Something must trigger the discomfort with CPAP, and we have already identified that pressure and mask sensations are the leading suspects. But, now, we need to confirm how and why these two stimuli produce the discomfort. If we can understand the nature of the problem, perhaps the solutions will seem more apparent.
With both factors, the pressure and mask uncover the problem of “distress intolerance,” a psychological term simply meaning what it says: you are intolerant to some form of distress. You may suffer from anxiety but when anxiety passes a specific threshold you become intolerant of its severity level, and you either seek help or if you are already using medication for the problem then you take another pill to quell the discomfort (distress) from the anxiety. In the case of pressure or mask sensations, if you quickly become intolerant of the distress triggered by mask or pressure, you have an easy fix: rip off the mask or turn off the pressure or both.
Why would some patients report mild discomfort from the pressure while others experience the pressurized airflow in a different way that eventually triggers mental and physical distress? In our experience, the answer is much simpler than most in our field seem or are willing to consider. The problem is often the direct effect of CPAP due to its delivery of continuous pressurized airflow. To make this point crystal clear, imagine you are traveling as a passenger in a car on a high speed road. Roll down the window and stick your head out and try to breathe in. For some people, this experience may be bearable, tolerable, even a little pleasurable, but for others the volume of air coming in is so large, the person “gags” on the air, so to speak, and would usually withdraw into the car to catch their breath.
For inspiration, it is not a sure thing you will feel overwhelmed with CPAP (or sticking your head out the window), but expiration against the air is usually a different order of magnitude of discomfort for any OSA/UARS patient more vulnerable to side-effects. If he or she were to breathe in while sitting inside the car and then move the head outside into the wind to breathe out, a strong feeling of resistance would arise not dissimilar to the initial experience of blowing up a balloon. However, a balloon would feel less threatening, because you can simply remove it from your lips; whereas, if your head were outside the car and the “experiment” were to test your ability to breathe out against the large wind coming at you, then your sense of threat would be higher. And, when you finished exhaling, you would need to inhale, but because you might have increased your anxiety levels when trying to breathe out, the next time you breathe in may be less comfortable and lead to a feeling like you are drowning in air.
Another scenario to imagine would be where you are taking normal breaths in with no added circumstances, but then to breathe out you must seal your lips around the opening of a flat balloon and try to breath out. Eventually, the constant effort and work to breathe out each time against the collapsed balloon would both tire you and at some point cause some agitation (distress). Afterwards, even though it would always be welcome relief to more easily breath in, your mind is soon going to be distracted and distressed by awareness of the need to forcefully breathe out again. Over time, the whole breathing experience, not just breathing out, becomes a self-conscious and decidedly unpleasant experience that reaches a point where the discomfort becomes emotionally disturbing.
These experiences are a reasonable parallel to what actually occurs when patients report claustrophobic responses to CPAP. The fixed pressure of CPAP may trigger a problem in a small proportion of patients while breathing in, but much more commonly, the severe problem emerges when breathing out. Keep in mind, this sensation of breathing out against air coming in could just be uncomfortable and nothing more for some patients. There is nothing that dictates it must lead to distress and eventually a traumatizing response, but therein we find a great clinical pearl. If we cannot figure out who is susceptible to the sequence of “discomfort begetting distress which begets a traumatizing episode,” then what is the clinical take home message to prevent it from happening in the first place?
If you recall our initial discussion about comfort in Part I, then you would quickly realize that you start by asking a patient whether or not the experience of breathing with pressurized airflow is comfortable or not? But as we discussed, some institutions do not permit this approach in the care of their patients and require all patients to start with CPAP no matter what they might notice during their initial exposure or desensitization to the device. To be clear, the staff at these other facilities may still ask the patient about their comfort level, but the patient’s answer does not change the circumstances: he or she will still need to start with CPAP.
You can see by all that we have discussed how problematic this lack of prioritization of comfort would be for someone who suffers a traumatizing experience with CPAP. Such an individual could actually go home, lie down in bed—without PAP or mask—and suddenly be reminded of the recent experience of lying down with the mask or pressurized air and start to feel renewed anxiety. If this scenario were to play out just a few times, the individual could easily adopt a negative psychophysiological response in which the bed and bedroom always remind the person of the unpleasant earlier experience with the mask or pressure. The net result would be insomnia even though the mask or PAP was never even brought home to use.
It is true that some individuals are much more prone to these sorts of side-effects. They may be suffering from the nocebo response, which you can probably guess is the opposite of the placebo effect. That is, the person has had so many side-effects to medications, they presume that each new medication attempted will lead to new side-effects, and lo and behold, each new medication thereafter tends to produce side-effects. Some CPAP attempters are probably suffering from this nocebo response, but regardless, they can still learn to use a PAP device if the sleep professionals caring for them are willing to pay attention to the comfort or discomfort from which they suffer when attempting PAP treatment.
To reiterate, this lack of attention to comfort is a serious problem, because a fair number of sleep professionals believe or are otherwise directed to place less emphasis on comfort to solve the distress caused by PAP. They may easily recognize the need to change out masks to reduce discomfort, but the same mindset does not usually carry over when patients report discomfort with pressurized air.
When sleep professionals do pay attention to the comfort issue, they will realize how important it becomes to change the pressure delivery mode for vulnerable patients. Last post, I mentioned the woman who was traumatized by PAP several years ago and only recently returned for evaluation. Just recently, she completed what may turn out to be her first daytime PAP-NAP. She recounted to the sleep tech all of her fears, anxieties and worries again, but by using advanced PAP technology in the form of an ASV device at very low pressure settings, the patient was able to go through the PAP-NAP with little discomfort and a renewed sense of motivation. As I mentioned before, however, she may need more than one PAP-NAP or retitration to resolve her anxieties and claustrophobic tendencies. In this PAP-NAP, she only dozed off briefly, but still willing to restart PAP at home at the very low pressure settings. Nonetheless, we may want her to return for another night time PAP-NAP so we can monitor her for a longer period. At night, we may more easily spot whether she can stop fighting with the pressurized air and whether she can subjectively report experiences of sleep, both of which would be strong prognostic signs she will successfully move forward.
Putting all this information together into one sentence, we would state that vulnerable patients feel discomfort with PAP, especially due to the expiratory pressure intolerance from breathing out against air coming in; and, if the patient could be switched to advanced forms of pressure relief from dual pressure auto-adjusting technology, there is an excellent chance their claustrophobic tendencies could be prevented or reversed.
The question that arises is whether or not other sleep medical professionals are willing to consider this approach when their patients are failing CPAP. Although no one can predict exactly who will suffer one of these traumatizing experiences, it is our duty as physicians to attempt to sort out who is likely to respond easily to PAP and who is at greater risk for disturbing side-effects. Failing to make any effort to discern between these two types of patients would not be considered medical malpractice, but if a physician continued to push CPAP on a patient who was regularly reporting distressing claustrophobic response, it is in fact doing the patient harm. In such cases, the physician is not working in the best interests of the patient and needs to recognize the problems caused by CPAP so an alternative treatment approach is offered. Again, it remains unclear how many sleep medical professionals including physicians and sleep technologists recognize their obligations and potential solutions to these types of occurrences, which are by no means rare. Despite the fact that switching patients to advanced PAP device turns about to be an easy solution in many instances, a large proportion of sleep professionals either do not believe this approach is valid, or believe it is somehow too costly, or simply are ignorant of this approach to care.
I believe if more sleep professionals simply recognized the source of discomfort as being directly linked to expiratory pressure intolerance, then changes in sleep medical care would disseminate rapidly in our field. However, I think the reason this knowledge does not disseminate in a way that common sense might anticipate is that so many in our field are wedded to the belief that educating a patient on these issues actually solves the problems.
It is true that educating a patient on the nature of expiratory pressure intolerance is valuable and can lead to some minor reductions in discomfort and maybe even distress, but in a nutshell, the problem is rarely resolved by talking about it. Comfort is an experiential issue. If you give someone a more comfortable mask or more comfortable pressure (e.g. ABPAP, ASV), they often immediately respond and declare that they have been relieved of their discomfort. Despite initial concerns for a greater cost to this level of care, if the long-term prospects for greater adherence are borne out, then most research suggests everyone wins out: the patient is using PAP and the healthcare system is gaining by cost savings from the greater quality of health achieved in the patient who was previously racking up expenses for all manner of diseases and conditions festering in an untreated case of OSA/UARS.
If the doctor offers you two choices of drugs: the first works better with less side-effects and the second works so-so and with more side-effects, everyone would choose the first if cost were not a factor. If using ASV or ABPAP yields considerable cost-savings, because patients are now willing and able to “take their medicine,” then advanced PAP technology should be the “drug” of choice.
While this ends the three-part posts on Comfort in PAP Therapy Compliance and Use, I hope it jump starts a process for many patients to be able to attempt new PAP experiences with newer technology as well as encouraging sleep medical professionals to consider these new solutions to an old problem.