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A Not So Pleasant Fairy Tale: Investigating Alice in Wonderland Syndrome

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Caroline Feldman's picture

Is “Alice in Wonderland” a pathological product, the result of a single man’s “nerve cells and associated molecules” running amock? The tendency to reduce artistic, religious, or philosophical achievements to bodily ailment was aptly named by William James in “The Varieties of Religious Experience.” “Medical materialism,” he wrote, “finishes up Saint Paul by calling his vision on the road to Damascus a discharging lesion of the occipital cortex, he being an epileptic. It snuffs out Saint Teresa as an hysteric, Saint Francis of Assisi as a hereditary degenerate” (9). And, I might add, Lewis Carroll as an addict or migraineur.


Author Lewis Carroll wrote of some truly bizarre events in his books "Alice in Wonderland," and "Through the Looking Glass and What Alice Found There." Alice goes through all kinds of metamorphic changes; she gets larger or smaller after ingesting certain liquids from labeled bottles, or experiences visual discrepancies such as double vision or hallucinations of smiling cats.

Imagine: You're hallucinating, and you know it. Time is messed up. First it seems slowed, and then it seems to be speeding up. Even more noticeably, when you look at your body, it seems to be morphing. You're getting smaller. Minutes later, you're growing larger and larger (6). That's a description of "Alice in Wonderland" syndrome, a rare form of Migraine aura. The most distinctive symptom of "Alice in Wonderland" syndrome is this type of metamorphosia, a distortion of body image and perspective, which Migrainer's know is not real. (1) "Alice in Wonderland" syndrome can occur at any age, but is more commonly experienced by children.

Migraine researchers suggest Carroll was actually a Migraineur, and Alice's manifestations in the book were representative of his Migraine auras. Alice in Wonderland Syndrome (AWS) was first described by CW Lippman in the Journal of Nervous and Mental Disease in 1952 and named by John Todd in the Canadian Medical Association Journal in 1954 (5). Some noted symptoms of AWS include false orientation of objects in space, one object appearing as two or more, inverted vision, impaired sense of time, feeling detached and personality changes.

Alice's adventures seem to parallel Carroll's suffering as a Migraine patient. Alice being blinded by moonlight could refer to a Migraineur's sensitivity to light; other references are to medications and hallucinatory side effects. For example, from "Alice's Adventures in Wonderland:" "In a minute or two the Caterpillar took the hookah out of its mouth and yawned once or twice, and shook itself. Then it got down off the mushroom, and crawled away in the grass, merely remarking as it went, 'One side will make you grow taller, and the other side will make you grow shorter.' 'One side of what? The other side of what?' thought Alice to herself. 'Of the mushroom,' said the Caterpillar, just as if she had asked it aloud; and in another moment it was out of sight” (8). In a study published in 1998 in Contemporary Pediatrics, AWS might be seen as a Migraine equivalent; a Migraine without head pain. This study describes the typical patient as between five and 12 years old whose auras last between 10 and 60 minutes. The child can function without disability and usually has a family history of Migraine. Other literature notes this phenomenon among children and rarely among adults (7).

One example of a child who has this rare disease is nineteen-year-old Katie O’Brien. Her view of the world can change in the blink of an eye. She can feel as if she is living in a world that has shrunk to the proportions of a dollhouse or other times, ordinary objects seem surprisingly large. Katie describes, “Right when I wake up, that’s when I’ll start to see things differently. I was looking at the couch once and it looked like the couch just was growing. It was really weird. It was really horrible” (3).

Another case of AWS is seen in a twelve-year-old girl named Ana Ryseff. In Seattle, radiologists and researchers are attempting to capture, for the very first time, an actual “picture” of this rare syndrome in her brain. Ana’s auras last just a few minutes and only seem to happen when she is concentrating hard on a printed page. She explains, “Sometimes when I’m really focusing on a piano piece, the notes will just zoom, zoom up, so they’re just really big, like as if you were using a camera and you zoomed up on someone” (3). Ana had no clue what was happening to her, but she was about to discover some new information. In the scanning room, researchers used a black-and-white checkerboard pattern to mimic the black-and-white printed page that seemed to cause Ana’s hallucinations. Neurologist, Dr. Sheena Aurora, hoped to trigger Ana’s aura inside a scanner and get a functional image of her brain. It worked and Ana and her mother were able to see a picture of a brain where an Alice in wonderland Aura takes over ones vision. Two areas of the brain lit up. A burst of electrical activity caused abnormal blood flow in the area vision and the part of the brain that processes texture size and shape. Dr. Aurora explained, “That’s why [Ana] saw things become really small and really big. This activity definitely can explain the differences in size and shape and form” (3).

We are all prisoners of our mortal minds and bodies, vulnerable to various kinds of perceptual transfigurations. At the same time, as embodied beings we live in a world that we explore, absorb, and remember — partially, of course. We can only find the “out there” through the “in here” (the brain). And yet, what the philosopher Sir Karl Popper called “World 3” (4), the knowledge we have inherited — the science, the philosophy, and the art — stored in our libraries and museums, the words, images, and music produced by people now dead, becomes part of us and may take on profound significance in our everyday lives. Our thinking, feeling minds are made not only by our genes, but also through our language and culture.

I have been fond of Lewis Carroll’s Alice when I first read it when I was younger. She may have started out as words on a page, but now she inhabits many people who have this rare syndrome’s lives. (One could also say her story has been consolidated in memories through important work done by hippocampuses.) It is possible that headache episodes from such girls as Ana and Katie have made them particularly sympathetic to the girl’s adventures and her metaphysical riddle. I dare say countless people have lifted her from “World 3”, a kind of Wonderland in itself, and taken her into their own internal landscapes where she continues to grow and shrink and muse over who in the world she is.



References:


1)http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Alice+Wonderland+Syndrome

2) http://www.clevelandclinic.org/health/health-info/docs/3200/3266.asp?index=11253

3) http://a.abcnews.com/Primetime/story?id=3581479&page=1

4) http://www.knowledgejump.com/knowledge/popper.html

5) http://www.theregister.co.uk?2006/12/01the_odd_body_aws/

6)http://www.associatedcontent.com/article/387136/alice_in_wonerland_syndrome_is_no.html

7) Shevell, Michael, M.D., "A guide to Migraine equivalents," Contemporary Pediatrics, 71, June 1998.

8) "Alice's Adventures in Wonderland," chapter 5. Quote researched by Mark Burstein, Vice-President and Knight Letter Editor; The Lewis Carroll Society of North America.

9) James, Williams. The Varieties of Religious Experience: A Study in Human Nature. Toronto: Random House, 1929.

Comments

Serendip Visitor's picture

Different form of AiWS

Hi,

Although my experiences are similar, they don’t seem to match up with AiWS, but it’s the closest I’ve got.

It started when I was young, I used to have nightmares, and it was about time, the only way I could make sense of it was something moving to and from me like a pendulum, but it would slow and I’d scream, the only reason I mention this is because it would happen to be during the day when I was awake, although during the day there wouldn’t be a pendulum, I was aware of time slowing, it’s hard to explain because it wasn’t visual as such, more hearing, I’d panic when it got slow enough to think it would stop and bolt and change what I was doing, as if to wake my body up, even if I was already moving. This happened a lot growing up, I’m 36 now and I still on occasion experience this.

The other thing I experience which is closer to what others mention is feeling small, but unlike everyone else, it’s not objects, it’s me, and only when I have my eyes closed. This happens more regularly about once a week. At bed time usually, I’ll close my eyes and feel so small. From what I’ve read AiWS only affects people when they’re looking at things? I thought I’d post this in the hope someone else has experienced one or both and can point me in the right direction.

Thanks

Michelle Doriah's picture

My 7 year old daughter has this. It's been 2 weeks now.

My daughter had a fever of 103 at school. I few days later her pediatrician says she had the flu. She got cough medicine. 2 weeks later she started telling me about things shrinking. It happens almost every day and lasts for a short time. After the third time of telling me this, I checked online. So, now we know it's really rare but there are other people with this experience and it makes her feel better. We've been back to see the pediatrician, and as expected, she was not aware of this condition. She is now! I requested a referral to the opthamologist and neurologist. I expect that they will find nothing wrong and then I'll know for sure that she has Alice in Wonderland Syndrome. She seems to be doing fine with it except she does not like how it feels. She was not able to describe a feeling for it but she agreed with "weird".

Kathy's picture

AWS

She is right, it is weird. I just now write to you but not sure it made it as it switched pages on me.
I would say, do not worry. I suffered with the episodes of feeling different textures, I knew were wrong, seeing things across the room go far away and things around me shrink. Those did not bother me as much as the control the episodes took. They would come on at bedtime when I was very young. At around age 12, I started having them in my daily life. Everything in my world would halt and I would think 'oh no, and then things would shrink. I suddenly felt thrown into a tunnel life best I can explain it. There was a woman and people around her on my head mumbling, no , no or something like that. It would get louder and then softer but during this time I was seizes up. I could not move my arms or stop it from happening. It three off the rest of my day. My responses slow and thinking was hard. I can now compare this to the way I feel after a migraine. I started with the migrants after the episodes all but stopped. Somewhere in my 20's. I have had 3 day migrants and it would take me a day to feel like I was me again. Same with the episodes when I was young. Your daughter is right, weird is definetately the right word. Not painful or even scary. I learned to dread them as they changed my personality for a few hours to an entire day. They used to come on in the shower. I had a hard time finishing washing myself and just felt out of touch. My mother thought I had demons. My 3rd child suffered with terrible seizures after her childhood shot. Not related to my knowledge. I suffer with mostly auras now and they are much easier to deal with than the episodes or the headaches. I have had a couple episodes of the pillow feeling like cement and the room growing, but it was during a very long migrane, 72 hours or more. Adjusting afterward was the strange part. I felt like I was in a different dimension. I have led a pretty normal life and the AWS has not interfered much. It hasn't been a problem in nearly 25 years. I pray your daughter accepts these for what they are and do not worry she is being harmed. My IQ is good, I love math, writing, I play instruments and have ran track as well as marched in band. It has never stopped me from doing important things. I hope this helps. Tell your daughter I totally understand and I think she got it right, it's just 'weird.'

Serendip Visitor's picture

i also have aiws

i am 17 year old boy. i know i also have this rare syndrome. sometimes when im relaxing or just sleeping, suddenly everything in my head starts in fast motion or in slow motion sometimes. its a very wierd feeling. the voices seems so loud and disturbing. i cant explain it properly and yeah i can also zoom on things. they seem very larger as i focus on them. but the most disturbing thing is fast motion. its kind of rushing like everything is rushing. is that harmful? i'd like to know more about it

Kathy Abner's picture

AWIS

I am 56. Recently found out this is what I experienced all these years. I told people, but no one seemed to know. I too, had the speeding up and it was scary. It would come out of nowhere and paralyze me for a time. I dreaded the episodes. At night it was touch that changed. My pillow would start to feel like cement and my window that was 8 ft away would be 30. Voices in my head were monotone and loud and then soft. This started at about age 4. I was a sickly child and have had migraines and auras through my life. You are the first person to describe the speed thing and feeling out of it that I have found. My mother actually had me prayed for, thinking I had a demon. All the symptoms seemed to fade after about age 30, then during a migraine I had one 7 yrs ago and a few milder ones since. Would like to know more if possible. One more thing, it seemed to happen in the shower or when I was in a hurry. It actually would affect my whole personality the rest of the day. I hated them and am nervous here writing about them. The worst part was feeling frozen, I could not communicate or think straight or even mive for as long as 2 minutes. I would be so glad when it was over. How do you tell someone what this is if they have never experienced it. It was frustrating. I am relieved somewhat to find I am not crazy and others feel these things and it has a name. Thank you for your honesty. And I am sorry to all of you out there with this strange, strange disease. God Bless U All.

Serendip Visitor's picture

Any New Information

Hello,

I have been suffering from this sydrome for years. It wasn't until I turned 22 years old that I finally started doing some research since my doctors and ophthalmologists couldn't figure it out. FINALLY, there seems to be more research being done on it! Has any more information surfaced about it? I suffered from the neurological part of it when i was a child til my teen years and later on started having horrible migraines, which I found can possibly be a result of this AIWS. I would love to know how this is going to affect me later in life and if there are any treatments/preventative measures I can take?

Kathy's picture

Same here. I suffered with

Same here. I suffered with the episodes into my 20's to about 30, then I had 3 day migranes. Not all the time, but enough. I am lucky in the fact that I have the aura sometimes, not accompanied by the migraine. The only thing that gets rid of my headach is rest. I have been on Midrin and Imatrix. ( not sure how to spell it, have not seen them in years).Hope this helps:)

Kathy's picture

Same here. I suffered with

Same here. I suffered with the episodes into my 20's to about 30, then I had 3 day migranes. Not all the time, but enough. I am lucky in the fact that I have the aura sometimes, not accompanied by the migraine. The only thing that gets rid of my headach is rest. I have been on Midrin and Imatrix. ( not sure how to spell it, have not seen them in years).Hope this helps:)

kimberley austin's picture

study

Hello there,

I am just wondering if anyone would be able to answer a few questions about their experiences with alice in wonderland syndrome. I too have the condition and found i had this by relating myself to other peoples experiences on the internet. I would like to see if there are any similarities across peoples responses to see if this could direct future research

Thank you very much

the study involves a few short questions, which you don't have to answer if you don't want to .

Serendip Visitor's picture

Micropsia/Macropsia info & support group on FaceBook

I am now 64yo and have had these symptoms since about the same age (8yrs old) as others have described. It would be a few times a year or less. The TV would appear twice the distance as would the rest of the room. Tonight it came back after about 10-15 yrs of not having it happen. The ceiling was distant..the room appeared larger..I use to describe this symptom as "looking through the opposite side of binoculars ..but now I can best describe it as I was viewing things as if I was a small 1/4 scale of myself.
Reply

Kathy's picture

AWS

Yes, I have had this for 50 years. Although it has all but left me, I still have had a few episodes in the past few years. I especially have the auras now, more often than I ever have. I would be happy to answer any questions you may have. My email is: kathyabner159@yahoo.com

Kathy Abner's picture

Study on AIWS

Hello. I just posted a comment. It could be on this site shortly. I too have this and as bizarre as it seems it is all too real. I am 56 and started symptoms at around age 4. If you would like to know about mine or we could compare that would be helpful to me as well as I just found out what this was while viewing an episode of "House". I could hardly believe what I heard as I have described this to people my entire life and no one knew what I was talking about. It is hard to describe unless you have it. Contact me if you like at kathyabner159@yahoo.com.

Serendip Visitor Lyn 's picture

AIWL

My 7 year old daughter is suffering the same.
Can any one tell menwould it affect her pupils????
When she has these sight problems her right pupil goes larger than her left.
Molly has see a doctor & her eyes are in very good order.

Serendip Visitor AH's picture

My son's pupils are different

My son's pupils are different sizes and he has always had what we believed were night terrors. But he's been having strange sensations while awake that seem like Alice in Wonderland Syndrome, and increased night terrors. We aren't sure what to do.

Miyuki-minna's picture

Studying...

I believe I may have AIWS and I would like to be involved in the study and treatment findings of/for the syndrome. Please contact me with any information.

kimberley austin's picture

Exploring individuals living with alice in wonderland syndrome

Hello there,

I am just wondering if you might like to take part in my study ?
I am collecting peoples experiences of living with this condition for my psychology dissertation. I am doing this to see if there are any similarities across peoples responses. This is in order to direct future research focusing on the codition.

This is important to me as I myself live with this condition and only found out the name a few years back from looking at other peoples experiences on the internet.

I hope you get in touch to answer a few questions .

Thank you
Please email L1026314@live.tees.ac.uk

Serendip Visitor's picture

AIWS experience

Hello Kimberley,
This is all very new to me but if it helps you with your education and sheds some light on a rare condition I am happy to participate in your survey. I am 58 yrs old and have suffered from migraines since my teenage years but the AIWS is new to me which, from what I am reading, is odd since it appears to happen mostly to children and not appear suddenly in later years. I had my first experience with this phenomena a month ago during a period of more frequent migraines and dizziness. I am a short person and felt as though my head may hit the door frame although I knew that my head wouldn't actually hit it. I seemed to have all of my wits about me except for the fact that I felt much taller than I am.A few days later while I was sitting my legs seemed much longer than usual and objects in the room smaller or farther away. I can see why people don't share this experience. I am a professional person in a management position and would shudder to think what my co-workers would think of it. It would likely be viewed akin to a mental illness which has quite a bit of stigma attached to it.
Thank you for bringing attention to the subject.

Emily Biddell's picture

My experience with Alice in Wonderland syndrome

This is one of the most amazing days of my life...a mini article called the "ten oddest syndromes" came up on one of the news websites i have as my homepage this morning and as i came across alice in wonderland syndrome i nearly screamed with joy, i do remember a vague sense or look every now and then that my hands were huge but not as dramatic as ive seen it described throughout these websites but from about 12 to 17 I would often feel like i was moving in fast forward, anywhere from a minute to several hours, and i would have to lock myself in a room and move myself and objects what would be perceived by anyone else as very slowly to feel like i was moving at a normal pace until the sensation went away, during this time i also had a rather aggressive voice in my head (a male), which lead me to believe i was schitzophrenic but i didnt want to admit it to anyone for fear id be carted off to the psych ward, i also would regularly have moments where my line of vision would shrink to a small tunnel and then after a few seconds open up again. My mum has been a migraine sufferer for much of her life and used to blackout when she was younger until a visit to a chiropracter and he pushed on a pressure point and she never blackedout again but she has to go to a chiropractor and have acupuncture regularly to mnimise the onset of migraines...dont know how it works but it does for her. As for me, one day it all just stopped, im so happy it has a name, now i feel like i can admit to it without being labelled as crazy.

Anonymous's picture

I have been fond of Lewis

I have been fond of Lewis Carroll’s Alice when I first read it when I was younger. She may have started out as words on a page, but now she inhabits many people who have this rare syndrome’s lives.

Anonymous's picture

migriane and alice and wonderland syndrome

my 10 year old daughter has migrianes and sometimes while she is having a migriane she tells me that I look very small. This only seems to last a minute or two then goes away. the alice and wonderland syndrome matches her symptoms last night she also said that my voice also became louder and then went back to normal any thoughts etc... shes only 10 and has been having these symptoms for awhile she also gets vertigo and vomits with the migrianes..Thank you

Alayna Jensen's picture

I have Alice in Wonerland Syndrome and want to help the study of

I am 19 years old, and i KNOW i have Alice in Wonderland Syndrome. I have these weird feelings all the time where objects that i come in contact with are very very tiny and im HUGE!! and then at other times. I am TINY and everything i come into contact with seems to be much much bigger than me. It usually comes with a migrane, which run in my family. it probably happens to me once every 2 to 3 months. its the weirdest feeling in the world and i'm just wondering if any doctors need me to study because i know thats its rare. Im hoping to help the study of the syndrome before i get much older and it fades away. Thank you for listening.

- Alayna Jensen, San Diego, CA

Paul Grobstein's picture

Alice in Wonderland syndrome

I hadn't heard of this, and wish I had; see the Novelist and the Neurobiologist. When one does and doesn't need to presume a "story" to account for something the brain does is an interesting question, as is how things the brain does become stories.