Do you ever sit down to watch TV, but the TV starts to move away from you and appear smaller than normal? Or do you look down at your hands to see that one is super tiny and the other is massive? The objects around you increase and decrease in size, move up and down, and the voices of people who aren't in the room start to speak to you. Sometimes, the world around you starts to speed up or slow down and freeze in time. If these kinds of crazy kinesthetic hallucinations are happening to you, you may have a rare brain condition called Alice in Wonderland Syndrome (AIWS).
What is AIWS? AIWS is a rare brain condition that distorts a patient's perception of their body and the world around them. The size, mass, shape, and position in the space of their body and objects around them tend to vary, causing confusion, depersonalization, and derealization. Some patients even felt like their bodies were vertically split in half, and each half of the body existed independently. AIWS can also be classified as a proprioception disorder resulting from your body’s weakened ability to sense muscle movement, action, and location. Because of AIWS’s rarity, very little research has been done on this out-of-body experience, so little is known about its causes, patterns, and preventative methods. Although these hallucinations are scary and can be obstructive, they are not detrimental to the patient in any way. Generally, when one experiences an episode of hallucinations it will wear off within 15 to 20 minutes and the world will appear to go back to normal once again. The characteristics of this condition inspired the name “Alice in Wonderland Syndrome” because of the hallucinations that Alice experiences in the book and movie. Her body shrinks to 10 inches, then grows abnormally tall without growing wide, and she experiences the objects around her shifting in shape and form. All these sensory and tactile changes mimic what happens to patients experiencing AIWS.
There’s a lack of research on this condition because underlying causes are temporary and the episodes of AIWS occur randomly and for short periods. There are no official criteria for this condition and because of this, there is little flexibility in when and what can be studied about this syndrome. This leads experts to believe that AIWS is commonly underdiagnosed and probably even misdiagnosed. It is thought that people with frequent migraines, temporal lobe epilepsy, brain tumors, head trauma, bacterial/ viral infections, and Epstein-Barr Virus (Herpes) are more susceptible to AIWS. Additionally, mental health conditions like schizophrenia and dissociative identity disorder may trigger AIWS. Fewer than 200 cases, that have been reported since 2016, were serious enough to require medical attention, but it remains a medical mystery.
The symptoms and patterns of getting AIWS are very different for children, adults, males, females, etc. The various forms of AIWS hallucinations are either visual, somesthetic (distorted auditory or tactile perceptions- can be a pain or temperature sensation) or a mix of visual and somesthetic. Regardless of the type of AIWS that a person may have, the episodes of hallucinations generally occur at night, but the frequency of these episodes are less predictable. AIWS patients may experience hallucinations as rarely as once a month or as often as 3-4 times a day.
Despite the type of hallucination that a patient is experiencing, it is almost always accompanied by one of the following visual perception disorders: micropsia (objects are perceived smaller than they are), macropsia (objects are perceived bigger than they are), telopsia (objects appear further away than they are), or pelopsia (objects appear nearer than they are). In a cross-sectional study of 1,480 adolescents, 5.6% of males and 6.2% of females were found to have a lifetime prevalence of micropsia and/or macropsia, which are indicators of AIWS.
Because of these abnormal hallucinations, people with AIWS tend to lose track of time because the world around them is moving at a slower-than-normal pace. This condition is generally found in children and teenagers, but adults can have it as well. A study conducted with adult patients experiencing migraines indicated a prevalence rate for AIWS of around 15%. In this group, however, the individual symptoms of AIWS were found to be much more common.
Many interesting case studies highlight the dilemmas that patients with AIWS experience during their episodes, something that may be hard for a person without the condition to imagine. For example, a 23-year-old woman described her episodes as “major attacks that lasted for weeks and required hospitalization.” She experienced sensations like her head growing to a “tremendous proportion” and floating into the sky like a balloon. She mentioned that although the sensations would pass after the migraine was gone, she still felt abnormally tall when she would walk down the street.
Another case is of a 38-year-old woman whose hallucinations made her feel very tiny, giving her a feeling of “being very close to the ground” as she walked. She felt as though she was short and wide, almost as if she was looking at herself in a distorted carnival mirror. Because she lived on the top of a hill, she felt the hill was very far away because of how tiny she thought she was. She never needed hospitalization, but her mental disorder was something that obstructed her everyday activity.
Finally, a 38-year-old woman, whose headaches began during her second pregnancy at the age of 19, experiences attacks of “one-sided headache and vomiting” and acts like she is drunk after the attack. Along with these attacks, she feels a sensation of her neck extending out on one side. She claims that it is very rare for her to have an attack where she feels small (around one foot high). However, when she does, she looks in the mirror and sees that she is of normal height. She has also not sought medical attention for her attacks.
There are no preventative methods that will target AIWS directly, but those who have it are given medication that will subdue the underlying causes, mainly for the migraines. The idea for medicating a condition as rare as AIWS is to treat the underlying causes to hopefully get rid of the main problem. One reason that this condition is so rare is because not many people have the disorder and it is not deadly, which is good. However, it remains one of the most fascinating disorders known to medicine. As interest in exploring neurology- specifically brain networking and neuro-imagination- is heightened, more light will be shed on this syndrome and more definitive causes and preventative methods will be found for the few patients suffering from the Alice in Wonderland Syndrome.
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