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Living With Sleep Apnea
It all started in late 1995. My wife, Dee, and I were invited to a Christmas dinner at a friend's house. Other couples we didn't know were also invited. We met Joe and Gina, and noticed that Joe showed all the signs of recovering from a stroke. We asked Gina what had happened to Joe, and she confirmed our suspicions. Dee asked Gina, "Do you know what caused the stoke?" Gina said they weren't sure, but they suspected it was caused by Joe's sleep apnea, a condition he was diagnosed with after having had the stroke. We were not sure what sleep apnea was, so Dee asked Gina to describe it. She said, "You're snoring, then you stop snoring and stop breathing, there's a long pause, and then you snort and gasp for breath. The cycle then repeats." Dee then said, "Dick does that." Gina, in a stern voice said, "You get him tested, and do it soon. You don't want him ending up like my Joe."
The next week, I called my doctor, told him what I suspected, and he arranged for me to take a sleep test. This was a simple procedure where I took home a Pulse-Oximeter to measure my pulse and oxygen level in my blood as I slept. The device had a clothes-pin type of connector that I attached to one of my fingers. During the night, the machine recorded my pulse and blood oxygen level. The next day, I brought the device back to the clinic. I expected to hear the results the next day.
Two weeks passed, and no word about my sleep test. I began to assume there was nothing wrong. Then, I got a metal sliver in my eye, and had to go to the Emergency Room to have it removed. The doctor who treated me had my chart, and remarked, "It looks like you had a sleep study recently. You better contact your regular doctor immediately, this doesn't look good." He couldn't tell me more, but as soon as I got home I called my regular doctor. The nurse answered, and I found out my doctor had been away on vacation, and had just returned that day. I told her what happened, and she said she would inform the doctor.
A few hours later, I received a call from my doctor. He had arranged for me to pick up a CPAP machine from the sleep clinic. I went to get the CPAP machine immediately. They also gave me the Pulse-Oximeter again to test myself after getting comfortable with the CPAP machine. It was Friday, so the earliest I could return the test results would be the next Monday. I slept with the machine Friday and Saturday nights without connecting the test device. Sunday, I tested myself, and brought the results back to the clinic Monday morning.
They compared my first test with the new test. In the first test, as I fell asleep, my heart rate would slow down slightly. My oxygen level was at about 90%. Then, you could see my heart rate rise to 120, and my oxygen level fall to 50%. Then a spike, as my oxygen level would shoot up to about 90%, and my heart rate would begin to decrease to about 110. But then the heart rate would start to rise again, and my oxygen level would fall to 50% again. Another "episode" of sleep apnea occurred. I had over 200 episodes in less than 8 hours.
The new test showed a dramatic improvement. My heart rate stayed low and steady all night long, and my oxygen level stayed at 90% or higher. The CPAP machine was doing its job. I returned home feeling very good. I noticed during these first few nights that I slept like a rock. I didn't move all night long. I was so tired from sleep apnea episodes that my body took this opportunity to "recover" and "rest".
I thought my problems were over, but I was wrong. After a week, I noticed a cut on the bridge of my nose caused by the CPAP mask pressing against it. The cut was becoming infected and looked green. I called the clinic and told them what was happening. I had to bring back the mask I was using and try another mask. This one had soft plastic all around the opening that covered my nose. The mask pressed against my face differently, and was more comfortable. I tried that for a week.
I noticed the skin around my nose was breaking out in a rash. I called the clinic again, and brought this mask back. I was allergic to the plastic! What could be done? The therapist suggested I try "pillows", nasal plugs that supply the needed pressure directly into my nose. Nothing touches your face or the bridge of the nose. I didn't think that would work, but was willing to give it a try.
What a difference! This solved most of my problems. And it had several advantages the masks didn't have. The hose which feeds the air comes over the top of your head, instead of across your chest. My hands were free. And there was no "leakage", no air blowing into my eyes, as was the case with the masks. And I could turn over on my side and sleep with the side of my face on the bed pillow. I couldn't do that with the masks because they would get knocked loose from my face, or the hose would get entangled.
There were a few problems with the nasal "pillows". I had what was called an "Adam Circuit", and had to alter the head gear slightly by running a strap across the top and down to the sides. This kept the support in position under my nose. I added home-made tube socks around the hose joints to prevent small leaks from escaping. And I had to add an additional 45-degree angle joint between the hose and the support. This placed the support directly against my upper lip, and let the "pillows" slide directly up into my nose. Without this joint, the "pillows" came in at an angle, and could also leak slightly.
Adding the 45-degree joint presented a new problem. The "blow hole" in the support now pointed down at my chest. That blowing air gets cold! So I blocked off the blow hole and drilled another near the new joint. Now the air blew straight away from me. Lastly, the air flowing through the hole across the top of my head was making the hose cold. I added a golf cap, with the brim taken off, inside the webbing. This solved two problems. It eliminated contact with the cold hose, and made it easier to place the apparatus on my head. Now I had "what works for me".
After a few months, I began to notice something. Prior to getting the CPAP machine, I'd frequently wake up in the middle of the night with food in my throat. I thought I might have Acid Reflux disease. I tried antacids, but they didn't help. Then I started on CPAP. The Acid Reflux disappeared! I've since come to believe that when I stopped breathing, I put reverse pressure on my esophagus, which resulted in the drawing of food up from my stomach. Maybe the symptoms of Acid Reflux are also symptoms of Sleep Apnea. I can't prove it, but I haven't had an episode of food regurgitation since I started CPAP many years ago. If you are taking pills to control Acid Reflus, and you're now using CPAP, then I suggest you stop taking the Acid Reflus medication, and see what happens. You may discover, like I did, that CPAP eliminates Acid Reflux. If not, go back to using your medication. You've got nothing to lose by giving it a try.
I joined a support group, called AWAKE, and learned about other options besides CPAP (Continuous Positive Airway Pressure). Diet and exercise often helps overweight people. Others try surgery. However, surgery doesn't have a high success rate. Usually only one in four or five are successful. One of my friends had a very bad experience with surgery. Not only did it fail, it left his jaw such that it would open as he slept. Now the standard masks and nasal pillows wouldn't work because he could not maintain pressure. He was forced to use a full-face mask.
Another friend of mine was fitted with nasal pillows, but with the wrong size. Instead of the clear or cream colored pillows designed for large nostrils, he was given the blue pillows designed for small nostrils. The cone went up into his nose, and was very uncomfortable. The correct size pillows should seal against the end of your nose, not stick up into the nose. And contrary to what many therapists say, the air does NOT "blow" up your nose. You breath normally and CPAP simple provides added pressure, but NOT blowing.
If you suffer from the symptoms of sleep apnea, I urge you to get tested to see if you need CPAP. And if you do, get what works for you. If the respiratory therapist gives you something that doesn't work for you, ask to try alternatives. Technicians or therapists can make mistakes. Remember, it is YOUR life. Sleep well.
Dick Guertin
Mountain View, CA
For more information about sleep apnea, visit the American Sleep Apnea Association web site.
I've taken a picture of the standard mask, which I DO NOT RECOMMEND, and also of the Puritan-Bennett "Breeze", which I highly recommend. You can clearly see how the pillows fit against the nose. Lastly, notice the blue tape wrapped around the "Breeze". That's to block off leaks in a joint at that point. Newer models of the "Breeze" have been redesigned so they don't have this problem.
Follow-up, August 26, 2009. The Puritan-Bennett "Breeze" Sleep-Gear (model Y-101400-00) has been improved. They've added a clip at the front, and now the side-straps come forward more and help hold the apparatus.
Follow-up, November 22, 2010. I've discovered I don't need the higher pressure setting that was my original diagnosis. The nasal pillows provide such a good seal that I was able to lower my setting from 11 to 7.5, and still sleep well. The lower pressure is more comfortable, and much less likely to have leaks.
Follow-up, April 22, 2014. I've added a picture of my wife wearing her own CPAP mask, which is the improved "Breeze". This is what we are both using now.
Follow-up, September, 2016. I purchased a rocker-recliner chair that allows me to recline at a 20-degree angle, feet down and head up. The footrest remains in a retracted position. I sleep very well WITHOUT CPAP. But I'm probably able to do this because I've lost about 40-pounds of weight over the last two years.
Follow-up, August 2017. My wife pointed out that she still hears me "snort". I added a 'neck pillow' to keep my head upright. I'm happy with the results.
Follow-up, May 2019. I've lost another 10-pounds of weight, down to 215-pounds. My neck has gotten smaller on the outside, and larger down my throat. It's like a doughnut that expands both inward and outward as you cook it, but in this case, it's the reverse. My wife and I have both gotten off CPAP.
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