Bob’s Personal Story

Downhill one day at a time

It started insidiously enough. I felt a little more tired than usual and I began to have a little trouble concentrating. My memory was a little off as well. No big deal, just a hair off normal levels and, after all I had turned 50 so I could expect some slowing down, couldn’t I? At the same time, my wife began complaining that my snoring was becoming difficult to live with. Hey, how bad could it be, everyone snores. Big deal. Then I began falling asleep in meetings. If the air were close and the speaker droned, off I went. Well, not my fault, they should get some air circulation in those meeting rooms and get the speakers to be more interesting. The changes were so gradual that it was hard to see a pattern. I could find a reason or explanation for everything.

Some of it I attributed to my career. I was a foreign service officer and traveled a lot, usually across multiple time zones. Jet lag was obviously one of my problems and it was not unreasonable to accept that as I got older, I would need more time to recover. The problem was that I never seemed to recover, even after a couple of weeks-I was just so tired. I found myself making errors in simple arithmetic, not following through on projects and, in general, moving through life at half speed.

Psychologically, these seemingly intractable and ever-increasing series of problems and failures were beginning to get to me. I started questioning myself: was I ever as good as I thought I was or had I just been getting by all these years? Was I just over my head and really couldn’t cut it? This was depressing and I began to isolate myself, professionally and socially, as I didn’t want to be seen as a has-been, or worse, a never-was. Retirement came as an enormous relief; I could get away before I was “found out.”

Things went from bad to worse. No longer having a reason to get up, I didn’t, lying in bed till noon or beyond. I dozed most of the day and dozed again after dinner. My snoring (I was told by all and sundry) was excruciatingly loud. I went to an ear, nose, and throat specialist and was told that I had a deviated septum and my uvula needed trimming as there were flaps of skin hanging in my throat. Two major reasons for world-class snoring.

Dutifully, I underwent both operations. The second, the uvulopalatopharyngoplasty, or UPPP, on my throat was horrendously painful for more than two weeks after the operation. I was now quiet, the snoring had stopped. Everyone was happy. Everyone but me that is. I still felt like a zombie, had no interest in life, further isolated myself, and went deeper into depression. This led to my beginning group therapy to try to figure out the root causes of my depression and other mental problems. Over the next three years, I faithfully attended twice-a-month meetings and also placed myself under the care of a psychiatrist who prescribed a never-ending series of anti-depressants and mood-altering drugs. I just got worse.

My marriage was deteriorating, and my wife and I began seeing a counselor. The counselor, rather intelligently, noted that I had been on a lot of drugs for a very long time and that there should have been some improvement in my overall mental condition. Accordingly, she referred me to a researcher at the National Institute of Mental Health to determine if a different “cocktail mix” of drugs might serve me better. The NIMH doctor took a full history (the first time any doctor had done this) and asked a lot of questions; he didn’t just push pills. After about an hour, he told me to throw away all my medications and to have my primary physician refer me to a sleep laboratory for a sleep study. In his opinion, I had a major sleep disorder. I was incredulous. I pointed out that the only thing I still did well was sleeping. I did it anywhere, at least 18 hours a day. He responded by saying that I only thought I was sleeping and that the results of the study might both surprise me and hold the key to my problems. He then commiserated with me and told me that while I did not have clinical depression, the condition everyone was treating me for. I was depressed but with good medical reason!

The sleep laboratory was a strange experience. The technician wired me up to 36 separate electrodes to monitor all my vital functions while I was asleep. This was extremely uncomfortable and I wondered how anyone could fall asleep wired up like “Frankenstein’s monster.” I needn’t have worried. Even though it was only eight in the evening, I fell asleep the moment the light went off. (Everybody has to be good at something, right?) At midnight, the technician woke me and put a mask over my nose (my first encounter with a CPAP machine to keep my airway open) and sent me back off to sleep. At six in the morning, he woke me again and removed all the wires and other paraphernalia. Oddly, I felt better than I had in a long time. When I asked him how I had done, he responded with the usual, “The doctor will tell you after he interprets the data.” I prodded him for an off-the-record comment. He asked me if I thought that I had awakened at any time during the night. I said no, in fact I really felt rested. He then told me that during the first four hours, I had stopped breathing and awakened between 40 and 50 times an hour with one peak of 88 times! Unbelievable! How could this be, how could I be so insensitive not to know that I was going up and down like a yoyo?

Three days later, my doctor confirmed the diagnosis: moderate to severe obstructive sleep apnea. I then learned that for a minimum of seven to ten years, because I stopped breathing during sleep so often, I had actually been sleeping less and less each night and had built up a sleep debt that was interfering with my cognitive abilities and affecting my emotional state. I was so sleep deprived, I couldn’t think straight. He then told me that I had responded well to the CPAP and that he was prescribing one for me and I would now sleep normally and return to the land of the living. Having finally worked my way tortuously through the medical maze to an accurate diagnosis and the magic prescription, I thought my problems were over. I should only be so lucky.

My doctor gave me the names of two local medical supply houses and said either could fill the prescription for the CPAP for me. Good enough for me. I went to the closer one in the expectation that tonight would be bliss; I was really going to sleep. Tomorrow would truly be the first day in the rest of my life. Instead, I encountered ignorance and indifference.

I presented my prescription to the clerk at the counter and he pulled out a machine and held up a template to my face to determine if I was a large, medium, or small. Having determined that I was a large, he pulled out a mask and said, “This will fit you. It is the standard mask for the CPAP.” Okay, what do I know, standard is standard. That night, in gleeful anticipation, I set up my machine, fit the mask on my face, turned out the lights and hit the start button. Total disaster. The mask leaked air from everywhere. No matter how I adjusted the straps, looser, tighter, up, down, anywhere, nothing worked. Finally, I found one position where, if I lay perfectly still and didn’t move a muscle, the mask would stay in place. Unfortunately, by this time the mask was so tight that I had an indentation from it in my forehead. And the moment I dozed, I moved. So did the mask. This battle went on all night with my getting even less sleep than my apnea normally allowed. I was crushed. All that anticipation and somehow I could not get the standard mask to work for me.

Obviously I was doing something wrong and needed help, so I went back to the medical supply people. I told the clerk my problem and he appeared to be sympathetic. He noted that the CPAP was, in fact, somewhat intrusive (an understatement) and that it took time to get used to, perhaps as much as six weeks but I should keep at it and, in time, all would fall into place.

His advice seemed reasonable and for the next six weeks I continued my battle with the machine. I did go back to the home health care company several times during that period to see if maybe there were some other kind of mask or if there could be some adjustment to mine. Each time I was assured that I had the right size mask and it was the standard. (Actually, his company, in order to hold down inventory costs, carried only one mask design in three sizes.) In desperation, I turned to the internet, eventually found the American Sleep Apnea Association, and was given the name of the A.W.A.K.E. coordinator for my area. He invited me over to his house and listened to my tale of woe with interest and a little amazement. He then told me that there were more than 20 different masks (there are now even more) and that one shape most certainly did not fit all. There was no “standard.” After a lot of discussion and my review of literature, I decided to try a radically different form of mask, one that I thought would better meet my needs and fit my particular facial contours.

When I went back to the medical supply house to order it, they didn’t want to fill the order as they “don’t usually deal with (that) company.” I was in no mood to suffer any longer because of their indifference, ignorance, and incompetence, so I insisted that they deal with that company and now. Finally the clerk hurriedly ordered the mask for me as I waited.

A week later, I was sleeping like a baby and my life began returning to normal. I have been on the CPAP for almost five years and am so used to it now that it is as normal to me as brushing my teeth–and about as noteworthy. My memory has returned; my energy level is up; and I have even gone back to work on a part-time basis as an analyst. Life is good again. Despite the advance in years, I feel better than I did 10 years ago. It’s truly amazing what a good night’s sleep can do and conversely what its lack can do.

A final point. You are responsible for your health and best interests, though it is difficult to take that responsibility when you have untreated sleep apnea. Some doctors have an understanding of sleep disorders, many more don’t. They typically have not been taught about sleep in medical school or their residency. Do not assume competence because of a diploma on the wall. Several failed to check me for OSA! And medical supply houses vary enormously. Some have well-trained staff and carry wide inventories. Others try to get by on the minimum. If you have problems using CPAP, contact the ASAA, as I did, to see if there is an A.W.A.K.E. group near you with members who can offer recommendations on different masks and headgear and helpful suppliers in your area. (Better yet, contact ASAA as soon as a diagnosis is suspected or made–before too much time, money and effort is wasted.) This is too important to ignore. Get the facts and make an informed decision.