The Comfort Factor in PAP Therapy Compliance and Use: Part II

The comfort factor may play a more pivotal and harmful role in patients who suffer fairly extreme reactions in their initial use of a PAP device in which they feel some type of acute compromise of respiration either in the form of choking sensations, suffocation, feelings of smothering or the experience of not enough air. Or, they may feel a “restrictive” feeling when a mask lays on their face. These severely unpleasant reactions, as best I can tell, are not rare or infrequent and may in fact be common. 

Imagine for moment—and just a moment please—what it feels like to choke or be smothered or to be without air. It is an awful feeling, because your mind-body is programmed to alert you to feel such sensations as an absolute emergency due to the direct threat to your survival. Unless you have received specific training in learning how to cope with and resolve these situations for example in scuba diving or other underwater military-related survival techniques, the average person will undoubtedly “freak out” at some point in the struggle for air. 

The emotions that instantly surface lead virtually anyone to panic, and of course in the case of a CPAP-induced episode, the immediate solution is to rip off the mask, which rapidly de-escalates the situation and normal breathing returns.

The problem going forward is to what extent would a CPAP patient recall the previous traumatizing episode, assuming he or she had a willingness to even re-attempt CPAP? More importantly, what is the patient’s capacity to process these memories so that unpleasant images of the event do not interfere with future efforts to use pressurized airflow to treat sleep apnea? Keep in mind this type of experience is how a posttraumatic stress disorder can begin. Consider this hallmark component of PTSD: “Have you suffered from a traumatic event, that is, a threat to your life, a serious injury, or a serious assault, which elicited a feeling of fear, hopelessness, or horror?” A single event of this sort may not cause someone to develop PTSD, but there is no question this experience can feel like a threat and evoke fear.

While there may not be data on how many people suffer these traumatizing experiences or how many patients recover to try PAP therapy again, it is interesting to note that searches in the scientific literature show scant studies on CPAP-induced suffocation experiences; whereas, searching the general Internet brings up hundreds of posts or articles on the topic. This discrepancy alone tells us a great deal about how the sleep medical community as far as research goes has less interest in examining this problem. To be sure, if you search for research articles on the topic of CPAP compliance and how to increase patient use of the device, then you will see information about desensitization techniques (1) and the need to help more vulnerable patients work through the process of adapting to PAP therapy without provoking these severely uncomfortable experiences such as claustrophobic or panic attacks.

I could only find two other research studies that actually gauged the prevalence of the problem. One study by Chasens et al revealed that 29% of the study cohort reported concerns about claustrophobia and CPAP, and among those who demonstrated the highest claustrophobic tendencies on the Fear and Avoidance scale, there was a greater potential to not meet adherence criteria for use of the CPAP device.(2) In the second study by Edmonds et al, 63% of patients reported claustrophobic tendencies following their first night of use of CPAP in the sleep lab. Either one week or one month later, the data indicated claustrophobic tendencies were associated with less adherence to CPAP.(3)

Unfortunately, these studies do not describe more about the claustrophobic tendencies, that is, they do describe the actual experiences in the patients, which no doubt may have included some individuals undergoing a traumatizing, claustrophobic response when first exposed to PAP or in the early adaptation period at home. Acknowledging that the proportions for claustrophobic tendencies listed were quite high at 29 to 63%, it seems most unlikely that all these patients suffered a traumatic episode. Yet, my sense is that the frequency of this specific overwhelming experience is higher than most professionals in our field recognize. And, I offer this supposition on the basis of my encounters with many 2nd opinion patients from other sleep centers as well as thousands of first-time PAP users at our own center. Anecdotally, it is very clear we encounter at least one patient per week who has struggled with PAP in this traumatizing way.

A woman I saw last week described this exact experience. Several years ago, she was able to use PAP therapy for a month. Then, all of sudden she remembers waking up a couple times with the mask on and feeling like she was choking or drowning. Upon further questioning, she realized the sensation was more about not getting enough air. Regardless, her memory of the experience was profound, and she was most animated in describing the episode despite its occurrence more than five years ago. After just two nights of these traumatic events, she never used PAP again. She only returned to our center because her cardiologist told her she needed to reconsider PAP to stabilize her heart rhythm disturbance. 

In effect, she had developed an acute traumatic stress response to CPAP and her continued avoidance to any consideration for re-using the device would be classified as a standard PTSD-like response to the triggering stimuli.   Even after we talked about what might have caused the problem, such as wrong pressures, poor mask choice, or her own anxiety about PAP, it was clear she would be needing a great deal of coaching and desensitization to retry PAP therapy again. She was adamant about not returning to the sleep lab at night “with all those wires” (the ‘restrictive’ component of claustrophobia), but she is currently considering whether or not to return for a PAP-NAP, our daytime desensitization protocol. A patient of this type with such severe traumatic memories from early attempts with PAP therapy could easily need multiple PAP-NAPs or retitrations to help her acclimate without dredging up the old anxieties and fears.

The first article I found on treatment of claustrophobia due to CPAP used graded exposure therapy to treat the problem. A quote from the abstract again reveals how common some sleep experts see the problem: “Continuous positive airway pressure (CPAP) is a safe, effective treatment for obstructive sleep apnea, and yet many patients develop claustrophobic reactions to the CPAP nasal mask and cannot tolerate this treatment.”(1) Graded exposure indicates the patient would need repeated encounters with sleep center staff, similar to our suggestion above for multiple PAP-NAPs, to eliminate the claustrophobic response through graduated efforts at desensitizing the individual to the pressurized air and mask.

As an aside at this point, one might ask what about OAT or surgery in this patient? Why even revisit PAP therapy? This refrain is commonly reported on the Internet or even in research articles when others want to promote alternate therapies. Though I am advocate for dental devices in certain patients or for some surgeries in OSA/UARS patients, there are a great many patients who also find the dental device generating its own type of claustrophobic response, and there are a great many patients who simply refuse to undergo surgery or who undergo surgery and regret doing so due to mixed results.  

Now, back to our main theme: if CPAP can cause enough discomfort to produce a traumatizing experience, what is the responsibility of the sleep physician to prevent this occurrence as well as a to find ways to “un-traumatize” the patient so he or she can take another shot at PAP therapy?

I ask the question in this manner because I sincerely believe that a sizeable proportion of patients are experiencing CPAP as a traumatizing experience, yet little is done to prevent this unusual form of traumatic exposure; given the enormous dropout rates of CPAP attempters, it is concerning that most sleep centers probably have not developed strategies to successfully re-engage these patients to start a new trial of PAP therapy.

Now, I accept I could be developing my own bias on this topic having encountered so many disgruntled CPAP failure cases. Yet, my intuitive sense about CPAP has consistently raised the question of why is the number of CPAP failure cases so large in sleep centers all around the world? Stories of CPAP failure are legion on the Internet and routine in research articles, and most introductory comments cite reference articles describing failure rates of 50% or greater. Assuming for the moment that 50% of patients who filled their PAP prescription quit using it and that among this large group many ceased use soon after initiating CPAP, it seems untenable that all these patients simply suffered from the “hassle” of using CPAP and then quit. 

Instead, I believe in many cases the hassle rapidly escalated to a very overwhelming experience, like the ones described above, including either a pressure-related trigger to a claustrophobic response or a mask-induced feeling of severe restriction. Taken together, these pressure and mask sensations are the most likely triggers that lead to traumatizing experiences; and these episodes could rapidly deteriorate to a severely adverse psychophysiological response to CPAP, after which such patients are lost to follow-up for months, years and sometimes decades.   

If these main points have validity, that is, a large number of CPAP attempters suffer rapid onset of claustrophobic responses, which in turn generate a traumatizing episode that leads to severe psychophysiological conditioning, namely, a mind-body sense that every subsequent attempt at CPAP will lead to the same traumatizing episode, then it would behoove the field of sleep medicine to look much more closely at this problem in order to find a way to fix it or ideally to prevent it. 

In the next part, we will drill deeper into these reactions and attempt to cast light on what the feeling of discomfort actually means among many CPAP failure cases and what may prevent or fix the problem.

 

References:

  1. Means MK, Edinger JD. Graded exposure therapy for addressing claustrophobic reactions to continuous positive airway pressure: a case series report. Behav Sleep Med. 2007;5(2):105-16.
  2. Chasens ER, Pack AI, Maislin G, Dinges DF, Weaver TE. Claustrophobia and adherence to CPAP treatment.West J Nurs Res. 2005 Apr;27(3):307-21.
  1. Edmonds JC, Yang H, King TS, Sawyer DA, Rizzo A, Sawyer AM. Claustrophobic tendencies and continuous positive airway pressure therapy non-adherence in adults with obstructive sleep apnea. Heart Lung. 2015 Mar-Apr;44(2):100-6

 

 

 


Barry Krakow MD

Author

Dr Krakow’s 27 years of sleep research have focused on the complex relationship between physiological and psychological sleep disorders. Dr Krakow currently operates private sleep medical center, Maimonides Sleep Arts & Sciences, Ltd., and serves as Classic SleepCare’s paid Medical Director.



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