Narcolepsy No Laughing Matter for Woman with Cataplexy
Imagine if laughing or being surprised when someone walked into a room caused you to collapse and fall into a deep sleep for up to several minutes. Dr. Claire Allen does not have to imagine it, because she has cataplexy, a rare symptom of narcolepsy, which was causing her to fall asleep up to 100 times a day.
Narcolepsy is an invisible condition until you collapse
The UK Telegraph reports that Dr. Allen, a 35-year-old research scientist with the British Antarctic Survey, was diagnosed with narcolepsy more than five years ago. Narcolepsy is a sleep disorder that involves irregular patterns in rapid eye movement (REM) sleep and significant disruptions of a person’s normal sleep/wake cycle.
According to the Narcolepsy Network, the condition affects about 1 in 2,000 people in the United States, and many people with the condition go undiagnosed. Stanford’s Center for Narcolepsy notes that the condition impacts from 0.2 to 1.6 per 1,000 people around the world. In Britain, it is believed to affect an estimated 25,000 individuals.
Narcolepsy often takes years to recognize. The main symptom is excessive daytime sleepiness, with feelings of overwhelming fatigue throughout the day. Often individuals fall asleep for a few seconds at various times during the day. For people with a rare symptom of narcolepsy called cataplexy, emotions trigger them to fall asleep with little warning.
People with cataplexy can collapse or have their heads drop or jaws go slack when they experience a strong emotion, such as joy, laughter, or anger. In the most severe cases, which is what Claire experiences, individuals fall to the ground in a state of paralysis although they are awake and aware of what is happening around them. These episodes are triggered by the brain interpreting the emotional stimulus as the beginnings of REM sleep.
A quick loss of speech and vision are Claire’s only warning of a narcoleptic attack before she collapses, even though she remains awake. In the UK Telegraph she reported that “The attacks are caused by any emotional surprise or shock but laughter is definitely the strongest trigger.”
At one point during her more than five years with the disorder, Clair was collapsing around 100 times a day, with each episode lasting between 30 seconds to five minutes. She had to stop driving, and each day was a series of narcoleptic events. Now she is taking a new drug called Xyrem for her narcolepsy, and the number of collapses has been reduced to just several per month.
Before she began taking Xyrem, Claire was waking up 20 to 30 times a night, and she could not sleep for more than one hour at a time. Because sleep is necessary for the body to repair itself, she not only was losing valuable sleep, but rejuvenation of her skin, nails, and hair. Since starting the medication, Claire’s hair and nails have improved.
Claire notes that “Many people go undiagnosed for many years. Having only half of my symptoms could have a devastating effect on someone’s life.” According to Dr. John Shneerson, an expert at Papworth Hospital’s Sleep Centre in Cambridge, “A great many lives would be improved if narcolepsy were better recognized.”
For more information about narcolepsy and cataplexy, and how to find help getting a diagnosis, see the Narcolepsy Network, the National Institute of Neurological Disorders and Stroke, and the Center for Narcolepsy at Stanford School of Medicine.