Curiouser and Curiouser Found in Alice in Wonderland Syndrome

A bizarre syndrome that exists in some children and individuals with specific injuries has been noted in clinical practice without mention in psychiatric guidebooks, such as the DSM-5-TR or the ICD–11.

All recognized psychiatric or neurologic syndromes are cataloged in both of these publications, yet there is no inclusion for that syndrome (although others may also exist without mention) that is extremely disturbing to anyone experiencing it: Alice in Wonderland syndrome.

As in Lewis Carroll’s well-known book Alice’s Adventures in Wonderland, the world becomes warped during bouts of the syndrome. Time can go faster or slower, colors lighten or darken, and bodies change shape.

One young patient described an incident: Her legs would grow to meet the distant wall, which seemed to go on forever; eventually, she would reach out and touch the door with her little toe. She appeared floating in the corner the whole time, staring at her warped figure.

Besides these symptoms, depersonalization or derealization is a common symptom that accompanies them. Causes of these distortions include migraines, epilepsy, brain injuries, medications, and infections; their duration can range from minutes to days.

Although the actual diagnosis is unusual (less than 200 documented clinical instances have been noted since 1955, mainly affecting youngsters), symptoms similar to Alice’s seem relatively common. A 1999 survey indicated that 30% of people had encountered some form of visual distortion at some point. Additionally, a recent study found that approximately 16% of migraine sufferers also experienced Alice in Wonderland syndrome symptoms on and off throughout their lives.

Dots appear continuously and relentlessly across the whole visual field in people with visual snow syndrome, much like an analog TV with the programming all wrong. Childhood symptoms are seen in 40% of instances. For fear of being stigmatized as having a mental illness, people with AIWS, particularly children, are hesitant to discuss their symptoms. Hence, it is possible that this disruption is undervalued. Although there are various theories regarding their origin, the visual symptoms of migraine remain a pathophysiologic mystery, despite their prevalence.

Migraine Sufferers

Of 808 migraine patients, 133 individuals (16.5%, mean age 44.4 ± 13.3 years, 87% women) reported AIWS symptoms throughout their lives. Telopsia (72.9%) was one of the most frequent, followed by micro- and/or macrosomatognosia (49.6%), and macro- and/or pelopsia (38.3%), lasting on average half an hour. AIWS symptoms occurred in association with headache in 65.1% of individuals, and 53.7% had their first AIWS episode at the age of 18 years or earlier. Migraine patients with aura were more likely to report AIWS symptoms than those without aura.

Predominance of the female sex begins during puberty, and the number of children and adolescents affected by pediatric migraine rises with age from 7.7 to 17.8 percent. In about 1.6% of children who suffer from migraines, there is a predominance of brief neurological symptoms called aura. Aura is primarily manifested visually in 63% of cases.

The visual aura has been extensively studied in both children and adults, and its manifestations can be rather diverse. The studies, however, have not come to a definitive set of criteria that could be included in the textbook outlining psychiatric or neurological disorders.

Why has the healthcare, specifically those in neurology or psychiatry, paid little attention to this syndrome? The fact that AIWS is typically only transient is one reason why there is a dearth of research on the topic. The impact of AIWS is temporary because the underlying causes are often transient as well.

The precise diagnostic criteria and symptoms of the illness are also a matter of debate among experts. Healthcare providers typically rely on their professional judgment when deciding to diagnose AIWS, as there are no currently approved criteria. Experts feel that this illness is frequently under- or overdiagnosed due to all these reasons.

So, how do we diagnose a syndrome for which there are no specific criteria? It appears to be a matter of individual discretion, and therein lies the problem. If too few patients who truly do have this syndrome are being underdiagnosed, then they are being under-treated.

There should be a mandate within medicine to do more regarding the syndrome to provide effective treatments for patients with it. Failing to do this is a failure for patients in need. Is no one providing funding for this research? Of course, according to current statistics, which appeared to be flawed because of the fluctuating criteria by individuals, it would appear to be a rare syndrome.

Proceeding with such flimsy statistics is unprofessional and must be addressed. The Dark Ages weren’t limited to the Middle Ages, apparently.

Learn how Lewis Carroll wrote Alice in Wonderland with this video. There is some speculation that Carol may either have been suffering migraines of his own or may have been under the influence of drugs when he wrote some of his stories.