Musing on "I have heard terrible things about CPAP" ...

On one of the boards I frequent, yet another newly diagnosed OSA sufferer wrote

I have heard terrible things about these [CPAP] machines.

It's not uncommon for newly diagnosed folks to write something like this. I believe these kinds of statements express the newbies' concern about the "horrors" that they has heard of concerning CPAP therapy and I also believe these statements touch upon an unspoken fear that the author is deeply worried that he/she will not be able to adjust to CPAP. And I think that worry is a pretty common concern among folks when they are first diagnosed.

After all, it is true that CPAP has a very bad reputation out there. That reputation is based on a number of things, including a certain, shall we say, psychological knee jerk response to being told we have to sleep with a six foot hose on our nose every single night, all night long for the rest of our lives: I have to sleep with THAT thing on my face for the rest of my life? HOW the heck am I supposed to do that?

And the fact is: Many of us do have to work (and work hard) at learning how to sleep with a hose on our nose at night. But in the grand scheme of things, at least the machine is just blowing slightly compressed room air down our airways while we are asleep, and hence (largely) unconscious. It's not like we are confined to a wheel chair for the rest of our lives. It's not like we are being tethered to an oxygen tank for 24 hours a day. It's not like we have to to prick our fingers multiple times a day to draw a blood sample and then inject ourselves with insulin. And it's not even like we are being told we need to take daily medicine that is known to have serious common side effects.

But it is also true that many new CPAPers give up in frustration as soon as they hit the first set of problems: Problems that seem insurmountable, but are not. Problems that no matter how bizarre they seem to the new CPAPer have undoubtedly been faced and solved by many a successful CPAPer. The folks who work in sleep medicine are concerned about the large numbers of new CPAPers who just give up. And studies have shown that quality patient education about OSA, its potential serious consequences , how the CPAP therapy works and quality patient support in helping to resolve common comfort problems at the start of learning how to sleep with a CPAP both dramatically increase a patient's chances for making CPAP work for him/herself in the long term.

Unfortunately, quality patient education and support can be hard to come by. The lucky newbies find a forum like cpaptalk.com or apneasupport.org. And once a newbie finds a forum, it can provide the education and support the newbie needs in his/her effort to make CPAP work in his/her bedroom every single night.

But the one thing we at the forums cannot provide is will power and commitment to doing the necessary work. So if you are newly diagnosed with OSA remember this: It really is up to you. You can decide their life and health is worth the effort and make a serious commitment to doing everything you can to adjust to therapy for a period of several months to a year before declaring the experiment a failure. Or you can decide to give up and continue living with the growing negative influence of OSA and its effects and consequences in your daily life.

And please understand: I say these things as someone who has had a long and difficult adjustment period to CPAP. But in the end, I'm very glad I was stubborn enough to not give up. The first three to four months of my PAP therapy were hellish. But by the end of month five, I was starting to notice a few subtle small and totally unexpected positive changes in how I felt when I woke up each morning. In particular, I was starting to wake up on some days pain-free: As in no headache and no pain in my hands and feet. Pain that I'd been waking up with for a number of years. And in my sleep log, phrases like, I woke up almost refreshed and somewhat rested started to appear. By the end of month six, I was waking up pain free as often as 5 or 6 days out of every week. And occasionally I was noticing I was genuinely refreshed when I woke up in the morning. And now? I'm 14 months into therapy and on my best days, I wake up feeling like I felt back in my 30s---some 20 years ago. My biggest complaint about CPAP these days is that I am greedy: I want all my days to be like those best days. But even on my more typical days? I am finally feeling quite a bit better than I did before CPAP on most days. On most days, I wake up feeling like I have gotten some high quality sleep: I wake up feeling rested and usually refreshed.

And as for the still overwhelming notion that I will have to sleep with the hose the rest of my life? I deal with that one night at a time. Each night when it is time to mask up, I only focus on tonight. I tell myself: Tonight I'll put the hose on so that I'll feel decent tomorrow morning. I don't allow myself to think about or worry about all those nights in the future. And slowly, but surely, putting the hose on my nose is becoming a habit---one small part of my bedtime ritual rather like brushing my teeth is.