Read what Dr. Barry Krakow, author of Sound Sleep, Sound Mind: 7 Keys to Sleeping through the Night, has to say about my new book, Totally CPAP. This is Part 4 of a multi-part in-depth, critical review. This is taken from his blog. Read Part 1, Part 2, and Part 3. For those of you who refuse CPAP due to claustrophobia, Section 7 is a must read.
In Chapter 6, Dr. Park addresses the top 15 questions he is asked most frequently or which arose in the past five years during his extensive work interviewing experts in the field and in his own teleseminar series Ask Dr. Park. We’ll list each of these topics, note Dr. Park’s pearl, and where relevant add a pearl of our own.
1. Dry Mouth
Switching to a full face mask or applying a chinstrap are good options, and we would add that a substantial proportion of patients must use them simultaneously. We have also found RemZzzs mask liners solve the problem in some cases when the individual rests their lips against the bottom and wider half of the liner. Dr. Park also points out the necessity how for finding the correct humidification level for some cases of dry mouth.
2. Mask Leak
He covers many key points here, some usually not conveyed to patients, such as how masks can actually be worn too tightly and paradoxically cause leaks. He also mentions that leak can occur in the hose or the device itself, so these areas must be checked. As above, we would mention that mask liners can decrease leak, but one must learn to apply them with great precision as in some instances they can exacerbate leak. Last, he mentions how facial hair issues frequently must be addressed by shaving, but we have recently heard about CPAP beard sealants in use, but we have no first-hand experience with this approach.
3. Device Noise
Check for leaks and confirm your CPAP machine works properly. If it didn’t make noise previously and just started doing so, you might need your DME company to check it out. Ear plugs are recommended as a last resort, and I would add it is important to find the right decibel level usually 32 to 33 for the best results. Recently I found excellent ear plugs with a 33 rating at Walmart, and which have a smooth surface to avoid irritating the skin inside your ear. I don’t use earplugs because of the noise of the machine, but instead, the whine of the device is too high-pitched, and earplugs blunt this specific noise issue.
4. Mask Coming Off
In this one there is a lot to discuss, although for starters Dr. Park does a good job of explaining the mechanical aspects of properly hanging or otherwise situating the tubing so it does not become tangled, which then could lead to inadvertent leverage on the connection between tube and mask. In our clinical experience, such events are rare, though certainly plausible depending upon how your equipment is setup.
The more likely problems that lead to masks coming off are related to patients removing it unknowingly, and the most likely trigger for removal is the patient experiences a breathing event or a series of breathing events for which PAP has not effectively treated, usually due to the wrong pressure settings. The converse situation also arises where the patient is receiving too much air either objectively due to settings too high or subjectively because the patient cannot tolerate the settings. These scenarios are so common in clinical sleep medicine, they often lead to CPAP rejection for obvious reasons. It is therefore crucial to discuss with the patient the likelihood of these situations so that critical short-term adjustments can be made to yield immediate relief. Or, the patient needs to return to the sleep lab pronto to sort out the difficulties. A major complicating factor is observed in patients with leg jerks, as this disorder of excessive movement also interferes with the stability of the mask seal and, in and of itself, may lead a sleeping patient to reach for the mask to adjust it or yank it off.
5. Allergic to Mask
Dr. Park makes a number of knowledgeable statements on this issue, and we concur with his recommendation to try mask liners. We would also add consideration for the Dream Weaver series of mask, which are made from cloth. Though these masks are difficult to fit properly and are often prone to leak, the company has worked diligently through the years to solve these issues, and their product has proven miraculous for select patients unable to use any other mask system.
6. Chest Soreness
I am glad Dr. Park mentions this issue, not because we see it frequently, because we do not. Rather, the severity of the problem is sufficient to cause CPAP rejection. We like his idea to switch to bilevel, but even with such changes we have not always seen improvement. Our current model is to put the patient on ibuprofen for two to four weeks during the adaptation period and then gradually taper off the medication to see whether the chest soreness persists. In several cases, this approach solved the problem, but in a few cases we have seen nothing work, after which patients might switch to OAT.
This issue is near and dear to my heart, since I’ve spent the past two nights providing interventions and coaching for two severely claustrophobia patients in our sleep lab. At some point, I hope to film a mock session demonstrating how we approach this problem. Here, I’ll go through the main principles for helping patients overcome the problem. First, we start out by clarifying whether the patient is reporting claustrophobia due to the mask or the pressurized air or both. Most people report both, but when probed, greater than 90% report the pressurized is the worst part of the problem, because they feel as if they are “drowning in air.”
This comment serves as the perfect segue as it opens up a discussion on the nature and experience of claustrophobia. The patient recognizes instantly that the main complaint of claustrophobia is one cannot get enough air, or there’s a feeling of being unable to catch one’s breath. These clarifications help the patient recognize the irony involving a diagnosis of sleep-disordered breathing in which one also cannot get enough air. The follow-up comment of course is that pressurized air is designed to give you enough air. Just this single insight shifts patients into a new mindset, because they are almost obliged to realize that PAP claustrophobia isn’t anything like the claustrophobia of being locked in a closet or smothered with pillows (two of the most commonly reported childhood experiences causing a claustrophobia disorder). Most patients accept this new perspective, which facilitates a transition to re-defining PAP claustrophobia.
Now, we broach the topics of “control of breathing” and “attention amplification,” the latter of which in a nutshell means CPAP delivery of its unnatural pressurized flow of air will instantaneously cause the patient to pay so much attention to the sensation of the new and awkward air flow, it actually makes the sensation more intense (amplifies). Most people who already suffer from anxiety (claustrophobia is an anxiety disorder) are particularly sensitive to this amplification response. And, as the uncomfortable feelings grow in intensity, you guessed it the patient pays even more attention to the feelings such that the sensation’s intensity becomes intolerable. Ultimately, the patient tries to control his or her breathing cycle, believing that synchronization with the machine’s pressure delivery will somehow resolve the problems. This “control of breathing” response invariably makes the problem worse.
This process is exactly what occurs in greater than 90% of patients who are reporting claustrophobia due to pressurized air. Once they acknowledge this process, patients become open to the third and curative intervention they themselves can introduce into the equation. This final step is called imagery distraction. Simply put, when you put CPAP on, you must avoid thinking about the mask or the pressure by instead delving into your mind’s eye as if you were daydreaming to picture pleasant images and memories, for example your most recent and pleasurable vacation. Shielded within this visual mental space, it is virtually impossible to engage in attention amplification or control of breathing, because you are distracted by something far more interesting and pleasurable. Most patients can immediately feel some relief from this distraction, and more advanced patients will quickly connect the dots to realize they have tremendous control over these problems if they choose to rapidly find a way to ignore the mask and the pressure. Though it should go without saying, it is nearly impossible, physiologically or psychologically, to adapt to PAP therapy by trying to harmonize your breathing with the PAP air delivery cycle.
Although we concur with Dr. Parks’ recommendation to consider assistance from either a behavioral sleep specialist or a psychotherapist who works with claustrophobic patients, the routine described above can be learned by any competent and motivated sleep technologist. In the two instances of my experience this week, I was working with two newly trained sleep techs at our center. I used this methodology simply by chatting with the patient over the phone for about 10 minutes while the sleep tech listened in. Both patients were ready to call it quits and bolt from the center. Yet, after the brief conversation both patients spent the night using a modified PAP-NAP procedure to engage them periodically in efforts to go back and forth with and without the mask to attempt the imagery distraction. The first patient did not fare so well, only trying out the technique for a few minutes during the night. The second patient who actually appeared to suffer from more severe claustrophobia not only remained most of the night, but at one point was able to use PAP therapy for 3 straight hours. Only time will tell as to whether each of these patients will be able to make the effort to go forward with PAP.
8. Sinus and Ear Pain
I defer to Dr. Park, a board certified ENT and sleep specialist as he points out that persistence of this particular set of symptoms may require a visit to an ENT physician.
9. Stomach Bloating (aerophagia)
Dr. Park hits nearly all the right notes on this one, pointing out how applying a chinstrap, adding an expiratory pressure relief mode, or switching to bilevel can solve aerophagia. He writes a lengthier and detailed explanation on the problem of reflux triggering air swallowing that is spot on and indicates the dual need to not only treat the reflux with appropriate treatments, but also to appreciate that treatment of OSA/UARS itself may help reduce reflux. Although research is rare on the role of leg jerks in aerophagia, at our center untreated periodic limb movement disorder is the single most frequent cause of the stomach bloating, and we can only theorize that the leg jerks somehow trigger the patient to swallow, presumably due the leg jerk triggering arousal activity. Remarkably, about 80% of patients treated for leg jerks who reported co-occurring stomach bloating noted the immediate cessation or at least a large decrease in aerophagia with successful treatment of the leg jerks.
10. Stuffy Nose
Dr. Park promises a more lengthy discussion of this topic in Chapter 8 where among other approaches he delves thoroughly into surgical interventions. Here he recommends the usual treatments for nasal congestion, including unique aids such as nasal dilator strips and assorted products that fit into the nose to dilate the nostrils. In our clinical experiences, where we have observed a great deal of nonallergic rhinitis in OSA/UARS patients, we are very high on the use of nasal sprays beyond the typical steroid nasal inhalers such as Flonase, although we understand that some nasal steroid products like Sensimist and Budesonide seem to deliver the drug in a different sort of aerosol that might prove more effective than standard sprays in the treatment of allergic rhinitis. However, for nonallergic rhinitis we have seen fantastic results with Ipratropium (Atrovent) or Azelastine (Astelin). These drugs may go under various brand names, but we highly recommend them in patients who are failing nasal steroid sprays, because such individuals almost invariably suffer both allergic and nonallergic rhinitis.
11. Weight Gain on PAP
Like Dr. Park, we have seen numerous patients gain or lose weight on CPAP or experience no change at all, and we concur with the recommendation to start an exercise program when your energy levels start to improve with PAP therapy. Likewise, evaluating and refining your diet and dietary intake is always advisable for someone with concerns about obesity. The only addition we make here is the recognition of a key psychophysiological factor that occurs once you start PAP. More energy for some people may induce a great desire for exercise and potential weight loss or improved fitness. However, some people the increase in energy appears to alter the patient’s appetite. Thus, psychologically if you are someone who notices your appetite increasing with your newfound energy, do not be surprised if you gain a few pounds or more.
12. I can’t fall asleep (with PAP)
Dr. Park mentions the standard sleep hygiene approach to insomnia as well as the need for sedatives in select cases. He also mentions the use of his mask acclimatization exercises, such as reading with the mask on to overcome any anxiety. Our clinic makes use of these strategies, but we tend to focus more on the use of the same imagery distraction technique described above to treat claustrophobic tendencies. In fact, mental imagery often catalyzes brief “dreamlets” otherwise known as hypnogogic imagery, which typically occur as you are falling asleep. Many patients have informed us over the years that spending time in the mind’s eye can serve as an extremely rapid way to induce sleep onset. So, it’s actually a two-for-one where you learn to ignore the mask and pressure while simultaneously moving your mental landscape towards the Land of Nod.
13. Pressure Too Strong
Dr. Park mentions the use of the ramp, which is invaluable advice for PAP beginners and may be required for several weeks or months for some patients. Switching to advanced PAP therapy is also recommended because dual pressures provide expiratory pressure relief. It is this particular problem that has led us to cease prescribing CPAP in general unless forced to by an insurer. Because comfort is such a critical factor in PAP therapy adaptation, we want to see the patient gain a comfortable experience as soon as humanly possible.
Dr. Park has a box insertion in this section that once again highlights his precision approach to sleep medicine. He points out that two areas of obstruction may also interfere with one’s use of PAP and thus lead to further problems, which no doubt could exacerbate problems with both falling and staying asleep. The first area is the soft palate tissue (that rests behind the roof of your mouth) and the second area is the epiglottis (this tissue closes over your windpipe to prevent respiratory aspiration when swallowing food). Given his extensive work with the endoscopy tool, he reports that certain patients suffer unexpected closures of the airway when the soft palate or the epiglottis functions improperly. In his experience, surgical intervention is the key to resolving such issues. I have to admit it makes me wonder how many CPAP failure cases never received such a thorough ENT evaluation.
14. Skin Irritation
Some of this material has already been addressed regarding mask leak because the tighter you pull the headgear the more marks on your face. We concur with his recommendations for mask liners as the major intervention. He mentions PadaCheek, and we have also had great success with RemZzzs.
15. Water Leaking into Mask (rainout)
This area is tricky and Dr. Park makes several recommendations, but the bottom line is this problem often requires a great deal of finesse to sort out, so I strongly encourage our patients to return to our center or their DME to take the proper steps regarding changing the humidification (manual vs auto), understanding the principles of the room temperature impacting the water temperature in the chamber of the heated humidifier, and the use of various external contraptions such as hose wraps or blankets to find the right combination of steps to solve the problem. We also want the patient to be highly informed on the topic, because as seasons change and heating and air conditioning are switched out every year, rainout can often re-occur. Rainout itself is usually more annoying than a serious side-effect, although some people will experience a rush of water into their nose while lying down, which is more than just uncomfortable. More commonly rainout will awaken you from sleep either because of the dripping of water into your mask and nose, or because it can cause a high-pitch whine. With this level of complexity, visiting your DMD or sleep center is an essential step for many patients.