Tracy Heim’s awareness of narcolepsy never extended much beyond the movie-screen image of people falling asleep in their soup.
That was until she had three car accidents and started zoning out in mid-conversation during telephone calls at work.
When the doctor she worked for suggested she might have narcolepsy, she dismissed the idea as absurd.
But a neurological exam and an overnight sleep study at Norwalk Hospital confirmed that Heim, now a 33-year-old marketing consultant who lives in Bethel, Conn., indeed had the chronic disease sometimes called sleeping sickness.
“I always thought it was one of those things that was sort of a joke,” said Heim, who was diagnosed eight years ago. “I never thought of it as a real disorder.”
That popular misconception of the disease, combined with a wide variety of symptoms that can mimic seizures, depression or just plain laziness, have led doctors to believe that narcolepsy may be grossly under-diagnosed.
Research suggests that the disease affects one in 2,000 people, about the same prevalence as multiple sclerosis.
But narcolepsy is so poorly understood that it often takes 10 years from the onset of symptoms to a proper diagnosis.
“In terms of its frequency, it’s not as well known as it probably should be,” said Dr. Matthias K. Lee, director of sleep research and insomnia services at Gaylord Hospital in Wallingford, Conn. “People with this disorder really suffer.”
Heim was 25 when she started noticing the excess daytime sleepiness that is typical of narcolepsy. The disease generally begins around puberty, although it is often overlooked in the swirl of physical and emotional changes going on then.
Even after a good night’s sleep, she would experience bouts during the day when she no longer could stay alert. Often, she said, her eyes were open but her mind was “gone.”
Looking back, she recalled strange episodes in college when she was listening to a lecture and taking notes. Next thing she knew, she had lost the thread of the lecture and looked down to find a line scrawled across her notebook where words should have been.
She had no idea how long the blackout had lasted.
Heim has not, however, experienced the brief waking paralysis called cataplexy that is typical in most people who suffer from narcolepsy.
Cataplexy occurs because narcolepsy is a disorder of the rapid eye movement (or REM) portion of the natural sleep cycle.
Healthy people typically go through REM and non-REM sleep cycles every 90 minutes. REM is the least restful part of sleep and the time when people dream.
During REM, the mind can be active but the body becomes paralyzed. Only the eye and ear muscles are working during REM, Lee said.
People with narcolepsy seem to enter the REM phase of sleep too quickly. Often they don’t get the deeper restful non-REM sleep they need at night, leaving them exhausted during the day.
Also, the paralysis of REM might overtake them during the day, causing their legs to collapse like jelly when they laugh or get angry, Lee said.
Although there is no cure, stimulant medications such as Ritalin help people such as Heim stay awake.
Narcolepsy sufferers also may need to take naps during the day, which can refresh them for several hours, said Meeta Goswami, director of the Narcolepsy Institute at Montefiore Medical Center in the Bronx, N.Y.
Until new drugs are developed, people such as Heim and Cara Kidd, a 21-year-old college student from Greenwich, continue to organize their lives around their narcolepsy.
Both carefully time evenings out and long drives to coincide with an extra dose of stimulant medication. Kidd also is able to take naps during the day.
“Sometimes walking around or getting a drink of water or coffee helps a little bit,” said Kidd, who is studying sculpture at the Rhode Island School of Design in Providence. “Mostly, I’m in a situation where I can take naps.”