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London - Thousands of otherwise healthy people put up with a level of sleep deprivation that would drive the rest of us insane. But they are not the usual candidates for insomnia, such as shift workers or those with severe mental illness.
Instead, they belong to a newly identified group of people born without the “comfort” genes needed for easy sleep. This means they are immune to the feeling of warmth and relaxation which sends an average person off to sleep within 15 minutes.
Their genes are designed instead to maintain a state of mental alertness. This makes normal, prolonged sleep impossible so they sleep fitfully, in only short bursts.
Even then, their lack of “comfort” genes may mean they struggle to get comfortable, fussing about the bedding or finding their sleeping position.
There are other so-called insomnia genes - some cause repeated periods of wakefulness in the small hours of the night or at the slightest disturbance, or drive an affected person to leap out of bed raring to start the day at 4am, but leave them exhausted by 4pm.
Until recently, insomnia was considered a purely psychological complaint triggered by stress, grief, or sleep disruption as a result of shift work or jet lag. But doctors are now unravelling the genetic explanation of why at least one-third of us have intermittent or constant sleep problems.
It’s already thought there could be six or more different types of insomnia linked to genes. This means it will be possible to develop drugs to block the effect of the chemical signals they produce.
Insomnia genes originate from our early human ancestry, explains Eus van Someren, head of sleep research at the Netherlands Institute for Neuroscience and one of the global experts leading the drive to identify the genes. One or two members of a tribe who could be relied on to stay awake would be selected to guard the sleeping community from attack.
Professor van Someren says unexplained sleeplessness seldom affects children, but seems to arise during adulthood, for reasons that are not understood.
Some studies have shown that 40 percent of the population is affected by the age of 60 - the problem often runs in families, making a genetic link very persuasive.
Jennifer Clark, a 35-year-old childcare worker, regularly hauls herself out of bed after only three or four hours sleep for her job taking charge of a roomful of four and five-year-olds.
Her insomnia came on three years ago. “It comes and goes,” she says. “I have periods of up to two weeks at a time when I get three to four hours sleep a night, or five if I’m lucky.
“It’s strange because I slept well as a child and as a teenager. Although I always have things on my mind, it is no more than anyone else, and I am not depressed or anxious. I wake up and my mind starts whirling, and it’s difficult to go back to sleep.”
Jennifer, who is single and shares a flat with friends in London, admits she often feels exhausted, but cannot let the problem affect her work. The condition also affects her mother.
Kathy Prosser also suffers from unexplained insomnia. The 59-year-old, who lives with her husband Joe, 76, in Brentwood, Essex, says her mother was also affected. She died three years ago, after putting up with decades of just three hours sleep a night.
“It started about 20 years ago. When my mom was alive, we used to compare notes about what we had tried,” she says.
“I will try anything, but even if a treatment works it never lasts long. I’m regularly prowling the house at 4am, but luckily nothing wakes my husband. I’m always tired during the day, and by mid-afternoon I often feel sick with it.
“My GP is sympathetic and has offered sleeping pills, but warned me not to take them too often because you can get addicted. As a result, I’m terrified and take them only when it’s really bad.”
Kathy works as a part-time school lunchtime supervisor, one of a team watching over 180 excitable four to seven-year-olds, but, like Jennifer, she is determined her job won’t suffer.
“It is something you just learn to put up with,” she says.
Luckily, none of the couple’s three children, aged 36 to 41, or six grandchildren, aged three to 23, has been affected by insomnia, but the latest evidence shows it is likely insomnia will hit at least some of them as they get older.
Last month, the Royal Society of Medicine held a specialist meeting to discuss the latest research findings on the genetics of sleep disorders.
“All of this information is very new, and our understanding is still in its infancy,” said Adrian Williams, professor of sleep medicine at King’s College, London.
“We never used to think about family history because it wasn’t considered relevant, now we realise it is very relevant indeed. Doctors used to dismiss insomnia because they couldn’t help people, but now neuroscience, which has given us the ability to detect and measure brain activity, is producing answers which show genetic traits.”
Several large-scale projects have begun in Europe and the US to track affected people and search for genes they have in common.
One of them has been set up by Professor van Someren. He has assembled a database of 10,000 insomniacs who complete regular online questionnaires about their sleep patterns. The researchers then group them into genetic subtypes according to the way insomnia affects them.
Those with the strongest “type” profiles will then undergo detailed blood or saliva tests to identify the genes they have in common.
“We are hoping to extend this project to England to get a really large population sample,” Professor van Someren said. “One of the most interesting discoveries is that some insomniacs seem to have a diminished capacity to judge comfort. If you put materials with different temperatures on their skin, they seem to give random answers about whether they like it or not.
“Feeling warm and comfortable is essential in falling asleep,” he says, adding that scientists still don’t know how many biological processes are involved in falling asleep, nor the genes involved in each.
Some of the relevant genes have already been identified in experiments on mice at the Medical Research Council’s mammalian genetics unit.
Three of them have been given codenames: Afh, or after hours, which affects those who can’t get to sleep; Edo, or early doors, for those who go to sleep at tea time and wake up in the middle of the night; and Sci, for short circuit, which refers to those unable to stay asleep for more than a short time.
Within the next few years, these findings are expected to lead to drugs aimed at blocking the chemicals produced by these rogue genes, meaning affected people will at last get a good night’s sleep.
Meanwhile, there is continued concern about lack of treatment for insomniacs.
There are also growing worries about the increasing and long-term use of sleeping pills - under NICE guidelines these are meant to be used for only four weeks, as they can be highly addictive.
A recent study by King’s College London found around one in five prescriptions were for longer than eight weeks.
Many patients turn instead to alternative remedies. Indeed, Jennifer, a complementary medicine enthusiast, has tried dozens, including a reflexology patch, Patch-It, which comes in the form of a sticky herb-releasing patch placed on the ball of the foot.
Kathy has tested Alpha-Stim, a form of electrotherapy delivered to the head by tiny clips on the earlobes, which is said to alter brainwaves into a more relaxed, sleep-inducing pattern.
But according to Colin Espie, professor of sleep medicine at Glasgow university, cognitive behavioural therapy (CBT), the so-called talking therapy, is the only treatment that can offset the effects of genetic insomnia.
The treatment works by helping people understand the racing thoughts which keep them awake, and not worry about them.
“There is no evidence at all for reflexology or any of these alternative insomnia therapies, but there is plenty of evidence to support the use of CBT,” says Professor Espie.
“It is outrageous that this therapy is available on the NHS to treat mental illness and behavioural problems but not for insomnia. We do hope that will change.”
In the meantime, one piece of sound advice for insomniacs comes from Professor Williams. “Most insomniacs spend far too long in bed,” he says. “If you reduce the amount of time you spend trying to get to sleep, you’re far more likely to sleep better when you do.” - Daily Mail