What is Alice in Wonderland Syndrome?

We know you’ve heard of Alice in Wonderland, but did you know there is a condition named after her? Alice in Wonderland Syndrome (AIWS) is a rare condition that affects the brain and nervous system. People with AIWS experience brief episodes that change the way they see, hear, touch and sense objects.

In the story, written by Lewis Carroll, Alice sees her body growing both larger and smaller, so she inspired the name of the syndrome. The symptoms of AIWS were first described by Dr. John Todd in 1952 and are also called Todd's syndrome.

Overall, AIWS is thought to occur in 10 to 20% of the population. The syndrome is most likely to appear in children, but it can also affect adults. Many people say they had AIWS symptoms as a child, but “grew out” of them around their teenage years. AIWS is rare, so don't worry if you don't know much about it, we've answered some of the biggest questions below. 

How does Alice in Wonderland syndrome differ from other types of epilepsy?

The symptoms of AIWS can vary in different people. The most common symptoms include:

  • Objects appear too small (micropsia) or too big (macropsia)
  • Objects appear too close or too far away
  • Distorted body image
  • Altered perception of time
  • Loss of limb control.

A typical episode lasts a few seconds or minutes, but they can last up to half an hour. A person can experience many episodes a day, for many days in a row. Then, they may not have other AIWS symptoms for several weeks or months.

Although the episodes can happen at any time of day, they most commonly occur at night.

What causes Alice in Wonderland syndrome?

The exact causes of AIWS are still not known, but possible sources include:

  • Migraines: Although AIWS symptoms usually occur without a headache, the person affected often has a personal or family history of migraines
  • Temporal lobe epilepsy: Focal seizures that start in the temporal lobe of the brain, and last around 2 minutes
  • Epstein-Barr virus: A common childhood infection, also called “glandular fever” or “mono”.

Doctors are trying to identify other possible causes of AIWS. These include strokes, head trauma, infections, drugs and stress. Doctors do know that this syndrome is NOT a problem with your eyes, a hallucination, or a mental illness.

How can Alice in Wonderland Syndrome be diagnosed?

Alice in Wonderland syndrome can be difficult to diagnose. There is no single, standard test available, so when a person has AIWS symptoms, various tests can be used to investigate the possible causes, including:

  • Electroencephalogram (EEG): Can detect changes in brain activity and can be used to diagnose epilepsy and other seizure disorders
  • Magnetic resonance imaging scans (MRIs): Can help diagnose conditions such as tumour, infection, swelling or damage caused by an injury or stroke
  • Studying a patient’s medical history and carrying out a physical exam: Can help identify migraine as a possible cause.

The incidence of AIWS is likely to be underdiagnosed. Since AIWS episodes can occur very quickly, many young children with the condition don’t recognise them or report them. Also, some adults may not want to discuss their symptoms with their doctors.

a drawing of alice in wonderland character
An interpretation of Alice in Wonderland syndrome by our Young Rep, Annie

What are the effects of Alice in Wonderland syndrome?

The good news is that although the symptoms of AIWS can be confusing for the person affected, they are not harmful. After having these episodes, some people are more likely to develop migraines.

 

A personal account from our Head Nurse at Young Epilepsy, Lisa, describes meeting a young woman with AIWS: 

I have worked with a young lady with the condition, she had a late diagnosis and was studying to be a landscape gardener when I worked with her. Her seizures were characterised by her feeling like she was on a roller coaster and falling down a hole- like in the book. She would see things around her change in size and shape. Her episodes would last for many days and they were quite disabling for her, she would struggle to do anything as the seizures were so obtrusive. Over time working with her closely we were able to manipulate her medication regime around her seizures which greatly improved the impact her seizures had on her and she was able to complete her studies and is now a practicing landscape gardener with her own business. She still has episodes but they are much better managed now.

Does it affect life expectancy?

Alice in Wonderland syndrome is not expected to affect a person’s life expectancy. In fact, children with AIWS are likely to experience fewer symptoms over time. The good news is that their seizures may disappear as they become teenagers.

Are there treatments available and is there a cure?

The type of treatment for AIWS will depend on the cause of the syndrome. So these treatments will vary in different people. For example:

  • If migraine is causing the symptoms, doctors may suggest managing this with diet and preventive medicines
  • If epilepsy is causing the symptoms, doctors may prescribe anti-seizure medicines
  • If an infection is responsible, doctors may offer antiviral medicines.

If you have AIWS or if you’re caring for someone with AIWS, your medical team and other professionals will help you to find the best treatment, social, management and educational plan to achieve a good quality of life. Although Alice in Wonderland syndrome is a rare condition, you are not alone. Find others to chat to on The Hub or reach out to us here if you need someone to talk to.

alice in wonderland drawing
Our Young Rep Jasmine has painted her interpretation of the syndrome

You might also be interested in