Narcolepsy Symptoms and Strategies

When Gloria dozed off in the front pew of her Spring Hill, Florida, church for the fourth Sunday in a row, she was mortified.

“Was I snoring?” she anxiously asked a friend.

Reassured that she hadn’t made anything more than a gentle snuffling sound, she relaxed. And promptly fell asleep.

Narcolepsy isn’t the easiest sleep disorder to live with. It frequently begins when a woman is in her twenties but is usually misdiagnosed for an average of 15 years. Consequently, it is often mistakenly related to a condition that pops up during the perimenopausal years.

Narcolepsy is apparently caused by a genetic glitch that prevents the body from either absorbing or producing enough of the neurochemical hypocretin. In either case the brain’s sleep/wake switch behaves erratically, and those with the condition unexpectedly fall asleep multiple times throughout the day and, conversely, wake up unexpectedly throughout the night.

“It’s difficult to stay awake and difficult to stay asleep,” says neurologist Eveline Honig, M.D., director of the Narcolepsy Network. “The quality of sleep is poor, so people are exhausted all the time. And that makes it twice as hard to function.”

Complicating things is the fact that those with the condition can be unable to move when they wake, a kind of paralysis that can last from one second to 20 minutes.

Even more challenging are the hallucinations that some people experience as they emerge from sleep — the dog you’ve been dreaming about bites you, for example — especially since it’s almost impossible for the person with narcolepsy to tell whether it was a hallucination or it really happened. Then there’s the tendency among some to collapse into a temporary state of paralysis whenever they become excited. Because of this, some women with narcolepsy avoid having orgasms during sex.

“It’s hard,” says Dr. Honig. “Narcolepsy affects how you behave, how you work, and all your relationships. But the worst thing is when people see someone with narcolepsy fall asleep. They simply assume that they’re lazy.”

Do You Have Narcolepsy?

If you experience any of the following symptoms, check in with your primary-care physician.

  • Are you falling asleep at inappropriate times and places?
  • Do you have vivid dreams or hallucinations as you fall asleep or wake up?
  • Are you ever unable to move or speak when falling asleep or waking up?
  • Have you experienced sudden muscle weakness that may cause you to collapse?
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