Alice in Wonderland Syndrome (AIWS): prevalence and characteristics in adults with migraine

• Published in: Journal of neurology Vol. 271; no. 8; pp. 5146 - 5155
• Main Authors: Fitzek, Mira P., Mecklenburg, Jasper, Overeem, Lucas H., Lange, Kristin S., Siebert, Anke, Triller, Paul, Neeb, Lars, Dreier, Jens P., Kondziella, Daniel, Reuter, Uwe, Raffaelli, Bianca
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01.08.2024; Springer Nature B.V
• Subjects: Adult; Alice in Wonderland Syndrome - epidemiology; Cross-Sectional Studies; Female; Headache; Headaches; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Migraine; Migraine Disorders - epidemiology; Neurology; Neuroradiology; Neurosciences; Original Communication; Prevalence; Prospective Studies; Sensory properties; Temporal perception; Visual perception; Headache; Visual phenomena; Migraine aura; Cortical spreading depolarization
• ISSN: 0340-5354; 1432-1459; 1432-1459
• DOI: 10.1007/s00415-024-12471-5

Objective Alice in Wonderland Syndrome (AIWS) is a sensory disorder characterized by a distorted somatosensory and/or visual perception. Additionally, distortion of time perception and symptoms of derealization/depersonalization may occur. AIWS is frequently associated with migraine. However, its prevalence, and clinical characteristics remain poorly understood. Here, we investigated the prevalence and features of AIWS in individuals with migraine. We hypothesized AIWS is more frequent in migraine patients with aura than in those without aura. Methods This was a prospective cross-sectional cohort study, conducted at a tertiary headache center. Participants with migraine filled out questionnaires, providing details on demographics, headache, AIWS characteristics and the occurrence of transient visual phenomena such as fragmented vision. Results Of 808 migraine patients, 133 individuals (16.5%, mean age 44.4 ± 13.3 years, 87% women) reported AIWS symptoms throughout their lives. Micro- and/or telopsia (72.9%) were most frequent, followed by micro- and/or macrosomatognosia (49.6%), and macro- and/or pelopsia (38.3%), lasting on average half an hour. AIWS symptoms occurred in association with headache in 65.1% of individuals, and 53.7% had their first AIWS episode at the age of 18 years or earlier. Migraine patients with aura were more likely to report AIWS symptoms than those without aura (19.5% vs. 14.1%, p  = 0.04). Participants with AIWS reported a higher incidence of 17 out of the 22 investigated visual phenomena. Conclusion AIWS symptoms appear to be a common lifetime phenomenon in migraine patients. The correlation and clinical parallels between AIWS and migraine aura could indicate shared underlying pathomechanisms.