Book Re­view

Henry Ni­cholls is more qual­i­fied than most to write about the sci­ence of sleep. At the age of 21, he was di­ag­nosed with nar­colepsy – a rare dis­or­der that causes peo­ple to fall asleep with­out warn­ing. But, he tells James Lloyd, it’s a largely mis­un­der­stood

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This month, we dis­cuss Sleepy Head by Henry Ni­cholls, a book that dis­cusses nar­colepsy – a dis­or­der that causes peo­ple to fall asleep with­out warn­ing

What ex­actly is nar­colepsy?

Most peo­ple know that those with nar­colepsy have an ir­re­sistible need to sleep at in­ap­pro­pri­ate mo­ments dur­ing the day. This was my first symp­tom when I was di­ag­nosed – I’d find my­self doz­ing through tu­to­ri­als at univer­sity and over­dos­ing on caf­feine. But that’s prob­a­bly the least in­ter­est­ing of the symp­toms. Most peo­ple with nar­colepsy also ex­pe­ri­ence cat­a­plexy, which is where the emo­tional cen­tre in the brain causes a sud­den loss in mus­cle con­trol. It’s the same process that hap­pens dur­ing sleep to stop you act­ing out your dreams, but dur­ing the day, it can mean that even a small emo­tion has you col­lapsed on the floor.

What trig­gers it?

It can be any emo­tion, but the most com­mon trig­ger is hu­mour – I have a friend who only needs to raise an eye­brow to have me on the floor. What’s fas­ci­nat­ing is that you re­tain con­scious­ness through­out. You’re in a crum­pled heap on the floor, laugh­ing your head off in­side, but you just look asleep or dead. And then some­one comes up and says, “Is he okay? Does he need an am­bu­lance?” That’s even fun­nier, and it keeps you un­der for a while longer. The at­tacks usu­ally last only 10 or 20 sec­onds, but there’s very lit­tle warn­ing, and it can be ex­haust­ing. If you’re col­laps­ing 100 times a day, it can be an ex­tremely dis­abling con­di­tion where you be­come fear­ful of leav­ing the iso­lated safety of your home.

What are the other symp­toms? Many peo­ple with nar­colepsy also ex­pe­ri­ence sleep paral­y­sis and hal­lu­ci­na­tions when they’re wak­ing up or drop­ping off. It hap­pens when the brain is in rapid eye move­ment (REM), dream­ing sleep, but you’re awake, un­able to move. The brain of­ten man­u­fac­tures pet­ri­fy­ing vi­sions. I used to see an axe mur­derer – I’d feel the axe as it slammed into my chest, and the blood trick­ling down my sides. Para­dox­i­cally, peo­ple with nar­colepsy tend to ex­pe­ri­ence frac­tured night-time sleep too, wak­ing up as many as 20 or 30 times a night: it de­stroys your sleep qual­ity.

What causes nar­colepsy?

The vast ma­jor­ity of cases are caused by an in­fec­tion such as flu or, as in my case, a strep­to­coc­cal in­fec­tion.

The im­mune sys­tem de­stroys the in­vaders, but in some cases it also takes out a pop­u­la­tion of cells in the brain’s hy­po­thal­a­mus that pro­duce pro­teins called hypocre­tins, which play a cru­cial role in sleep reg­u­la­tion. At the mo­ment, there’s no cure, be­cause once you’ve lost these cells they’re gone. We’re only able to treat the symp­toms. There are stim­u­lants such as modafinil and dex­am­phetamine that help to keep us alert, and small doses of an­tide­pres­sants can treat the cat­a­plexy. I’ve found drugs to con­trol most of my symp­toms, but I’m for­tu­nate – not ev­ery­one re­sponds to them.

How com­mon is nar­colepsy com­pared to other sleep dis­or­ders?

At any one time, chronic in­som­nia af­fects about 10 per cent of the pop­u­la­tion. Sleep ap­noea is the other com­mon one, which is when a per­son’s breath­ing is in­ter­rupted dur­ing sleep – snor­ing is of­ten a sign of this. Nar­colepsy is a rarer dis­or­der, af­fect­ing about 1 in 2,500. There are sto­ries of peo­ple go­ing 20, 30, even

60 years be­fore be­ing di­ag­nosed, by which time the psy­cho­log­i­cal dam­age can be se­ri­ous. We still need to get much bet­ter at spot­ting these dis­or­ders.

Why is it so im­por­tant to get good sleep?

Sleep is do­ing so many things for us:

it’s strength­en­ing con­nec­tions in the brain, mak­ing new ones, prun­ing ones we don’t need. It’s a time to re­plen­ish and recharge. Chronic sleep de­pri­va­tion puts you at greater risk of a whole host of con­di­tions: cancer, stroke, type 2 di­a­betes, de­pres­sion, hy­per­ten­sion, obe­sity, the list goes on. It’s no co­in­ci­dence that ev­ery or­gan­ism on Earth with any kind of neu­ral clus­ter re­sem­bling a brain per­forms some­thing akin to sleep. Any top tips for a de­cent night’s sleep?

This isn’t go­ing to be pop­u­lar, but the most im­por­tant thing you can do is stick to a rou­tine. That means go­ing to bed and wak­ing up at the same time ev­ery day, even the weekend! For in­som­nia, my trick is to re­peat a neu­tral word like ‘the’ over and over – not out loud, but in your mind. You’ll find that your brain can’t think about any­thing else, and rac­ing thoughts will stop.

I’ve man­aged to get snatches of good sleep now for the first time in 20 years, and it’s been so em­pow­er­ing. That’s the up­beat rev­e­la­tion of this book – we re­ally can change our sleep habits, even those of us with sleep dis­or­ders.


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