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Waking up to narcolepsy treatments

By: Kathy Gilbert
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Dorio Jones

At 18, Dorio Jones, now a 49-year-old Chattanooga engineer, woke up paralyzed and exhausted. He would fall asleep standing up.

“I’d come home at 7 o’clock at night and be white as a sheet, my eyes fluttering back and forth in my head. My parents thought I was on drugs, but I was straight as an arrow. I was asleep and dreaming and awake all at the same time,” Mr. Jones said.

He was told, at first, “it’s all in my head.” At 20, doctors finally diagnosed Mr. Jones with narcolepsy. He spent the next 30 years being treated with various drugs, amphetamines chief among them.

Today’s medications, a combination of antidepressants and retooled stimulants with fewer side effects, are doing a better job, Mr. Jones said.

“Ninety-five percent of the time I’m really good. I don’t hallucinate anymore, I don’t have any sleep paralysis; the heaviness in my limbs only occurs every now and again,” Mr. Jones said.

Narcolepsy is a disabling sleep disorder that affects 135,000 Americans, according to the American Academy of Sleep Medicine.

While the classic patient may fall asleep out of the blue people with milder symptoms may simply feel tired even after a good night’s sleep, have great difficulty waking up in the morning or feel exhausted by early evening, even after a relaxing day.

The disorder is not related to lack of sleep, but poor “sleep timing” in the brain’s neural circuitry. While the average person takes about 90 minutes to move into REM (rapid eye movement) sleep, the deepest sleep state, people with narcolepsy jump straight into it, the American Academy of Sleep Medicine reports.

But mild and moderate symptoms of narcolepsy can slip by doctors, said Dr. Anuj Chandra, head of Advanced Center for Sleep Disorders in East Brainerd and Trenton, Ga.

“The average delay in diagnosis can be 15 years, people go with a misdiagnosis as depression or being lazy and tired,” he said.

Patients are often identified in college. The disease usually shows up at age 15 or later, according to the non-profit National Sleep Foundation.

A family doctor or primary physician can rule out problems for tiredness, such as anemia or low thyroid function, Dr. Chandra said. A “sleep study” by a sleep specialist then looks at how quickly REM sleep is achieved during a series of prescribed naps the day after an adequate night’s sleep.

“Two or more dream episodes is diagnostic,” Dr. Chandra said. “If you’ve slept adequately the night before, you shouldn’t be going into (deep) sleep in these naps.”

Insurance usually covers the costs of diagnosis and drug treatment, he said.

Such a program changed her life, said Ginner W. Hudson, dean of organizational management and executive education at Covenant College Quest, an adult degree program located in downtown Chattanooga, with Georgia locations in Dalton, Rome, and metro Atlanta.

“I’m rarely tired, I am a high energy person, but there’s a big difference in being high energy and sleepy or being low-energy. I could be ready-to-go and sit down to start to work and just fall asleep,” said Dr. Hudson, who has a doctorate in industrial engineering.

Medications have removed the symptoms, allowing her to wake in the morning easily and feel alert all day, she said.

Bradley Maiser, a 26-year-old communications technician in Chattanooga, agreed.

“I had problems with waking up in the morning forever and ever and ever. I could do not do it, no matter how many alarm clocks I had, Mr. Maiser said.

An anti-depressant at night to suppress REM sleep combined with a stimulant in the morning do the trick, he said.

Anyone who feels tired after a good night’s sleep for weeks or months in a row might benefit from being checked for narcolepsy, Mr. Jones said.

“I like talking to people about it,” Mr. Jones said. “If there’s one person I can get to go to a doctor and get on track to getting some help, that’d be fantastic.”

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