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24 September 2014
Science & Nature: TV & Radio Follow-upScience & Nature
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Gary Beattie has narcolepsy - he once fell asleep standing 7m up a ladder
BBC Two, Thursday 16 January 2003, 9pm
Living Nightmare
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Living Nightmare - programme summary

Sleeping is an essential part of everyone's life yet it remains little understood is barely understood. You might think it's a relaxing recharge but in fact your brain is working harder at times overnight than when you're conscious in the day.

"Certain times during sleep, the brain is more active than during wakefulness"

Dr Thomas Kilduff, Stanford Research Institute International

Fresh insight into why and how we sleep has come from studying people with sleep disorders, especially sufferers of narcolepsy. The condition means that people fall asleep many times a day, completely out of the blue. A less known symptom is paralysing attacks, that can cause narcoleptics to fall to the ground - unable to move - several times a day. If a way can be found to ease their symptoms, it could open the way to helping any of us to control our sleep patterns and perhaps even to go without rest while staying alert.

Gaynor Carr has been nodding off routinely since the age of seven. Her narcolepsy has made holding down a job impossible and made her question the idea of ever having children. Gary Beattie used to work in construction, until he fell asleep 7m up a ladder. He not only loses consciousness, his body becomes paralysed in a so-called cataleptic attack. Both of them say that showing emotion sparks the paralysing attacks and that has forced them to avoid laughing and crying. Bill Baird worked in finance but describes his stockbroking days as a race. The emotion of closing a deal would bring on a fit; he had constantly to hope he could get a client's signature before his almost inevitable collapse. His sleep is restless, with vivid nightmares when he is able to hear his surroundings while seeing terrifying hallucinations.

The side effects of speed

The primary treatment for narcoleptics now is to take stimulant drugs such as amphetamines. Gaynor is on the highest allowable dose of dexamphetamine ('speed') yet she is already starting to build up tolerance to the treatment. The side effects make her twitchy and prone to panic attacks.

"You fall asleep and you're lazy, you're on something"

Gaynor Carr, narcolepsy sufferer

All three people find others' lack of belief in the condition galling. Even some doctors have mistakenly suggested the collapses are due to another problem - anaemia, thyroid problems or epilepsy. Above all, many suspected it was a purely psychological problem.

Research at Stanford University in the 1970s helped to correct that. They studied a pack of dogs who seemed continually to fall asleep when they got excited. This animal evidence was proof that there was a physical basis to narcolepsy.

Thomas Kilduff was enthralled by the prospect that understanding narcolepsy could hold the key to an even bigger question: why do we sleep? He started a research project breeding doberman dogs with narcolepsy but soon found that they made poor subjects. The canine narcolepsy was caused by a simple genetic defect, quite unlike the human form. He eventually abandoned his sleep research and moved into studying obesity.

Brain chemistry

Thomas Kilduff's involvement with narcolepsy was not over however. Looking for signalling chemicals in the brain, neurotransmitters, he began taking detailed X-ray images of the hypothalamus at the base of people's brains. With a central role in governing body processes, he was confident it could help unlock the secrets behind what affects appetite. On one set of X-ray pictures he found a chemical that seemed to be intimately connected with body weight: orexin.

"[Orexin] is important in keeping you awake, keeping you alert"

Dr Jerry Siegel, University of California, Los Angeles

A link between orexin, appetite and weight control would be dynamite. Dr Masashi Yanagisawa at the University of Texas followed up a hunch that orexin must stimulate appetite and thereby dictate food consumption. He bred mice unable to produce orexin and found that they did indeed eat less. Yet he was aware of a huge problem with his hypothesis. The mice were eating less yet still putting on weight. Filming them around the clock, he discovered that they were far less active at night than normal mice. They were having cataleptic fits and falling asleep - they had narcolepsy. The orexin was not controlling obesity; it was dictating the animals' activity levels through their sleep patterns.

A potential cure

The next step for researchers was to examine the brains of people with narcolepsy to see how much orexin they produced. Jerry Siegel found that compared to a healthy person, the hypothalamus of a narcoleptic has just one tenth of the number of cells that make the crucial neurotransmitter. The clear suggestion is that finding a way to administer orexin could offer a route to a cure for narcolepsy.

"Orexin? I'd definitely take it. I'd leg it up there and grab it"

Gaynor Carr

Orexin has potential to become a lifechanging drug for narcoleptics. It could also alter all our lifestyles. Orexin, it seems, plays a vital role in waking us up. Without it we would be naturally asleep all the time. At night, your body clock stops the hypothalamus producing the neurochemical and we go to sleep. Could an orexin drug keep us awake all the time, without side effects?

The US Army is interested in the potential . Its pilots currently make use of amphetamine drugs to help them combat tiredness. Yet it is hard to think of an environment in which the drugs' downsides -twitchiness, panic attacks - could be more risky. Any drug that was able naturally to boost alertness would be a vast improvement for them. The 'voluntary' use of amphetamines by US Air Force pilots was raised as a factor in the friendly fire deaths of four Canadian soldiers killed in Afghanistan in April 2002.

It could be equally applicable for all of us as we increasingly move towards a round-the-clock society. Shiftworkers may one day benefit from drugs to ease their bodyclocks into alternative sleep patterns. The fear is that we could be starting down the road to a world of relentless pressure.

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