My Experience With Alice in Wonderland Syndrome

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My Experience With Alice in Wonderland Syndrome

Photo Courtesy of Wikimedia Commons

Photo Courtesy of Wikimedia Commons

Photo Courtesy of Wikimedia Commons

Francis Klingenberg, Centurion Staff

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Imagine a world where every sound is a shout, small becomes big, big becomes small, smell flips, touch turns into grab, soft turns into hard, time shifts — and now you know what only a tiny percent of people experience daily.
Juliana Payson, an Austrian who works with the business development of Advanced Thermal Technologies, suffers the symptoms of Alice in Wonderland Syndrome (AIWS).
AIWS is a mental disorder that distorts one’s perception of reality, having an effect on sight, sound, touch, and time.
Ever since she was a 7-year-old child, she remembers hearing whispers as intense, sharp shouts. Something as soft as a heartbeat becomes louder than a bootleg firework.
“I can tell the location of pets in the house,” she said, “and people have their signature sounds.”
Payson described her AIWS’s effect on her sense of sound as a density map. She can tell where sound is the strongest.
She also has to decipher road signs that pass by her on the highway. “When I’m anxious, my subconscious bubbles up and road signs read like swear words,” she complained.
“They change shape, and I often double-take,” Payson continued. “Illuminated speed signs swap their numbers, so I am not sure if I read an 80, 60, or a 50.”
“I generally know not to go above 50, though,” she added.
Payson doesn’t want AIWS to be a stigma, nor does she want any mental illness stigmatized. “It’s simply different wiring of the senses, we all perceive things differently,” she explained.
While Payson may experience odd numbers on highway signs, and sound-maps in her ears – I experience things somewhat differently.
Ever since I was a young child, I would often have AIWS episodes in the middle of cartoons late at night, or just whenever I was tired.
Most episodes would last for minutes, but some would last for hours.
During an episode, sounds would become explosively loud, and very aggressive. What would sound normal would have the intensity of explosions blasting into me.
As a kid then, I would be incredibly scared – often running to my mother and crying.
The perception of my body would warp, and the world around me would change sizes. A room would become 20 times larger, while the objects in it would get smaller and smaller.
Every beat in my heart would be a thump, and the breathing of my lungs could be felt through my ribcage.
The eyes never dilate, and my movements weren’t affected. I can drive normally, I can talk without a stutter, I can badger sources for information, and I can fit in just fine with anybody else.
Yet, I have been going through AIWS episodes every two weeks this past year. Nobody could tell the difference – because there is none.
As Payson said, it’s merely a different wiring of the brain. We perceive things different.
AIWS is described by Jan Dirk Blom as, “a disorder characterized by distortions of visual perception, the [representations of positions of body parts], and the experience of time.”
Blom is a clinical psychiatrist in The Hague, and holds two part-time positions at different universities in the Netherlands. He explained, “My interest in AIWS grew out of my general interest in perceptual disorders.” In a systematic review conducted by Blom, he compiled a list of symptoms and experiences.
AIWS may affect the visual sense by making objects appear farther or closer than what they truly are, and change the perception of sizes, shapes, and even colors.
AIWS may affect the auditory sense by amplifying the intensity of any noise incredibly, making it sharp, jarring, and scary. Kids often burst into tears because of how frightful it is.
The sense of one’s self gets altered. Just like Alice in “Alice’s Adventures in Wonderland,” body parts may seem to grow or shrink.
Also, the sense of time gets altered as well. One 17-year-old patient had said that it slows way down, or speeds up very quickly.
This disorder’s duration tends to have episodes that last for minutes. However, it can last for days, weeks, or even years.
According to Blom’s review, treatment may require, “careful assessment, proper knowledge of underlying conditions, and a careful explanation to the patient of what to expect.”
Blom estimated that the syndrome appears to be seriously underdiagnosed. More and more symptoms are being recognized by the scientific community.
In a Facebook group named, “Alice in Wonderland Syndrome,” there was a poll to identify possible triggers for AIWS.
The top five triggers were being overly tired, focusing on somebody’s face, stress, migraines, and anxiety.
For Payson, it was focusing and stress. For me, it’s being overly tired, stressed, and focusing as well. But nobody’s the same, and it can be hard to discern what’s truly a trigger or symptom.
Scientific research on AIWS is sparse and hard to come by, as it is a new disorder that is slowly getting attention by the scientific community.
In Blom’s review, there were only 130 hits on PubMed for, “Alice in Wonderland Syndrome” and variants. “Only 59 articles had AIWS as their main subject,” he found.
As more people come to know about the existence of this disorder, there will be more research done about it. Perhaps you, the reader, have experienced these symptoms, or know somebody who does.
As a kid, I had no way of knowing what this could be. All I knew was that I was being scared by something out of my control.
It was by chance that Payson and I learned about AIWS, so we could know just what was different about us.
That’s why there’s a Facebook group dedicated to AIWS – to bring attention to it so others can find the name to their experiences.
In a decade, there may be more people who know about AIWS. In half a century, it’s possible that this mental disorder will be researched and be better defined.
For now, however, the best we can do is to share our stories and shed a light on the mysterious nature of Alice in Wonderland
Syndrome.

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