When You Stop PAP, How Do You Start Again?

Many patients, probably more than most people think, stop and start PAP therapy over various time intervals. One might imagine that if a patient is gaining good benefits from PAP, then there would be few circumstances leading someone to cease use of the device; but, in reality, there are numerous situations and conditions that lead to temporary stoppage. In the worst case scenario, halting PAP therapy on occasion leads to long-term lack of use, even though the interrupting influence might seem trivial. For these reasons and more to be discussed, it is important to pay attention to some key markers during the episodes of stopping and re-starting, so that the stoppage lasts as briefly as possible, meaning the restart ensues as quickly as feasible.

While it often turns out the reason for stopping is not the most crucial factor of cessation and thus may play less of a role in the re-initiation, it is still worthwhile to consider why a person would stop PAP. The list of reasons generally breaks down into clear-cut problems either with the device or the lack of benefits from the device or the broader category of what appears to be “for no good reason.” Keep in mind, our discussion is not about people who have never adapted or gained benefit from PAP. We are discussing patients who would seem to be in a category where they would never want or need to cease PAP use, because they have gained considerable benefits from its regular use.

Probably the two most clear-cut stoppages occur when patients suffer respiratory infections or when equipment issues compromise use in some way. Colds or coughs can make it nearly impossible to use the device, and ironically they both may worsen OSA/UARS and then the patient is left without use of the machine—a veritable double whammy. Equipment failures run from old mask cushions, hard to detect leaks in tubes or masks, pressure delivery errors, and overall machine malfunctions. Other inter-current illnesses can hinder efforts to use the device, for example, undergoing surgery or breaking a bone. Some will not or cannot easily travel with their devices. 

Device side effects also cause cessation. Developing skin lesions on the face or other irritations requires taking a break from the device until healing is completed. Air swallowing is more common that most sleep doctors seem to realize, and if it intensifies from the mild to moderate level of severity, you will see a fair proportion of patients cease use temporarily or just give up. Other side effects though less common also trigger irregular use or cessation such as headaches from headgear, exacerbation of nasal congestion or sinus issues, soreness in the teeth, jaw or TMJ joint from chinstraps and the surprising worsening of low back pain in patients who are sleeping so much better with PAP that the “loss” of their tossing and turning behavior at night apparently causes the back muscles to tighten up.

The “for no good reason” categories often revolve around vanity or convenience issues. Women may stop because the headgear prevents them from styling their hair the way they like. Some men and women stop because they perceive PAP prevents a romantic atmosphere in the bedroom. Others report the inconvenience of putting on the gear at night, regardless of it taking less than 60 seconds for most patients. Others complain about the cleaning and maintenance. Others just stop because they insist modern medicine should have discovered a pill by now to deal with sleep apnea.

In comparing the two groups, it is obvious that those with a more specific problem with PAP are more likely to want to reinitiate PAP soon after the triggering event. The best examples are those patients suffering an upper respiratory tract infection whose sleep rapidly deteriorates during the few days or few weeks of the intercurrent illness. These folks are desperate to get back on PAP, and there’s virtually no stopping them from doing so as the re-emergence of their sleep misery drives them to regain their prior excellent sleep health. Among the other group whose reasoning suggests a hidden agenda, you can imagine if someone places a higher priority on hair styling than on sleeping better at night and feeling more rested during the day, then clearly other factors are in play that may preclude not only immediate reinitiation of PAP, but also such a patient may forego PAP for lengthy intervals due to concerns about appearances being of paramount importance regarding well-being, work, or social life.

At this point, you can see the interruption itself may be easily overcome in the circumstance where something can be fixed (e.g. replacing a mask, recovery from a cold, using mask liners to prevent skin irritation), but when the something seems more intangible (e.g. inconvenience, vanity, misplaced priorities), a sleep professional will often discover the patient may need a longer time to get started again with PAP therapy, and such patients may need the guidance of a mental health professional. 

When my staff or I meet with patients in these circumstances, we are always trying to sort out the pragmatic from the intangible issues as fast as possible. We can almost always tell when we are dealing with a pragmatic problem, because patients will report frustration about no longer gaining benefits due to the absence of PAP therapy while simultaneously aiming for a rapid solution so they can renew treatment right away. These individuals show more initiative; at the appointment they ask questions and offer theories about what might be causing the problems that led to cessation of the breathing mask treatment. Solving these problems is not always straightforward and expedient as in the case of finding the right headgear to prevent headaches, but you can tell by the patient’s persistence and motivation that the sleep professional and patient are working collaboratively to rectify the situation.

Patients who suffer PAP cessation after a “for no good reason” episode are much more complex individuals, and their chances are much lower for a rapid turnaround. The discussion almost always starts with an attempt to clarify the nature and degree of benefits the individual was receiving prior to the cessation. If the patient reports the benefits diminished preceding device cessation, then chances are almost zero he or she will be motivated to restart the device. To be sure, it is rather a remarkable feat to get anyone to use PAP in these circumstances when the patient was not recently noticing benefits from the device. In related cases, a doctor may have explained the need for PAP to enhance blood pressure control, yet things might not change until the emergence of a hypertensive crisis, or sadly, after a neurological event like a TIA or stroke. Then, the motivation springs into action.

Among those who were receiving more clear-cut benefits, the improvements in sleep quality or daytime symptoms are generally the best way to initiate discussions about resuming care, because once the patient is reminded of the benefit, it is a natural human tendency to want to renew the experience that provided these gains. Still, while this first step is the natural gateway back to PAP use, the real problems for the “for no good reason” crowd are so much deeper and so much more psychologically oriented, the skills needed for successful resumption may go beyond the capacity of a sleep specialist.

A common example of the more difficult group involves romance factors. Any change in appearance such as hair styling or marks on the face affect individuals not only prone to vanity issues, but also these people are more reluctant if currently single or in a more fragile or delicate stage of a relationship. Often, these are the folks who verbalize that wearing a PAP device is like being handicapped, and they may profess sentiments such as “who wants to have a crutch to sleep every night?” Countering these arguments is relatively easy in pointing to the effects of PAP that produce more energy, vitality and slower aging, not to mention generating greater libido. But, even these facts do not always change a person’s mind. Thus, a mental health professional and possibly a behavioral sleep specialist may be the only types of providers to get these types of individuals to climb back up on the saddle.


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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