Experiences so far out of the ordinary constitute a severe challenge to one’s world picture, one’s belief system—how can they be explained? What do they mean? One sees poignantly with this young patient how reason itself can be rocked by such nighttime visions, which insist on their own reality.
12
Narcolepsy and Night Hags
Sometime in the late 1870s, Jean-Baptiste-Édouard Gélineau, a French neurologist from a wine-making family, had occasion to examine a thirty-eight-year-old wine merchant who had been having attacks of sudden, brief, irresistible sleep for two years. By the time he came to Gélineau, he was having as many as two hundred a day. He sometimes fell asleep in the middle of a meal, the knife and fork slipping from his fingers; he might drop off in the middle of a sentence or as soon as he had been seated in a theater. Intense emotions, sad or happy, often precipitated his sleep attacks and also episodes of “astasia,” in which there was a sudden loss of muscular strength and tone, so that he would fall helplessly to the ground, while remaining perfectly conscious. Gélineau regarded this conjunction of narcolepsy (a term he coined) and astasia (we now call it cataplexy) as a new syndrome—one with a neurological origin.60
In 1928 a New York physician, Samuel Brock, presented a broader view of narcolepsy, describing a young man of twenty-two who was prone not only to sudden sleep attacks and cataplexy but also a paralysis, with the inability to talk or move, following his sleep attacks. In this state of sleep paralysis (as the condition was later to be named), he had vivid hallucinations, which he experienced at no other time. Though Brock’s case was described in a contemporary (1929) review of narcolepsy as “unique,” it soon became apparent that sleep paralysis and the hallucinations associated with it were far from uncommon and should be regarded as integral features of a narcoleptic syndrome.
It is now known that the hypothalamus secretes “wakefulness” hormones, orexins, and that these are deficient in people who have congenital narcolepsy. Damage to the hypothalamus, from a head injury or a tumor or disease, can also cause narcolepsy later in life.
Full-blown narcolepsy can be incapacitating if untreated, but it is mercifully rare, affecting perhaps one person in two thousand. (Milder forms may be appreciably commoner.) People with narcolepsy are apt to feel embarrassed, isolated, or misunderstood (as with Gélineau’s patient, who was regarded as a drunk), but awareness is spreading, in part because of organizations such as the Narcolepsy Network.
Despite this, narcolepsy often goes undiagnosed. Jeanette B. wrote to me that her narcolepsy had not been diagnosed until she was an adult. In elementary school, she said, “I thought I had schizophrenia, because of my hypnagogic hallucinations. I even wrote a paper on schizophrenia in sixth grade (never mentioning that I thought that was my problem).” Much later, when she went to a narcolepsy support group, she wrote, “I was astounded to find that many in the group not only had hallucinations, but the very same hallucinations as I did!”
When I heard recently that the New York chapter of the Narcolepsy Network was due to have a meeting, I asked if I might come along to listen to members discuss their experiences and to talk with some of them myself. Cataplexy—the sudden, complete loss of muscle tone with emotion or laughter—affected many at this meeting, and it was freely discussed. (Cataplexy, indeed, can scarcely be hidden. I spoke to one man, by chance a friend of the comedian Robin Williams’s, who said that whenever he met Robin, he would lie down on the ground preemptively; otherwise, he was sure to fall down in a fit of laughter-induced cataplexy.) But hallucinations were another matter: people often hesitate to admit to them, and there was little open discussion of the subject, even in a room full of narcoleptics. Nonetheless, many people later wrote to me about their hallucinations, including Sharon S., who described her own experience:
I wake on my stomach to the sensation that the mattress is breathing. I cannot move and the terror sets in as I “see” the marbled grey skin with sparse black hairs underneath me. I am sprawled on the back of a walking elephant. . . . The absurdity of my hallucinations causes me to collapse with cataplexy. . . . [Another time] as I am waking from a nap I “see” myself in the corner of the bedroom. . . . I am close to the ceiling, slowly floating to the floor by parachute. During the hallucination it seemed perfectly normal and I am left with a very peaceful, serene feeling.
Sharon has also had hallucinations while driving:
