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Alice in Wonderland syndrome, often referred to as AIWS, is a rare neurological disorder affecting perception. It causes distortions in the visual and sensory perceptions of the body and the surrounding environment. However, due to being so rare (and also because of a lack of reporting/recognition), there are limited statistics on this condition.
A 2003 UK study published in the Journal of Neurology, Neurosurgery and Psychiatry analysed 47 patients with AIWS. The study showed that the mean age of onset was 18 and that it was a condition that was more common in males compared to females (3:2). It also reported that 45% of those diagnosed with AIWS experienced migraines.
A different study published in 2011, this time on children, found that it was more common in boys (2:1 in this case) and that the mean age of onset was 7.8 years. Like the previous study, migraines were a common association, with 83% of patients experiencing them.
However, it should be acknowledged that both of these studies were conducted on small samples and, as such, might not accurately represent the overall prevalence of AIWS in the UK. Also, since this is a rare and poorly understood condition, it’s possible there are many undiagnosed cases.
What is Alice in Wonderland syndrome?
This rare neurological condition affects a person’s perception of themselves and the world around them. It causes them to experience distortions in how they perceive their own body size, visual images and their environment. AIWS is also known as Todd’s syndrome due to Dr John Todd who first described it in 1955.
The range of perceptual distortions with AIWS include objects appearing smaller, bigger, closer, further away or distorted in another way. The distortions associated with the condition can also include distortions of your perception of space, time and even body image. For instance, people with a diagnosis of AIWS might perceive parts of their body to be smaller or larger than they are. Or they might feel as though their body changes size or shape.
What causes Alice in Wonderland syndrome?
The exact cause of AIWS isn’t fully understood or known but there are beliefs that is it due to certain parts of the brain (the ones that process sensory information) functioning abnormally.
There are theories suggesting that it is caused by:
- Migraines: Since a lot of people with AIWS have migraines, people believe that it could be caused by changes in electrical activity in the brain or changes in blood flow that occurs during a migraine attack.
- Viral infections: Some instances of AIWS have been linked to a viral infection, particularly the Epstein-Barr virus which can cause inflammation in the brain.
- Epilepsy: Some patients with epilepsy have also reported AIWS. This could be down to the abnormal electrical activity in the brain.
- Brain tumours: Sometimes (though rarely), a brain tumour or other structural abnormality of the brain can cause AIWS.
- Psychiatric disorders: Sometimes, AIWS can be linked to a psychiatric disorder like schizophrenia or even severe depression and anxiety.
Though some cases of AIWS have been reported in families, researchers believe that this is down to shared environmental factors or coincidence rather than genetics. There is no evidence that suggests AIWS is genetic.
How rare is Alice in Wonderland syndrome?
AIWS is considered to be a rare condition and its exact prevalence is not known. Because it is uncommon and likely under-reported, it’s difficult to know how many people suffer from this condition.
More often than not, AIWS is associated with migraines, and estimates suggest that up to 1 in 10 people who have migraines also experience symptoms of AIWS. That said, this doesn’t affect the overall prevalence of the condition generally. It’s important to remember that this condition can occur in people who don’t suffer from migraines.
Who is at risk of Alice in Wonderland syndrome?
AIWS can occur in individuals of all ages. However, it’s most commonly diagnosed in children and young adults. As mentioned previously, there are slightly more males affected than females but the reasons for this aren’t understood.
As AIWS is often associated with migraines, individuals who experience migraines have a higher risk of developing AIWS. The same can be said for individuals with epilepsy or brain tumours.
What are the symptoms of Alice in Wonderland syndrome?
There are numerous different symptoms of perceptual disturbances with AIWS.
Symptoms can vary from person to person, but these are the most common symptoms:
Distorted perception of size and distance
Individuals might see objects smaller or larger than they are. They might also have difficulties with the perception of distances between different objects.
Examples of this distortion are:
1. Micropsia: This is when objects appear to be smaller than they really are. For example, an individual might see a person’s face or a book as much smaller.
2. Macropsia: This is the opposite of micropsia and describes the perception of an object being much bigger than it really is. For example, a person might perceive a tree or a car to be much larger than normal.
3. Teleopsia: With teleopsia, objects appear to be much further away than they are in reality. For instance, a person might see someone as being further away from them.
4. Pelopsia: This is the opposite of teleopsia, with objects appearing to be closer than they really are. For example, someone might think a person is standing really close to them when they’re quite far away.
All of these types of perceptual distortions can be very disorienting and can cause confusion and anxiety.
Distorted perception of time
Individuals might feel as though time is moving more quickly or slowly than usual. Also, individuals might feel like the duration of an event was shorter or longer than it really was.
Other possible perception problems include time feeling like it has stopped altogether and the individual feeling stuck in a moment. Finally, someone could experience time looping, which feels like they are reliving the same moment over and over again.
Distorted perception of the body
This symptom can feel like parts of the person’s body are smaller or larger than normal. It can also involve perceived changes in the position or shape of the body.
Examples of this include:
1. Lilliputian hallucinations: This is the name for when a person feels as though their body parts or entire body has shrunk. For example, they could feel as though they have smaller hands than they do.
2. Gulliver’s syndrome: This is the opposite of Lilliputian hallucinations in that the person feels as though they have enlarged body parts. For instance, they might think they have extremely large feet.
3. Distortions with regards to body image: This is when a person thinks their body size, shape or position has changed. They might feel as though their body has been compressed or elongated, for instance.
4. Depersonalisation: This is when an individual feels detached from themselves or their body. They might, for example, feel as though they are watching themselves from the outside.
Distorted perception of the environment
This can involve perceived changes in the brightness of a place or it can mean the place feels like it’s moving.
Though vertigo isn’t a typical symptom of AIWS, some people do experience vertigo-like symptoms such as dizziness or a sensation of tilting or spinning, which is similar to vertigo.
Other perceptual disturbances
Some individuals with AIWS experience other perceptual disturbances like changes to the perceived sound of things (like their own voice) or perceiving a difference in textures of things.
Specific examples include:
- Visual disturbances – Seeing colours more vividly or seeing trails. This might be similar to the visual disturbances seen when taking psychedelic drugs.
- Auditory disturbances – Hearing sounds more loudly or experiencing auditory hallucinations. This can be similar to tinnitus or the effects of some drugs.
- Synaesthesia – This happens when the different senses become intertwined. It causes a person to experience sensory input in a way that isn’t typical. For example, people may perceive things differently as having different colours or having tastes associated with them.
- Emotional disturbances – This means that people have heightened emotions. They could feel overly angry which is not normal for a certain situation, or they might feel an atypical emotion for a specific situation.
What are the effects of Alice in Wonderland syndrome?
Perceptual distortions and disturbances can be extremely disorienting and can cause confusion and anxiety. Just like symptoms will vary from person to person, so will the effects the condition has on a person.
Some people can feel really disorientated to such an extent that they find it hard to navigate their environment and complete usual tasks like housework or other aspects of day-to-day life.
Anxiety is quite common in individuals with AIWS as the distortions can make them feel frightened or distressed. Also, social isolation is frequent as people are worried about experiencing symptoms or feel embarrassed about their condition. This social isolation can also be worsened by the fact that many people with perceptual disturbances are unable to drive.
All in all, AIWS symptoms can interfere negatively with a person’s life to the extent that their quality of life is reduced. The condition can interfere with their ability to study, work, and pursue their interests and hobbies.
Risk factors of Alice in Wonderland syndrome
Though the risk factors of AIWS aren’t well understood, there are certain things that have been associated with an increased likelihood of developing the condition or of experiencing more severe symptoms.
- Having migraines – People with a history of migraines are more likely to experience AIWS.
- Autoimmune or infectious conditions – Some AIWS cases have been linked to diseases like lupus, Lyme disease or the Epstein-Barr virus.
- Using drugs – Drugs like LSD or magic mushrooms can cause symptoms that are similar to AIWS.
- Sleep deprivation – A lack of sleep or disrupted sleep patterns have been known to instigate a case of AIWS.
- Mental health conditions – AIWS has been reported in people with anxiety and depression.
How is Alice in Wonderland syndrome diagnosed?
AIWS is usually diagnosed after a combination of tests. These include physical examinations, taking a medical history and conducting some neurological tests.
Here are the steps that are often taken when AIWS is diagnosed:
1. There will be a physical examination to check if there are any obvious physical features that could be causing the symptoms.
2. A medical history is taken. The doctor will ask questions about the symptoms. This will include when they started, how long they last and whether there are other symptoms too.
3. Neurological tests will be conducted. If a doctor believes it appropriate to do so, neurological tests will be carried out to assess the person’s sensory function, cognitive function, memory, reflexes and coordination.
4. Imaging might be conducted. For some people, imaging tests may be ordered to rule out other conditions (like brain tumours, for instance). This could be an MRI or a CT scan.
5. A psychiatric evaluation might be carried out. If the doctor is worried about psychological issues, they might recommend a psychiatric evaluation.
Can Alice in Wonderland syndrome be treated?
There is no specific cure for AIWS. This is down to it being a rare neurological condition with no known underlying cause. That said, there is a range of treatment options available for individuals with the condition. Rather than curing AIWS, these treatments help people to cope better with their symptoms.
Treatment options include:
- Addressing any underlying condition if there is one: This might be a migraine or an infection.
- Medication: Sometimes, medication like anti-migraine drugs, antidepressants or anticonvulsants can help alleviate AIWS symptoms.
- Cognitive Behavioural Therapy: CBT can be useful in helping to manage any anxiety or psychological symptoms associated with the condition.
- Good sleep hygiene: Having a regular sleep schedule and sleeping well can alleviate symptoms.
- Avoiding anything that triggers symptoms: If a patient has something that tends to trigger their symptoms, e.g. a certain medication, then they should avoid it.
Final thoughts on Alice in Wonderland syndrome
In summary, Alice in Wonderland Syndrome (AIWS) is a rare neurological condition that can cause perceptual disturbances, including altered perceptions of size, distance, time and the body. The condition is most commonly associated with migraines and other underlying medical conditions but it can also be induced by drugs, or by infections.
Though no known cure for AIWS exists, there are options for treating the symptoms. Firstly, it’s always best to address any underlying condition that is causing the condition or making it worse (e.g. an infection).
Other treatments for symptoms include therapy, good sleep hygiene and CBT. It’s also vital to avoid any known triggers. While AIWS can be distressing, the condition is typically benign and most people who experience it recover with no long-term consequences.