Imagine you are in your bed. It is night time, the blankets are warm, and your pillow is soft. The room – because you are fortunate enough to sleep in a room, in a house – is dark and quiet. Maybe you sleep next to a partner and they snuffle and twitch as they fall asleep. Maybe you are tired from a long day at work or school. Your limbs are heavy, your eyes are closed, and your breathing is slow and even.
You become aware that your hands feel strange. They are growing, becoming bigger and bigger. Tucked under the blanket, they make it rise in front of your face. You can feel your breath pushing back against the cotton. Your feet grow too, reaching toward the end of the bed. Your body inflates. It fills the room and you worry about what will happen if it doesn’t stop before you touch the ceiling. You might need to put your head out the window and your feet through the door. Time slows down. You try to get out of bed, but it feels like moving through glue. Your inflated legs are heavy and unwilling to shift. They ache with the effort.
Then suddenly you are small, as small as a child. You keep shrinking. Your head slips beneath the blanket and your feet retract to the middle of the bed. You panic. You don’t want to disappear. And then you are right sized again, but time is speeding up. It rushes around you in the dark, tormenting you, demanding that you keep pace. And then it stops, and you are shattered and drop into a heavy, exhausted sleep.
It sounds like a bad trip, but you don’t take drugs and you never drink more than two standard glasses of alcohol. You have Alice In Wonderland Syndrome, altered perception that your doctor says is most likely caused by an electrical storm in your temporal lobe. Sometimes, you also feel pain when your feet touch the floor, and noises fluctuate from loud to soft and back again. Seizures mostly occur at night, but when you get them during the day, you find yourself asking people why they are shouting.
Some people believe that Lewis Carroll may have suffered with Alice In Wonderland Syndrome and described his symptoms in his famous book. It has also been called Lilliputian Hallucinations based on the story in Jonathan Swift’s novel Gulliver’s Travels. More recently, it has been known as Todd’s syndrome or dysmetropsia, and is often associated with migraines, brain tumours, epilepsy, and viral infection. (Lewis Carroll reported experiencing migraines.) For many people (like me and my mother) it is disturbing but harmless and disappears in their late teens. For some people (like my daughter) it is extremely disruptive, interfering with academic study, attendance at work, and physical activity and has continued into her twenties.
The number of reported cases of AIWS is very small, however neurologists who have investigated the syndrome believe that it is more widespread, and that many people (like me) don’t report their symptoms because they believe they are harmless or because they are embarrassed. You generally can’t tell if a person is having an AIWS episode. They rarely lose control of their limbs or become uncoordinated. They may seem spaced out or agitated. They might report feeling nauseous, or dizzy, or have a migraine. In my experience, the best response to a person having an AIWS episode is to sit with them while they ride it out and let them sleep afterwards.