Why You May Need a Second Opinion: 2 Stories of Misdiagnosed Sleep Disorders
Misdiagnosed since childhood, Ann discovered she had narcolepsy.(ANN AUSTIN)The main sign of a sleep disorder is how you feel during the day. But doctors don't always understand the extent of a patient's sleepiness or fatigue, and that could mean a missed or incorrect diagnosis.
Too often people don't recognize that constant exhaustion is not just a normal part of living or getting old, says Gary Zammit, PhD, director of the Sleep Disorders Institute in New York City. "If they're spending enough time in bed and still not waking up refreshed, they probably have a real medical condition, with real treatments," he says.
Here, read how two troubled patients didn't give up on their search for the right diagnosis.
Recognizing an emergency
When Mike Miner, 58, worked as a golf course superintendent in New Jersey, he couldn't make it through the day without a nap at his desk, or even his 55-minute-drive home without pulling off the road for a nap.
When Miner decided to get help, his own doctor was unavailable, so he took his concerns to another internist. Even though he was spending up to eight hours in bed a night, the doctor said he probably wasn't getting enough sleep. The prescription: Get more shut-eye.
"He convinced me that everybody feels like that," says Miner, "That it was just my lifestyle." But a few weeks later, after missing his exit on the parkway one day because he had nodded off behind the wheel, Miner rushed to see his own doctor. Immediately the doctor asked Miner a key question: Was he a loud, frequent snorer? In fact he was, and a sleep study soon confirmed his severe sleep apnea. "If I hadn't had that close call," says Miner, "I would have continued to think, 'OK, I'm just that way.'"
Solving a 30-year mystery
Growing up in the small town of Dixon, Ill., Ann Austin regularly fell asleep at school or on her way home in the afternoon. She'd wake up in places she didn't belong, not knowing how she got there, while her mother called all over town looking for her.
More about doctors and diagnoses
- Where to Start: Family Doctor or Sleep Specialist?
- How to Find a Certified Sleep Doctor
- Why My Sleep Apnea Went Undiagnosed
When she was 8, Austin's parents took her for a daytime nap study and an electroencephalogram at the state mental institution, the only option available at the time.
She tried to explain what she felt—a sensation of something pressing on her and a constant paranoia that something was coming to get her—but she didn't have the right language to make the adults around her understand. The diagnosis in 1969: Hyperactivity and not enough sleep at night.
Fast-forward 30 years and Austin, who'd grown used to the sleepiness and gaps in awareness, fell asleep one day while walking on the treadmill at her gym.
"There was a window ledge next to the treadmill, and these ladies were sitting there reading magazines and waiting for their turn," says Austin, now 46 and a training and education specialist for a St. Louis health-care company. '"I fell off the treadmill and into the ladies. I heard my elbow hit the window. My eyes were open, but my brain didn't wake up."
Finally she had a full sleep study at a sleep center and was diagnosed with narcolepsy. Now she takes medication to help her stay alert during the day and qualifies for disability assistance at work—which includes being provided with an window office and breaks during the day—that make managing her condition easier.