Women who can only SLEEP with their eyes OPEN
Sound amusing? Sufferers reveal it’s anything but . . .
TO fellow passengers on her commuter train, Phoebe Campbell looks wide awake. She appears to be staring out of the window into the distance, perhaps daydreaming.
On closer inspection, though, her eyes are strangely glassy and unblinking and if you tried to strike up a conversation you might be offended by her lack of response.
for Phoebe is sound asleep. She has a condition called nocturnal lagophthal-mos that leaves sufferers unable to fully close their eyes when they nod off.
It sounds, at first, like a minor inconvenience. You might risk looking rather odd to partners or roommates, not to mention strangers should you snatch 40 winks on public transport.
But the condition also causes distressing health problems, including dry, sore eyes which are prone to infection, scarring to the cornea and even possible loss of sight. In Phoebe’s case, it has meant decades of sleep deprivation. She is now unable to sleep soundly without wearing an eye mask.
‘My greatest challenges are getting to sleep and staying asleep during the night,’ says Phoebe, 31, a charity communications manager who lives in london. ‘like everyone else, I close my eyes to go to sleep but when I drift off I wake with a start because I am suddenly aware of my eyes opening, which is a very odd sensation.
‘Any light — the infrared of a TV standby button in a hotel room or the flashing light on a smoke alarm — wakes me continually during the night. The moment dawn breaks I’m awake. I have rarely had a restful night’s sleep.’
It is thought the condition affects around 10 per cent of the population, including opera singer Katherine Jenkins, who has talked of living with it since she was a child.
CerI Smith-Jaynes is an optometrist and spokesman for the Association of Optometrists. She says the problem can have various causes. ‘There can be medical reasons, such as a stroke, a knock to the face, or the facial paralysis condition Bell’s palsy,’ adding that her brother slept with his eyes open as a child.
‘Or it could be down to thyroid eye disease, which makes the eyeball bulge forward so the lids physically can’t meet over it, but in many cases it’s just physiological; the way you are.
‘The eyelids may be parted by a few millimetres or barely closed at all. The main problem is that the lower part of the eye is exposed.
‘fortunately most of us have Bell’s phenomenon; a natural defence mechanism in which the eyeball rolls upwards to protect the cornea; the transparent layer covering the front of the eye.
‘when our eyes are closed during sleep, the surface of the eye is exposed to moisture from the tear ducts,’ says Ceri Smith-Jaynes, ‘but with nocturnal lagophthalmos the lids are open so they are unable to help spread the necessary film of moisture over the eye, as happens when blinking, to wash away dust and bacteria.
‘In the worst case scenario, the cornea can become damaged and there is a risk of sight loss.
‘Many people with nocturnal lagophthalmos also suffer from blurred vision after waking because their eyes are so dry.’
Phoebe became aware of her condition when she was 13 and had a sleepover with friends: ‘One of them said she had woken in the night and freaked out when she saw my eyes were wide open.
‘On holiday with my cousin in Croatia a couple of years ago, she spent 20 minutes chatting to me on the way from the airport to our hotel and thought I was being rude when I didn’t engage. eventually she realised I was asleep.’
Phoebe never sought her GP’s advice, not believing it serious enough to trouble him, but sleeping with her eyes open is problematic. ‘Two years ago I invested in a good eye mask and sleep with it on every night,’ she says. ‘I’d been having weird dreams which I can only liken to dreaming what I was seeing, particularly on public transport, such as dreaming what was going on around me with passengers coming and going on the Tube. It was disturbing.
‘As a child I had a rare muscular disease and I’ve always wondered if a side-effect is that the muscles around my eyes are not strong enough to keep them shut.’ Phoebe’s eye mask has helped her to sleep, but it does not counteract the embarrassment nocturnal lagophthalmus can cause.
She has been with her boyfriend, an illustrator, for 18 months and he understands the condition, but previous boyfriends have been startled — one said she looked like she was dead. Ceri Smith-Jaynes suggests eye drops and ointment to keep eyes lubricated at night. Moisture chamber glasses (goggles with a moist pad inside) can also help.
‘Some sufferers find that taping swabs over their eyes encourages them to stay closed,’ she says. ‘In extreme cases, usually where the lids are too wide open during waking hours too, a gold weight can be surgically inserted in the lids to weigh them down or the surgeon can stitch the lids together a third of the way along, bringing them close enough together to stop the eye being so exposed at night.’
law student emma Darley, 29, does not want surgery. Until recently, she hadn’t made the connection between her dry eyes and blurred vision and the fact she has always slept with her eyes open.
‘During the past 12 months I’ve noticed my eyes are either dry and sore, or they water a lot, which makes it uncomfortable to wear my contact lenses,’ says emma, who is short-sighted. She lives in Preston with husband Daniel, 34, an electrician, and children Jonny, four, and lewis, 18 months.
‘Because I have had nocturnal lagophthalmus my whole life I almost forget about it. I put my sore eyes down to being a sleepdeprived mum and studying towards my law degree.
‘Until last year, the condition had never caused any physical problems, so I looked upon it as nothing to worry about or waste NHS time on.
‘My mum didn’t think it was anything to worry about and I trusted her judgment. Now I’m having definite problems, I’m eager to discuss them with my optician.’
OSTeOPATH and clinical director Danielle Pain, 34, who treats members of the British Olympic team at her clinic in Oxford, slept with her eyes open as a child.
‘My mum found it disconcerting,’ says Danielle, who is single and lives in Thame, Oxfordshire, with her daughter Madison, ten, ‘but we accepted it as a quirk.
‘The main problem is I am more sensitive to light, which affects my quality of sleep. I have blackout blinds in my bedroom, otherwise when it’s light outside I am awake, — a real problem in summer.
‘I never sought medical advice. In the early months of my relationship with my daughter’s father, he was startled when he found me with my eyes open as if I was staring at him.’
Professor Kevin Morgan, who leads loughborough University Sleep research Centre, says that people with nocturnal lagophthalmus should beware: ‘Sleep is safer with your eyes shut because they are protected but in most cases the condition is probably more disturbing for anyone looking at the person than the sufferer.
‘If you’ve been told for as long as you can remember that you sleep with your eyes open, it’s probably physiological. But if it’s something you suddenly start doing then it would be smart to get checked out by your GP to rule out more serious problems such as a tumour or nerve damage.
‘Sleep deprivation can lead to an increased risk of serious health problems, including heart disease and diabetes.’