I felt my vision was distorted and space was twisted. The doctor said I had walked into Alice in Wonderland.

Still from Svankmajer's Alice (1988). © CogniFit Blog

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A friend of mine once described to me the "illusion" he often experienced when he was a child: the wall farthest from him in the room began to slowly recede, and finally turned into a small white square floating in the distance. He turned back to look at the book in his hand and found that the words on the book were much larger.

In addition to Alice in Wonderland Syndrome (AIWS), there is also a similar form of "Alice in Wonderland-like syndrome" (AIWLS). What is the difference between the two? Patients with AIWS will perceive changes in the size of their body parts. For example, they may suddenly feel that their feet have become smaller or stretched farther away, or that their hands have become much larger than before. This is closely related to AIWLS. AIWLS patients will misjudge the size of objects or their distance from themselves, such as seeing things as larger, smaller, thicker or thinner than they should be. Patients who have experienced both symptoms should be classified as AIWLS.

Josh Firth, 9, was traveling with his parents when he suddenly noticed that the buildings on the roadside had changed strangely - they looked bigger. He told his mother Sonja, who was confused because the buildings looked the same as usual.

Sonya said: " (In Josh's view) as the car moved, the buildings on both sides of the road suddenly became huge and felt like they were moving closer to him. "

This strange incident is not accidental. Josh, from Canberra, Australia, came home from school one day and described to his mother: " The teacher's face became huge and disproportionate to his body, and the walls of the classroom were stretched and farther away from him. " Josh also said that once when he was playing chess at school, he noticed that " his fingers became so thick and wide that he felt he couldn't hold the chess pieces ."

Still from Svankmajer's animation Dark, Light, Dark (Tma/Svetlo/Tma, 1989). © Facebook

Sonya said that these strange events would become more strange at night, "the corners of (Josh's) room began to deform, the walls became shaky and fell towards him." This caused Josh to have convulsions at night. Sonya said that sometimes her son would complain that her voice was different, and in his opinion, his mother spoke "in a low tone and slowly."

It took nearly two years for Josh's family to figure out what had happened. Josh suffers from a rare condition called Alice in Wonderland syndrome (AIWS), sometimes referred to as "Todd's syndrome."

Alice in Wonderland syndrome affects the way a person perceives the world around them[1] and distorts their sense of their body and the space it occupies, including distortions in vision and time. Imagine that every human face you see throughout your life becomes like a dragon's face[2].

© Pinterest

However, this symptom is just one of 40 visual distortions that characterize Alice in Wonderland syndrome.[3] Some sufferers also describe seeing different body parts added to the person in front of them , such as a stubbed arm growing out of the face of the person sitting in front of them. Other symptoms include seeing people or objects moving slowly or quickly, or standing still completely.[4] Sufferers’ hearing can also be affected—they may perceive loved ones speaking unusually slowly or unnaturally fast . Sufferers also claim to see objects or parts of their own body expand or shrink before their eyes,[5] as if they were changing size, as Josh experienced.

The condition is named after the last symptom. It is named after the fictional character Alice in Lewis Carroll's books, who becomes smaller after drinking a magic potion and grows larger again after eating a cake. Carroll himself may have been inspired by his own perceptual disturbances, or it may be caused by the symptoms of migraine auras[6] - migraine sufferers often experience brief visual disturbances. Some even suggest that Carroll may have suffered from Alice in Wonderland syndrome due to epilepsy, drug abuse or even infection.

© Philadelphia Inquirer

Although the disease was officially named as a specific syndrome in 1955 and some of the symptoms had been recorded by doctors before that, the exact cause of Alice in Wonderland Syndrome remains unclear, and even Alice herself may find it increasingly strange.

As researchers try to shed light on this strange situation, they hope to uncover important clues to explaining how the brain interprets the world around us.

Josh now carries a mirror with him for a "reality check" whenever he starts to experience symptoms. © Sonja Firth

Signals from our many senses, combined with past life experiences, make each of us perceive the world differently. **We all exist in our own unique reality. London-based neurologist Moheb Costandi discusses Alice in Wonderland Syndrome in his book Body Am I, saying:

“Perception is not a passive process that relies solely on the senses of sight, hearing, touch, taste, and smell, but an active process. The brain processes incoming sensory stimuli based on our past experiences and biases. The way we perceive things affects our behavior, and our behavior affects our perception.”

But when we experience hallucinations, delusions, or mental distortions, our perceptions can become disrupted. When our perception of ourselves or the world around us becomes distorted, we risk losing our sense of self or experiencing depersonalization. We may even end up experiencing the world itself as unreal, a process known as derealization .

In the past, Alice in Wonderland syndrome was often ignored and considered a harmless condition that did not require medical intervention. Symptoms of Alice in Wonderland syndrome are also present in the general population to some degree, with up to 30% of adolescents experiencing mild or transient symptoms.[7] Certain illegal drugs can also trigger symptoms.

Sometimes, however, our altered perception of the world may be caused by something deeper. There are many causes of Alice in Wonderland syndrome in children and adults , including stroke, brain tumors, aneurysms, viral infections, epilepsy, migraines, eye diseases, and mental illnesses such as depression and schizophrenia. Some infectious diseases, such as Lyme disease, H1N1 influenza, and Coxsackievirus B1, can also cause the syndrome. One study even identified the syndrome as a manifestation of Creutzfeldt-Jacob Disease (CJD), a rapidly progressive and highly fatal neurodegenerative disease[8].

© BBC

Jan Dirk Blom, a professor of clinical psychopathology at Leiden University in the Netherlands and one of a handful of researchers working on Alice in Wonderland syndrome, stresses that doctors need to take patients who describe these symptoms seriously.

Blom said that there has been little progress in the diagnosis and identification of Alice in Wonderland syndrome over the past few decades. "It's a real challenge," he said, which means that many potential patients may have gone unnoticed for years.

As a teenager, I was aware that I had thick limbs, especially huge arms.

—Gillian Harris

Gillian Harris, from Pulborough, West Sussex, suffered from Alice in Wonderland syndrome since childhood but was not diagnosed with the condition until six years ago, when she was 48.

"As a child, I felt like objects were moving away from me," Harris said. "As a teenager, I realized my limbs were very thick and my arms were huge." At the age of 16, she was diagnosed with epilepsy and received treatment accordingly.

© Tumbex

Although there are only a few studies, the existing conclusions are enough to give us some clues to explore how Alice in Wonderland Syndrome afflicts this group of patients.

Blom said genes may play an important role in susceptibility to Alice in Wonderland syndrome, although more evidence is needed to be sure.

In children, encephalitis, primarily caused by the Epstein-Barr virus, is the most common cause of Alice in Wonderland syndrome, while in adults, the syndrome is often associated with migraines.

Surprisingly, the same sensory distortions that Alice in Wonderland syndrome causes can also occur in people with abdominal migraines. This condition shares triggers and relief with more common migraines, but is often accompanied by bouts of intense abdominal pain that can last from 2 to 72 hours. People with abdominal migraines often have a personal or family history of migraines.

© Elsevier

Brain imaging has also provided some insights, suggesting that Alice in Wonderland syndrome may be caused by dysfunction in an area of ​​the brain called the temporo-parietal-occipital junction .[9] This area processes visual and spatial information as well as information about touch, body position, and pain.

Changes at this critical intersection of sensory information caused by pathology, nerve damage, or brain edema can alter the way the brain interprets signals.

Blom says there is still much work to be done to understand exactly what happens in the brains of people with Alice in Wonderland syndrome, but he believes the disorder, known by its acronym AIWS, could provide important clues about how the brain encodes information about the world.

© CogniFit Blog

“I think Alice in Wonderland Syndrome can teach us how the whole process of perception is very delicate, complex, and balanced, and not as simple as we thought,” Blom said. “Sometimes, even if a fairly large area of ​​the brain is damaged or even missing, it has little effect on perception (such as facial dysmorphia caused by a gunshot wound, which disappears within a few weeks). In other cases, however, a small number of neurons in the brain malfunctions, resulting in major and lasting changes in perception.

"This syndrome tells us that there are many parts of the whole network of (visual) perception that can be ignored or compensated for by other parts. However, if we want to accurately recognize basic aspects such as faces, lines, colors and movements, other (irreplaceable) parts of the above network are crucial."

But studying the brains of people with Alice in Wonderland Syndrome to understand the root causes of the disease is not easy. "I think the biggest obstacle is that Alice in Wonderland Syndrome is rare and the symptoms are short-lived," Constantine said. "It is also difficult to scan the brain of patients when they are ill."

Alice in Wonderland syndrome symptoms are surprisingly common in the general population. © Alamy

Although in some cases, the sensory disturbances caused by Alice in Wonderland syndrome only make people slightly dizzy, sometimes the disease makes patients terrified and put into dangerous situations. Gillian, 54, described it this way: "When I had frequent attacks, I didn't even dare to go to the train station or take the bus alone, worrying that I would suddenly have an attack at the platform or on the bus. You lose your independence and it affects everything you do."

Research suggests that in most cases, symptoms of Alice in Wonderland syndrome tend to disappear over time, but symptoms may recur depending on the underlying cause.[10]

Gillian has been seizure- and Alice in Wonderland-free for two years, taking the maximum dose of two anti-epileptic drugs. Josh, however, still suffers from "Alice" (as he calls his illness), but he has a way to deal with "her."

"Looking out the window or in the mirror really helps him when he has an attack," Sonia said. "When he looks at his facial features, it helps shorten the duration of Alice's attack." When Josh is not at home, he carries a pocket mirror with him at all times in case he needs a "reality check."

References:

[1]cp.neurology.org/content/6/3/259.full#T1

[2]www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61690-1/fulltext

[3]www.sciencedirect.com/science/article/pii/S0010945221000836

[4]www.frontiersin.org/articles/10.3389/fpsyt.2021.668633/full#B22

[5]www.frontiersin.org/articles/10.3389/fneur.2019.00473/full#B4

[6]www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)74368-3/fulltext

[7]cp.neurology.org/content/6/3/259.full

[8]www.frontiersin.org/articles/10.3389/fneur.2019.00473/full

[9]www.hindawi.com/journals/bmri/2016/8243145/

[10]cp.neurology.org/content/6/3/259

By Roberta Angheleanu

Translated by Pharmacist

Proofreading/boomchacha

Original article/www.bbc.com/future/article/20230313-the-mystery-of-alice-in-wonderland-syndrome

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