A nondescript man lost in his forties, Dee Daud has a visible bruise on his right cheek and a scar on his forearm. His greying hair is closely cropped, accentuating not only a British smile, but also a nose that has been broken more than once. His voice is monotone, the hollow tone of someone hoping to avoid emotion. Each time he laughs, his neck goes slack and he nods off almost immediately afterward. How does Daud account for all these bewildering characteristics? Simple. He has narcolepsy.
Described as a sleep disorder, a medical disorder, a neurological disorder, and, most recently, an autoimmune disorder, all and none of those labels precisely convey what it means to have poor control over your sleep-wake cycles. People with narcolepsy experience “sleep attacks,” or sudden, irresistible temptations to sleep that can strike at any time and may last a few seconds or several minutes. At the same time, they often cannot sleep at night, while feeling extremely sleepy throughout the day. Symptoms also include sleep paralysis, hallucinations, and cataplexy, which affect about 70 percent of all people with narcolepsy. Cataplexy is unique to narcolepsy — no other disease causes this sudden weakness of the muscles, especially in the legs but also in the face and neck, that is usually brought on by strong emotion, laughter in particular.
Most people begin to develop symptoms of this incurable disorder somewhere between the ages of 10 and 20, though it can appear later in life, though most commonly it will become evident before the age of 40. The condition occurs more frequently in men than in women. Sadly, the average time between the date symptoms first appear and a medical diagnosis is 10 years and in that time, people who suffer narcolepsy are often seen by others as unusual, lazy, or simply crazy. Since many people experience their first symptoms while still in their teens, they are particularly vulnerable to feeling isolated, depressed, and hopeless.
“Up until then, I had been an honors student and on the JV softball team, as well as taking part in tons of other after school activities,” Amanda Vasas wrote in a first person account of her disorder. Once her symptoms began, all that changed. “My life was in shambles. My mother was a complete wreck and wouldn’t let me out of her sight, or even out of the house, out of fear that I would inevitably come crashing down to my doom [...] Since I could never go out, my friends stopped talking to me.”
The picture Vasas paints is vivid and bleak. Because people with severe cases of narcolepsy may fall asleep anywhere, anytime, they live a life of great danger. This lifelong disorder, then, is managed with difficulty while the risks of becoming unemployable or a social outcast mount. Joyce Scannell, who was haunted by hallucinations in early childhood, always knew something was wrong but wasn’t diagnosed until she was a divorced mother of three and well into her adult years. Although the diagnosis helped explain her sleep attacks and other symptoms, she did not immediately find relief in medication — she says she “spent a decade trying different medicines and therapies” — and little could be done about her employment prospects.
“I had wanted to be an elementary school librarian, but realized I needed a job with more flexibility so I could fit in my naps and work on my own sleep schedule,” another narcoleptic, Tesa Schmidt, wrote. “I cannot have a roommate because of my daily naps and strict sleep schedule," she wrote, adding "...the normal life looks like heaven from this side of the fence.” Such are the thoughts of those with this disability. Even when making light of their condition, asking each other, "Where are the weirdest places you've fallen asleep?" sufferers sound a despairing note with their answers, including as much tragedy as comedy:
- While walking across the kitchen with a plate of food. Needless to say the food was around me when I woke up.
- The shower. I don't even think I can count the number of times I've fallen asleep in the shower and lately I've been stressed so it's almost every day.
- On the toilet at work (my friends wondered why I had been gone so long and came to find me).
- Once I was in a very long line at the grocery. I fell asleep leaning against my shopping cart.
- On top of the dishwasher (it was winter and I was cold, so I sat on the countertop above the dishwasher to keep warm and fell asleep)
- I've fallen asleep while walking up the stairs only to find myself at the bottom again.
- I had a full collapse while talking to my supervisor at work. That one was amusing as he just looked at me when I stood back up.
- I once fell asleep while kneeling at Mass.
- During “the act.”
- I crawled in to a parked car and was woken up by the owner who stole all my money before I really knew what was happening.
- I fell asleep when I was getting my tooth drilled for a crown the other day. (I had cracked my tooth trying to stay awake at work.)
- Underneath my Volkswagen Vanagon while working on it.
- A few months ago, I fell asleep for possibly 10-15 minutes while I was getting a massive tattoo on my leg.
- When I was 10 I fell asleep in the Underground when I was in England.
- Probably the weirdest place for me to fall asleep has been a live concert with really loud music.
One thing that is heartening about narcolepsy is those who suffer from this disorder have established a thriving online community, apparently international in scope, where one and all can share not only their personal experiences but also medical information. That said, Vasas told Medical Daily in an email, "I've noticed there's mostly only support for people over the age of 40. I'd love to start a group for people 30 and younger, because I think lots of people feel lost because when you're young others tend to confuse a disorder like narcolepsy for just laziness, and that stinks."
She may just get her wish; narcolepsy affects about one in every 2,000 people in the U.S. — about 175,000 people — and roughly three million people worldwide. The frequency of narcolepsy varies from country to country, with it being most common in Japan, and most rare in Israel, suggesting it may be linked to a genetic cause. A possible cause or link to the cause of narcolepsy is lack of a chemical called hypocretin, which is normally produced in the hypothalamus. Some researchers believe the body's immune system attacks the cells that produce hypocretin.
Interestingly, narcoleptics generally experience the REM stage of sleep within five minutes, while most people do not experience REM sleep until an hour or so into the sleep cycle. This is possibly what gives rise to their vivid dreams, which often take the form of nightmares. To gain a greater understanding of narcolepsy, this video from National Geographic follows Dee Daud, allowing you to see for yourself what it really means to have narcolepsy.