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The number of people who suffer from the symptoms of Alice’s Wonderland Strange Syndrome is surprising.
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- Author, Roberta Angheleanu
- Rolle, BBC Future
9 hours ago
Josh Firth was nine years old and in the car with his parents when he noticed something strange was happening to the buildings around him. They seemed to get bigger.
When he told his mother Sonja, she was stunned. For them, the buildings were the same as always.
“As the chariot moved, [na visão dele] the buildings on either side suddenly started to grow and seemed to be getting closer,” she says.
And it wasn’t the only time. Another day, after returning from school, Josh who hails from Canberra, Australia told his mother that “teachers’ faces got bigger, disproportionate to their bodies, and the classroom walls got longer and moved away from him “.
Josh claims that when he was playing chess at school, he observed “his fingers getting longer and wider to the point where he couldn’t hold the chess pieces anymore.”
These strange episodes were scariest at night, when “the corners of his room would move, the walls would warp and get closer to him” and, according to Sonja, would induce a feeling of night terrors.
She says her son sometimes said her voice sounded different. He felt his speech was getting “deeper and slower”.
It took about two years for the family to find out what was going on. Josh suffers from a rare condition known as Alice in Wonderland Syndrome, also known as Todd Syndrome.
The syndrome affects the way people perceive the world around them and can distort their experience within their own body and the space it occupies. It may contain visual and time distortions.
Imagine spending your life watching people’s faces turn into dragons. This symptom is just one of 40 types of visual distortions characteristic of the syndrome.
Some patients describe how other body parts were added to the people in front of them, such as a shorter arm attached to the face of the person sitting in front of them. Other symptoms include seeing people or objects moving in slow motion or fast and unnaturally or still.
Hearing can also be impaired. People with the syndrome may hear loved ones speaking slowly or quickly, strangely or unnaturally.
And they report that objects or their own body parts shrink or increase in size right before their eyes. The feeling is that they themselves change size, which was Josh’s experience.
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Josh carries a mirror in his pocket when he leaves the house for a “reality check.”
This last symptom gave the disorder its name. Alice, the character of writer Lewis Carroll, shrank after drinking a potion and grew after eating cake.
Carroll may have been inspired by his own perceptual disturbances, which may have been caused by migraines with aura, which are temporary visual disturbances common in migraine sufferers.
Other scholars have speculated that the writer may have suffered from Alice in Wonderland Syndrome caused by epilepsy, drug abuse, or even an infection.
The causes are still a mystery.
Even after it was officially described by doctors as a specific syndrome in 1955 and some of its symptoms were recorded even earlier, the exact causes of the syndrome are still unclear today. It’s a mystery that would intrigue Alice herself.
Researchers are still trying to unravel this strange condition. They hope to gain important insights into how our brain interprets the world around us.
The signals from our collected senses, combined with our collected life experiences, make each of us perceive the world differently than the others. We all live in our own unique reality.
“Perception is not a passive process of merely seeing, hearing, feeling, tasting or smelling,” says Moheb Costandi, a Londonbased neuroscientist and author who discusses Alice in Wonderland syndrome in his book Body Am I. It’s Me free translation).
“It’s an active process,” he explains. “The brain responds to the sensory input it receives based on our past experiences and prejudices. The way we perceive things affects how we act and the way we act affects what we perceive.”
But sometimes our perception can be disrupted, as happens when people experience hallucinations, illusions, or distortions.
With a distorted perception of ourselves and the world we live in, we risk losing our selfesteem and suffering depersonalization. We can even experience the world itself as unreal, in a process known as derealization.
Alice in Wonderland Syndrome used to be considered a generally harmless condition that did not require medical intervention.
Its symptoms occur to some degree in the general population, and up to 30% of adolescents report mild or transient experiences of the syndrome. Certain cough medicines and illicit hallucinogenic substances are also known to activate this state.
But sometimes changes in perception of the world are caused by an underlying reason. A variety of causes of Alice in Wonderland Syndrome in adults and children have been suggested, including stroke, brain tumors, aneurysms, viral infections, epilepsy, migraines, eye diseases, and psychiatric disorders such as depression and schizophrenia.
The syndrome has been linked to infections such as Lyme disease, H1N1 flu and the Coxsackie B1 virus. One study even identified it as a manifestation of CreutzfeldtJakob disease, a rapidly evolving and often fatal neurodegenerative disorder.
Professor of clinical psychopathology Jan Dirk Blom from Leiden University in the Netherlands is one of the few researchers dedicated to studying Alice in Wonderland syndrome. He stresses that doctors must take patients who describe these symptoms seriously.
Blom states that the diagnosis and detection of the syndrome has made little progress in recent decades. As a result, it can often take years for patients to be diagnosed. “It’s a real challenge,” he says.
Gillian Harris, from Pulborough, UK, was diagnosed just six years ago at the age of 48 after suffering from Alice in Wonderland Syndrome from a young age.
“As a child, I sometimes felt like things were further away from me,” she says. “And as a teenager, I also noticed that my limbs were huge and my arms were absolutely huge.”
Around the age of 16, Harris was diagnosed with epilepsy and underwent treatment.
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Symptoms of Alice in Wonderland Syndrome are surprisingly common in the general population
But the existing research, however small, is beginning to shed light on why the syndrome affects some patients and not others.
“Genetics may help create a susceptibility to Alice in Wonderland Syndrome in some people, but empirical confirmation is still needed,” Blom said.
In children, encephalitis, mainly caused by the EpsteinBarr virus, is the most common cause of the syndrome. Even in adults, it is more commonly associated with migraines.
migraine in stomach
Surprisingly, the sensory distortions of Alice in Wonderland syndrome can also occur in people who suffer from abdominal migraines, a condition that has the same triggers and remedies as the more wellknown migraines, plus excruciating abdominal pain that comes in waves and by two last up to 72 hours.
People with abdominal migraines often have a personal or family history of migraine headaches.
brain studies
Brain imaging tests also offer some clues. They suggest that the syndrome may be caused by a disorder in a region of the brain called the temporoparietaloccipital junction.
It combines visual and spatial information with cues from touch, posture, and pain.
Disruptions to this important gathering place for sensory information, caused by injury, neurological damage, or swelling, can alter the way the brain interprets incoming signals.
Blom says there is still work to be done to understand exactly what goes on in the brains of patients with Alice in Wonderland Syndrome.
But he thinks the condition could provide important insights into how the brain puts together information about our world.
“I think the syndrome can teach us how sophisticated, complex, and balanced the whole perceptual process we normally take for granted is,” says Blom.
“Sometimes perception is barely affected when larger parts of the brain are affected or absent (as in prosopometamorphopsia from gunshot wounds, which usually resolve within weeks),” the professor continues.
“In other cases, the malfunction of small clusters of nerve cells [na síndrome] can bring about large and lasting changes in our perception.”
“This syndrome teaches us that the whole (visual) perceptual network has huge parts that can be bypassed or compensated for by others, while some seem absolutely basic if we want to be able to see very basic aspects like faces, lines properly to perceive colors and movements,” explains Blom.
However, it is not easy to conduct brain studies to get to the bottom of what is happening in patients with Alice in Wonderland Syndrome.
“I think the big obstacle is the rarity of the syndrome and the fact that the symptoms are transient,” Costandi said. “So it’s difficult to examine the patient’s brain when they have symptoms.”
While in some cases the sensory distortions resulting from the syndrome can be mildly confusing, they can also be frightening and even pose a risk to other patients.
As Harris, now 54, describes it: “When the symptoms were common, I didn’t want to walk alone to a train station if it happened on the platform, or take a bus alone if it happened; you lose your independence. It affects everything.”
Research shows that most cases of Alice in Wonderland Syndrome resolve over time. But sometimes symptoms can return depending on the underlying cause.
Gillian Harris is on the highest dose of two antiepileptic drugs. She hasn’t had seizures or the syndrome for two years. But Josh still suffers from what he calls “Alice” symptoms but has developed coping mechanisms.
“Looking out the window or looking at yourself in the mirror really helps,” says Sonja.
“When everything’s going well, he looks at your facial features and that helps reduce your Alice episode.”
Josh now carries a pocket mirror with him when he’s out and about in case he needs to do a “reality check”.
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