Two Decades of Misdiagnoses of Sleep Apnea

by Nona Aguilar
(New York, New York - USA)

Too bad for me that not even the physicians at a sleep disorder clinic bothered to order a sleep study.

That failure added another 15 months of sleep-deprivation suffering to the previous two decades.
Because of this omission, one question I ask almost every sleep apnea person I meet is: “ How did you find out that you have sleep apnea?”

One woman complained to her physician about tiredness. He put her through a battery of test. When none revealed a cause, he ordered a sleep study. Bingo! Sleep apnea!

Another fellow sufferer began experiencing extreme swelling around her ankles. Her physician sent her to a cardiologist. After checking for every possible cause and finding none, the “cardio” ordered a sleep study. Bingo! Sleep apnea!

It took decades of misdiagnoses before I finally enjoyed my own Bingo! Sleep apnea! moment. And when it came, I was almost delirious with excitement and joy. Yes, joy! An answer! Finally an answer!

My sleep problems – and related exhaustion – were a matter of record with family, friends – and with many doctors. I was constantly looking for the professional who could identify the cause of my exhaustion and poor sleep; I went through interviews and testing with many different physicians.

One was a highly respected endocrinologist: I was mindful that I woke throughout the night. Could those constant waking be caused by a bizarre type of nocturnal hormonal fluctuation?

Again and again, testing revealed nothing was amiss.

A friend finally persuaded me to go to a respected sleep disorder clinic. I knew Don had gone through an overnight study; I presumed that’s what the doctors would order for me.

After a cursory physical and an interview about my persistent no-sleep problems, the doctor concluded that I had insomnia.

He put me on a sleep restriction protocol plus gave me sleep hygiene guidelines (the usual: no alcohol for at least four hours before going to sleep; cutting computer use for at least 90 minutes before bedtime, etc., etc.)

I could pick any bedtime I wanted, but could not sleep more than six hours. No matter what, I had to get up six hours later even if I had a bad night of sleep. I was given a chart to mark with my hours of sleep.

Two other sleep physicians dropped in on every follow-up appointment and chart review. They reinforced the idea of keeping to my sleep protocol until I “recovered” from my “insomnia”. I did everything I was told to do – I was desperate for a good night of sleep! – but when the protocol didn’t succeed and I was offered nothing else, I thanked the doctor and quit my sessions.

In retrospect, here are a few points that are significant:
• I trusted that these are sleep specialists and therefore are knowledgeable.
• I don’t fit the profile of a typical apneac: I’m a middle-age woman of normal weight, not an overweight middle-age man.
• I was never asked whether I snore; I never thought to mention it. I had no idea it could be relevant.

I think the doctors looked me over, decided I didn’t fit the profile for sleep apnea...and never went beyond that.

So how was I diagnosed? I shared a hotel room with a friend who had been researching sleep disorders on behalf of her son. The next morning Myra described my prolonged breathing pauses (which she found frightening), the sudden loud snorts as I resumed breathing, and the noisy snoring. “I’m sure you have sleep apnea,” she concluded.

Instantly, I knew she was right.

When I returned to New York later that day, I found a different sleep disorder clinic and made an immediate appointment. The doctor listened to what I said; he ordered a sleep study. I could hardly wait for the date to arrive!

When I showed up for the study, I had multiple probes attached all over my body – and off I went to my room to sleep as best I could. I slept as I usually did -- poorly. The the results were clear: Bingo! Sleep apnea!

I was thrilled. At last! An answer! I also knew there was a solution: CPAP. I was not at all dismayed by the fact that I would be using a CPAP machine for the rest of my life.

Indeed, I was so happy that I would start sleeping albeit with a machine, that I practically danced home.

When I returned for my overnight titration study, I was “masked up” and attached to a CPAP machine for the first time. The next day I awoke actually feeling. . .refreshed. Refreshed! What a strange, unfamiliar feeling. And what a wonderful feeling.

All those years….all those doctors…and not a single time did I hear the two words “sleep apnea” spoken by single medical professional. Not one. But, by golly, I finally had my answer: Bingo! Sleep apnea!


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