Written by Laura Davies
In 2019, a paper was published about a 56-year-old man who could feel a full-sized unicorn horn growing out of his forehead. Rather than being sectioned and prescribed some pretty strong antipsychotics, he underwent a brain scan which showed reduced blood flow in his visual primary cortex. He wasn’t suffering from psychosis, but from Alice in Wonderland Syndrome. A phenomenon where abnormalities in the brain cause a patient’s world or body to become distorted.
How the Syndrome got its Name
In the early 1900s, physicians began taking note of a strange symptom they couldn’t see themselves. One doctor reported epileptic patients perceiving objects to be twice their size. Another had a seizure sufferer who claimed, “Everything looks bigger,” and World War I and II soldiers with occipital lesions had been experiencing similar hallucinations.
In 1933, psychiatrist Stanley Coleman presented a similar case. But this time, instead of objects in the world becoming distorted, his schizophrenic patient was feeling her own body growing or shrinking.
In 1952, an American neurologist, Caro Lippman, began seeing the same thing in his migraine patients and published the first paper focused solely on the symptom, “Certain Hallucinations Peculiar to Migraine.” One particular patient who was experiencing “bilious headaches”, otherwise known as migraines, described her experience well: “I get all tired out from pulling my head down from the ceiling. I’ve been pulling it down all night long… On the second day of this attack, a bad one, my head fell into a deep hole under the head of the bed – it was a very deep hole.”
Each doctor had spotted that their patient was suffering from the anonymous condition, but no one actually bothered to name it. Not even after Stanley Coleman quoted his schizophrenia patient as feeling “like Alice in Wonderland.” I mean, come on, guys, it was right there on a plate.
Finally, in 1955, British Psychiatrist J. Todd sorted things out with his paper, “The Syndrome of Alice in Wonderland.” In it, he coined the term, not only for the patient in Coleman’s paper but also for the fact that he believed Lewis Carroll, the author of Alice in Wonderland, to have suffered from the condition himself.
That’s right, contrary to the popular belief that Carroll was off his head when he was writing about mysterious potions, hooka huffing caterpillars, and magic mushrooms, he was most likely sober. Aside from a few medicinal uses of Laudanum, Carroll’s diaries give no indication that he was a recreational drug user. Plus, LSD, the drug people claim provides a trip most similar to Alice’s journey down the rabbit hole, wouldn’t be invented for another 73 years.
What Carroll did mention in his diaries, however, were migraines. Some were so severe that he reported seeing moving fortifications, an optical illusion experienced by many Alice in Wonderland Syndrome (AIWS) sufferers. Plus, almost every single symptom of the syndrome was experienced by Alice in the book. She shrank, she grew, she felt like she was falling, time was distorted and she hallucinated a lot.
Symptoms of AIWS
The most famous symptom of AIWS is, of course, the feeling of growing or shrinking. Carroll told of Alice waving goodbye to her feet and growing to touch the ceiling. Todd’s 1955 paper referenced a 39-year-old woman who’d suddenly feel as if she’d grown to fill a room, a 40-year-old man who felt 8ft tall sometimes and 3ft high others, and a 24-year-old woman who’d feel her feet grow a yard long. But most cases aren’t this dramatic. Often sufferers, most of whom are children, simply describe a strange feeling of themselves shrinking or growing as they lay in bed, about the fall asleep. A sensation that’s gone by morning and has no impact on their day-to-day lives.
This is the point where a lot of you might go, “Wait! I had that as a kid!” and you’re probably right. The average age of onset is 6 years old, and most outgrow it by 20. It’s hugely underreported as children don’t tend to tell their parents, mostly because it’s so hard to describe, and then it just goes away on its own.
The size distortions don’t always have to be isolated to the sufferer’s body either. Patients can experience macropsia, where objects appear larger, and micropsia, where objects appear smaller instead. This can be disorientating if you’re trying to drive and the road shrinks, or terrifying, like in the case of one 19-year-old who frequently saw her cat grow to be the size of a tiger.
Sometimes micropsia can be experienced in a fun combo with hallucinations. This allows the patient to see swarms of tiny people or animals that aren’t really there. This sounds quite sweet, unless, of course, you’re the 63-year-old man in India who was frequently attacked by a horde of 200 finger-sized people. He sought help as he distressed his family when he yelled out in terror each time. If this sounds to you like something from Gulliver’s Travels, you’re not the first to have that thought. The phenomenon has actually been named Lilliputian hallucinations after the land of Lilliput where Gulliver was captured by the tiny inhabitants.
Distance can become incredibly distorted too, either with objects seeming further away, telopsia, or closer, pelopsia, than they really are. This can result in corridors looking incredibly long, your own feet appearing out of reach, or the walls closing in.
Depersonalisation or derealisation is another symptom often reported. This is a feeling of disconnect from the body, and patients often describe watching themselves from above or through a window. One of Todd’s first patients, a 24-year-old woman, would feel her head divide in two. One half, the half she felt contained her mind, would break off and float behind her right shoulder and watch the rest of herself.
Other common symptoms include time distortions, an inaccurate sense of velocity, and hearing disturbances that can cause a change in pitch or volume. Again, a bit weird if you’re in bed at night, but totally paralyzing if you’re trying to drive or cross a road.
Diagnosing AIWS
There are three categories of AIWS: Type A, B, and C.
Type A refers to symptoms that are purely somesthetic, which means related to bodily sensation. This is your classic, feeling as if you’re growing to fill the room or shrinking back into your pre-Covid jeans. Although it’s the most famous, as it’s a big theme in the books, it’s actually the least common type.
Type B involves the visual distortion of your surroundings. This is where objects grow, shrink, appear closer or further away or even, in the case of metamorphopsia, change shape. This is the most common type experienced by children.
Type C is most common in adults and is simply a combination of both types A and B. Sufferers of this one experience what must be an incredibly disconcerting distortion of both their bodies and their surroundings. Like getting high, donning a fat suit and trying to make it through a fun house.
Diagnosing the syndrome is extremely tricky as symptoms can be so varied and there are no established diagnostic criteria. AIWS isn’t a specific physiological condition that can be observed, it’s a change in the patient’s perception. Not only is this difficult to nail down in the first place, but it has the added complication that it’s also a symptom of a number of psychiatric conditions. Mistaking AIWS for psychosis could result in missing a brain bleed or infection, which could be fatal.
Causes of AIWS
In the books, Alice’s growth and shrinking were caused by her questionable decisions to consume anything with an “eat me” or “drink me” label. In reality, it’s just not that easy to figure out. Unless you consumed something with an “LSD” label on it, obviously. Then, mystery solved.
The problem is that the majority of episodes only last between 5 and 15 minutes. This is great if you experience the syndrome and want to get through a date without batting imaginary attackers away from your plate, but not so great if you’re a neurologist trying to figure out what’s causing your patient’s symptoms.
Luckily, there have been a few occasions where doctors have managed to trigger an event while the patient has been inside a scanner. One patient, 12-year-old Ana Ryseff, found that her Alice episodes only seemed to occur when she was concentrating hard on a page of piano music. Neurologists got her to concentrate on a black and white checkerboard in the scanning room in an attempt to replicate her trigger and managed to capture a whole image of her hallucinating brain. The results showed two areas of the brain lit up with abnormal blood flow. These were the parts that processed texture, size, and shape.
This was a great leap forward, but only proved what was already obvious to the neurologists, and anyone, really. Abnormal perception of size and shape was caused by abnormal activity in the part of the brain responsible for processing size and shape. Astonishing. Unfortunately for Alice sufferers, this means that anything that messes with the blood or electrical signals in your brain could be causing the issues, and that’s a long and sometimes incurable list.
By far, the most common condition on the list is migraines, which account for 27.1% of cases. Unfortunately, the causes of the migraines themselves are often unknown, and attacks are sometimes unavoidable.
Viruses are another common cause of the disorder. Viral encephalitis caused by Epstein Barr is the most common culprit, accounting for 15.7% of Wonderland cases. But, other viruses like the flu and Zika have triggered it too. One example is a teenager who was suffering from telopsia and couldn’t drink water as the glass kept moving too far from her mouth. After taking a history, doctors discovered she’d had a Zika virus infection and accompanying high fever just 10 days before.
Brain bleeds and lesions account for another 7.8% of attacks. For example, an 80-year-old woman in Sao Paolo recently visited her doctor after she became concerned that her son’s arm was growing and his hand was shrinking. Following a quick check of her son’s limbs and an MRI, doctors discovered she was suffering from a brain haemorrhage. Fortunately, once the bleeding resolved, her hallucinations disappeared.
Less common causes include medical drug side effects, recreational drugs, psychiatric disorders, epilepsy, and peripheral nervous system disease. However, a staggering 20% of patients have never found a reason for their Alice in Wonderland Syndrome.
How Common is AIWS?
Between 1955 and 2015, only 169 cases of AIWS were reported in the literature. This might indicate that it’s an extremely rare condition, and if you’re one of the childhood sufferers, you’re pretty special. However, it’s likely that the majority of cases go unreported. One study in Japan found that out of 3,224 adolescents, 6.5% of boys and 7.3% of girls had experienced either micro or macropsia at some point. However, even this could be an underrepresentation, with some doctors suggesting the real percentage might be as high as 30%.
The reason for the discrepancy is that people aren’t coming forward with their symptoms.
Brazilian neurologist, Dr. Fragaso, believes people in her area don’t report their experiences to doctors as they believe it to be a spiritual, rather than a medical issue. She suffered from the syndrome herself as a child. Her hands would appear to grow larger, and she’d attempt to hide them in her pockets despite being sure they wouldn’t fit. She never told an adult.
Children, those who are afraid of being labelled “crazy” and those who only experience minor symptoms, are also unlikely to report, for obvious reasons. It’s not like anyone who’s felt their room get a little larger or themselves get a little smaller for a few moments at night is going to be in a rush to book a doctor’s appointment.
Finally, most adults who experienced the phenomenon as a kid never even realised it was a thing with a name until they saw Hugh Laurie diagnose it in an episode of House. Or, you know, me, talking about it on Into the Shadows.
Treating AIWS
If you’re someone who experienced Alice in Wonderland Syndrome as a child and have already outgrown it, I’ve got good news. It’s extremely unlikely to have been anything sinister. Don’t go booking any brain scans in the hunt for an ancient aneurysm. Whatever triggered it has resolved itself.
If, however, you’ve had it since you were a child and it’s not gone away, I have less good news. There’s no treatment for AIWS. But, don’t panic. If you can treat the underlying cause, the distortions should subside on their own. So, AIWS triggered by a migraine can be treated by taking medication or following a migraine reduction diet, and antiepileptics, antivirals, or antibiotics will prevent attacks brought on by epilepsy, viruses, or infection.
Unfortunately, if you don’t know or can’t remove the root cause, there’s not much anyone can do. There’s not a huge amount of research into AIWS, or urgency in finding a cure for the condition, as doctors consider it fairly benign. This is a source of huge frustration for the people who live and struggle with it daily, as symptoms aren’t always minor.
One patient reports having to live with intense colour-based hallucinations, where her mother’s head will suddenly turn blue, or purple stripes will appear on her arms. Another patient, Rik Helmsley, describes his life as living through a fish eye lens. He struggles to correctly perceive the ground and therefore finds it hard to leave the house. Walking and crossing the road aren’t just difficult, they’re dangerous. He says until more work is done and a cure is found, he, and others like him, will be left trapped in their own Wonderlands.
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