What this man with narcolepsy can teach us about getting better sleep

Since his early twenties, science writer Henry Nicholls has struggled against nearly irresistible waves of sleepiness, thanks to narcolepsy — a severe sleep disorder that science has only recently come to understand.

"It's this insane weight that you fight with for a little bit and that fighting is completely worthless. There is only one outcome ever: You lose to sleep," he told CBC Radio's Quirks & Quarks.

Nicholls explores the science of narcolepsy, and a whole range of other sleep disorders, in his new book Sleepyhead: The Neuroscience of a Good Night's Rest.

Along the way he makes the case that the strategies used to cope with serious sleep disorders can help the rest of us sleep better, as well.

Over the two decades Nicholls has lived with narcolepsy, science has learned much about it. Though it may still often go undiagnosed, it's thought to affect up to one in 2,000 people. 

Narcolepsy and neurobiology

Narcolepsy is the result of the destruction of a tiny population of neurons deep in the brain that are critical for regulating sleep.

This means "it's brain damage — a tiny amount," according to Nicholls.

The brain has billions of cells, but "just a few tens of thousands of cells, [are] absolutely crucial to the regulation of sleep and wakefulness," Nicholls explained.

These cells produce a critical neurotransmitter called hypocretin or orexin.

Hypocretin plays a role in waking up or maintaining wakefulness in many areas of the brain by releasing stimulant hormones like norepinephrine. People with narcolepsy never get this hormonal wake-up call.

In rare cases the loss of these cells is genetic, but much more commonly they're destroyed by an unfortunate autoimmune reaction. Narcolepsy frequently develops after an ordinary flu infection, and researchers suspect that in rare cases the immune system, on alert for flu virus attacks, mistakenly destroys hypocretin-producing cells as well.

A narcoleptic insomniac

Narcolepsy also frequently comes with a range of other sleep regulation issues — paradoxically, narcoleptics are often insomniacs as well.

"People with narcolepsy really don't sleep at all very well," said Nicholls, "They wake up 10, 20, 30 times a night."

This was something Nicholls only realized of himself when he was involved in a sleep study. "I spent 20 years thinking I was really good at sleep," he said, "It turns out I'm very bad at sleep."

There aren't a lot of great treatments for narcolepsy. Patients are often treated with stimulants like amphetamines, but they're not always effective.

One new treatment takes the opposite approach by trying to improve the sleep of narcoleptic patients at night with a sedative. It's a drug related to GHB, which has become notorious as the "date rape" drug.

"So you are treating narcolepsy with a massive sedative, which seems very weird," said Nicholls. But "by getting some deep sleep at last, your daytime functioning is improved."

What narcolepsy can teach about better sleep

In the absence of effective drug treatment, Nicholls has learned to improve the sleep he does get at night, with the help of minor lifestyle changes that make sleep easier to come by and more consistent.

People with even minor sleep difficulties can benefit from good "sleep hygiene." He says it can be an effective way to deal with the problem of a chronically underslept population.

"This is kind of embarrassing, it's so obvious," he said.  While his narcolepsy isn't curable, small things have helped improve his nighttime sleep.

Regular bedtimes are one key. Nicholls was a snorer, often a sign of sleep apnea, so treatment for that helped. Obesity is linked to bad sleep, so watching his diet and exercising have helped him sleep better, as have cutting alcohol and caffeine, which both contribute to sleep disruption.  

If these things can help someone with a severe sleep disorder, like narcolepsy, they can probably help anyone sleep better.

• Why do we sleep? What happens when we don't?
• The sleep deficit puzzle: Is it not enough sleep or too much being awake?
• Your car might be trying to kill you by lulling you with sleep-inducing vibrations

Nicholls becomes particularly passionate talking about one issue: light. Artificial light — particularly LED displays that produce a lot of blue light — fools the body into thinking it's daytime, and disrupts our internal sleep regulation.

He's particularly concerned about teenagers who use devices late into the night, have disrupted sleep, and then have to get up early for school.

"Society doesn't take sleep or sleep disorders particularly seriously," Nicholls maintains. He thinks bad sleep is major public health issue that we all need to think more about. He has one piece of takeaway advice:  "Pay attention to your sleep and learn about sleep."