If you don’t know what Alice in Alice in Wonderland syndrome (AIWS) is, it’s no wonder: this neurological disorder is so rare that some neurologists – even those specializing in the diseases it often accompanies, such as migraine and epilepsy – can see patients for decades and never encounter it.
People with Alice in Wonderland syndrome have episodes in which objects and even parts of their own body may appear much smaller or much larger than they really are. Alice in Wonderland syndrome was first described in 1952 and was given its name in 1955 by John Todd, an English psychiatrist.
The condition occurs mostly in children, although this may be due, at least in part, to adults’ unwillingness to describe the distortions they see, says Annette E. Grefe, M.D., a pediatric neurologist at Wake Forest Baptist Health in Winston-Salem, North Carolina.
“This is conjecture, but some adults may be afraid that people will think they’re a little crazy, because what they experience sounds like a hallucination,” Dr. Grefe says.
As Alice herself said in Alice’s Adventures in Wonderland, published in 1865, “It gets curiouser and curiouser!”
What Alice in Wonderland syndrome looks like, as well as its diagnosis and treatment, is explained below.
7 Curious facts about Alice in Wonderland Syndrome
Things seem much bigger or much smaller than they really are
According to Anjan K. Chatterjee, M.D., a neurologist at Penn Medicine in Philadelphia, people suffering from vision withdrawal syndrome report perceiving changes in their surroundings. “Typically, an attack includes micropsia, in which objects appear small, or macropsia, in which things appear larger than they really are,” Dr. Chatterjee says.
In some cases, it’s not just an external object that appears to change size; people experiencing Alice in Wonderland syndrome may perceive their own body parts in a distorted way, either much larger or much smaller, he says.
“These episodes can last minutes and sometimes longer-it’s not quick-or it’s a two-second thing where you rub your eyes and everything is better,” Chatterjee says.
Understandably, people may have some anxiety and fear about the cause of these perceptions, especially when they first experience AIWS.
For people who continue to have episodes, over time it can be more disconcerting than frightening, but it depends on the individual’s personality, Chatterjee says.
Lewis Carroll himself may have had AIWS
Lewis Carroll (pen name Charles Lutwidge Dodgson) was the author of Alice’s Adventures in Wonderland, and it’s possible he was influenced by his own migraine experience when writing the book.
In the book, Alice finds a bottle labeled “Drink me,” and when she does, she shrinks to less than 30 centimeters. Almost immediately after, she consumes a cake that makes her grow very large, until her head touches the ceiling.
“It turns out that author Lewis Carroll probably had a migraine, based on some of his journal entries,” Chatterjee says. There has been speculation that he himself experienced Alice in Wonderland syndrome, and that may have been part of the origin of some of those unusual parts in those stories, he says.
Experts don’t know what causes Alice in Wonderland syndrome
We don’t know exactly what happens to make people see objects larger or smaller than they really are, Grefe says. “There are some theories that make sense anatomically,” he says.
When Alice in Wonderland syndrome accompanies migraine, it may originate in the parieto-occipital part of the brain, according to Grefe. “The parietal area has to do with body perception and perception of space, and the occipital area has to do with vision,” Grefe says.
When AIWS is related to epilepsy, it appears to originate in the frontal lobe, but much remains to be learned about it, he adds.
Alice in Wonderland syndrome is rare, but may be underdiagnosed
Alice in Wonderland syndrome is so rare that many experts may never encounter it in their careers, Chatterjee says.
But while experts agree that it is rare, the overall prevalence is not known. To date, there have been no epidemiological studies showing how common AIWS is in the population.
And there is also no universally accepted way to diagnose the syndrome, according to a review published in June 2016 in Neurology Clinical Practice. Two people could present with the same symptoms, and one could get a diagnosis of AIWS and one could not.
The lack of diagnosis may also be because some people don’t like to talk about their symptoms; they may fear that people will think they are hallucinating or have a mental illness. This situation was described in a first-person account published in The New York Times.
Alice in Wonderland syndrome may be part of the aura in a migraine attack
Although Alice and Wonderland syndrome is very rare, when it does occur, it is usually associated with migraine.
“I think it most typically occurs as part of the aura, but it can also occur during the headache,” says Chatterjee.
And like other migraine aura experiences, the perceptual changes caused by Alice in Wonderland syndrome can occur without any headache, he says.
When a person has a migraine episode without a headache, it is called “typical aura without headache” or sometimes “silent” migraine, according to the American Migraine Foundation.
AIWS may also be related to epilepsy, infections and other brain disorders
In addition to migraine, there are other disorders associated with Alice in Wonderland syndrome, Grefe says.
“These include temporal epilepsy and certain types of infections, such as mononucleosis or influenza,” he explains.
Mononucleosis, or infectious mononucleosis, is usually caused by the Epstein-Barr virus (EBV), a type of herpesvirus and one of the most common human viruses, according to the Centers for Disease Control and Prevention (CDC). Most people contract it at some point in their lives. In rare cases, EBV can lead to complications such as encephalitis (inflammation of the brain), which is often the cause of AIWS in children.
Rarely, Alice in Wonderland syndrome is a sign of stroke or brain tumor, Chatterjee says. “That’s very rare, and there are usually many other symptoms in addition to the visual symptoms of Alice in Wonderland syndrome,” he says.
Alice in Wonderland syndrome can also be caused by certain drugs, such as LSD or other hallucinogens. And “there are definitely psychiatric disorders where those kinds of misperceptions are part of the symptoms,” Chatterjee says.
Treatment involves treating the underlying illness
Although a medical organization has not issued standardized guidelines on the diagnosis of AIWS, it is strongly recommended that, when a person has symptoms of the disorder, the various potential underlying causes be investigated with blood tests, EEG (electroencephalogram) and brain MRI.
An EEG detects changes in brain activity and can be used to diagnose epilepsy and other seizure disorders. MRIs can help diagnose conditions such as tumors, infections, inflammation, or damage caused by injury or stroke.
To diagnose migraine, a physical examination and the person’s symptoms and medical history are examined.
There is no specific treatment for Alice in Wonderland syndrome, Chatterjee says. “Treatment depends on what is causing the visual disturbance: if it’s migraine, we would use migraine medication. If it’s migraine, we would use migraine medication, that is, preventive medication if you have migraine frequently, and acute migraine treatment as needed,” he says.
If Alice in Wonderland syndrome is related to seizures, then anticonvulsant medication would be appropriate, Chatterjee adds.
“There is something going on in the migraine physiology or other underlying condition that triggers these perceptual phenomena,” Chatterjee says. For that reason, medication would not be given specifically for the visual disturbance of AIWS, he says.
“That’s what differentiates it from hallucinations or delusions, where medications can be given to try to suppress what’s generating those visual images inside the brain,” he says.
Since Alice in Wonderland syndrome is not like that, you would treat people for their migraine or epilepsy or whatever the underlying cause is, thus treating the disorder itself, not the expression of the disorder, Chatterjee says.