We are all guilty of this...expecting more than we actually get. But is this true when it comes to PAP therapy?
CPAP, AUTOPAP, AND BiPAP therapy are very common treatments for sleep-disordered breathing. Not everyone who tries a PAP device can tolerate the therapy. But why? We’ve all heard the nightmare stories of “loud machines”, ill-fitting masks, humidification that does not work or is inadequate to meet the client's needs, large machines, not able to get new supplies...the list of issues, excuses, and “turn-offs” to this therapy is endless. In my 30 years as an RT treating sleep patients, I can tell you that I have heard it all!! But the reality is that PAP therapy WORKS! It really does. But the client has to be consistent and diligent about the treatment and he/she has to buy into a few things to make this work for them.
First, the client needs to believe that something is wrong with their sleep or the quality of sleep that they are getting. Many times, a client is unaware that they are not sleeping. They are not aware that they are experiencing multiple awakenings throughout the night, they are unaware of the snoring and gasping and pauses in breathing that others in the home may witness. Bed partners are usually the first ones to complain about what is going on in the bedroom during the night. The bed partner is also being affected by the sufferer's disorder and this is a big factor in why people get tested for sleep disorders. Going to a doctor or sleep professional may help the client understand what may be going on with the airway during sleep. A sleep test is usually the catalyst that compels the sufferer to move forward with treatment. The sleep test is an unbiased glimpse of the quality of sleep a client is getting. The systemic changes that are occurring as the sleep disorder goes untreated are the silent and dangerous aspects of this problem.
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Next, the client has to be aware of the options that are available to them for their sleep disorder. Although PAP therapy is non-invasive and the “gold standard” when it comes to treating most sleep disorders, not everyone wants to use a bedside machine for, what is normally a lifetime. Some will opt for surgery. If surgery is an option, there are many advances now in the type of surgery done to remedy the airway. Some surgeries remove the tonsils, adenoids, uvula, and any extra soft palate tissue to make more room for the client to breathe. Some of these surgeries are successful but many are not and the client ends up having to endure a fairly painful surgery and still not be rid of their sleep disorder. Remember, surgery comes with many risks. Infection, pain, and damage to other structures, to name a few. Surgery is best discussed with a surgeon who specializes in this type of procedure to see the pros and cons and if you are even a candidate. Some newer surgical procedures use implantable devices to pull the tongue away from the airway as it begins to collapse. Other options can include a “mandibular advancement device”. This is a custom-made oral device done by a dentist who specializes in this therapy. The user would wear the device which pulls the lower jaw forward to make more room in the back of the throat. Again, these alternate procedures need to be researched and discussed with a professional so the client can ascertain whether or not any of these would be a viable therapy for their sleep disorder.
Lastly, the client has to want to try PAP therapy as the first line of treatment. Most clients will have stories that they have heard from other sleep apnea patients who did not adapt well to therapy. As far as dispelling some of the PAP myths I have encountered over the years, here are a few that come up often.
“Once I start using PAP I can never stop.” People who suffer from obstructive sleep apnea have not developed this disorder overnight. It is an insidious process that tends to creep up on the sufferer. What starts out as some mild snoring can over time develop into loud, sustained snoring and gasping for air that is very disturbing (in many ways) to the bed partner. Weight is usually the driving force as to why obstructive sleep apnea gets worse. It’s actually a self-perpetuating problem of weight gain leading to worsening sleep apnea and worsening sleep apnea leading to weight gain. It’s not that this will be lifetime treatment, it’s more than for most people, it takes a long time to reverse the effects of untreated sleep apnea. Weight loss, lifestyle changes, and exercise can all help to bring the BMI and body weight into normal ranges. Once this happens, then it’s time to be retested to see if the sleep apnea is now under control or if it still needs some sort of treatment.
“The PAP machines are too loud (too big, not portable,) I’m afraid it will disturb my bedpartner”. My response to that is; your bedpartner has been putting up with all of your snoring and gasping, the PAP device should be a welcome change! The newer generation of machines is quiet, compact, adaptable to domestic as well as foreign currency, portable, and user friendly. Your bed partner should be thrilled to have you treated as it will enhance their own sleep quality and keep you healthier. If your bed partner has any issue in “how you look” with the PAP device on, then it’s time to find a new bed partner. This is not a treatment for “looks”, it’s for overall health...that message somehow gets lost in some partnerships.
“My friend couldn’t use his/her cpap. They could never find a mask that fit right/ or they hated the treatment, etc.” Here, I go back to my own experience as a woman when I was pregnant. I heard every nightmare story known to man about what can and may happen during labor. It scared me to death to think that I had to now endure this torture that I had been told about. Well, as we know, everyone’s experience in life is different. I wasn’t in labor for 170 hours and none of the things that people made me fearful of ever came to fruition. It’s the same thing with anything that is unknown. The best way to “know” is to “experience it”. Is PAP therapy for everyone...absolutely not. But millions of people throughout the world use this therapy with great success. If you have been diagnosed with a sleep disorder and your doctor/provider recommends PAP therapy, what do you have to lose? Maybe some money that you had to outlay for the equipment or ancillary supplies. Maybe a few nights of struggling to adapt. But in the long run, if the therapy works to prevent a future of health issues and costs, then the benefits far outweigh the time or money spent.
One of the biggest issues that PAP users report, especially in the first few months of treatment, is that they don’t see or notice any difference in how they feel after using the PAP device. I have set hundreds and hundreds of people up on PAP devices and it can be an instantaneous turn-around for some users but for most, the benefits of usage are not as obvious and can take some time to realize. Many times, the bed partner can notice the differences immediately...no snoring, no more gasping or pauses in breathing, the client is not as foggy when they awaken, they don’t fall asleep reading or watching a movie any longer. Some of the subtle changes that the user doesn’t see are very obvious to the bed partner or others in the household. It may even be noticeable to the person’s employer that something is different. For a lot of PAP users, it takes a while before they themselves notice changes, especially if they live alone. If only there could be a monitor on their sugar and cortisol levels, or probes on the brain to prove that they are now sleeping and benefitting from the quality of sleep they are getting. Most of how we feel is very subjective, and our expectations are high. We want a treatment that fixes our problem overnight. PAP is not a treatment that will fix years of damage and sleep loss /overnight, but with continued use, we know that we are keeping our heart and brain safer. We are preventing some of the collateral damage that sleep apnea can cause, like hypertension, diabetes, dementia, heart failure, obesity, depression, anxiety disorders, etc. Not to mention the toll this disorder takes on a marriage or partnership.
There are many barriers to using PAP therapy. Some are valid, but most are wrought from myths and conjecture and the input of others who have failed at this treatment. When you meet someone, who is successful with their PAP therapy and is noticing and feeling the benefits of this therapy, they will all say the same thing: “in the beginning it was difficult, I wanted to quit. but then I started to notice the difference. I started to feel better and wake up feeling better but it took a while before this happened. It’s one of those treatments you just have to stick with.”
So, what expectations should a new PAP user have? Expect to be a bit uncomfortable at first. You may not even wear it the whole night in the very beginning. Wear it when you are awake and alert in the beginning so that you have control and know what to expect when you use it for bed. Be patient with yourself. You have just changed the way you sleep after all these years. It will take some time to adapt to those changes. Don’t expect to feel different right away. Ask others if they notice changes in how you look and in your personality. Some changes are subtle and some can be validated with blood work (ie: changes in glucose or cortisol levels). Don’t expect things to go back to “normal” in your body right away. Your sleep apnea has been coming on for many years and it may take a while before your body chemistry and BMI to start to go back toward normal levels. Some of the damage that is done to the body by not treating the sleep disorder cannot be reversed. This is very unfortunate. Damage to the heart or brain is sometimes irreversible and can lead to many other body system failures. It requires education and on-going support to get a PAP client to be compliant with therapy and to remain compliant. This therapy requires persistence and perseverance in order to be successful. Once successful, the changes in how the client feels will far outweigh any barriers or reservations they had about the therapy.
A sleep support group is an excellent forum for any client who is on PAP therapy or is considering it. There they will be able to discuss the experiences they have had and give tips to others who may be reluctant to start therapy. Most, if not all, people who join sleep support groups are avid users of PAP therapy or want to be. It is a great way to find out about new products and any new breakthroughs in the field of sleep medicine.
PAP therapy, although a non-invasive treatment, is still not accepted by everyone. If you have tried PAP therapy and cannot tolerate it, have a discussion with your doctor or provider to see what alternatives you may have. Not treating your sleep disorder is not a good alternative. Lack of sleep and the havoc it wreaks on our bodies and our communities (think MVA or industrial accidents) is become more and more rampant and costing all of us more and more. Expectations for PAP therapy should be realistic and based on your own circumstances and health. No one is ever a failure for having tried!
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