Alice in wonderland and other migraine associated phenomena-evolution over 30 years after headache diagnosis

The International Classification of Headache Disorders-III beta includes a number of episodic syndromes associated with migraine. Those who treat pediatric headaches are aware of a number of other phenomena (such as the Alice in Wonderland syndrome) which are thought to occur as precursors of migraine. There is no available data on the course of these phenomena over the decades following childhood headache diagnosis.

Patients who were observed by one of the authors in 1983 were contacted by telephone in 1993, 2003, and 2013. Details were gathered regarding the presence and characteristics of ongoing headaches and about the presence of sleepwalking, motion sickness, and distortions of either time or space perceptions.

Twenty-eight patients were monitored in 1993, 2003, and 2013. Ongoing headaches were reported by 71%. Sleepwalking was only present in one patient in 2013. More than a third still complained of motion sickness, and more than one quarter still experienced distortions of time. Distortions of space were still reported by nearly 20%. Reporting any of these phenomena was not consistent over time, with some patients reporting distortions for the first time in adulthood. There was no clear correlation with migraine, and patients with tension-type headaches also reported the phenomena.

Motion sickness and distortions of both space and time persist into the fifth decade for many patients initially observed with headaches in childhood. The correlation with migraine is less clear than previously thought.