know, and therefore the problem is not only discerning who to call but also when to call and what needs to be asked.
This specific issue is a flaw in the administrative workings of sleep medical practice and no clear solution exists. However the cause is clear: the federal government’s decisions to separate clinical practice from the sale of durable medical equipment (aka home medical equipment) inhibits practical ways to communicate between sleep clinics and DMEs. The confusion generated by this peculiar relationship drains energy and motivation from both entities while they are attempting to help their mutual patients. Working with one hand tied behind the back is what comes to mind in these situations.
Even when you have an ideal arrangement, like Classic SleepCare, where the focus is almost exclusively on sleep apnea products and services, the separation from the sleep center environment can sometimes result in problematic communications, mistakes in prescriptions for PAP devices and masks, and challenges in managing follow-up. These problems are especially rife when you imagine what transpires in typical DMEs that serve thousands of other consumers for all sorts of products unrelated to sleep (e.g. wheelchairs, crutches, hospital beds, etc.).
Because of the belief that sleep clinics selling PAP equipment leads to corruption and abuse, and because of the perception of an inherent conflict of interest, very few sleep centers have been willing to move into the DME branch of sleep medicine. You can see the difficulties that would arise in such interactions when a physician first must convince the patient of the factual basis of a diagnosis of OSA or UARS and then start in with a sales pitch on the great value of investing in a PAP therapy treatment. The perceived conflict of interest now seems or feels like a real conflict to some patients.
Regardless of this glaring flaw in the infrastructure, both DMEs and sleep clinical operations must find a way to solve patient problems as they emerge. However, the factor of poor timing can lead to a rapid deterioration in the patient’s response and motivation, because it is well known in our field that patients who struggle early in trying to use PAP often drop out of care, often in the first week or initial few days after filling the prescription for the device.
Clearly, some DMEs and sleep clinics are better organized and efficient, and therefore more capable of delivering effective services to their OSA/UARS patients. However as capacity drops off in either facet of care, it is not uncommon for patients to feel as if they are bouncing back and forth between a DME and a sleep clinic. Who steps up and solves the information gap when the patient needs answers to questions about masks, leak, chinstraps, pressures, nasal congestion, headgear, mask liners, mouth taping, leg jerk medications, aerophagia, mouth breathing, skin irritation, and so on? Most likely the patient will get answers from both resources, but how and when they receive the answers frequently requires plodding through a very muddy field.
We recently set up a new system with walk-in data downloads for patients who are clearly struggling and need to rapidly address concerns about pressures and leak early on in the process. We also use a special CPT code (94660) to arrange for patients to meet in timely fashion with sleep technologists. A third option currently in trial is to decrease the number of scheduled appointments with the sleep doctor (me) in order to accommodate more urgent patients who may call in with an acute problem, especially one like “giving up.” With a few unfilled slots in the schedule, we can bring these failing patients into clinic the same day they call or within 24 or 48 hours, depending upon the urgency.
Still, these solutions can only achieve so much, and when it comes to mask issues we frequently make direct requests to patients’ DMEs for more immediate attention to the problems, and we find most DMEs accommodating when we have specifically identified the problem and requested urgent follow-up on their end.
Who to call and when to call remain big issues in the field of sleep medicine, and whenever communication between entities proves limited, frustrated patients report dissatisfaction with their care. As easy as it is to suggest improving communication will overcome these barriers between businesses, the current infrastructure simply does not provide a lot of opportunity to do so. As we move into the solutions section of the SAPCON report, we will extend the discussion to other sorts of problems while revisiting this communication issue as well.
Last year, Sleep Review Magazine published an introductory story about the SAPCON project, which focuses on collecting input from patients with sleep apnea as a way to “democratize” research and gain valuable insights to promote more effective treatments. Sleep Review published a follow-up story to discuss the preliminary findings, which you can read about here on pages 26-28.
This article is the fifth in a series, following:
Part 1 – They said I need a machine, that’s it?
Part 2 – So I have sleep apnea? So what?
Part 3 – Are there options besides CPAP?
Part 4 – Frustration rapidly leads to non-adherence
Fifth Challenge: Delays in diagnosis or outright misdiagnosis.
In this section of the study, the authors focus on the long-standing problem of diagnostic delays, which, for some patients, may be up to a decade or more. In particular, females and ethnic minorities demonstrated disproportionately low rates of referrals and thus diagnoses. The authors infer the crucial point regarding so many of these undiagnosed individuals: the development of cognitive impairment leads to executive dysfunction. In other words, these individuals may have greater difficulties in understanding the nature of their problem and become frustrated in their efforts to overcome it. We refer to this process as “the disease protects itself”, through which OSA damages the mind in various ways, the individual struggles to effect the best treatment options, and in many instances the condition defeats the therapy.
Another noted problem is the variability in sleep apnea phenotypes, meaning the signs and symptoms that patients describe to referring doctors, which then trigger a referral to a sleep center. This issue remains especially problematic, because so many primary care physicians still believe snoring and sleepiness are necessary symptoms to qualify for a sleep test.
In the last segment of their discussion, a quote from a patient regarding what presumably refers to expiratory pressure intolerance stated: “I can’t keep the mask on all night, it feels like it’s breathing against me, so it goes off.” And then a follow-up quote with a similar patient, speaking to the approach we use regularly among our second opinion patients: “One sleep doc told me I wasn’t giving it enough time. I’d struggled on PAP for years. Finally, a second opinion showed I had complex sleep apnea. My new [advanced PAP] treatment is making a massive difference.” This last example refers to a patient having waited years to ultimately receive the correct diagnosis, complex sleep apnea, which is the condition where standard PAP, usually CPAP but also from APAP or BPAP, triggers the side-effect of central apneas, thus requiring the use of more advanced technology.
These two points, delay in diagnosis, which is really delay in patient referral, and misdiagnosis are banes on the field of sleep medicine. Regarding the former, one would think the epidemic of sleep apnea would finally bring some urgency into the world of primary care. The pace of referrals in the various sleep systems may be increasing but nowhere near the capacity of what could be provided if all sleep centers were maxed out. Unfortunately, there is little to be done on this issue other than long-term strategies, because patients frequently do not take sleep issues seriously nor do their doctors probe for sleep disorders in an efficient and timely way.
Once someone is undergoing care in a sleep center system and attempting PAP therapy, the scope of opportunities is greatly widened to aid the individual. However, many sleep centers still do not realize how to expand their range of services.
We see numerous cases every week in which patients’ objective data downloads indicate the presence of central apneas. Many of these patients started at our center and were using either APAP, because they were directed to by an insurance carrier that denied them the opportunity for a titration in a sleep lab, or they were using ABPAP, an advanced PAP mode that provides very precise improvements in treating residual breathing events, but which also may trigger central apneas in a number of patients. Every week we are recommending to patients to return to the sleep lab for evaluation of these central apneas to determine whether an ASV device would prove more effective, presuming the patient will qualify for the diagnosis of complex sleep as described in the SAPCON authors’ example.
It should be bad enough that other sleep doctors are not picking up on this finding of residual central apneas and actively seeking to resolve the problem, but it turns out this system wide lack of responsiveness is a proverbial tip of the iceberg in the deeper problems affecting such patients. Commonly, when this issue is presented to other sleep doctors, a frequent refrain is to declare a few central apneas mean very little and should dissipate over time anyway. Interestingly, you will meet sleep physicians who marshal the same talking points when treating a CPAP user, who three years after starting still shows a small number of residual central apneas. Even if they cannot provide a rationale for the persistence of central apneas, they will fall back on “what are a few central apneas in the big picture?”
The finding of a just a few central apneas in any patient at any time is not necessarily grounds to immediately insist he or she needs ASV therapy, but the deeper problem is objective data almost unequivocally indicates a serious adaptation problem emerging, one that often does not resolve. The specific adaptation problem is the patient needs higher pressures but cannot tolerate higher pressures. Although unproven and difficult to research, our working theory describes this phenomenon as a simple mechanical response. Namely, the individual feels the pressure in the throat as a series of uncomfortable sensations, which then triggers the person to cease breathing in the same way someone feels a sort of breathing startle when sticking her head out of car window travelling at high speed.
The paradox here is the need for the higher pressures to eliminate residual breathing events (flow limitations, obstructive hypopneas, and obstructive apneas), yet the higher pressure triggers a mechanical response, leading to the iatrogenic side-effect of central apneas. Said more simply: shove too much air down someone’s throat and the brain reacts to cease breathing temporarily.
It should be clear to sleep professionals this double-bind is quite common in clinical practice, and it may be observed by more sleep docs and sleep techs than we can know, but it is not acted on in dynamic and timely fashion. And, in my experience and in my opinion of the larger field, I assume this double-edge sword is a leading and potentially the greatest single factor in preventing patients from long-term use of PAP therapy or in gaining anything close to optimal results.
This point of view when taken to its limit creates a great deal of consternation in managing patients whose health insurance systems consistently deny them the opportunity for more precise fine-tuning of pressure settings in the sleep laboratory. Although these barriers have been in place throughout the USA for several years, we are now seeing this rigid policy manifesting in more of our patients in New Mexico. And, I will mention of the last 10 patients on auto-CPAP (APAP) who have never been tested in a sleep lab for diagnostic or titration purposes, all showed objective issues on their data downloads that warrant further investigation under the microscope of the sleep lab. To date, only one of the 10 has received permission to be further evaluated in the lab.
Unquestionably, some of these patients are gaining benefits from using APAP, so it is not unreasonable the insurance carrier insists that mask issues and related leak and mouth breathing problems should be effectively managed from a cost-savings perspective by the DME company or by staff at the sleep center without the patient needing a lab retitration. We accept this perspective and work with patients through their DMEs or via our sleep techs to find solutions to these specific problems. However, when no solutions emerge as is common in 30% of OSA/UARS patients, and these same patients are manifesting residual breathing events such as flow limitations and central apneas, then the patient needs to receive a higher standard of care in the sleep lab. While all these patients are usually reporting some improvement in outcomes such as decreased sleepiness, nocturia, and insomnia, their completion of follow-up surveys for these symptoms often indicate sub-optimal results. Again, combining all this information to build a larger context on how the patient is responding to PAP should be sufficient grounds to convince the insurance carrier more advanced steps are needed for optimal management.
This larger context yields a very surprising insight, because the big picture turns out to be more than central apneas. When we try to treat flow limitation events, we objectively see in the sleep lab whether the patient tolerates higher pressures on expiration. When they struggle at this point, they show the objective finding (on the airflow tracing) called expiratory pressure intolerance or EPI. And, from our experience, we see the EPI before we see the central apneas emerging. In other words, EPI appears to be the pathway that leads to central apneas in some patients, and many individuals with OSA/UARS show EPI on CPAP, APAP, BPAP and even on ABPAP. Thus, a clinical and research question should arise on what can treat this pervasive problem of EPI prior to the onset of central apneas. Yet, this problem is only researched by a few groups in the world; and, the most remarkable finding to date is that ASV despite the absence of central apneas, offers a very precise capability to aggressively treat flow limitation while preventing EPI.
This last point has been lost in all the recent concerns and confusion about prescribing ASV in heart patients with severe congestive heart failure. But, even before this cardiac issue emerged on the medical landscape, nearly all sleep doctors presumed that ASV was only relevant to patients with central apneas, based on either of two conditions: primary central sleep apnea or complex sleep apnea.
Our view is based on anecdotal evidence in which we tested individuals with ASV who previously failed CPAP, APAP, BPAP, ABPAP and any possible expiratory pressure relief system such as CFLEX or EPR. All these patients showed EPI but did not meet the requirements for complex sleep apnea. Nonetheless, they were intolerant of all other devices and desperately wanting to treat their sleep breathing disorder. At that point, we recommended a trial of ASV in the sleep lab to determine whether or not it would indeed eliminate the problem of EPI, which resulted in most cases. Afterwards, greater than 70 to 80% of these patients reporting sleeping better with ASV, and several wondered why they could not have been exposed to this PAP mode earlier in their treatment course. Finally, when we appealed to insurance carriers in some cases with explicit details of the problems, some patients received coverage for the ASV device. As a testament to ASV, others who did not receive insurance coverage elected to purchase the device out of pocket.
Wrapping up, let’s return to the second point of discussion, sleep apnea phenotypes. This issue also brings us back to the relatively unsolvable problem of dealing with medical professionals outside the field of sleep medicine. In the setting of primary care clinics, these doctors, nurse practitioners, physician’s assistants, nurses, and various other support personnel often do not organize a cohesive intake system to capture more patients with OSA/UARS. As noted above, there a huge proportion of medical personnel still believe the combo of snoring and sleepiness combo is the only way to punch a patient’s ticket to visit a sleep medical center and receive diagnostic testing. As an aside, some of these doctors are now ordering their own home sleep tests (HST), and once again the same issue arises. Because they are not aware of deep connections between insomnia and OSA/UARS, these physicians are more inclined to not order the HST on the insomniac, but instead prescribe sleeping pills.
This particular phenotype problem is arguably the most frequent way for comorbid OSA/UARS to go undiagnosed among insomnia patients, but there are many more instances where the phenotypic presentation leads astray medical professionals working outside the field of sleep medicine. Some of the most common examples include patients with mental health disorders, especially depression and PTSD, chronic pain patients as well as numerous other medical conditions where the approach is to first rule out various medical disorders before raising suspicions about a serious sleep disorder as the primary culprit in the patient’s symptoms. For all of the above stated reasons, it is easy to see why some patients take up to ten years to receive the correct diagnosis.