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.
Although those with narcolepsy can’t do a lot to change how others may view them, they can do a lot to manage their disorder. Here’s how.
[step-list-wrapper title=”” time=””] [step-item number=”1.” image_url=”” title=”Nap.” ] “Sometimes narcolepsy can be managed entirely by naps alone,” says neurologist Eveline Honig, M.D., Director of the Narcolepsy Network. Although it may sound a bit odd to prescribe naps for someone who falls asleep all the time, sleep experts suggest you take two naps a day — one at lunchtime and one around 4:00 P.M. The naps should last no more than 15 to 30 minutes. That’s enough to improve your alertness significantly, while longer naps can make you feel groggy.[/step-item]
[step-item number=”2.” image_url=”” title=”Stay on a regular schedule.” ] If you keep to a routine, it will help that little switch in your brain know whether it should be on or off.[/step-item]
[step-item number=”3.” image_url=”” title=”Consider meds.” ] Stimulants like methylphenidate (Ritalin) and modafinil (Provigil) frequently help you stay alert.[/step-item]
[step-item number=”4.” image_url=”” title=”Watch what goes in your mouth.” ] In general, carbs make you sleepy while protein makes you more alert, says Dr. Honig. The best thing to do is keep a food diary noting the food you eat, the time you eat it, what you were doing afterward, and whether you had any subsequent symptoms. Then simply avoid foods that you know make you sleepy.[/step-item]
[step-item number=”5.” image_url=”” title=”Avoid alcohol.” ] It screws up everything. If your brain has trouble recognizing normal sleep/wake signals, alcohol is the wild card that will confuse it forever.[/step-item]
[step-item number=”6.” image_url=”” title=”Join the narcolepsy network.” ] Their Web site and newsletter offer links to the latest information, research, and other types of support around the country. They also sponsor a national “sleep in.”[/step-item] [/step-list-wrapper]