I experience a bizarre hallucination that no medical professional has ever been able to explain to me. It always starts the same way. I'm lying in bed, drifting off to sleep and suddenly everything starts to feel fast, frantic, and there's an accompanying feeling of dread. As the feeling builds, the walls start to shrink in and all sense of perception goes right out the window, like I'm inside a massive telescope. My limbs feel out of proportion with my body and my tongue feels too large for my mouth, but it's all happening inside my head. To look at me, you'd never know any of this was going on.
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When I was a kid, I experienced these symptoms a lot—two or three times a week. I was taken to hospital by my freaked out parents after a local GP said the word 'epilepsy'. Doctors stuck plugs to my head to scan my brainwaves as they blared white noise into my ears and flashed lights in my face, like a pediatric version of A Clockwork Orange.
Not epilepsy, not a brain tumour. They were full of bright ideas about what wasn't wrong with me. As to what was, they couldn't say. My parents were told to relax: My condition wasn't dangerous and I'd probably outgrow it. By and large they were right and the experience has reduced in frequency from four times a week to more like four times a year.
Apparently, I do have a mental condition. And that condition is called Alice In Wonderland Syndrome, sometimes shortened to the medically scary-sounding AIWS. I came across this term for the first time a couple of years ago, completely by accident in a tiny segment in a newspaper supplement under the heading 'Weirdest Mental Disorders'.
According to the medical community, Alice In Wonderland Syndrome does not officially exist.
It turns out plenty of other people have experienced this. Weirdly often, I'll mention the experience to a friend and they'll say "Hey, I get that!" I'd guess around one in five people know exactly the sensation I'm trying to describe. Usually, they thought they were the only one. I joined a Yahoo forum to find other people around the world with experience of this, and was inundated with responses. Everyone who contacted me used remarkably similar language to describe their experience: "The walls were throbbing," "the walls were swelling," "it feels as though I'm looking through a wide angle camera lens." It seemed clear beyond reasonable doubt we were all talking about the same thing.
I set about researching my condition last year for an article for an online magazine, Planet Ivy. I contacted the British Institute of Psychiatry, the British Institute of Practical Psychology, Oxford University, Cambridge University, and the London School of Hygiene and Tropical Medicine. Nobody could help me. Finally, a slightly more helpful woman at the press office of the Institute of Psychiatry at King's College London explained why I was having so much trouble accessing any information.
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"Since this isn't a medically recognised condition, we don't have it listed in any of our databases," she explained. "That means I have no way of locating an expert who might know about this." In other words, according to the medical community, Alice In Wonderland Syndrome does not officially exist. She recommended I contact doctors with specific fields of interest who might be able to fit my symptoms to another better recognised condition.
Individual medical experts sent me on a mad diagnostic goose chase. I spoke to no fewer than eight psychologists and psychiatrists. Starting to feel like a psychological guinea pig, I answered endless questions like "Are the episodes connected with emotions?", "Does anyone in your family have this?", "Are you taking any medications? Or recreational drugs?" One doctor asked me if I drive a car and responded helpfully with "Hmm… not sure," when I asked if I shouldn't.
I donned an Alice In Wonderland costume and became the Mail Online freak of the week.
They all told me they'd never come across this before and told me to contact somebody else. Just as I was about to give up, a friend on Facebook recommended I contact a colleague of theirs, Dr Tim Williams. "I am aware of AIWS through its association with hallucinogenic mushrooms (which I have a research interest in)," he emailed me. "However, I have never seen anyone with recurring AIWS from mushrooms or any other cause." Dr Williams said that my description provided evidence for a theory about a part of the brain called the default mode network, which is responsible for filtering emotions and memories from reality.
"In some people, the DMN can become less active during consciousness," he explained. That could be what was going on, he said, but it was "right on the peripheries" of his understanding—just like everyone else. That was as close as I ever got to answers.
One afternoon, I was contacted by a media agency. They wanted to sell the story of my inexplicable brain to the tabloids. I knew this was a bad idea, but I had a National Insurance bill to pay, and the Daily Mail was dangling £200 in front of my face. The result was my dignity crashing and burning as I donned an Alice In Wonderland costume and became the Mail Online freak of the week.
Then the queries really began to flood in. I also appeared on Radio 4, but turned down requests from Sky News, ABC News and Closer, as well as from a small magazine in Brazil and a handful of queries from TV researchers. Now people I have never met contact me on Facebook, just to tell me they have this thing too. Sometimes they ask me for help, like Ella: "Sorry if I've contacted the wrong person," she wrote. "I saw a video on YouTube of you talking about Alice in Wonderland Syndrome. I was wondering if you can help me find someone to talk to as I have recently developed it."
Or Vaughan, who thought I'd enjoy a pop psychology book he'd been reading, reckoning it might "gives clues to [my] condition and lead [me] to a cure." I'm okay, thanks buddy! I was contacted by a personal injury lawyer representing somebody who "seems to have developed AIWS." She wanted to know if there were "any particular experts" I could recommend who would be able to "correctly diagnose it." I wished her luck and told her not to expect much. I still get requests and questions, mainly through Facebook. I've started ignoring them.
I decided to see if any developments have been made since I started looking into this—but no dice. Psychology professor Mark Griffiths of Nottingham Trent University explained to me the logistical challenges of studying something like this. "Given that experiences like your own are so short lived, it's very rare to be able to study the effects neurologically," he explained. "I read that [Stanford-based medical practitioner] Dr Sheena Aurora was the first to conduct an MRI scan on a patient—a 12-year-old girl—during an episode. According to her findings, electrical activity caused abnormal blood flow to the parts of the brain that control vision, texture and shape and size."
"There is no consensus among case studies. Having the same symptoms doesn't mean there has to be the same cause."
Doctors are always wary of attaching labels or syndromes to people. There are big implications in having a term on your record, particularly one that is not well recognised.
More than a lack of agreement on its cause, doctors can't even decide on what to call this thing. I got back in touch with Dr Williams as he was one of the only doctors I could find actually using the term Alice In Wonderland Syndrome. I told him about the excessive media attention I had received and asked him why everyone in the medical community remained so skittish. "Doctors are always wary of attaching labels or syndromes to people. Medical records are less confidential in modern times and can be requested by a lot of institutions," he said. "There are big implications in having a term on your record, particularly one that is not well recognised."
I can only speak for myself, but my experience these days has such a low and non-debilitating impact on my life that I don't feel comfortable calling it a 'condition' or a 'syndrome'. More than much else, putting a label on something interesting that our brains can do isn't particularly helpful. If déjà vu were suddenly called 'Memory Relapse Syndrome' it wouldn't change what it actually is: An interesting blip that reminds us how complex our brains are. I tried to get answers from the brightest and most advanced medical experts in the country, and everyone basically just shrugged. I hope the medical community starts to look into Alice In Wonderland Syndrome for the straightforward pursuit of knowledge for its own sake. But I won't be the poster girl for it any more.