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:
[I am driving] to work, and getting increasingly sleepy; suddenly, the road ahead rises up in front of me and hits me in the face. It is so realistic. I jerk my head back. It certainly woke me up. This experience is different from my other hallucinations in that my eyes were open and I was seeing my actual surroundings, but with distortion.
While most of us have a robust sleep-wake cycle, with sleep occurring predominantly at night, people with narcolepsy can have dozens of “microsleeps” (some lasting for only a few seconds) and “in-between states” each day — and any or all of these may be charged with intensely vivid dreams, hallucinations, or some almost-indistinguishable fusion of the two. Sudden, narcolepsy-like sleep without cataplexy may also occur in toxic states or with various medications (especially sedatives), and there is often some tendency to it with aging, in the dozing or nodding off of the elderly into brief, dream-charged sleeps.
I have these increasingly often myself. Once, while reading Gibbon’s autobiography in bed — this was in 1988, when I was thinking and reading a great deal about deaf people and their use of sign language — I found an amazing description by Gibbon of seeing a group of deaf people in London in 1770, immersed in an animated sign discourse. I immediately thought that this would make a wonderful footnote for the book I was writing, but when I came to reread Gibbon’s description, it was not there. I had hallucinated or perhaps dreamt it, in a flash, between two sentences of text.
Stephanie W. had her first narcoleptic hallucination when she was five, walking home from kindergarten. She wrote to me that her hallucinations frequently occur during the daytime, and she presumes they happen before or after very short microsleeps:
