What is Alice in Wonderland Syndrome (AIWS)?

Summary: Alice in Wonderland is a brain disorder that causes changes in the way a person perceives both external and internal stimuli and/or sensations. In some cases, it’s related to a mental heath disorder, and in others, a physical disease, condition, or injury.

Key Points:

• AIWS is rare and almost always temporary.
• It’s named after Alice’s experiences of her body changing size in the book Alice in Wonderland.
• The various symptoms are united by an altered perception of reality.
• People with AIWS often report the feeling of being in a dream-like, unreal, or surreal state.

Alice in Wonderland Syndrome (AIWS): Basic Facts

Here’s a good basic definition of AIWS:

“Alice in Wonderland syndrome is a rare neurological disorder characterized by distorted visual perception, alteration of body image, and an altered perception of time. These symptoms are accompanied by feelings of derealization and depersonalization.”

The publication Alice in Wonderland Syndrome: A Systematic Review indicates that there is no reliable information on prevalence of AIWS in the general population. Overall, it’s rare. However, in various populations, prevalence rates – while not high – are significant, nonetheless. We’ll report those rates in a moment, because they need context for them to make sense.

What Causes AIWS?

The review we cite above offers this explanation:

“The symptoms of AIWS are attributed to functional and structural aberrations of the perceptual system.”

But what causes those aberrations?

In most cases they’re caused by diseases, conditions, medications, or recreational substances. Here’s a list of know diseases and conditions that may result in AIWS:

Diseases, Disorders, Physical Conditions Associated With AIWS

1. Mental health disorders, including:

• • • Schizophrenia
    • Schizoaffective disorder
    • Depressive disorders
    • Capgras syndrome, i.e. thinking someone you know is an imposter
    • Misidentification syndrome
    • Derealization/depersonalization disorder

2. Infectious diseases, including:

• • • Encephalitis, i.e. inflammation in brain
    • Cytomegalovirus, type of herpes virus
    • Epstein-Barr encephalitis
    • Influenza-associated encephalitis
    • Lyme’s disease
    • Scarlet fever
    • Typhoid encephalopathy
    • Varicella-zoster associated encephalitis

3. Pathologies of the central nervous system (CNS), including:

• • • Encephalomyelitis, i.e. inflammation of myeloid tissue in brain
    • Angioma, i.e. noncancerous bumps on skin, mostly in people over age 50
    • Cerebral arteriosclerosis, i.e. buildup of plaque that narrows/hardens arteries in brain
    • Cerebral thrombosis, i.e. a blood clot in brain
    • Brain tumors
    • Cerebral infarction, i.e. death of brain tissue caused by stroke
    • Robin Hood syndrome, i.e. when body reallocates blood supply from one area of body to another
    • Wallenberg syndrome, i.e. post-stroke pain/numbness in various areas of body

4. Pathologies of the peripheral nervous system, including:

• • • Eye disease
    • Middle ear disease

5. Neurological disorders, including:

• • • Migraine headaches
    • Epilepsy
    • CSF lymphocytosis, i.e. elevated immune product in spinal fluid

6. Medications, including:

• • • Dextromethorphan
    • 5-HT2 receptor antagonist medication, used for migraines, Raynaud’s disease, and Parkinson’s disease

7. Substance use, including:

• • • Cannabis
    • LSD
    • MDMA
    • Mescaline
    • Cocaine
    • Other psychedelics

Those are the diseases, conditions, disorders, and substances that can cause AIWS. In addition, AIWS may appear in children or adults without any of those disorders. Now let’s take a look at what we do know about the prevalence of AIWS. As we mention above, there is no data on the prevalence of AIWS in the general population, but among people with specific disorders/conditions, experts estimate the following prevalences:

• Migraines: 38%
• Infectious diseases: 18.4%
• Epilepsy: 18.1%
• CNS pathologies: 7.1%
• Mental health disorders: 8.3%
• PNS pathologies: 0.6%

In addition, experts estimate that around 15 percent of adolescents experience transitory symptoms of AIWS.

What Are the Common Symptoms of AIWS?

In general, it’s possible to place the symptoms of AIWS in three categories: visual perception of self/others, perception of time, perception of physical sensations. We’ll list the common symptoms from these three categories, starting with visual perception of self/others.

Visual Distortions in AIWS

• Problems perceiving colors
• Inability to detect motion
• Mistaking the texture of surfaces, i.e. seeing a rough surface as smooth
• Seeing everything with a green, blue, red hue
• Seeing everything in one color only
• Perceiving all colors as bright
• Confusing colors for one another
• Impaired ability to distinguish size
• Perceiving size and distance as changing/changeable
• Seeing straight lines as curved and vice versa
• Perceiving three dimensional objects as two dimensional
• Seeing object in exaggerated detail
• Seeing multiple images, like a fly
• Perceiving only half of an object
• Seeing objects as split in half
• Perceiving things as smaller or larger than they are
• Perceivng close objects as far away and vice versa
• Seeing stationary objects move away
• Perceiving people’s faces as distorted

Next, the time-related symptoms:

Time Related Distortions in AWS

• Perceiving that time is passing more slowly than it actually is
• Perceiving that time is passing more quickly than it actually is

These experiences are separate and distinct from feeling like time is going by slowly when bored or engaging in an activity you don’t enjoy, or time passing quickly when having fun or engaged in an activity you do enjoy.

Finally, the physical symptoms:

Somatic/Physical/Distortions of Sensation in AIWS

• Feeling like the world is not real
• Thinking self is not real
• Thinking body takes up more or less space than it actually does
• Sense of levitating
• Thinking body parts are smaller or larger than they really are
• Thinking whole body is larger or smaller than it really is
• Sensation that body is split into two equal halves

It’s easy to see why AIWS can be disturbing and disorienting. It changes the subjective experience of reality for the people who experience the symptoms. It’s important to understand that for most people, these symptoms don’t last long. In most cases, they last minutes. In some cases, they last hours. And in very rare cases, they may last several days, or persist and recur for an indeterminate length of time.

Treatment for AIWS: Address the Root Cause

There is no specific treatment for AIWS. In most cases, the treatment for AIWS is the treatment for the underlying condition associated with symptom onset. Some cases of AIWS are short-lived, transitory, and can resolve on their own without intervention. However, when the symptoms cause significant disruption or distress, receiving evidence-base treatment for the underlying condition can resolve the symptoms.

Here’s how the authors of the publication “Alice in Wonderland Syndrome: A Systematic Review” understand the role of treatment for AIWS:

“Most nonclinical and clinical cases of AIWS are considered benign, in the sense that full remission of the symptoms can often be obtained, sometimes spontaneously. Whenever treatment is considered useful and necessary, it needs to be aimed at the suspected underlying condition. In clinical practice this mostly involves the prescription of antiepileptics, migraine prophylaxes, antiviral agents, or antibiotics.”

Knowledge about AIWS is scarce, compared to other medical and mental health disorders. That’s because there are only a few hundred cases addressed and documented in scientific literature. With advances in brain imaging technology, though, this may change. Our ability to see what’s happening inside the brain in real time, with functional MRI (fMRI) and other techniques, may expand our understanding of AIWS, and result in two important positive developments:

1. The designation of AIWS as a disorder in both the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Diseases (ICD), and the identification of specific diagnostic criteria.
2. The development of AIWS-specific treatments, based on diagnostic criteria established in the DSM and ICD, if and when that occurs.

Currently, experts indicate the best treatment for AIWS involves patient awareness of the syndrome itself, and standard best-practice treatment of the associated or underlying pathology associated with the symptoms.

When more information on AIWS becomes available, we’ll report it here.