Alice in Wonderland Syndrome: UB neurologist discusses the disorder that distorts perception

BUFFALO, N.Y. – Primarily affecting children, Alice in Wonderland Syndrome (AIWS) can cause changes in perception that can make those affected feel like its namesake storybook character.

According to neurologist Osman Farooq, who has studied the condition for more than a decade and has published a review of in 2017 in Pediatric Neurology on it, AIWS is a disorienting neurological condition that affects human perception to the senses of vision, hearing, touch, sensation and the phenomenon of time.

“Individuals affected with AIWS can experience alterations in their perception to the size of objects or their own body parts, known as metamorphopsias,” says Farooq, MD, a clinical professor in the Department of Neurology in the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo.

The condition is common in children but can also affect adults. Farooq himself recalls experiencing the condition during his childhood, which motivated him to begin studying the subject.

AIWS is known to occur in conditions including migraine, epilepsy, as well as certain intoxicants and infectious diseases, and does not have a known single cause. Below, Farooq responds to common questions about the condition.

AIWS is fairly common and can occur at any age.  It is estimated that 10-30% of people can experience AIWS in their lifetime. It is somewhat more common in childhood and adolescent years. A true frequency of occurrence is not known, because many people who experience it may not always seek help for it because they may have a difficult time verbalizing their symptoms, or also commonly they feel that people will not believe them or will think that they are “crazy.”

AIWS typically occurs in the setting of other conditions, including headaches/migraines, seizures/epilepsy, during illnesses and fevers and with hallucinogenic drug use. There is not one specific cause for AIWS but it is important to rule out these potential underlying conditions.

There is no specific test that can diagnose AIWS, and it is usually diagnosed clinically based on symptoms described by the individual. AIWS can be an indicator for other underlying conditions, and therefore a thorough work up should be done to rule out other conditions that require specific treatments such as migraines, seizures, etc. This work up may require an MRI of the brain and an EEG [electroencephalogram]. 

Every individual who experiences AIWS can have different symptoms. Their episodes can also vary in frequency and intensity. Some people may have one lifetime event and never have any further episodes. Other people can have episodes more frequently. No two patients have identical descriptions or patterns of their episodes.

There is no specific treatment for the symptoms of AIWS, however if there is an underlying condition that is triggering the AIWS (for example, headaches or seizures) then treatment can be directed at the underlying cause. Once the triggering factor has been treated then the AIWS can improve. AIWS is usually very benign and most people will outgrow their episodes.