As we left off, what should the average patient expect when undergoing his or her personal PAP saga and how long should one endure this process?
To start, the single biggest determinant on how long you should struggle is how much benefit you can appreciate in the early going despite all the hassles. If there’s no benefit….worse, if there is harm in that sleep is further degraded, then very few people keep at it more than few days to a few weeks. And, I think this quick release is not at all unreasonable from the patient’s point of view. It is a big deal to try to use PAP therapy, but if all you receive in return is worse sleep or no clear-cut benefits, why would you continue to use the device?
For these explicit reasons we aggressively work with our patients from Day One to get them not just using but gaining benefits at the same time. Here’s the best example to demonstrate this perspective. It has been proven by several research groups that when a person uses PAP for the first time ever in the sleep lab and notices having “slept better” on just that first night, there is a much higher probability the individual will subsequently achieve regular use of PAP therapy. In contrast, if a sleep apnea patient reports no improvement in sleep or reports worse sleep on the first night, then this person has already lowered his or her chances of becoming a long-term PAP user. Given the consistency of this finding, then, why would any sleep doctor prescribe a PAP device following a titration in a patient who was not reporting sleeping better that first night?
What should we do with the patient who reports not sleeping any better with PAP? Often, we do not prescribe the device at that point in time. We bring the patient back for a PAP-NAP, our daytime desensitization procedure to more gradually introduce the individual to the device. On the same day as a PAP-NAP, the patient might also complete a clinic appointment with me to discuss the PAP-NAP experience as well as current motivations or lack thereof going forward. Occasionally, the patient’s bad night of slumber on the first titration was a one-off experience (e.g. bedroom was too cold or no satisfactory mask found), and such a patient may choose to return for another full night titration. In other cases, there is no possibility of persuading them to move forward with PAP; instead, they start with OAT or oral airway surgery.
So, one of our main rules of clinical management is to almost never prescribe a device until the patient can report at minimum a modest sense sleep felt better with PAP. With this rule in mind, the majority of patients who initiate PAP realize and maintain some benefits in these first few days and weeks, which then permits all remaining aspects of care to focus on numerous tweaks to optimize the response. For these patients, we do not need to waste valuable time and effort trying to get them to experience better sleep. They have already achieved this primary goal, so they are the easiest group of patients with which to work.
The next most important rule, one that sometimes requires priority over the “better sleep” rule, is “comfort, comfort, comfort.” One reason a patient might not report sleeping better is mask discomfort, which can include mask leak, irritation, or frank pain. But again, why prescribe a PAP device if the individual is going to use it at home, only to suffer discomfort or pain? Answer: do not prescribe PAP for this patient. Instead, we use the PAP-NAP or successive brief mask fitting appointments to resolve these problems before writing the PAP prescription.
As you can see by our two rules of “sleeping better” and “comfortable masks,” we might need to postpone the actual start time on the patient’s initiation of PAP. We want to create the highest possible chances for immediate benefit coupled with no discomfort or pain so that these two experiences are achieved the very first night or the first few nights of use. If there is a preliminary and strong potential for the adaptation process to be lengthy, we then look for every conservative treatment step available and appropriate to that patient. For example, we might focus on an aggressive nasal hygiene program coupled with positional therapy. Or, if the person appears to also suffer co-morbid restless legs or leg jerks, we then encourage the patient to start medication or vitamin/mineral supplements to treat this problem before going forward with PAP.
In highly sensitive patients, we may need to conduct more than one PAP-NAP and more than one mask fitting appt. While they might have filled their prescription for PAP, our clear instructions to them are to not use the device on a regular basis from the get-go. Instead, we want to enage them to work diligent on their mask comfort issues and their efforts to feel comfortable with pressurized airflow. Thus, these are the folks who might only try out the PAP device on the weekends and forget about it during the week. These are also the folks who sometimes receive prescriptions for pressure settings far below what we titrated in the lab, but which are at the highest tolerable levels. In this latter case, the ideal scenario occurs when the patient contacts us a few weeks or months after starting out with low pressures and requests in the strongest possible terms a need for higher pressure settings.
From these two major goals (sleep better, comfortable mask), everything else tends to fall in line, but not necessarily quickly. The most common persistent problem that interferes with success is a mask that’s comfortable but still leaks. Thus, you might find yourself feeling positive about PAP, using it much of the night, and noticing some benefits. But, your benefits will never optimize until mask leak is resolved. This single issue can go on for what seems like forever, and as you can imagine, it is something a person must endure until good to excellent control of leak is achieved. In this setting, the person could be spending weeks or months and even years working to improve leak with mask liners, mouth taping, and above all serial mask changes.
Would someone stick with PAP therapy if he or she must constantly address mask leak or related mouth breathing concerns? The answer, of course, is it depends on what these individuals gain in the interim? The worst possible scenario are among patients whose leak is so high, they can never attain a good night’s sleep with PAP; and these patients are much more likely to use PAP intermittently or eventually give up.
Truly, the main lesson to appreciate is that you can probably endure a lot more of the hassles of learning to use PAP if you are realizing some benefit from the device. If you gain some benefit and the experience is mostly comfortable, that’s another advantage to keep you moving forward on the path to regular use. If, on the other hand, you require so many tweaks in the system and yet never gain benefit, your endurance to suffer through the struggles of PAP therapy will demoralize you sooner than later, and you will eventually discontinue use.
When you work with your sleep center and your DME company, find a way to get some early benefits and be finicky about mask comfort. Keeping these two goals at the forefront of your efforts will yield the greatest chances for your long-term success.