My constant fight to stay awake

Dan Butler-Morgan tells Bryony Gordon about the difficulties of living with narcolepsy


As a teenager, Dan Butler-Morgan used to fall asleep during lessons at school. He thought it was just what every rebellious schoolboy did. But when Dan left school, took a job as a mechanic and continued to fall asleep during the day, he realised this wasn't normal. None of his colleagues dozed off while carrying out a road worthiness test or spent their lunch break asleep in a corner. When his boss threatened him with the sack, he knew he had to find out what made him so different from everybody else. His GP referred him to a sleep centre, where he was diagnosed as suffering from narcolepsy.

Narcoleptics fall asleep at irregular and unexpected times. "Most people,'' says Dan, "however tired, can stay awake if need be. But with me, it's like a blind is drawn. I can be having a conversation with the most interesting person, but inside, I am fighting a constant battle to stay awake. It's like someone switches the lights off.''

Dan, 26, is one of 2,500 people in Britain who suffer from the condition. He once fell off his bike due to an attack, and has been thrown out of nightclubs by bouncers who thought he was drunk – sufferers are often mistakenly considered to be inebriated or lazy.

This, coupled with the fact that nobody quite knows what causes narcolepsy, makes it hard to diagnose. It is widely believed that narcolepsy is the result of a genetic mutation, and recent research has showed that sufferers have a deficiency of a neurotransmitter called hypocretin, which regulates the body's state of arousal. Symptoms usually develop in healthy adolescents or young adults. Another sufferer, Margaret Bidmead, spent years thinking she was suffering from multiple sclerosis before she was diagnosed as being narcoleptic, while Dan believes he would still be having tests had his family not had a history of sleeping disorders.

Around four out of five narcoleptics also experience cataplexy, a sudden loss of muscular control that can cause them to fall to the floor, their heads to slump or their jaws to drop, usually after a sudden surge of emotion such as happiness, anger or fear. During the night, narcoleptics can also suffer from sleep paralysis - an inability to move just before falling asleep or just after waking up – and hallucinations.

Dan suffers from all of these symptoms. When I arrive for our interview his legs buckle in an attack of cataplexy, because "I walked in and didn't recognise you, and it gave me a small shock''. He finds it hard to describe the sleep paralysis and hallucinations, but says he begins "to go cold from the toes up, and then I get these horrible noises in my head – babies crying and a high-pitched shrill. Then I start to see things, either figures in the room or big hands coming at me from behind the curtains. Sometimes, I just see shapes.''

The only person who can help Dan to snap out of the hallucinations is his 25-year-old wife, Claire, who is frequently tired as she is woken by the attacks. "I put a hand on his shoulder and he will come round, but it can happen again and again during the night,'' she says. At their worst, she estimates, the attacks can occur around 50 times a night.

Dan is remarkably fresh-faced for someone who is supposed to feel overwhelming fatigue. He puts this down to the new tablets he takes to control his condition. He used to take an amphetamine-based form of medication, but found that his moods fluctuated too much. "He was up one minute and down the next, which was difficult,'' says Claire. Since Dan started taking amphetamine-free Modafinil, his moods have levelled out and his attacks of sleep paralysis and hallucinations have decreased to just five or six times a night, three or four nights a week.

Having lived with the condition for years, Dan is now better able to control it. "I know how my biorhythms work. I know when I get tired, so I take a tablet at those times to prevent that tiredness.'' He thinks that keeping busy also helps his condition. The couple have recently bought a house and Dan works on it every night after work until midnight. "It's when I sit down and watch television or a film that I know I'm going to go.'' The couple recently went to see a horror movie, and that sent Dan to sleep, too.

"Tiny little things that most people take for granted have been affected by my narcolepsy,'' he says. "Socially, we can never really plan anything. We go out to dinner and I can just fall asleep in my food. And we can't always go out to nightclubs like other young people do, because I can drift off so easily. I even had to leave my 21st birthday party before anybody else did.''

Claire concedes that she has occasionally felt annoyed by Dan's condition and often feels alone, but she also thinks his condition has made their relationship stronger. "It has tested us, but I have got so used to it that it's not really a big deal anymore. I see it as being no more of a problem than if Dan had asthma.''

Others, however, do have a problem with it. Dan is amazed at people's lack of knowledge about the condition, and has often encountered prejudice. He desperately wanted to join the police force, but was sent a rejection letter, saying he would be a health-and-safety risk. Another potential employer turned him down, telling him the sales assistant in his local chemist had told him Dan would probably turn up late for work all the time.

"It's not a disability,'' he says, forlornly. "But people's perceptions of it as one have led me to be a bit scared of trying to pursue any other career opportunities, in case I get turned down. And I sometimes feel like I am bringing other people down with it. It can make you feel like a nothing, a nobody.''

He has, at times, become desperately depressed about it; he hates having to rely on people. His attempts to control the cataplexy have more or less completely changed his personality. "I used to be this happy-go-lucky person, who was always cracking jokes and messing around, but now, I can't really laugh because it sets off the cataplexy. So I'm always trying to use a fake giggle, or just stay quiet.''

Despite all of the obstacles that Dan has faced, he is hopeful. "I don't think I'll ever go back to being the teenager who slept whole weekends without ever waking up. This morning, I got up at 5am and I'll go to the house this evening and work on it until late. In fact,'' he says, looking at Claire, "I think she's more tired nowadays than I am.''


© The Telegraph Group Limited, London 2003