The Alice in Wonderland Syndrome

The Alice in Wonderland Syndrome is a variant of migraine. In this article, you will learn what bizarre perceptual disturbances can occur and how it can be treated.

Reading time: 11 minutes

Last updated: February 6, 2024

I am lying in my bed and my whole body is undulating. Sometimes it’s very thick, sometimes very thin.

I don’t see it, but I feel it. Everything I look at is the same or I even see things that aren’t there, things that go from thick to thin and back to thick. Everything is undulating. The most common thing I see are shapes on the ceiling. Sometimes it’s a roundish something, sometimes tree-like branches, like arms. These branches grow thicker and thinner… I feel like I’m going to vomit!

This scene occurred when I was around 12 years old. For a long time, I thought it was the first and only time I had a fever. As an adult, after being diagnosed with migraines and reading more about aura and other associated symptoms of migraines, I wondered if this could have been the so-called Alice in Wonderland Syndrome.

In my early 20s, during a stressful exam phase at the end of my training, I experienced more perceptual disturbances that I couldn’t quite place. I was working as a nurse trainee in a hospital when I repeatedly experienced time distortions.

For instance, once I was in the nurse’s station and looked through the large window down the hallway and saw a patient walking toward the right side of the long hospital corridor. I continued working, tidying up this and that, and at least 10 minutes seemed to pass. When I rushed back into the hallway, the same patient was just coming out from behind the nurse’s station window. Had I experienced a time distortion? I even asked him if he had walked back and forth a few times, but no—he was on his way directly to his room.

Such situations, where time seemed to pass faster or slower, occurred several times during those stressful exam months. Sometimes the hallway seemed unbearably long, and I couldn’t move normally. I would stop and try to take a deep breath, after which the hallway shortened again and my movements returned to normal.

This was always accompanied by an absurd, uniform feeling in my body. What happened outside also happened in my body.

At the time, I thought I was just stressed out or partying too much alongside my studies. It was strange, but I also found it somehow interesting. I didn’t really worry about it, and I didn’t think much about it afterward either.

That was until I met Sammi and Karo, a couple from Belgium, while traveling by bus in a beautiful gorge in northern Greece. Like me, they were on a long trip with their bus. Sammi, a 29-year-old cook, suffers from migraines and the Alice in Wonderland Syndrome.

From our first meeting in Greece, I kept running into them since we were more or less traveling the same route. During one of our various barbecues, Sammi shared his crazy and disturbing migraine and Alice in Wonderland Syndrome story with me.

What is the Alice in Wonderland Syndrome?

The Alice in Wonderland Syndrome (AIWS) was first described in 1952 by American neurologist Caro Lippman. However, it was later named Todd’s Syndrome in 1955 after English psychiatrist John Todd’s more influential description of the syndrome.

Todd described the syndrome as a range of perceptual disturbances involving distortions of the size, mass, or shape of one’s own body or its position in space, often accompanied by depersonalization and/or derealization. AIWS frequently occurs as part of a migraine, particularly during the aura phase.

The phenomenon is named after the character Alice from the novel Alice’s Adventures in Wonderland by Lewis Carroll. In the story, the main character Alice describes her body alternately shrinking and growing. Author Lewis Carroll also described perceptual disturbances and typical migraine symptoms in his diaries.

Although Todd and Lippman’s descriptions involved adolescents or adults, AIWS is most commonly reported in children today. Children suffering from Alice in Wonderland Syndrome often stop playing, withdraw, and appear anxious. Symptoms usually occur just before falling asleep and tend to disappear during puberty.

It is difficult to determine exactly how many people are affected by the syndrome, as it encompasses a wide range of symptoms and manifestations.

Causes: How Does the Alice in Wonderland Syndrome Develop?

AIWS is not a standalone illness but rather a symptom of an underlying neurological or psychiatric condition, such as migraines. In this case, Alice in Wonderland Syndrome occurs as part of the aura phase of a migraine. Other underlying conditions can include:

Epilepsy: The syndrome may appear as a precursor to an epileptic seizure.

Infection with the Zoster or Epstein-Barr virus: The herpesvirus, known for causing infectious mononucleosis, is likely the most common cause of AIWS in children.

Drug abuse: Excessive consumption of psychoactive, hallucinogenic drugs or “party drugs” can induce these states.

Stroke

Brain tumor

Schizophrenia

Depression

The syndrome likely originates from organic or functional changes in a specific area of the brain, the temporal lobe. This area of the brain is responsible for various sensory perceptions and memory functions. However, the exact cause remains unclear and requires further research.

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Symptoms of the Alice in Wonderland Syndrome

Those affected report partial disorientation due to altered perceptions of their surroundings and their own bodies. This can lead to anxiety or even panic attacks.

Typical symptoms of the Alice in Wonderland Syndrome include:

Macroscopy: The body or body parts, such as hands and arms, appear larger.

Microscopy: The body or body parts appear smaller.

Metamorphopsia: Objects in the environment appear distorted, larger, smaller, or move in strange ways, including:

Teleopsia: Objects seem farther away than they actually are.

Pelopsia: Objects seem closer than they actually are.

Dysmorphopsia: The environment appears shapeless and distorted.

Hallucinations: Seeing objects or shapes that are not present.

Loss of Orientation: Affected individuals may no longer know where up or down, or left or right, is. Disorientation of body parts, similar to the paintings of Pablo Picasso, may also occur.

Changes in the perception of time: Time may seem to fly by or pass very slowly.

Derealization: The external world is experienced as unreal.

Depersonalization: A sense of detachment from oneself.

Auditory perceptions: Hearing voices or sounds.

Changes in touch sensation: The ground may disappear or feel soft.

Physical symptoms: Nausea, vomiting, headaches, dizziness, and fatigue.

In Lewis Carroll’s story, Alice describes similar perceptual disturbances. For example, when she falls into the rabbit hole, she experiences a slowing down of time:

“Either the well was very deep, or she fell very slowly, because she had a lot of time to look around and wonder what would happen next.”

In Chapter 2, after drinking from a bottle labeled “DRINK ME,” her body shrinks; then, after eating a cake, she grows so large that she hits the ceiling.

“Stranger and stranger!” Alice exclaimed. “Now I am opening up like the biggest telescope ever! Goodbye, feet!”

Treatment of the Alice in Wonderland Syndrome

Unfortunately, there is no specific treatment for the Alice in Wonderland Syndrome. If the syndrome is particularly severe, calming medication may be prescribed to protect the affected individual during the acute phase.

However, help is available: In treatment, it is essential to identify and treat the underlying condition. For example, if AIWS occurs as part of a migraine aura, migraine prevention with medications or alternative therapies may be appropriate. If it is part of epilepsy, anticonvulsants are prescribed. Ideally, the symptoms of the Alice in Wonderland Syndrome will subside once the underlying condition is treated.

“Suddenly everything around me is moving very, very fast!”

Sammi, the cook from Belgium, was also treated with antidepressants as migraine and AIWS prevention. He had his first migraine attacks as a child, under the age of 10. At the age of 13, the symptoms of Alice in Wonderland Syndrome began.

Most of the time, his migraines would come at night, starting with nightmares. Once or twice a year, the attack would begin with everything around him moving incredibly fast.

“In my dreams, it was like in the movies, where cars are flying over highways, and the camera shows just the passing lanes.”

“When I woke up, I usually had a headache and had to throw up. I didn’t even know who I was or where I was. Back then, I didn’t realize it was connected to migraines.”

Sammi also experienced symptoms of derealization and depersonalization. After about three years, around the age of 16, the symptoms of AIWS stopped, and Sammi only experienced migraines without AIWS.

But two years ago, the Alice in Wonderland Syndrome suddenly reappeared during a very stressful period. “I had just started working as a chef, and it was very stressful. At the same time, we began planning our world trip and converting the bus.”

During this time, Sammi experienced Todd’s Syndrome symptoms two to three times a week for 5 to 15 minutes, without nausea or headaches. It happened quite frequently. This phase lasted about three to four months before things calmed down again.

“When I had it the first time, I was sitting on my bike, and everything was passing by unnaturally fast. I thought, this can’t be, I’m not even riding that fast.”

Once, he had it while driving. “It’s really dangerous; you have to stop immediately, and even the steering wheel seemed to move away from me. At work, it wasn’t safe either since I work with big knives.”

Sammi did his own research and found that it must be Alice in Wonderland Syndrome. He went to a neurologist, who confirmed the diagnosis. The doctor mentioned it was unusual for the symptoms to persist after puberty and suggested antidepressants as a preventative treatment, but Sammi declined.

When AIWS comes, he tries to relax by calmly breathing in and out.

“Especially when I’m stressed, like during an argument with my girlfriend, it happens. Then my chin gets very heavy, and suddenly everything, including Caro, moves away from me. Everything feels 10 to 20 meters away, and I can barely hear when she talks.”

Sammi identified alcohol and sleep deprivation as migraine triggers, but the Alice in Wonderland Syndrome is more triggered by stress.

Today, Sammi still experiences occasional migraines, but the symptoms of Todd’s Syndrome are very rare. Since traveling in their bus and no longer working, he hasn’t had an episode.

Sources

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Todd, J. (1955): „The syndrome of Alice in Wonderland.“ In: Can Med Assoc Journal, 73, S. 701-704.
Carroll, L. (1865): „Alice’s Adventures in Wonderland.“
Green, R.L. (1953): „The Diaries of Lewis Carroll“
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Mastria, Giulio et al. (2016): “Alice in Wonderland Syndrome: A Clinical and Pathophysiological Review.” In: BioMed research international.
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About the Author

Miriam Jansen

Miriam had to give up her job due to chronic migraines - and became a migraine expert during this time. The migraine helped her to make a radical change in her life: She now lives as a digital nomad in her bus and works as a copywriter & as a shepherdess on an alp.