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World champion athlete Nicola Barke beat narcolepsy that left her fast asleep in her birthday cake

At her birthday party, then-four-year-old Nicola Barke leaned forward to blow out the candles on her cake. What happened next didn’t follow the usual script.

“Everyone sang Happy Birthday and I fell asleep with my face in the cake,” said Nicola, now 28, former world taekwondo champion and now professional boxer. “I woke up an hour later with my bangs partially singed.”

Her mother Joan, a retired finance director, recalls, “I attribute it to her excitement and fatigue. The guests laughed and that was our reaction, because she often fell asleep at strange times – once in a bowl of strawberries and cream.

“Sometimes we were in the park and she lay still for an hour, maybe two hours. At the crèche, the staff often said, “She slept through her lunch.” But she was my first child and I didn’t mind.’

Nicola Barke, 28, is a former Taekwondo World Champion and now a professional boxer

Nicola Barke, 28, is a former Taekwondo World Champion and now a professional boxer

Nicola had narcolepsy, a neurological condition that affects the brain's ability to regulate a normal sleep-wake cycle, causing patients to fall asleep without warning.  In the photo: Nicola about 15 months old

Nicola had narcolepsy, a neurological condition that affects the brain’s ability to regulate a normal sleep-wake cycle, causing patients to fall asleep without warning. In the photo: Nicola about 15 months old

Joan finally realized that her daughter’s afternoon naps weren’t normal when Nicola was five and the headmistress called her.’ She told me that Nicola was sitting in the front row at the meeting and fell over and crashed to the floor with a bang,” Joan recalls. “Her teacher said this happened in class too.

“I felt awful hearing this because we must have seemed so casual about it. But until then we didn’t understand that it could be serious.’

Nicola’s GP immediately referred her to the local hospital.

What exactly causes narcolepsy is unclear.  But dr.  Desaline Joseph, a neurologist in pediatric sleep medicine at Guy's and St Thomas' NHS Foundation Trust, London, explains: 'There are genetic and environmental factors and possibly an autoimmune reaction that cause narcolepsy'

What exactly causes narcolepsy is unclear. But dr. Desaline Joseph, a neurologist in pediatric sleep medicine at Guy’s and St Thomas’ NHS Foundation Trust, London, explains: ‘There are genetic and environmental factors and possibly an autoimmune reaction that cause narcolepsy’

Joan recalls, “I got a call from the consultant shortly after he said there was a spot on the x-ray; he wanted to operate and take a sample of her brain. But my husband Paul was not happy and wanted a second opinion. So we went down the private route. It was the best money we’ve ever spent.’

Then a friend recommended a neurologist on Harley Street, whom they saw the next day. After tests, the neurologist was convinced that the “stain” was on the scan itself, rather than on Nicola’s brain.

Instead, he said Nicola had narcolepsy, a neurological disorder that affects the brain’s ability to regulate a normal sleep-wake cycle, causing patients to fall asleep without warning.

It affects around 30,000 people in the UK. In addition to excessive daytime sleepiness — causing naps that can last seconds, minutes, or hours — narcoleptics experience sleep paralysis (a temporary inability to move or speak) and disrupted sleep.

We normally have an hour to 90 minutes of deep sleep when we pass out, before entering the first cycle of rapid eye movement (REM) sleep when we dream.

Day and night, however, narcoleptics move into REM sleep much more suddenly and are often aware of their sleep paralysis — when the brain ‘freezes’ muscles to prevent us from hurting ourselves.

Nicola describes her often quite terrifying experiences when she “sleeps” at night.

Her mother Joan finally realized that her daughter's afternoon naps were not normal when Nicola was five and the headmistress called her.'  She told me that Nicola was sitting in the front row at the meeting and fell over and crashed to the floor with a bang,” Joan recalls.

Her mother Joan finally realized that her daughter’s afternoon naps were not normal when Nicola was five and the headmistress called her.’ She told me that Nicola was sitting in the front row at the meeting and fell over and crashed to the floor with a bang,” Joan recalls.

“When I was in college, I had a recurring dream where I saw someone in a balaclava in the mirror, they climbed on the bed and I couldn’t help it – I was terrified.

“I still have weird, dark dreams. I’m always hounded by a person dressed in black with a balaclava. Or they have a knife. It feels very real and traumatic.”

What exactly causes narcolepsy is unclear. But dr. Desaline Joseph, a neurologist in pediatric sleep medicine at Guy’s and St Thomas’ NHS Foundation Trust, London, explains: “There are genetic and environmental factors and possibly an autoimmune response that cause narcolepsy.”

Indeed, a Danish study published in Nature Communications in 2019 seemed to confirm a link with autoimmunity. It showed that people with narcolepsy had ‘autoreactive’ cells, that is, cells that work against the body and are also found in people with autoimmune diseases, such as type 1 diabetes or multiple sclerosis.

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One of the problems for people with narcolepsy is getting a diagnosis, Dr. Joseph says.

“Some narcolepsy patients can be very lucky and it can be as little as two and a half years between getting symptoms and arriving at our clinic, but for some it can be a 10-year delay,” she says.

“The delay will be multifactorial, possibly a lack of awareness among the general public, who will view symptoms such as someone falling asleep as benign.

“But once they come to the clinic, especially within our pediatrics department, potential narcolepsy patients are quickly identified. We see them faster than a child with another sleep disorder, because it is time-critical for their education to know definitively whether they have narcolepsy and need treatment.’

The onset of narcolepsy is often in childhood and it can cause huge disruptions in education and social life. As Nicola says, “I fell asleep during exams before high school and was put on the bottom set for everything. [Despite this she went on to gain a first-class degree in biomedical sciences.] My sister Georgina went out with her friends, but I never did because I was about to fall asleep at any moment.’

Although there is no cure, narcolepsy can sometimes improve spontaneously; otherwise, treatment is about reducing symptoms. Despite sleeping during the day, narcoleptics do not sleep more than average in a 24-hour period. The problem is that their sleep is often bad.

“Behavioural change is the foundation of any treatment,” says Dr. Joseph. This involves sticking to a strict schedule of sleep and wakefulness to follow the body’s internal clock, and regular exercise [this boosts levels of serotonin, a chemical involved in the sleep-wake cycle]†

“Taking scheduled naps during school or work breaks makes people feel refreshed and more alert and can reduce sudden sleep attacks.

‘The majority of our children are prescribed stimulant drugs, mostly methylphenidate’ [better known as Ritalin and usually used to treat attention deficit hyperactivity disorder] to promote wakefulness.’

Another option is modafinil (also called Provigil), but ‘this is used with caution as it can cause painful skin rashes and blisters’.

“We have a holistic view,” adds Dr. Joseph. ‘Clinical psychologists work together with the family and the school. If a young person needs more than 30 minutes twice a day [the threshold for abnormal napping]we may need to introduce or adjust medication.’

Adult patients may be prescribed tricyclic antidepressants, which decrease REM sleep, which is believed to be responsible for symptoms such as hallucinations and sleep paralysis.

NHS advice suggests narcolepsy at least 20 minutes of exercise per day can help feel more awake during the day

NHS advice suggests narcolepsy at least 20 minutes of exercise per day can help feel more awake during the day

Although Nicola fell asleep several times a day during classes, the school and her parents worked together to protect her, and life went on a strict schedule — and she would set her own schedule to make up for classes outside of school.

Her great passions, martial arts and boxing, also seem to have helped. “My sudden sleep attacks seemed to subside after I started taekwondo and haven’t had that since I was 21,” says Nicola.

In fact, NHS advice suggests that exercise of at least 20 minutes a day can help narcoleptics feel more awake during the day.

Nicola started taekwondo at the age of 16 and became world champion at the age of 19. She became a professional boxer last year, fighting under the name The Burmese Python (a nod to her mother’s Myanmar roots) and training six days a week.

Although she gets nine hours of sleep a night, but “almost always feels more tired than I should be,” she has no intention of seeing a doctor.

‘Swallowing medicines is complicated when you are an athlete. I gave myself five years to get a world title. So for now I would only go to a doctor if they gave me advice that could improve my performance. That is despite the fact that I have hallucinations every night that make me feel like death is near. But boxing is my priority.’

narcolepsy.org.uk

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