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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Aug 30, 2012
by: shylakay

There is no profile for a " typical apnea" person. They can range in age from birth to old age..male or female..heavy or not. I am a 60 yr old female who was just diagnosed a few yrs ago..I am thin. My son died at age 22..he was not overweight until the last 8-9 months of his life when his weight ballooned to twice his normal size.

I am so sorry you ran into physicians who were inferior. I know doctors like that are out there..I think it is up to " US" the patients to help guide the direction and sometimes even the line of defense in our choice of medications. There are just as many doctors out there who are tied into the drug companies who just sit and write prescriptions for drugs all day, whether they are truly necessary or not.

It is a blessing that you have been finally diagnosed and are getting much needed help.I think the day to day events in our lives guide us to situations that can help us and change the course we are on. Thank goodness YOURS did too..or you would be among the many who cannot tell us what happened to them and are only related by family members to tell their stories.

The more educated we are about conditions like sleep apnea the better we can help others who find themselves in a quandry about what is happening to them.

Let your experience lead you to help others you may encounter find the right help.

I hope you find peaceful refreshing and healing sleep now.

Aug 31, 2012
A Positive Outcome After a Long Journey
by: Michelle

Dear Nona,
I can emphasise with you completely. I spent so many years like you trying to find a cause for what was happening that when I was given a diagnosis for something else, whose symptoms were so close to those of Sleep Apnea,I excepted it as I was tired of looking for a cause to my problems.

I'm so pleased to read of your success with CPAP therapy. I'm truely amazed when I'm made aware what a wonderful difference it makes to one's life.

I'm sure you will now begin to travel a new journey forward and you will reap positive results from your success.

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