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.2 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:
I had just lain down in bed, and after a few rounds of changing positions I ended up face down. Almost immediately I felt my body go more and more numb. I tried to “pull” myself out of it, but I was already too deep into the paralysis. Then it was almost as if someone sat down on my back, pressing me deeper into the mattress … the weight on my back got heavier and heavier, and I was still not able to move. [Then] the thing on my back got off and laid down next to me.… I could feel it lying beside me, breathing. I got so scared and thought that this couldn’t be anything other than real … because I had been awake all along. It felt like an eternity before I managed to turn my head towards it. Then I laid eyes on an abnormally tall man in a black suit. He was greenishly pale, sick-looking, with a shock-ridden look in the eyes. I tried to scream, but was unable to move my lips or make any sounds at all. He kept staring at me with his eyes almost popping out when all of a sudden he started shouting out random numbers, like FIVE-ELEVEN-EIGHT-ONE-THREE-TWO-FOUR-ONE-NINE-TWENTY, then laughed hysterically.… I started feeling able to move again, and as I came back to a normal state the image of the man became more and more blurry until he was gone and I was able to get up.
Another correspondent, J.D., also described the hallucinations associated with sleep paralysis, including the feeling of pressure on her chest:
Sometimes I would see things like huge centipedes or caterpillars crawling all over my ceiling. Once I thought my cat was on the shelf in my room. She seemed to be rolling around and turning into a rat. The worst was when I would hallucinate that a spider was on my chest. I couldn’t move. I would try to scream. I am TERRIFIED of spiders.
On one occasion, she had a hallucination resembling an out-of-body experience:
