As a child, Lene found solace in an unusual bedtime ritual. In the quiet moments before sleep, her room seemed to stretch and distort, with the walls pulling away and her body elongating to match. She felt as if she could extend her toe to touch the door, and simultaneously, she had the sensation of floating above and watching her altered form.
Lene remembers feeling terrified the first time it happened, when she was between the ages of seven and nine. She kept the experience to herself, thinking that if she shared it with her mother, she would dismiss it as nothing significant. These episodes became a nightly occurrence and, over time, oddly comforting. By the time she reached her teenage years, they ceased, and she mostly forgot about them.
Years later, at the age of 59, while working as a secretary in the neurology department of a Danish hospital, Lene discovered that her childhood experiences were known as Alice in Wonderland syndrome. This revelation came during a meeting where a neurologist mentioned a patient with the condition. Curious, Lene turned to Google and instantly recognized her own symptoms in the descriptions she found.
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Lene felt a sense of relief and validation learning that what she experienced had a name. Alice in Wonderland syndrome involves perceptual distortions similar to those depicted in Lewis Carroll’s “Alice’s Adventures in Wonderland.” These can include changes in body shape, alterations in the perception of time, and shifts in color intensity. Symptoms, which can last from minutes to days, often occur alongside feelings of unreality and are typically triggered by factors like migraines, epilepsy, brain injuries, substance use, or infections.
Despite its rarity—fewer than 200 cases have been documented since 1955, mainly in children—the symptoms are not uncommon. Studies suggest that a significant portion of the population has experienced at least one visual distortion in their lifetime, and a notable percentage of migraine sufferers report similar experiences. Some researchers speculate that Carroll himself suffered from the syndrome, as he was known to have migraines.
The Looking Glass
Maximilian Friedrich, a neurologist at the University Hospital of Würzburg in Germany, explains that our brains do not simply record reality but actively reconstruct it. This process can malfunction, resulting in the various distortions seen in Alice in Wonderland syndrome. These include micropsia and macropsia, where objects appear smaller or larger than they are, and prosopometamorphopsia, where faces seem misshapen. Other symptoms might include sensations of levitation or bodily distortion.
The syndrome was named in 1955 by psychiatrist John Todd, who noted its association with migraines and epilepsy. He linked it to Carroll’s migraine history, capturing the syndrome’s surreal quality. Generally, symptoms are benign and transient but can recur throughout a person’s life, especially if triggered by specific conditions.
The Alice Network
Alice in Wonderland syndrome can manifest in over 60 different symptoms, leading some to question whether it should be viewed as a single syndrome. Recent research has begun to uncover which brain regions are involved when these perceptual disturbances occur. Friedrich and his colleagues used lesion network mapping to study the brains of individuals who developed the syndrome following brain injuries. They discovered that lesions in certain brain areas were highly interconnected, suggesting a network that could explain the syndrome’s effects.
Understanding this network has also shed light on why the syndrome might occur with migraines, as imaging studies show significant overlap in affected brain areas. Additionally, infections can trigger the syndrome, with recent reports linking it to COVID-19. Researchers like Alberto Paniz-Mondolfi have treated patients with Alice-like symptoms following various infections, suggesting that an immune response might play a role.
Curiouser and Curiouser
Alice in Wonderland syndrome seems more prevalent in children, potentially due to their robust immune responses. Many children experience the syndrome without a clear cause, and it often subsides with age. Carmen Vidal Fueyo, who had episodes from age six, found understanding and community through an online platform after years of confusion and fear.
Today, Lene’s understanding of the syndrome remains part of her family’s life, affecting her daughter and now her grandson. Her personal journey and familial patterns suggest a possible genetic component, a topic of interest to researchers like Friedrich.
As science continues to unravel the mysteries of Alice in Wonderland syndrome, those affected, like Lene, hope for answers that can provide clarity and reassurance for future generations experiencing this bewildering condition.
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Cameron Aldridge combines a scientific mind with a knack for storytelling. Passionate about discoveries and breakthroughs, Cameron unravels complex scientific advancements in a way that’s both informative and entertaining.