Narcolepsy is more than just a tendency to nod off at awkward moments. It can wreck lives.
Harvey McGavin talks to one sufferer
Vivienne Khouri has problems sleeping. It's not young children or money worries or Ofsted inspections that keep her awake at night. If only it were that simple. Vivienne's problems - drowsiness, a tendency to fall asleep unexpectedly, to slip into disturbing dreams or experience sudden body spasms or paralysis - have been with her since she was a child. But only last year, at the age of 38 and after 16 years as a teacher, did Vivienne found out the word for what was wrong with her - narcolepsy. It is a much misunderstood and rarely diagnosed condition - only about 2,500 people receive treatment for it in the UK. Many more are thought to suffer from narcolepsy, but stressful jobs, long working hours and attendant tiredness often disguise the condition.
Unusually, Vivienne has all four symptoms - excessive daytime sleepiness, cataplexy (sudden loss of muscle tone), sleep paralysis and hallucinations while dozing or waking. When she was 10, her constant tiredness led her mother to seek medical help, but the doctor dismissed her as an attention seeker. As the symptoms persisted, they were put down to the trials of being a teenager. By the time she had finished university, she had learned to live with them and devised strategies which enabled her to cope with her job as a science teacher.
"Almost subconsciously, I found ways of avoiding sleep," says Vivienne. "I knew that if I was stationary for any length of time, I would probably fall asleep. In the classroom, I would be very active and walk around; move my hands a lot when I spoke. The movement would con my brain into believing I was really awake."
Although narcolepsy sufferers can fall asleep at a moment's notice, they rarely get a good night's sleep. "It's not proper sleep. I spend a lot of time aware that I am dreaming. It's not restful or refreshing. I can sleep for a good eight hours a night - and feel dreadful in the morning."
Eventually, Vivienne's many years of sleep deprivation caught up with her. Her time-keeping suffered, her short-term memory lapses caused by her tiredness began to annoy colleagues, and she found it increasingly hard to stay awake in class. Invigilation and marking became virtually impossible, and she grew to dread parents' evenings. "It's a cumulative thing and it is only really in the past three or four years that I have found it exceptionally difficult to cope. I had become head of department in an inner London school. During that time I put all my energies into work and I had very little life outside school. During the week all I did was school work. My quality of life was poor."
She moved to a quieter, rural school in Sussex, but things didn't improve. "There is a real problem with my time perception. What seems like five minutes can be several hours and vice versa. I used to have to be at work at 8.15 and I would get up at a quarter to six. And I only lived five minutes from school.
"I would wake up in the morning when the alarm clock went off and would sit up on the edge of the bed. A couple of seconds later I would fall asleep again. I have dreamed I have got up, gone into school, done a full day's teaching, had conversations with my colleagues, come home, done some marking - I have slept the entire day in the space of half an hour. I would be late for work and I had no explanation for it. All I could say was I overslept.
"I had a cataplectic attack during a class, and when I came to I was carted off to the local GP and told I was suffering from anxiety and depression. I was put on antidepressants, which made no difference whatsoever."
Vivienne's situation deteriorated, she became more forgetful and increasingly disorientated by even minor deviations from her daily routine. "I would be taking the wrong register, or I would look at the clock and by the time I looked away I had forgotten what time it was. I couldn't stay awake in meetings and management were having a go at me.
"It was all sliding away, and the knock-on effect was I was not doing the best I could for the kids in the school." In April last year, her then partner suggested she go to a sleep clinic. At first they thought she might be suffering from another sleep disorder, apnoea (a condition related to heavy snoring, with prolonged respiratory pauses, which leads to daytime drowsiness). But after being interviewed about her symptoms ("Nobody had asked me those kind of questions before") she was told she had narcolepsy. Her reaction was one of relief. "It explained so much. There was a time when I really thought I was going off my head. I thought they were going to turn around and say you have got some serious mental illness."
Even after she was diagnosed, Vivienne's school offered little support. She left her job last Christmas and is living on disability allowance while she waits to hear the outcome of her claim for early retirement. Meanwhile, she has been prescribed a new drug designed to reduce but not eliminate the symptoms - there is no cure for narcolepsy. And even though she can put a name to her ailments, she is still living with the everyday consequences. Until she heard it called cataplexy, Vivienne had always thought of the sudden loss of muscular control typically brought on by moments of stress or excitement as simply "feeling saggy". "If I laughed I would flop. I thought it was just me - I had never known any different."
She still laughs when she remembers some of the unexpected consequences of her narcolepsy, such as "waking up and finding my face in a plate of curry". But they can be dangerous. "I have fallen asleep during ironing, waking up to find lots of black smoke everywhere. I only iron if there's someone around now. I love baking, but I burn a lot of food."
Unlike many sufferers, she is able to drive a car ("there's movement, as well as constantly changing scenery"). But her social life suffers, even though she has many friends. "It can be a real downer. If I am in a cinema watching a film, I don't usually make it past the adverts. I have been asked to leave because I am chattering away in my sleep. If someone says 'Let's go for a meal', I am so tired I usually have to say no."
Perhaps the most disturbing aspect of her condition is the hallucinations. In normal sleep patterns, the dreaming phase signalled by rapid eye movement (REM) usually starts about 90 minutes after falling asleep. But in narcoleptics, REM sleep can begin within minutes, blurring the distinction between reality and dreams and causing hallucinations ranging from the terrifying to the comical.
She describes a recent episode as being like an out-of-body experience when she stood watching as a stranger moved towards her sleeping body with a knife in his hand. In another, furniture removal men began taking the contents of her house on to the grass verge outside. "It took several minutes for me to clock that everything was still as it was."
She hopes to begin a new career in occupational therapy but has fond memories of her time as a teacher. "I miss the children and I miss being in the classroom. We did have some fun. There was quite a lot of laughter and I miss that dreadfully. But I don't miss having to deal with the potentially complicated and unpleasant politics and paperwork and bureaucracy.
"For me the nice things were being in the classroom and being part of young people's lives. But the experience was becoming less and less positive.
"People ask me if I am jealous of people who bounce out of bed every morning, full of energy. But I'm not; I feel intrigued. Going to bed, having normal sleep and waking up in the morning feeling fantastic. I'd like to know what that is like."
SEIZED BY SOMNOLENCE
Narcolepsy was first diagnosed in 1880 by a French psychiatrist, Edouard Gelineau, who named it after a Greek word, narke, meaning "seized by somnolence".
Last year, American scientists found that dogs with narcolepsy had a genetic defect in the part of the brain that controls appetite, fuelling hopes of a breakthrough in treatment. Amphetamines ("speed") were traditionally prescribed, but "wake-promoting" drugs without the side-effects are now available.
In the 1991 film, My Own Private Idaho, starring River Phoenix and Keanu Reeves, Phoenix played a narcoleptic.
Support groups: www.narcolepsy.orgwww.websciences.orgnamet Group of investigators dedicated to improving care of narcolepsy sufferers: www.nursing.upenn.eduNarcolepsy Private chat room: http:tibicia.homepage.com