Posted by: Jan | April 27, 2010

Realistic Goals and Expectations are Key for CPAP Success

Once I was willing to even consider trying CPAP therapy, the next big hurdle was actually using it.  There were many reasons why I was certain this was NOT going to work for me.  As a matter of fact, I spent time thinking up lots of excuses, because I was basically going to tell the sleep lab people “thanks but no thanks” before even giving it a try. 

A very select, small group of people are fortunate to try a mask on for the first time, sleep all night, and wake up feeling like they just had the most wonderful night’s sleep of their life.  I am not in that group.  The first 40 or so days of CPAP therapy were, in fact, miserable.  But I went into this experience knowing that and setting reasonable goals and expectations that helped me stick with it when it was truly awful, and eventually it has come together for me. 

I think having reasonable expectations and goals makes it a whole lot easier to live with CPAP.  If I had gone into it thinking that it was going to be a piece of cake and that it would be perfect after the first night, I would have given up long ago.  For me—as for most people who try CPAP—that is not a reasonable expectation.

 Statistic show that the compliance rate for individuals who have been diagnosed with sleep apnea that is severe enough to require CPAP treatment is around 50%.  That’s a pretty bad compliance rate when you figure in the dangers of untreated sleep apnea (think about someone in a car near you falling asleep at the wheel!).  I think a lot of the lack of compliance has to do with unrealistic goals and expectations of CPAP therapy.  People think that it will be instantly comfortable, they will feel instantly better, they will lose weight immediately, etc.  These are not realistic expectations in the short-term, when it counts to get people to stick with this challenging therapy.

 There are other factors in the poor compliance rates, too.  In later posts, I’m going to talk about one of the “biggies” for me—control.  One of the first things that happened when I was officially diagnosed with OSA is a huge feeling of loss of control of my life—in part due to Kaiser’s OSA treatment “protocol”.  Another is lack of understanding and education about Sleep Apnea in general, and finally, lack of information about options for treatment including different machines and features and masks, as well as alternative treatments—all of these limit compliance.  

But this discussion is about goals and expectations.

The first thing I did on being told that I had severe sleep apnea was get here on the internet and figure out what the heck that meant.  I didn’t fully understand AHI and 77 AHI’s per hour was just a number to me—it didn’t mean very much.  As I was learning about the Apnea Hypopnea Index and criteria for mild, moderate, and severe obstructive sleep apnea, I found my first support forum, www.sleepapneasupport.org, and shortly after I found www.cpaptalk.com .  Those sites marked the beginning of my learning curve.  These forums, by and for individuals with OSA, has TONS of information on sleep apnea in general, CPAP machines, masks, and anything else which may be related.  By reading the posts on sleep apnea support’s two main topics, “sleep apnea help!” and “sleep apnea masks/machine questions”, and on cpaptalk, I learned a HUGE amount so that I understood the implications of my AHI and O2 sat levels, and all about how CPAP works, what kinds of machines and masks there were, and tips and hints on how to make them all work for me. 

 Armed with that knowledge, I understood that I had to give CPAP therapy a fair try and I also realized that adjusting to CPAP was not going to be easy.

I have to admit that in reality I whined and complained.  I posted to the Sleep Apnea Help! Forum all about why I didn’t think CPAP therapy was ever going to work for me and asking for alternatives.  The smart people there told me (somewhat gently) to put on my big girl panties and suck it up because my life depends on it.  I needed that straight shooting, and I will say it was a lot easier to take from others going through the same thing than from some preachy RT who never had to spend a night in a CPAP mask. 

So, knowing it was going to be rough (an understatement!) in the beginning, I decided to set a few goals for myself.

      1)  To stop snoring.  I felt horrible about my husband having to sleep on the couch most nights.  He was really sweet about it and made the very best of it.  He had fun finding warm fleece footie pajamas so he could stay warm in our chilly living room.  He found one set of fuzzy fleece footies with fire engines printed on it.  Another set had a drop seat, which was amusing at first and a pain when he realized that the Velcro would open when he moved around in bed or on the couch.  In the morning he would regale me with amusing stories of what he had to do to wake up the dog and get her to move off the couch so he could sleep there (she has a bed of her own and no snoring bed partner!).  We laughed together about her attitude when woken and how at least she kept the couch warm for him (no, she is NOT allowed on the couch!).  But I missed my husband when he left our bed and I worried for our marriage if this continued on.  So my biggest goal was to stop snoring, and that turned out to be the easiest.  For the most part, I don’t snore with CPAP on, and my husband says that he can’t really hear the machine at all. 

       2)  My other main goal was to find the right mask and machine settings so that I could basically put the mask on at night and go to sleep without too much thought or anxiety or fiddling.  THAT has proved to be a more elusive goal, though I would say at this point I’m about 90% there.  It has taken a while, and, IMHO, is the single most important factor in compliance.  If you cannot be comfortable with the machine settings and the mask, you cannot comply.

It took a lot of work and dedication especially to find the right mask for me.  It was an evolutionary process, starting with the most uncomfortable and difficult to adjust mask and gradually, after much trial, error, pain and many sleepless nights, I finally found a mask I can live with.  Many nights I do just put it on and go to sleep without much thought or anxiety.  But it took about 8 different masks to get it right, and I’m still tweaking to perfect it so that every night will be a good night. 

From reading the boards, I knew better than to expect to feel wonderful immediately, or to expect miraculous weight loss without effort, or any other “big ticket” bonuses from CPAP.  But I had one benefit that I didn’t expect because I never saw it talked about in the support forums, and it has become one of the big motivators for me.  That is a surprising calmness I feel when I wake after a good night (defined by sleeping all night without being awakened by machine or mask problems) on CPAP. 

What I have learned is that the worst sleep apnea occurs during REM sleep, when your body is essentially paralyzed.  You cannot take a deep breath to get yourself breathing again.  Eventually, the autonomic nervous system of your body takes over, puts you in panic mode, and you wake from sleep sweating and struggling to breathe.  This was happening to me EVERY night, at about 4 a.m., but I didn’t understand that it was sleep apnea.  I thought it was a menopause hot flash, because I’d wake up in a puddle of sweat, with my heart pounding.  I thought it was a little strange that I had this perimenopausal symptom for the past 9 years (since my youngest was born) but no other menopause symptoms (the longest menopause in history???), but I never associated it with sleep apnea.  Never. 

I also thought it was stress, because along with the sweating and heart pounding, every negative thought about my life ran through my head as I was trying to get back to sleep.  Often I could not go back to sleep until I had “cooled” off, this meant an hour or two of doing something else until my body got really cold and sleepy—just a short time before I had to wake up on weekdays.  Talk about a sleep debt!  Sometimes I would stall going to bed as long as I could, or lie in bed playing scrabble or solitaire on my PDA until the wee hours.  If I waited long enough to go to sleep, I could avoid the 4 a.m. “hot flash”, probably because I never made it to REM sleep.  But I was foggy and befuddled for the next day or two when I put off sleeping. 

My night sweats don’t happen anymore.  No more apnea.  No more nighttime panic.

Not only that, but I wake up with a feeling of blissful calm in the morning. . .

I wake slowly, drifting awake a little before my alarm goes off and I feel so relaxed and wonderful.  I’m becoming addicted to this feeling—like a good drug.  I haven’t felt huge bursts of energy, I think I’m gaining weight (less heartburn and reflux with CPAP), but the wonderful feeling when I wake is something that’s really keeping me going on this therapy. 

So my goals and expectations were reasonable and were exceeded.  That has spelled some success for me on CPAP.   And I’m looking forward to even more benefits as they come.

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