Syndrome makes people think they have shrunk – 03/16/2023 – Equilibrium

Josh Firth was nine years old and in the car with his parents when he noticed something strange happening to the buildings around him. They seemed to be getting bigger.

When he told his mother, Sonja, she was taken aback. To her, the buildings were as they always were.

“As the chariot moved, [na visão dele] the buildings on either side suddenly started to grow and seemed to be closing in on him,” she says.

And it wasn’t the only time. On another day, after returning from school, Josh – who is from Canberra, Australia – told his mother that “the teachers’ faces got bigger, disproportionate to the body, and the walls of the classroom elongated and moved away from him “.

Josh claims that once, when 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 most frightening at night, when “the corners of his room shifted, the walls warped and closed in towards him”, generating a sense of night terror, according to Sonja.

She says that sometimes her son said her voice sounded different. He felt that her speech became “lower and slower”.

It took about two years for the family to figure out what was going on. Josh suffers from a rare disorder 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 can include vision and time distortions.

Imagine spending your life watching people’s faces transform into dragons. This symptom is just one of the 40 types of visual distortions characteristic of the syndrome.

Some patients describe seeing different body parts being 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 quickly and unnaturally, or still.

Hearing can also be impaired. People who suffer from the syndrome may hear loved ones talking slowly or quickly, strangely or unnaturally.

And they report seeing objects or their own body parts shrinking or increasing in size, right before their eyes. The feeling is that they themselves are changing in size, which was the experience lived by Josh.

This last symptom gave the disorder its name. Alice, the character of the writer Lewis Carroll, shrunk after drinking a potion and grew after eating cake.

Carroll may have been inspired by his own perceptual distortions, perhaps caused by migraines with aura, which are temporary visual disturbances that often occur in migraine sufferers.

Other scholars have speculated that the writer may have suffered from Alice in Wonderland syndrome, caused by epilepsy, substance abuse or even an infection.

The causes are still a mystery.

Even after being formally described by doctors as a specific syndrome in 1955 and having some of its symptoms recorded even earlier, the exact causes of the syndrome remain unclear to this day. It’s a mystery that would make Alice herself more and more curious.

Researchers are still trying to unravel this strange condition. They hope to provide vital insights into how our brains interpret the world around us.

The signals from our gathered senses, combined with our accumulated life experiences, make each of us perceive the world differently from 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 London-based neuroscientist and author who discusses the Alice in Wonderland syndrome in his book Body Am I (“The body is me”, in free translation).

“It’s an active process,” he explains. “The brain acts on the sensory input it receives, based on our past experiences and biases. The way we perceive things influences how we act – and the way we act influences what we perceive.”

But sometimes our perception can become disordered, 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 sense of ourselves and suffering depersonalization. We may even end up experiencing the world itself as unreal, in a process known as derealization.

In the past, Alice in Wonderland syndrome used to be considered a generally harmless condition that does not need medical intervention.

Its symptoms are found, 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 condition.

But sometimes changes in perception of the world are caused by some underlying reason. A wide variety of causes of Alice in Wonderland syndrome in adults and children have been suggested, including strokes, 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 influenza and Coxsackie B1 virus. One study even identified it as a manifestation of Creutzfeldt-Jakob disease, a rapidly developing and often fatal neurodegenerative disorder.

Professor of clinical psychopathology Jan Dirk Blom, from the University of Leiden, in the Netherlands, is one of the few researchers who have dedicated themselves to the study of the Alice in Wonderland syndrome. He emphasizes that clinicians need to take patients who describe these symptoms seriously.

Blom states that the diagnosis and recognition of the syndrome has progressed little in recent decades. Therefore, diagnosis of patients can often take years. “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.”

At about age 16, Harris was diagnosed with epilepsy and received treatment for the condition.

But existing research, small as it may be, is beginning to provide some insight into why the syndrome affects some patients and not others.

“Genetics may help create susceptibility to Alice in Wonderland syndrome in some people, but empirical confirmation is still needed,” according to Blom.

In children, encephalitis caused primarily by the Epstein-Barr virus is the most common cause of the syndrome. Already among adults, she is more often associated with migraines.

migraine in the 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 cures as the more well-known migraines, plus excruciating abdominal pains that come in waves and last from two to 72 hours.

People with abdominal migraines often have a personal or family history of migraine headaches.

brain studies

Brain imaging tests are also offering some clues. They suggest that the syndrome may be caused by a disturbance in a region of the brain called the temporoparietal-occipital junction.

In it, visual and spatial information is combined with signals from touch, body position and pain.

Disruptions to this important gathering place for sensory information, caused by injury, neurological damage or swelling, can change the way the brain interprets incoming signals.

Blom says that there is still a lot of work to be done to understand exactly what goes on in the brains of patients with Alice in Wonderland syndrome.

But he believes the condition could provide vital insights into how the brain compiles information about our world.

“I think that the syndrome can teach us how sophisticated, complex and balanced the whole process of perception is, which we normally take for granted”, says Blom.

“Sometimes, perception is hardly impaired when fairly large parts of the brain are compromised or even non-existent (as occurs in prosopometamorphopsia caused by gunshot wounds, which tends to disappear within weeks)”, continues the professor.

“In other cases, the malfunction of small clusters of nerve cells [na síndrome] can cause large and lasting changes in our perception.”

“This syndrome teaches us that the entire (visual) perception network has huge parts that can be bypassed or compensated for by others, while some seem to be absolutely fundamental if we want to be able to properly perceive very basic aspects such as faces, lines, colors and movements “, explains Blom.

But conducting brain studies to get to the root of what happens in patients with Alice in Wonderland syndrome is not easy.

“I think the big obstacle is the rarity of the syndrome and the fact that the symptoms are temporary”, according to Costandi. “Therefore, it is difficult to examine the patient’s brain when he is experiencing symptoms.”

While, in some cases, the sensory distortions resulting from the syndrome can be mildly disorienting, they can also be terrifying and even pose a risk to other patients.

As Harris, now 54, describes it, “When the symptoms happened a lot, I didn’t want to go to a train station alone if it happened on the platform, or take a bus alone if it happened; you lose your independence. It affects everything. “.

Research indicates that most cases of Alice in Wonderland syndrome tend to resolve over time. But sometimes the symptoms can recur depending on the underlying cause.

Gillian Harris takes the highest dose of two anti-epileptic drugs. She has not suffered from seizures or the syndrome for two years. But Josh still suffers from “Alice” symptoms, as he calls them, but has developed coping mechanisms.

“Looking out the window or looking at yourself in the mirror really helps,” according to Sonja.

“When everything is going on, he looks at your facial features and that helps cut down on your Alice episode.”

Josh now carries a pocket mirror with him when he’s out and about, in case he needs to “reality check”.

read the original version of this report (in English) on the website BBC Future.

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