As Kayla McCain reached for her water bottle one October day in 2016, her limbs suddenly morphed in strange and disturbing ways. “My arms looked like they were growing super-long,” she recalls. “My hands seemed really big. And there was a delayed reaction before I felt my fingers touch the bottle.”
McCain, then 26, was traveling to a football game with her husband. When the couple stopped at a restaurant, she noticed that the people around her seemed to be moving oddly, “like a stop-action movie. Some even looked pixelated,” she says. The next morning, her arms once again appeared elongated to her, and her hands felt enormous as she applied makeup and curled her hair. She felt panicked, but her husband's support and reassurance helped her power through the day.
“It happened on and off all weekend,” says McCain, 35, a freelance social media marketer and mother of two who lives in the Dallas, TX, area. “I was freaking out on the inside and trying hard to keep it together on the outside. We were staying with friends. You don't want people to think you're losing your mind. But keeping it to myself made it all the worse.”
Visual Distortions
In the months before her puzzling episodes, McCain consulted doctors about a different issue: unexplained dizzy spells. Shortly after returning from her trip to the football game, she found out that vestibular migraine (a type of migraine in which patients can experience vertigo, imbalance, nausea, and vomiting but not necessarily headache) had caused the dizziness. Could these new symptoms be related?
When she met with a neurologist who specialized in vestibular migraine, she described what she experienced with her arms and hands. “He told me I may have Alice in Wonderland syndrome (AIWS), which can be triggered by the onset of a migraine attack,” McCain says. “I felt relieved to know what was happening.”
Like McCain—and the main character in Lewis Carroll's classic children's book, Alice's Adventures in Wonderland—children and adults with AIWS, also called Todd's syndrome, experience a variety of unusual perceptual illusions. At least 40 types of visual distortions have been linked to AIWS, according to a review published in 2021 in the journal Cortex. Arms, hands, legs, and feet seem to stretch or shrink. People and objects may appear impossibly large or extremely small, as if viewed through the right or wrong end of a telescope. Time and motion may speed up, slow down, or stop. Colors, sounds, smells, and sense of touch may become hyper-intense or muted. People also may feel disconnected from their bodies or as if they're divided in two.
“It's very disorienting,” says pediatric neurologist Osman Farooq, MD, a clinical associate professor at the Jacobs School of Medicine & Biomedical Sciences at the University of Buffalo. “Any time people start seeing things in a way they know isn't right, they may worry that they're hallucinating and that something's wrong with them. It's actually a real medical condition.”
McCain now takes the migraine medication rimegepant (Nurtec) to reduce pain. It also reduced her Alice-like episodes, although she did have a “terrifying” one a few years ago while laying her infant son in his crib. “I got him into the crib safely and called my mom for help,” she says. Today, the syndrome is most likely to resurface “when I'm brewing the perfect storm of stress, lack of sleep, hormone fluctuations, and exposure to bright lights—everything that would cause a migraine attack,” she adds.
“People with Alice in Wonderland syndrome often keep it to themselves,” says neurologist Ashhar S. Ali, DO, FAAN, a staff physician at Henry Ford Health in Detroit and a clinical associate professor at Michigan State University College of Human Medicine, who spoke about AWIS and other unusual headache disorders at the American Academy of Neurology annual meeting in April 2025. “They don't feel validated, so they don't always share it with others to avoid the risk of sounding crazy. Until a clinician asks, they won't really talk about it.”
Many Triggers
In Carroll's story, Alice shrinks after sipping a potion with a tag marked “Drink me” and then grows abnormally large after munching a cake with the words “Eat me” written on it. In the real world, scientists have linked AIWS to infections—including influenza, COVID, Zika virus, and Epstein-Barr virus—and to epilepsy and migraine. Less common triggers include stroke, depression, medications such as cough remedies with dextromethorphan or dihydrocodeine and DL-methylephedrine, and the illegal hallucinogen LSD.
All seem to affect a key zone in the brain's cerebral cortex where the parietal, occipital, and temporal lobes process signals from the senses to build and maintain our perception of our body and the environment around us. Dr. Ali notes the link between migraine and AIWS probably is “cortical spreading depolarization”—when a wave of electric activity spreads across the brain. “This can cause distortions in visual perception, particularly in areas that process visual sensations, such as the parietal lobe,” he adds.
Episodes may fade in less than a minute or last for hours or even a day or two, Dr. Farooq says. Often, symptoms are brief, mild, happen just a few times, and never return—but not always, he says. In a Dutch study of 25 people with motion-related symptoms published in Frontiers in Neurology in 2025, 11 had the syndrome on and off for five months to 30 years. “One patient of mine has been living with it constantly for several years,” Dr. Farooq says. “The symptoms and intensity fluctuate, but it never fully goes away.”
Often, the trigger itself is a mystery. When Grant T. Liu, MD, a neuro-ophthalmologist at Children's Hospital of Philadelphia and the Hospital of the University of Pennsylvania, reviewed the cases of 48 former pediatric patients with AIWS for a study published in Pediatric Neurology in 2014, 52 percent had no known cause. Among 15 people he interviewed, 40 percent still had occasional episodes. “I was taught it was always associated with migraine, but we found out that wasn't always true,” Dr. Liu says.
AIWS does not have established diagnostic criteria, either. As in McCain's case, doctors usually ask about symptoms to make a diagnosis, may perform a neurologic exam, and may order tests to check for brain-based conditions that can spark it. “People with the syndrome should see a neurologist to rule out underlying causes,” says Dr. Liu, who also is a professor of neurology at Penn's Perelman School of Medicine. For some people, AIWS is an early tip-off of epilepsy or migraine, Dr. Ali notes.
Treatment usually involves managing the underlying cause, Dr. Liu says. For people whose AIWS symptoms are more severe than their migraine pain, the migraine medication lamotrigine may help control the syndrome, according to Dr. Ali.
Not So Unusual
The syndrome was first described in 1952 and received its name from British psychiatrist John Todd three years later. But some neurologists suspect that Carroll was writing about his own AIWS symptoms in his 1865 novel. His diaries detail 13 episodes that occurred when he had a fever and sound a lot like AIWS, notes a 2021 study from The Lancet Neurology.
And while AIWS is widely called a rare condition, neurologists who've studied it—including Drs. Ali, Farooq, and Liu—suspect it's actually fairly common. In a study of 808 adults with migraine published in the Journal of Neurology in 2024, 133 had AIWS. A 2019 study in Frontiers in Neurology, meanwhile, estimated that up to 30 percent of people may experience mild episodes at some point in their lives.
“I think it's underdiagnosed,” Dr. Liu says. “Kids may never talk about it because they're embarrassed or they've had it so long it feels like normal. The interesting thing is, when we did our study, some of the parents we talked with said, ‘You know, I had that when I was a kid.’” Often, AIWS crops up a few times in childhood and never returns, he adds.
That's been Dr. Farooq's experience. “Growing up in Buffalo, NY, I used to get sick often and had a lot of sore throats and viral illnesses. Every time I got sick, I would get the feeling that my hands or fingers were growing in size,” he says. “I would have very vivid and violent dreams of people with extra-large arms or legs moving very slowly. My mother thought it was nightmares. I never told anyone else.”
The episodes faded in his teens, only to return in his early 20s. “I don't get full-blown episodes anymore,” Dr. Farooq says, “but sometimes I start to have the same feeling again.” He discovered that his childhood experience was a real syndrome during his medical fellowship, when he read a book chapter one of his mentors had written. “My mind was blown,” he says. “Shortly after that, I had two patients in a row with it. I think it's more common than we know.”
