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TORMENT OF THE SCOT HIT BY THE SLEEPING DISEASE; Tragic builder Gary tells how he lost his family and wages a desperate daily battle to stay awake.

Byline: LISA ADAMS

SCOTS builder Gary Beattie was perched 20 feet up a ladder when he fell fast asleep. Totally oblivious to warning shouts from his workmates below, he wobbled precariously on the top rungs.

But he wasn't just nodding off on the job. Gary, 27, has the bizarre, life- threatening condition, narcolepsy.

It means he can be wide awake one minute, then plunge into a coma-like sleep. And he has no control or warning of an attack.

Gary, of Livingston, West Lothian, says narcolepsy has destroyed his life.

The illness and the sickening effects of the strong drugs he has to take every day just to stay awake have proved too much for his partner who left him, taking the couple's four-year-old son Jason with her.

"Things got really bad, and not just because of narcolepsy," says Gary.

"The side-effects of the drugs also killed my sex drive. She found it too hard to deal with. It got to the stage for her that it was like having two children, Jason and me. I feel lonely and I miss my son like crazy."

Around one in every 2000 people suffer from narcolepsy. Victims live in a twilight world between sleep and waking, tortured by constant sleepiness by day and unrefreshing sleep at night.

Laughing, crying or even having sex can trigger an attack, so many sufferers are afraid to express natural emotions. In more severe cases, they experience frightening hallucinations.

For years, many doctors refused to accept the condition even existed.

Victims such as Gary struggled to hold down a job, as they were accused of being lazy or overdoing it on the beers the night before. The reason narcoleptics had this uncontrollable urge to sleep remained a complete mystery.

But tonight's Horizon programme on BBC2 reveals this strange disease could hold the key to understanding and controlling sleep for the first time.

Scientists have discovered that all of us, except narcoleptics, have a chemical called orexin in our brain to keep us awake. When it's time to go to sleep, our body clock stops producing so much orexin and we nod off.

BUT narcoleptics have less than 10 per cent of the normal quota of orexin cells. Without this flooding through their system every morning, they find it's agony to stay awake.

Scientists are now working on developing an artificial orexin drug which could give people like Gary a way out of their shadowy worlds.

Professor Neil Douglas treats around 120 narcolepsy patients at the National Sleep Centre for Scotland in Edinburgh.

He has been measuring chemical levels in the brains of narcoleptics. So far, it is believed narcoleptics are born with normal levels of orexin but their body starts to attack the protein. The after-effects of a virus may cause this.

Professor Douglas says the discovery of orexin is a huge breakthrough.

He says: "Orexin has tremendous promise for the future. It is also an enormous relief for patients, as they know there is now a physical reason why they keep falling asleep."

But Professor Douglas says the potent effects of orexin could soon stretch way beyond just narcoleptics. In fact, it could transform forever the way we all live.

If orexin pills were available to all, then we could go without sleep for days. This could make way for a brave new non-stop world where people stayed awake 24 hours a day.

Professor Douglas adds: "It would obviously be attractive to many people to be able to gain eight hours a day so they could enjoy themselves more, see their family more or work more. But I think a 24-hour society could be hell. People would get fed up with being constantly required to work."

The power of orexin to keep people alert could be a life-saver. Surgeons would be alert enough to operate around the clock without a break and it could make the military a much more effective fighting machine. In war, tiredness can be an enemy.

Professor Douglas explains: "At the moment, fighter pilots in war situations over Afghanistan have to rely on artificial stimulants to keep them awake.

"These have some nasty side- effects. But scientists are working on the possibility that orexin could be side-effect-free. Then it could keep pilots alert but calm."

Already the hectic pace of 21st- century life has left one in four Scots suffering chronic sleep disorders. Poor sleeping patterns are becoming a bigger problem than depression.

But for now the priority is developing an orexin drug for narcoleptics.

PROFESSOR Douglas adds: "The quality of life for people with narcolepsy is extremely poor. It is a very disabling problem.

"The condition is being under-treated because people are not aware of just how debilitating it is. There is also a fear that using stimulant drugs like amphetamines is bad."

The cocktail of drugs Gary has to take to help him stay awake have horrific side-effects.

"I twitch and sweat," he says. "And I get paranoid, depressed and have anxiety attacks." Gary also suffers from cataplexy, a muscular limpness, which causes him to collapse, fully conscious, without warning. He can hear and see, but can't move a muscle.

Gary says: "I try to keep myself up by holding on to something, but my legs buckle.

"I then hit the floor like a ton of bricks. Because of the fits, they thought it was epilepsy, so I was mis-diagnosed to start with."

A team of scientists at the University of Texas first discovered orexin's vital links with sleep.

Dr Masachi Yanagisawa found that orexin is produced in the hypothalamus part of the brain. He then created mice unable to make the hormone.

The scientist found the mice abruptly fell asleep. Monitors showed electrical patterns in the mouse brains similar to those measured in human narcoleptics.

ARTIFICIAL orexin in drug form is not yet available but US scientists estimate it should be on the market in the next 10 years.

And for sufferers who are forced to live with narcolepsy, it can't come quickly enough. They are willing to try anything if it would mean freeing them from a nightmarish world.

Narcoleptic Gaynor Carr, 32, of Liverpool says the drug would be a lifeline. She has found it impossible to hold down a job as bosses keep firing her for falling asleep.

"At times I've felt suicidal," she says. "I've thought about it quite a few times, but I'm not that brave.

"My eyes are like concrete and I feel shattered. I feel so bleary-eyed I can't even focus, but for years I was just fobbed off by doctors.

"They didn't believe there was anything wrong.

"If they could find a cure for narcolepsy, it would be like going in for a competition and winning."

And as Gary Beattie stares at photographs of his son, it's clear the new hope the discovery of orexin brings to his family is also priceless.

"I would give my left arm, right arm, left leg, right leg just to get the chance to become an ordinary person again," says Gary.

l.adams@dailyrecord.co.uk

Living Nightmare is on BBC 2 tonight at 9pm.
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Title Annotation:Features
Publication:Daily Record (Glasgow, Scotland)
Date:Jan 16, 2003
Words:1189
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