A woman who suffers from an extreme form of narcolepsy told how her condition causes her to ‘fall asleep’ 100 times a day – simply BY LAUGHING.
Scientist Claire Allen, 35, suffers from bouts of ‘cataplexy’, a rare symptom of narcolepsy, triggered by strong emotions – such as fear, surprise or laughter.
The attacks cause her to lose control of her body and Claire collapses into a deep sleep – although she remains conscious throughout.
Each collapse lasts between 30 seconds to five minutes and at its worst Claire can endure up to 100 attacks each day.
A ”surprise” as simple as a chair in a room having moved to a different place or giggling at a shared joke could spark an attack and leave her helpless on the floor.
But Claire has found a new lease of life and now only suffers several attacks every month thanks to Xyrem, a new drug developed to help narcoleptics.
Claire, from Cambridge, described how she first loses her speech and vision before her body buckles – but she remains completely ”awake”.
She said: ”The attacks are caused by any emotional surprise or shock but laughter is definitely the strongest trigger.
”The very first symptoms were my head nodding like a child trying to stay awake and after six months I was having full collapses where my body would go from under me.
”A few years ago I stopped all my medications for a trial and I discovered the true extent of my symptoms – around 100 collapses a day.
”I find that they happen more often during social contact with other people, perhaps because I’m more self-conscious.
”There is no pain at all, but my speech will go first so I can’t communicate what is happening, followed by my vision and then my body crumples beneath me.
”It doesn’t feel any different to being awake, except that I can’t see or move at all as I’m in a total state of paralysis.
”It’s very odd for people around me to see me go down and then come round in a few minutes and be absolutely fine.”
The first time I slept for more than three hours it was incredible
Narcolepsy causes severe disruption to sleep patterns and Claire, who works as a research scientist with the British Antarctic Survey, wakes up around 20 to 30 times each night.
But the new drug Xyrem puts Claire into a deep sleep for three-and-a-half hours so she must take a second dose in the middle of the the night to get a full seven hours sleep.
She said: ”For the last five years I hadn’t slept for more than an hour at a time so the first time I slept for more than three hours it was incredible.
”All of the things that your body normally does at night – like repairing your skin and your nails and hair growing – just weren’t happening for me.
”Now I am much better at managing my lifestyle and getting plenty of rest to cut down on the cataplexic attacks.
”Many people go undiagnosed for many years. having only half of my symptoms could have a devastating effect on someone’s life.”
Researchers have found that narcolepsy may be caused by an irregularity to the brain cells which control the sleep hormone hypocretin.
An estimated 25,000 people in the UK suffer from narcolepsy but many remain undiagnosed due to the varying nature of the symptoms.
Dr John Shneerson, an expert at Papworth Hospital’s Sleep Centre in Cambridge, said that narcoleptics can wait for more than a decade for diagnosis.
He said: ”Quality of life can be badly hit if untreated. Their studies suffer. They avoid driving. They are afraid to look after young children on their own and take baths.
”They don’t get into relationships, get promoted or do physical exercise.
”A great many lives would be improved if narcolepsy were better recognised. People are surprised by how well it’s possible to manage.”
