Alice in Wonderland Syndrome

What is Alice in Wonderland syndrome?

Alice in Wonderland syndrome (AIWS) is a rare condition that disrupts your brain’s ability to process sensory input. The disruption affects how you perceive the size of things you see around you, the feel or look of your own body, or both. It can also distort your sense of reality.

Who does Alice in Wonderland syndrome affect?

AIWS seems most common in children, with some research studies indicating that nearly two-thirds of cases happen in people under age 18. In addition to children, AIWS is more likely to happen in people with certain brain-related conditions.

How common is Alice in Wonderland syndrome?

AIWS seems to be rare. That’s partly because there’s limited research on how often it happens. Some available research indicates that up to 30% of teenagers experience brief episodes of AIWS symptoms, but more research is necessary to determine if this is the case and why it’s happening.

One of the reasons why there’s so little available research on AIWS is that it’s almost always temporary. Many of the conditions that cause it are also short-lived, so the effects of AIWS don’t last long. From 1955 to 2016, fewer than 200 cases lasted long enough and were serious enough to need direct medical attention.

Experts also disagree about the exact criteria and symptoms for the condition. Currently, there are no accepted criteria for AIWS, so healthcare providers will often use their professional judgment to decide whether or not to diagnose it. Because of all these factors, experts believe this condition is commonly underdiagnosed or misdiagnosed.

How does Alice in Wonderland syndrome affect my body?

Most experts organize the symptoms of AIWS into different types. While none of the types directly affect your body, one type can affect how your body feels or looks to you. That’s because AIWS seems to disrupt your brain’s ability to monitor your body for potential problems and changes.

The three types of symptoms break down as follows:

• Disturbances in self-perception. People with this have trouble correctly perceiving the size and feel of their own body (either the whole body or just specific parts). It also changes your sense of reality, your ability to feel connected to your body and your emotions, and the passage of time. This form makes up about 9% of cases.
• Disturbances in visual processing. This affects how your brain processes what you see around you. This is the most common form, making up about 75% of cases.
• Combined symptoms. This is when you experience symptoms that affect both your self-perception and visual processing.

What are the symptoms of Alice in Wonderland syndrome?

The symptoms that can happen with AIWS break down into two categories: self-perception symptoms or visual perception symptoms. People can also have both kinds of symptoms, but visual perception symptoms are much more common.

Self-perception symptoms

Your brain monitors and manages your body’s functions. This is extremely important, as it keeps you safe and healthy. However, it’s also possible for something to go wrong with that ability, which is what happens with self-perceptive symptoms of AIWS. They include:

• Changes in your perception of your body. This can cause part of your body to feel too big (partial macrosomatognosia) or too small (partial microsomatognosia). This effect can also cause your whole body to feel unusually tall (total macrosomatognosia) or unusually short (total microsomatognosia).
• Derealization. This is a form of dissociation when you feel disconnected from the world around you.
• Depersonalization. This type of dissociation makes you feel disconnected from your own body, thoughts or feelings. Some people describe this as feeling like watching your own life in third-person, as if you were watching from over your own shoulder or outside of yourself.
• Feeling of being split in two. Known as somatopsychic duality, people often describe this as feeling as if they’re split in two vertically. That makes them feel as if their body’s left and right halves exist separately, but they can still feel both.
• Disruption in sense of time. This changes your ability to judge the passage of time. People who experience this may feel that time is standing still or as if time is greatly slowed or sped up.

Visual perception symptoms

The most common symptoms of AIWS affect visual perception. That means the symptoms affect the way you see things around you. They include:

• Changes in size. Objects may appear larger (macropsia) or smaller (micropsia) than they actually are.
• Changes in distance. Objects may appear closer (pelopsia) or farther away (teleopsia) than they actually are.
• Changes in both size and distance. Objects may appear smaller and seem to be moving farther away (porropsia).
• People appearing smaller than they actually are. This is known as Lilliputianism (pronounced “lil-ip-yew-shun-ism”). This gets its name from the fictional, tiny residents of the island of Lilliput from the 1726 fantasy novel “Gulliver’s Travels” by Jonathan Swift.
• Changes in object appearance. Objects can appear distorted. Straight lines can look wavy or squiggly. Lines that are level vertically or horizontally can look skewed or slanted.

What causes Alice in Wonderland syndrome?

Experts don’t know exactly why AIWS happens, but they do know there are many conditions and circumstances that can cause it. The possible causes include, but aren’t limited to:

• Migraines. One of the most common ways that AIWS happens is with a migraine aura. It can also happen with other types of headaches, such as cluster headaches and abdominal migraines.
• Infections. Bacterial and viral infections are among the most common causes of AIWS. Some of the more likely infections to cause it include Epstein-Barr virus (EBV), type A or H1N1 influenza, varicella (the virus that causes chickenpox and shingles), typhoid fever, Lyme disease and scarlet fever. These are the most common cause of AIWS in children.
• Seizures. People who have seizure-related conditions (especially epilepsy) can experience AIWS.
• Certain types of strokes. Sudden loss of blood flow can disrupt areas of the brain that control self-perception and visual perception.
• Mental health conditions. These include schizophrenia, schizoaffective disorder, depressive disorders, etc.
• Medications. AIWS can be a side effect of many drugs. These include drugs found in common cough medicines like dextromethorphan or dihydrocodeine, asthma medications like montelukast, and anti-seizure medications like topiramate.
• Recreational drugs and inhalants. These include hallucinogens like LSD and inhalants like toluene.
• Brain tumors (including cancers).
• Degenerative brain diseases. There are reports of AIWS happening with conditions like Creutzfeldt-Jakob disease. However, this is extremely rare.

Is Alice in Wonderland syndrome contagious?

AIWS isn’t contagious. While it can happen with infections that can spread between people (like the flu), these aren’t the only cause.

How is AIWS diagnosed?

Unfortunately, there’s no way to diagnose AIWS conclusively. That’s because the condition is rare and usually short-lived, so there are no official criteria for it. The most likely way a provider will diagnose this condition is by asking you questions about the symptoms you have. They’ll also perform a neurological exam to determine if you’re having any issues with other types of brain function. They may also recommend certain types of diagnostic tests to look for or rule out other brain-related conditions — some of which are serious — that could cause AIWS symptoms.

What tests will be done to diagnose this condition?

The most likely tests with AIWS include the following. These include:

• Imaging tests. The most likely imaging tests are computed tomography (CT) scans or magnetic resonance imaging (MRI) scans. These tests can look for structural changes or other issues in your brain that could cause AIWS.
• Spinal tap (lumbar puncture). A thin layer of cerebrospinal fluid (CSF) surrounds your brain and spinal cord, cushioning them as you move. Lab tests can look for signs of infection in your CSF, which can help diagnose an infection causing AIWS.
• Electroencephalogram (EEG). This test analyzes the electrical activity in your brain. It’s a key test for diagnosing brain-related conditions like seizures and epilepsy.
• Visual evoked potentials. This test analyzes your eyes and the signals they send to your brain. It makes sure your eyes and optic nerves, which connect your eyes to your brain, are working correctly.

How is AIWS treated, and is there a cure?

The most common way to treat AIWS is by treating whatever’s causing it. Because of that, there are a vast number of treatments that might help with AIWS. Your healthcare provider is the best person to recommend treatments that might help. They can tailor that information to your specific condition, needs and circumstances. They can also advise you on the possible side effects or complications you might have and what you can do to limit or prevent them.

How do I take care of myself or manage the symptoms of Alice in Wonderland syndrome?

Because AIWS can happen with serious (or even life-threatening) conditions that affect your brain, you shouldn’t try to self-diagnose or treat it on your own.

How soon after treatment will I feel better, and how long does it take to recover from treatment?

The time it takes to feel better or recover from the symptoms of AIWS depends on the underlying cause and the treatments you receive (if you received any). Your healthcare provider is the best person to tell you the most likely timeline for you related to AIWS.

How can I reduce my risk of developing AIWS or prevent it entirely?

AIWS happens unpredictably and for reasons that experts still don’t fully understand. Because of that, it’s impossible to prevent it. Many of the conditions that cause it aren’t preventable, and there are limited (or no) ways to reduce your chances of developing AIWS. Fortunately, this condition is also rare, and when it does happen, it’s usually temporary and goes away quickly.

What can I expect if I have this condition?

If you have AIWS, you can expect changes in how you perceive your body, the world around you or both. These changes may be disturbing or even scary the first time they happen. However, this condition isn’t usually dangerous on its own.

While AIWS isn’t usually dangerous, you shouldn’t ignore the symptoms. That’s because AIWS could be happening due to dangerous conditions like a stroke or brain infection. If you have AIWS that only lasts a short while and goes away before you can get medical attention, you should still talk to a healthcare provider as soon as possible.

If you have AIWS along with stroke symptoms, you should get emergency medical care immediately. You should also get immediate medical care if you have a fever or other symptoms of brain- or nervous system-related infections. These include:

• Confusion, irritability or personality changes (you’re not acting like your usual self).
• Trouble speaking or moving.
• Seizures.
• Losing consciousness unexpectedly, especially when it’s difficult or impossible for someone to wake you back up.

How long does Alice in Wonderland syndrome last?

AIWS can last for different spans of time, depending on what causes it. It’s usually temporary, and episodes of AIWS may only last minutes or hours with many of the most common causes. However, other factors and conditions can make it last longer. Your healthcare provider is the best person to tell you how long this condition is likely to last for you and what — if anything — you can do to shorten or stop the symptoms.

What’s the outlook for this condition?

AIWS on its own is rarely dangerous, and there are very few cases where AIWS needs direct medical care. However, it can happen with dangerous conditions, and the outlook for these cases can vary widely. Your healthcare provider is the best person to tell you the likely outlook for your case and what you should expect.

How do I take care of myself?

For most people, managing the underlying condition can help reduce the severity of AIWS symptoms and how often they happen. For others, AIWS is a temporary effect of a condition that’s curable or goes away on its own.

If you have recurring episodes of AIWS related to a chronic condition like migraines or seizures, your healthcare provider is the best person to tell you what you can do to limit or manage AIWS symptoms. They can guide you on lifestyle changes or preventive and precautionary measures you can take to limit the effects of AIWS.

When should I see my healthcare provider?

You should get immediate medical care if you’ve never had AIWS symptoms before. That’s because AIWS is itself a possible symptom of medical conditions that are severe, dangerous or life-threatening. If you have a history of AIWS and a diagnosed chronic condition that can cause it, your healthcare provider is the best person to tell you the symptoms or warning signs that mean you need immediate medical attention.

Is Alice in Wonderland syndrome the same as schizophrenia?

No, AIWS and schizophrenia are separate conditions. AIWS can happen in people with schizophrenia, but this isn’t common. There are also many other conditions and circumstances besides schizophrenia that can cause a person to develop AIWS symptoms.

Why is this condition named for a fictional storybook character?

AIWS was first described and named in 1955 by a psychiatrist from England named John Todd. Todd named this condition for the main character of the 1865 storybook “Alice’s Adventures in Wonderland” by Lewis Carroll. In reality, Lewis Carroll was a pen name for English mathematician and writer Charles Dodgson.

In the book “Alice’s Adventures in Wonderland,” Alice encounters situations where the size of objects, creatures and even herself are distorted. Alice is, at times, incredibly tiny. At other times, Alice grows and is a giant towering over others.

More than a century after Dodgson’s death, medical experts suspect some of what Dodgson wrote about in “Alice’s Adventures in Wonderland” was based on symptoms he was experiencing. Writings from his diary may also support this, as Dodgson described some symptoms that would fit with conditions that can cause AIWS. However, because Dodgson died in 1898, there’s no way to know for certain if he truly had AIWS himself.

A note from Cleveland Clinic

Alice in Wonderland syndrome (AIWS) is a rare condition that happens because of disruptions in how your brain processes your perceptions of your own body or the world around you. That can make parts of your body — or your whole body — feel or look smaller or larger than usual. It can also make things you see around you look smaller or larger, or change where they appear to be in relation to you. Most cases of AIWS are temporary and short-lived. However, having these symptoms — especially if you’ve never had them before — can still be a disturbing or even scary experience.

You shouldn’t ignore AIWS symptoms. While experts still don’t fully understand AIWS, it’s often possible to treat, or even cure, the underlying cause. That means this already-rare condition is usually just a temporary concern for most people who have it.