“‘What a curious feeling!” said Alice.’”I must be shutting up like a telescope.’
And so it was indeed: she was now only ten inches high, and her face brightened up at the thought that she was now the right size for going through the little door into that lovely garden. First, however, she waited for a few minutes to see if she was going to shrink any further: she felt a little nervous about this; ‘for it might end, you know,’ said Alice to herself, ‘in my going out altogether, like a candle. I wonder what I should be like then?’”
While bordering on the bizarre, for many Migraine Warriors, Alice’s distorted experiences are oddly familiar. And why not? Lewis Carroll, the author of Alice’s Adventures in Wonderland and Through the Looking Glass experienced Migraine attacks himself. When he wrote about his own strange Migraine symptoms, he put into words the strange sensations that many others with Migraine feel.
Art, science, and medicine come together to universally describe a medical condition known as Alice in Wonderland Syndrome (AIWS).
How to Know if You Have Alice in Wonderland Syndrome
The principal chracteristic of Alice in Wonderland syndrome is a distorted perception of body image. Just as when Alice grew larger and shrunk during her journey into Wonderland, patients experiencing AIWS are fully awake and aware while under the impression that different body parts are changing.
These transient episodes of visual hallucinations and distorted perception appear during the aura stage before a Migraine attack or, occasionally, after a Migraine episode. Each episode can last seconds to minutes. Symptoms of AIWS include a number of changes, along with a feeling of depersonalization, that affect(1):
AIWS episodes may start and end several times during the day. Understandably the surreal sensory-perceptive episode often generates anxiety in people with Migraine (2). We can feel not in control of normal senses that, like the White Rabbit, are decidedly not behaving normally. Someone experiencing AIWS wonders what perceptions can be trusted, and which distortions are – well – distorted.
Other Visual Disturbances of Migraine
The visual hallucinations characteristic to AIWS usually precede a Migraine attack by 20 to 60 minutes. While Alice in Wonderland Syndrome the most dramatic, it is not the most common Migraine warning symptom. Blurred vision and sensitivity to light are the visual changes seen most often by people with Migraine.
According to the National Headache Foundation, forms of visual Migraine symptoms include:
Prevent Migraine to Prevent AIWS
Studies show the average age for the onset of visual alterations is around eight-and-a-half years old, while Migraine episodes begin closer to nine-and-a-half years old (3). Those who experience AIWS frequently identified various triggers such as aspartame, smoked meats, stress, or skipping a meal.
For those with AIWS, the disconcerting symptoms that resemble the distortions Alice experienced after tumbling down the rabbit hole can be lessened. Adopt healthy habits that help minimize Migraine attacks, like:
If you experience Alice in Wonderland Syndrome, it is wise to get checked by your medical team. Occasionally blurred vision and difficulty with focusing can be caused by medications such as the tricyclic antidepressants. Changing medications can remedy the problem.
In rare instances, epilepsy, drug intoxication, psychiatric diseases, infections, or brain tumors can show up as AIWS.
“Even if a patient has a long-standing history of headaches, if there’s something new about a headache or something that has never occurred with this headache, it always warrants a very thorough evaluation,” said Dr. Sylvia Kurz, a neuro-oncologist at the Brain Tumor Center, Perlmutter Cancer Center at New York University’s Langone Medical Center. “And the most detailed evaluation of the brain from an imaging perspective is really a brain MRI scan (4).”
“I must be growing small again.’ She (Alice) got up and went to the table to measure herself by it, and found that, as nearly as she could guess, she was now about two feet high, and was going on shrinking rapidly,” wrote Carroll.
For those who experience Alice in Wonderland syndrome, the Adventures of Alice in Wonderland is more than a childhood story. On those breakout days when a Migraine attack threatens and you feel as if you are growing and shrinking, know you are not alone. Others have felt and seen such distortions. Lewis Carroll described an aspect of Migraine in a way that helps everyone understand the impact of this syndrome.
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