Have you ever gone to bed, perhaps feeling a little under the weather, and, just as you start to fall asleep, had the sensation that you were growing taller, or shrinking? Or that your body was floating away, or sinking down into your bed? If so, you have experienced a mild 'Alice in Wonderland' symptom.
What are the Symptoms?
Alice in Wonderland Syndrome (AIWS) is a neurological condition associated with migraine. The symptoms are the result of cells in the brain firing inappropriately, giving rise to unusual perceptions and experiences. It can occur with, or without painful headache or abdominal symptoms. Many people who experience AIWS are not aware of having migraine at all. They may experience symptoms daily – sometimes several times a day – or less frequently.
People experiencing episodes of AIWS report:
- Visual distortions. Things seem to be bigger or smaller than usual, or to be closer, or further away.
- Distortions of time. Events speed up or slow down.
- Distortions of their own bodies. They feel their head is growing, or they feel their body has shrunk or elongated.
- Balance problems. They may feel that they are standing at an angle, or that they are spinning. This can result in nausea.
- Auditory distortions. Sounds seem loud. Voices sound aggressive or tremulous, or to be coming from a long way away.
- Specific tastes or smells.
- Distortions in perception of texture. Bedclothes may feel like stone. The floor may feel spongy.
- Emotional experiences. They may feel inexplicably frightened, or that someone is watching them.
Other symptoms are very complex, and less common. They may involve hallucinations of solid objects or visits to unknown places, hearing voices, feelings of unreality, hearing long passages of music or experiencing the presence of a visible or invisible 'alter ego'.
Small wonder, then, that most people who experience these symptoms are afraid to mention them, for fear of being labelled mentally ill!
Who First Described It?
Alice in Wonderland Syndrome was first described by John Todd in 1955. Sometimes it is referred to as 'Todd's Syndrome', not to be confused with 'Todd's paralysis' which is a partial paralysis following an epileptic seizure, and entirely unrelated to AIWS. Todd was a psychiatrist working in Yorkshire. He interviewed several patients with bizarre symptoms, none of whom had other conditions that cause similar symptoms – brain tumours, alcoholism or drug abuse, for example. None were mentally ill, in that they did not confuse the hallucinations with reality, and were able to think clearly and rationally. All had a family history of migraine. He concluded that these people were experiencing a migraine or epileptic 'aura'. Currently, AIWS has been associated with migraine, rather than with epilepsy.
Todd named his syndrome after Lewis Carroll's 'Alice in Wonderland', (1865) because of the similarity between some of the common AIWS symptoms and a part of Alice's story. Alice drinks a mysterious liquid labelled with the words 'Drink me' and shrinks until she is small enough to fit through a tiny door and enter a very small room. She then eats a cake, labelled 'Eat me' and grows so tall her head hits the ceiling. This 'body dysmorphia' is one of the most common symptoms of AIWS. People experiencing AIWS feel that parts of their bodies are elongating, shrinking or even disappearing into the floor. Carroll suffered from migraine, and it has been speculated that his stories arose from strange experiences he had during his migraine auras.
What is its Effect?
AIWS seems to affect children and younger adults, and often disappears or at least becomes less intrusive in mature adults. It seems to be at its worst in the teens and early twenties. Doctors report that women seem more affected than men, but acknowledge that this may be because women visit their doctor for advice more readily than men do.
How much AIWS affects a person's life depends on severity and frequency of symptoms; some people have only a few episodes in their lives, or experience episodes only at night, whilst others may have episodes which occur several times a day, every day. People with mild and infrequent symptoms can get on with their lives with little difficulty, apart from a mild curiosity about the odd experiences they sometimes have! People with more severe symptoms may be unable to drive or operate machinery, due to visual distortion and hallucinations, leading to difficulties in employment. Children affected in school may find it hard to concentrate, and noisy classrooms and playgrounds may over-stimulate them. Children or adults with severe, undiagnosed symptoms may feel anxious, experience panic attacks and suffer from low self esteem. In addition, the burden of their secret 'madness' may isolate them socially. Of course, some AIWS people have a double whammy, and experience the violent headaches and/or nausea and stomach cramps of migraine too.
Although AIWS was first described over fifty years ago, the condition is still not widely known, even to doctors. Part of the problem is a lack of reporting. The symptoms appear so much like the symptoms of better-known mental illnesses such as schizophrenia and drug-related psychosis that adults are reluctant to go to their doctors for fear of being told that they are 'going crazy'. Symptoms are hard to describe, and children who experience the first onset of AIWS lack the vocabulary to explain what is happening to them. Oddly, children who experience AIWS hallucinations often don't feel as frightened by them as one might expect, and may not mention them to adults.
AIWS has been found to respond in some cases to various anti-epilepsy and anti-migraine treatments, and also to beta blockers. However, specific drug therapy has not yet been identified. AIWS and migraine are both stress related, so management of the condition is based on management of stress, and the learning of self-help techniques. Often people with AIWS find out for themselves what works for them. When experiencing symptoms, they may want to find a quiet, safe place where they can be alone and calm themselves. Headphones may help to block out sounds which have become too loud. Darkness may make the symptoms worse, but the person may want to cover their head or eyes. Voices may sound aggressive and distress the person, so whispering or silence may be helpful. Living a healthy lifestyle, avoiding tiredness, dehydration and stress may help to reduce symptoms.
An occupational therapist may be able to work with a person with AIWS to find ways to adapt the school or work environment to their needs – but they would need a crash course in AIWS first! Most medical and paramedical professionals have never come across it before. Teachers and employers, equally, have no knowledge of the condition, and need briefing in order to be able to accommodate someone experiencing symptoms. Legally, schools and employers must make provision for people with disabilities – but AIWS isn't a widely recognised disability, so you are relying on their goodwill.
Neurologists speculate that AIWS is far more common than we realise. They guess that most people with mild to moderate symptoms don't talk about them, and find ways to manage them without assistance. Only when symptoms interfere with school, work or relationships do the people experiencing them, or their parents, approach doctors for advice.
Someone you know may have AIWS. You may have AIWS. If you have read this article and thought 'That sounds like me' or 'I remember having something like that when I was a child' or 'Maybe that's what my daughter means when she says that she has "big-small" dreams', stand up and be counted! Not enough is known about this condition, and undiagnosed symptoms may be blighting many lives unnecessarily. Go to your GP and get a diagnosis, and if your diagnosis is AIWS, get in touch with others via the AIWS Group.
Anything you can share about your experiences, coping strategies or life story might help other people with AIWS. We are our own research project.
References and Links
Many thanks to Rik Hemsley for technical information, inspiration and support.