Sleep is no laughing matter for Alina Moser. While nodding off after a good giggle may seem extreme to most people, Moser suffers from a rare disorder where strong emotions can quite literally trigger a bout of deep sleep.
"When I was 16, I was staying in a youth hostel with my roommate, Julia. We were laughing in our room and I was sitting on the mattress when I suddenly fell. I lay there without being able to move but I was still laughing on the inside. I stayed there for 45 minutes till it passed."
You've probably heard of narcolepsy on House or your average run-of-the-mill medical drama. Affecting one in every 2,500 people in the UK (approximately 30,000) it is a rare neurological condition where the brain struggles to regulate the sleep/waking cycle normally.
21-year-old Moser, a part-time waitress, is one such member of a small community of sufferers where one symptom, cataplexy, is so extreme that some shun social situations altogether. Triggered by strong emotions such as—you guessed it—laughter, anger and surprise, sufferers experience complete loss of muscle control in a matter of seconds. Their head slump backwards and they slip into REM sleep in just a few minutes. Dubbed cataplectic attacks, it is thought that 70 percent of narcolepsy sufferers experience cataplexy.
On the less extreme end of the spectrum, those left untreated can look forward to seriously disturbed night-time sleep and excessive daytime sleepiness. But it's by no means a less terrifying ordeal. Sufferers have even experienced regular night paralysis and chronic muscle pain.
Cataplexy can even be downright dangerous. Online forums are awash with sufferers who prior to diagnosis experienced attacks just like this one in life-threatening situations such as diving.
As irregular sleeping patterns can be linked to lifestyle changes, stress, or in Moser's case, typical teenage behaviour, it's easy to see how it get easily misdiagnosed. Among the many women I spoke to, many reported difficulties with being believed. One sufferer said their doctor simply described them as "just a tired person." While Moser was fortunate to get a diagnosis within a year, for 27-year-old Charlie*, however, it's been a 14 year ordeal.
The London-based administrator says doctors constantly dismissed her claims. "I was turned away by so many health professionals. They refused to do any tests and put me on medication that just didn't work."
Charlie decided to live with her condition. Despite her best efforts to maintain a sense of normalcy, she claims she's lost 13 years of her life that she'll never get back. "I couldn't drive for long periods of time and went to work with great difficulty." It was only when she had a child and was concerned that her cataplectic attacks could leave a three-year-old unsupervised that she sought another diagnosis—and was once again dismissed. Charlie has since been correctly diagnosed for a year after getting a second opinion at the sleep clinic where she currently works.
But why are only some people affected by this mysterious malady? Broadly spoke to Dr Emmanuel Mignot, a world leading expert on narcolepsy.
The sleep researcher says it boils down to genetics: "The first thing you need to have is a particular genetic, notably for genes that regulate the immune system—the most important is one is called HLA."
Dr. Mignot also attributes environmental factors to those who are genetically predisposed, suggesting that sufferers could have been exposed in childhood to infections that made them more susceptible. "For some people," he says, "the last strike is a flu infection."
And after studies highlighted a plausible link between the swine flu vaccine, Pandemrix, and narcolepsy in children and adolescents, the UK government conceded in 2013 that the vaccine could trigger it.
So why are the two linked? In simple terms: Instead of clearing the flu, the immune system instead attacks brain cells that produce hypocretin, a protein-like molecule that helps the brain regulate wakefulness. The sleep researcher says: "Once these cells are killed by mistake, you have narcolepsy for life."
Does this mean that those affected by the disorder are doomed to slumping every time they watch stand-up? Not so, according to Dr Mignot who remains adamant that a combination of lifestyle changes and medication can treat the disorder including "scheduled napping, medications that help bad sleep at night, wakefulness in the day [by using] stimulants and REM sleep suppressant, and antidepressants for cataplexy.
"In severe cases with cataplexy, [the narcolepsy drug] Xyrem is by far the most effective, and can often bring back people to being almost (80 percent) normal."
In the UK, narcolepsy sufferers can access Xyrem on the National Health Service—but it isn't easy. Despite the drug being seen as the first line of treatment to decrease cataplexy, sufferers are being repeatedly denied it due to its high cost. The national charity Narcolepsy UK said that as some NHS wards don't offer it, sufferers have to "jump through hoops" to access, which includes going through organizations like Clinical Commissioning Groups. Many are unsuccessful. In this sense, it's akin to a lottery in that your age and address are the defining factors for whether you can be prescribed it. The charity are currently petitioning to get this changed.
While some women like Charlie are fortunate that other available medication available in the UK have eased their day-to-day lives (such as stimulants like Modafinil and Dextroamphetamine), others haven't. For Jenny Jenkins, who was diagnosed in her 30s, her inability to find the right medication that suits her means she's struggling by her own admission to have any quality of life. "I still haven't found the magic pill. At the moment, I take 21 tablets a day and one to counter the side effects. But it still doesn't stop my cataplexy."
In an age where there's seemingly a technological solution for everything—even outsourcing domestic chores—for sufferers, knowing that they can't pop a pill that could make them significantly better can compound feelings of isolation.
And with victims being typically housebound and heavily dependent on their families, it's not hard to see how much of a psychological toll it can take on them. Jenkins' condition meant she had to give up her driving licence and retire early. "I am unable to do so many things that once I took for granted. I can't go shopping, socialize and unable to see people without falling asleep. I'm simply unable to have a life with this condition."
While Charlie admits that her cataplexy isn't as severe as others', the constant strain of avoiding pleasurable emotions meant she often isolated herself socially. "When you're talking to someone, anything can trigger it. It's happened pretty much everywhere I've been—with my friends at school, at work, and even at the pub."
It's not surprising that many have contemplated suicide as an option. Countless online forums are dedicated to narcolepsy sufferers struggling with suicidal thoughts. Some sufferers have sadly gone through with it. Last July, 23-year old Peterborough nursery assistant Katie Clack ended her life after finding the condition "unbearable".
Revealing the condition to others can also be tricky. Many of the women I spoke to chose to be anonymous as they simply didn't want to be associated with the disorder. And it's not uncommon for those outside the community to assume that you can control it.
Lauren Flygare, who founded the sleep disorder non-profit Project Sleep, has blogged about being met with a barrage of unhelpful suggestions when opening up to others about her condition. Yoga and prayer might be comforting, but it's certainly not the cure. "If someone has a tooth cavity, can they pray it away?" she says. "By insisting on easy solutions, [it suggests] my narcolepsy is somehow in my control or my fault. This makes me feel ashamed and guilty."
This seems to reflect a wider pattern: the disorder's invisibility means it has been relegated it to a less serious disorder and at present, the UK does not currently classify it as a disability. In the US, sufferers can qualify for disability benefits under Social Security. But while a one-size-fits-all cure seems a way off, Moser is adamant that it won't define her: "I may have narcolepsy but narcolepsy does not have me."
* Name has been changed