Women whose night terrors leave them too scared to go to bed
Nancy is actually asleep, but suffering frighteningly vivid hallucinations. She’s just one of a surprising number of...
WheN she agreed to allow a camera into her bedroom to record what happened once she’d settled down for the night, Nancy Lewendon knew it would make interesting viewing.
She wasn’t wrong: within a couple of hours of the camera rolling, Nancy, 20, can be seen springing up, scrabbling at her bed covers and muttering with panic, her eyes wide with fear as she stares, terrified, into the corner of her bedroom.
What is she seeing? ‘It’s usually spiders, or snakes,’ says Nancy. ‘It’s like you’re hallucinating: your eyes are open and you think that it’s actually happening but it’s all in your mind.’ At worst, these cruel nocturnal awakenings can happen three times a night.
That, combined with Nancy’s propensity for sleepwalking, means she hasn’t had a good night’s sleep for years. ‘I’ve just got used to being permanently tired,’ she says.
She is not alone. Britons are the worst sleepers in europe, with a third of us suffering disorders. People like Nancy though, suffer from far more extreme versions. It’s a phenomenon examined in a new documentary series, which tries to address why something that should come naturally can prove so impossible.
Those taking part suffer everything from nightmares and narcolepsy to chronic insomnia and sleep paralysis, a condition where sufferers are temporarily unable to move.
All are unanimous that lack of sleep blights their lives and are so desperate to regain a sense of normal nocturnal behaviour that they agreed to have their night-time activity monitored and to compile a sleep diary before subjecting themselves to a night in a sleep clinic, set up for the show.
It used specialised equipment to analyse everything from their eating and drinking habits to their nocturnal brainwaves.
As artist Izzy, 20, who also suffers from night terrors, says: ‘It’s a terrifying question to ask yourself: “Will I ever be able to sleep?” ’
But it’s a question consultant neurologist and sleep expert Dr Guy Leschziner is trying to answer. he runs the country’s premier sleep clinic at Guy’s and St Thomas’ hospital in London, and believes that everything from an individual’s psychological state to their environment, offers vital clues to the root of the problem.
‘A bad night’s sleep can be caused by what’s going on in your mind, your genetics, or even the state of your bedroom,’ says Dr Leschziner.
‘By looking at this whole range of factors I believe we can alleviate or even cure the most debilitating of sleep disorders.’
Nancy, a theatre student at the university of Bedfordshire, hasn’t had an uninterrupted night’s sleep for years.
‘There’s not a time that I can’t remember sleepwalking,’ she says. ‘Sometimes it happens up to three or four times a night. I’ll wake up and I’ve been moving around my room. I don’t always remember it. There have been times when I’ve looked for my laptop in the morning only to find it in my underwear drawer.’
At home in Corsham, near Bath, Mum Jo and Dad Guy would often hear Nancy wandering around in the early hours.
‘I once tried to go to the toilet in the laundry basket but luckily my mum found me just in time,’ she says. Jo and Guy have spent hundreds, if not thousands, of nights coaxing their sleepwalking daughter back to bed.
The following morning, they would take it in turns to tell her: ‘You were messing about in your sleep again last night.’
‘That was the strangest feeling,’ Nancy says. ‘So weird — and it still is — because it always makes me realise I’ve been completely out of control. When I watched some of the footage I was really shocked — it was nerve-racking to see myself acting like that, but completely unconscious. It made me fear what else I could do without knowing.’
That Nancy has continued to sleepwalk beyond her teens is unusual. One in three of us does it at some point in our lives, but most stop in childhood.
But around the age of 16, Nancy’s night terrors started. ‘The first time it happened I could see spiders in my room,’ she says.
‘I’d jump out of bed, heart racing, and run out the room panicking before eventually calming down and going back to bed.’
Worse, this could happen repeatedly over a single night. ‘It’s horrible — your body reacts to being under attack so you get this huge adrenaline rush and your heart is beating really fast.’
Little wonder she struggles with her energy levels to the extent that a few years ago she went to see her GP who gave her medication that made no difference.
So when the opportunity arose to take part in the tests, she took it. ‘I was also interested to get a proper insight into what actually happened when the lights go out,’ she says.
QuITe a lot, as the programme reveals. Nancy springs awake after an hour or two, shouts in terror at imaginary tormentors, gets out of bed and wanders around the room, where she stares — eyes open but still asleep — into a camera lens, as if eye-balling her inquisitors.
Sleep technicians, who monitored her overnight, reported their findings to Dr Leschziner.
In Sussex it is a similar scene for Izzy, 20, who, like Nancy, suffers from night terrors. In her case they usually manifest themselves as ‘black, gothic demons’.
‘They start ripping flesh at my legs, at my skin, biting into me,’ she says. ‘I can’t put across how real it feels.’
Now 12 years in to these nocturnal horrors, Izzy has turned to extreme measures: too frightened to go to bed, she forces herself to stay awake for days before collapsing from an exhaustion so intense that she sleeps through the following day and night.
‘The longest I’ve ever slept is 46 hours. My dad had to come and wake me up to make sure I was still alive,’ she recalls.
Then, whenever she strives to follow a normal sleep pattern the night terrors unfold again, triggering another cycle of avoidance and collapse.
The sleep deprivation — and the psychological stress of worrying about the terror — has had a huge impact on her life.
‘I have a headache like the hangover from hell,’ she says. ‘Sometimes I’m so tired I feel sick.’ Worried father Philip says his daughter is ‘like a zombie’ much of the time.
‘It’s really scary,’ he says. ‘She’s severely fatigued.’
Phil harris, 48, can relate to that — although in his case there is a clear medical diagnosis.
Two years ago the BT client services director was diagnosed with the rare, long-term brain disorder narcolepsy, which affects the body’s ability to regulate its sleep-wake cycle. It affects around one in 300 and in Phil’s case appears to have been triggered by flu after a ski trip.
‘I was falling asleep at odd times and my legs started to give way when I laughed,’ he recalls.
‘It was mild at first, so we thought it might be something to do with my blood pressure. I ended up in A&e while they checked my heart out.’
The symptoms got worse until, one night, as he put his children Cammie, seven, and Austin, six, to bed, he fell to the floor and couldn’t get up after shouting at them to behave.
‘The kids were laughing — they thought I was just play acting. I could hear them, I could see them, but I couldn’t get up. It was bizarre,’ he says.
Researching his symptoms with wife Kim, 40, Phil was sure he had narcolepsy and cataplexy, a sudden muscular weakness triggered by strong emotions such as laughter, anger or surprise.
It was a gloomy self-diagnosis which, after extensive tests, was confirmed by a neurologist.
‘In my case, it’s thought to be a reaction to the flu virus,’ says Phil. ‘It’s an auto-immune reaction so your body attacks the part of the brain that controls your sleep, thinking it’s part of the virus.’
Moreover, there is no cure, only management through medication and behaviour.
‘In the early days, I had to be continually aware of my emotions to avoid any extremes,’ he says.
‘even something as minor as being anxious about being late could mean I would be on my knees in the road. It’s the oddest feeling: I can hear everything but I am unable to move as my muscles stop working.’
Phil was allowed to work from home as he came to terms with his condition, but struggled with the impact on his family.
‘It was devastating. My kids were younger and they didn’t really get it.’
He was prescribed medication to help regulate his sleep patterns, but was wary of taking a high dose, choosing to function on the minimum.
‘I was worried about the side-effects which include everything from mood swings to severe joint pain,’ he says.
It meant that when he took part in the documentary he was barely functioning. ‘I was intrigued to see what they would find about the quality of my sleep and whether there were other things I could do to improve it,’ he says.
The answer — for Phil and all the participants — was, happily, yes.
Having been examined by a psychologist, sleep environment expert, a sleep physiologist and a neurologist, each participant was issued with an individual treatment plan. After six weeks, they all reported improvements.
Izzy — whose body clock was haywire after years of feast and famine — was prescribed regular bedtimes and wake-ups, aided by prescription drug melatonin and 20 minutes in front of a light-box each morning to shock her body into a strict day-night routine.
The team felt Nancy’s problems were 50per cent environmental and 50 per cent psychological.
‘I have a genetic predisposition to insomnia, but stress plays a huge part,’ she says.
‘At the same time they said having consistency in my sleep environment was really important.’
So set bed times, a cool temperature, no caffeine after 3pm and a white-noise machine to eliminate random external noise were recommended — not easy as a student!
Nonetheless she says: ‘When I first came back to university it was hard to get on top of it, but it’s definitely helped and I did see a difference after the show.’
As for Phil, who has the most chronic condition, there were lessons to be learned. ‘Guy told me I had to eliminate the cataplexy as the first step because it would impact my life further as I lived in fear of the next attack. To do that, I had to get over my aversion to higher medication,’ he says.
‘I was also given little life hacks which help — like identifying the most tired part of the day and taking a nap just before.’
Consistency is key: Phil’s medication effectively tricks his body into a deep sleep — and for it to work effectively he has to go to bed at 11 pm and not eat for two hours before then.
He also has to set his alarm for 3 am to take the second dose — and he can no longer drink alcohol.
It has meant making major changes to his lifestyle. ‘I’m not back to the person I was, but I’m learning to live around my condition,’ he says.