Narcolepsy: What is it and how does it affect sleep?

Comedian and talk show host Jimmy Kimmel says he’d rather have narcolepsy than not have it.

In an essay he wrote for Esquire magazine about having the misunderstood sleep disorder, Kimmel waxed upbeat about how easily he falls asleep on flights from Los Angeles to Las Vegas.

Sounds like a plus. And that’s Kimmel’s way of using humor to cope with a condition that leaves you excessively sleepy during the day.

Humor is not a bad place to start when you’re talking about a malady that, left untreated, could affect your physical and mental health.

The Basics

The National Institute of Health says narcolepsy is a “chronic neurological disorder that disrupts the brain’s ability to control sleep-wake cycles.”

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Someone with narcolepsy will feel rested after sleeping, but still experience extreme bouts of sleepiness throughout the day. You can fall asleep doing the most regular things like talking, eating or driving. The NIH describes the symptom as sleep attacks.

It’s a common symptom of narcolepsy. Cataplexy, when you suddenly lose muscle tone and fall, is a rare symptom. Also, you may suffer temporary paralysis during sleep and you may hallucinate. These other symptoms are temporary, and range from mild to severe in narcoleptics.

Not everyone suffers from each symptom, but whatever the severity, narcolepsy will make your lifestyle more challenging.

The Cause

Most people with narcolepsy, who also experience cataplexy, have extremely low levels of a naturally occurring chemical called hypocretin in their bodies.

Hypocretin regulates REM sleep and makes you feel awake when you’re meant to feel awake. You can’t reverse the effects of lost hypocretin.

Some other possible, though rare, causes are autoimmune disorders, genetics and, even less rarely, brain injuries.

The Diagnosis

To be diagnosed, you’ll give a medical history and be run through a complete physical examination. They’ll test your blood to see how much hypocretin you have. Low levels are a telltale indicator of narcolepsy, but not every person with narcolepsy has low levels of hypocretin.

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That’s why you’ll definitely do an overnight sleep study, where they wire you up to monitor your brain and body and see how it passes through the sleep cycle.

Then you’ll probably do a daytime nap study, taking five naps during a day. If you’re racing into REM sleep within 8 minutes of falling asleep for at least two of those naps, you have narcolepsy.

The Effects

One in 2000 Americans will be diagnosed with narcolepsy each year, which seems like a low number. But know that narcolepsy is often misdiagnosed as seizures or some other neurological problem.

Still, the sleep deprivation that comes from narcolepsy is at least familiar to one-third of all Americans who also suffer that symptom for other reasons.

And with sleep deprivation you could be looking at insomnia, sleep apnea, cognitive issues, memory problems, weight gain and depression.

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The Cure

There is no cure for narcolepsy, but there are effective ways to treat the symptoms and effects of narcolepsy.

The Treatment

Part one of the treatment plan would be taking medications. Stimulants and antidepressants might help keep you awake during the day.

Doctors usually shoot for something more powerful than caffeine and less addictive than an amphetamine. But medications alone won’t bring enough relief.

Part two of a good treatment plan for narcolepsy would include developing better sleep habits:

  • Take naps
  • Go to bed and wake up at the same time 7 days per week
  • Exercise 20+ minutes daily, 4-5 hours before bedtime
  • Avoid smoking, alcohol, caffeine and large meals at night
  • Relax before bed with a warm bath or a book
  • Turn off the TV, phone and computer
  • Make sure your sleep space is cool and comfortable

Please take the idea of a welcoming sleep environment seriously. We’re not just talking sexy mood lighting and cushy pillows. A comfortable sleep space includes the temperature, lighting and bed accouterments, like your mattress and bedding. 

Source: iStock photo by Marilyn Nieves

The Takeaway

Narcolepsy is a chronic condition that requires vigilance and persistent attention to treat. It’s never going away, but it can be managed.

Consider yourself successful in the attempt if you can eventually cope like Kimmel has, with a few jokes and a good attitude.