[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:
However . . . I am not able to detect that a microsleep has occurred unless something in my environment noticeably “jumps” forward or changes in some way—as it did, for example, when I still drove a car and would find that my vehicle had unaccountably leapt forward on the road during a microsleep. . . . Prior to treatment for narcolepsy, I had many periods during which I experienced hallucinations on a daily basis. . . . Some were utterly benign: an “angel” which would appear periodically over a particular highway exit . . . hearing a person whispering my name repeatedly, hearing a knock at the door which no one else hears, seeing and feeling ants walking on my legs. . . . Some were terrifying [like the] experience of visually seeing the people before me take on the appearance of being dead. . . .
It was especially difficult as a child to be experiencing things that the people around me did not also sense. The attempts that I remember making to talk with adults or other kids about what was going on repeatedly elicited anger and suspicion that I was “crazy” or lying. . . . It got easier as an adult. (Although when I was treated within the mental health system, I was told that I had “Psychosis with unusually strong reality testing.”)
Receiving the correct diagnosis—narcolepsy—was deeply reassuring to Stephanie W., as was meeting others with similar hallucinations in the Narcolepsy Network.61 With this diagnosis and the prescription of effective medication, she feels there has been a complete change in her life.
Lynn O. wished that her doctors had told her earlier that her hallucinations were part of a narcoleptic syndrome. Prior to her diagnosis, she wrote,
These episodes happened frequently enough throughout my life that instead of suspecting a sleep disorder, I suspected paranormal activity in my life. Are there many people who integrate the experiences in this manner? Had I been better educated about this disorder, perhaps instead of suspecting I was being interfered with, haunted, spiritually challenged or perhaps mentally ill, I would have sought more constructive help earlier in life. I am now forty-three years old. And I have found a new peace in life in realizing many of these experiences have had to do with this disorder.
In a later letter, she observed, “I find myself in the fresh stage of having to reevaluate many of my ‘paranormal’ experiences, and I find I am having to reintegrate a new view of the world based on my new diagnosis. It is like letting go of childhood or, rather, letting go of a mystical, almost magical view of the world. I must say, perhaps I am experiencing a touch of mourning.”
Many people with narcolepsy have auditory or tactile hallucinations along with visual ones, as well as complex bodily feelings. Christina K. is prone to sleep paralysis, and often her hallucinations go with this, as in the following episode:
