Wednesday, September 7, 2016

Becoming A Hosehead: Sleeping My Way To Better Health

CPAP machines are in the news this month after the New England Journal of Medicine released a study casting doubt on their effectiveness in preventing heart problems. See here for an explanation of the study and a summary of reasons why it is likely not accurate. Regardless of that study, let me tell you why I have become an unexpected missionary for the wonders of the CPAP.

For the past year, I've been wrestling with a diagnosis of sleep apnea. What have I learned, even while kicking, screaming and denying, through the entire testing and education process? That it is a real thing, that I really do have it, and that I feel a whole lot better when sleeping with a mask on my face hooked up to a 9-foot tube and a CPAP machine that blows humidified air into my nose all night. (Finding humor among apnea sufferers, I discovered they often refer to themselves as "hoseheads.")

What is sleep apnea, and how could I possibly have it?

Sleep apnea is a condition where people stop breathing repeatedly, sometimes hundreds of times, during their sleep. (See "Mayo Clinic & Sleep Apnea" for a comprehensive explanation and list of symptoms.) Untreated, apnea can lead to heart problems, stroke, memory loss, depression, etc. My knowledge of apnea prior to a year ago was that I thought it was a condition suffered only by very overweight men who snore loudly and wake up gasping for air when their brain finally is startled into reminding them to breathe.

So how me? I am a 64-year-old female who exercises regularly and hasn't been more than 5 pounds overweight in 40 years. I am not a smoker, was not an excessive snorer and never woke up gasping for air. My prejudices about apnea being a condition of unhealthy people kept me from believing the diagnosis for several months. There are many causes of apnea; mine is most likely a small opening in my throat that closes off when my tongue relaxes during sleep. However, it may also be some central brain issue -- as of yet there doesn't seem to be a definitive diagnosis. The sleep doctors can only confirm that you have the condition and suggest how you should treat it.

What are the common symptoms of sleep apnea? In addition to the loud snoring and waking up gasping for air, people with apnea often report waking up with headaches, not feeling rested when they wake up in the morning, falling asleep while driving, etc. I had none of those. For my entire life, I have awakened feeling great; I love mornings. However, I did have the telltale sign of afternoon fatigue. As the years went on, it became severe. By last fall, I was trying to arrange my schedule so that I would have no meetings after 3 p.m. (as I knew I needed to make it home for a nap). Even when I was traveling for work, I tried to arrange my day so I could pull over and take a nap at a roadside rest stop. I started to think that this was just part of being in my 60s.

The diagnosis. Kudos to my doctor, who when I mentioned during my annual physical that I was tired every afternoon, suggested I take a home pulse oximeter test to measure for blood oxygen saturation levels. Apparently when you have sleep apnea, your oxygen levels decrease when your breathing pauses. I took the test, and was shocked to read a report that said "this patient qualifies for Nocturnal Oxygen per Medicare guidelines." Oh boy -- "Nocturnal Oxygen"?! and they are writing my name on the same paper as "Medicare guidelines"?!

I still couldn't really believe I had sleep apnea. Even when the first overnight sleep lab test gave me a diagnosis of "severe obstructive sleep apnea" I couldn't believe it. To me, I thought "who could possibly sleep while hooked up to 27 wires attached to your body and someone watching you all night through a one way mirror window"? (Actually, I'm still interested in hearing from someone who took this test and was told they did NOT have sleep apnea...) I saw the sleep doctor again and thought he was obnoxious; that what he had to sell were CPAP machines -- kind of like if all you have in your tool kit is a hammer, everything looks like a nail. I decided to pursue alternative methods of treatment. I started weekly acupuncture treatments, I did yoga breathing, I saw a kinesiologist and tried a new blend of herbal supplements. All those things were probably helpful to my overall health, but they did not cure the sleep apnea. A second sleep lab test confirmed that I still had severe sleep apnea. My general physician got my attention when she said, "Sorry about your results. But there is too much proven medical information to ignore this -- lack of oxygen to your brain increases brain aging and memory loss." Ok -- yikes! -- I'll try the serious treatment -- I'll get the CPAP machine.

The CPAP machine. I picked up my Philips Respironics DreamStation APAP (a CPAP, but the first "A" means the air pressure adjusts to your needs over the night instead of the "C" version where the air pressure remains constant). Picking up the machine dashed my fantasy that a friendly home health nurse would come to my door, machine in tow, and show me how to use it. Nope. You are instructed to drive to a warehouse type place in an industrial part of town right by the freeway. Inside the nondescript building were stacks of boxes with different machines and a tired attendant who spent 10 minutes telling me how to use it, picking out a mask for me, and sending me on my way. "What if I have questions?" "Call the 800 number on the top of the machine." (See "things I don't like" list below for more on how well that worked.) My first night using the machine was horrifying for me. Putting that mask on my face and hooking up the tubing seemed oppressive and incredibly depressing. Was I really doomed to sleep with this contraption? I imagine that my first night response is fairly common. However, I stuck with it, and over months (not days or weeks) I became used to it and became a vocal proponent of the health benefits that regular use offers.

Things I like about the CPAP & treating sleep apnea.

  • Much diminished or non-existent afternoon fatigue.

  • Increased mental clarity.

  • Not falling asleep in a movie for the first time in 10 years.

  • Not getting out of bed to use the bathroom 6 or 7 times per night.

  • Support I've found from fellow apnea sufferers on online forums. These people are amazing; they respond quickly to even the most mundane of questions. (See or

  • Bonding with a high school friend, who in a fortunate stroke of serendipity, happened to text me about the time I was deciding if I would actually use the CPAP. I suddenly remembered she had used a CPAP for years and she became my instant personal coach and role model for success.

Things I don't like about the CPAP & treating sleep apnea.

  • Dragging the machine with me on airplanes across the U.S. and overseas. I travel a lot for both work and pleasure, and I used to pride myself on not having to check luggage. No more -- by the time I carry my briefcase and my rolling carryon with the CPAP, I have no more hands for the suitcase with my clothing. I also add in an extra long extension cord in case the hotel nightstand is not close to an electrical outlet and an electrical current adapter for overseas travel.

  • The fact that it took me more than ten weeks to start noticing a regular benefit from using the machine. (That's 70 nights, but who's counting?)

  • Almost everyone I've met in the sleep disorder profession. The home medical device people are difficult to reach, and when you call at night (which is when you have questions and issues with your machine) you get an answering service, not someone who can actually answer your questions. The sleep doctors (I have tried two of them) seem incredibly busy; it is difficult to schedule appointments, and forget about being able to call them with a follow up question.

  • The variety of bags under my eyes and creases on my face during the first several hours of a day, caused by strapping that plastic mask on every night.

  • Finding out that the option of treating this condition surgically is not really an option. Google "UPPP" and see if you would ever voluntarily agree to have that surgery -- especially when there is a good probability it won't completely fix your problem.

  • Finding out that the option of treating this condition with a dental appliance (a retainer that moves your jaw forward and helps keep your airway open) is not really a satisfactory option for people like me with severe obstructive apnea.

  • The joy of ever falling carefreely into bed at night and just going to sleep. The worry that if I sleep anywhere without a power outlet (river trips, backpacking) my health is going to suffer.

All of the negatives are outweighed by this: I rarely suffer from afternoon fatigue and my mental clarity is increased. This is amazing! I didn't know I had lost it, but the joy of getting it back is powerful. And according to my general physician, my odds of having a stroke or a heart problem have decreased.

Next up? My spouse is just in the early stages of receiving her own sleep apnea diagnosis. I kind of wonder if this is like the phenomenon that occurred in the college sorority house: by the end of the semester everyone had their periods at the same time. Now, as adults, are we proving some new maxim that women who sleep together suffer apnea together? In any event, at least I can offer first hand advice if she comes home with her own CPAP in the near future. And if it helps her feel better, I'm 1000% in favor of her getting her own sleep apnea diagnosis as soon as possible.

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