Alice in Wonderland Syndrome (AIWS) and Migraines

Introduction

Alice In Wonderland Syndrome is not heard of often when it comes to thinking about migraines. Although its effects can be quite disturbing and definitely disorientating. You may think you fell down the rabbit hole yourself. AIWS is a collection of symptoms and does not occur with migraine exclusively, but it is said Lewis Carrol did suffer from migraines. The name makes it sound almost fun, but really it is just plain weird. It did get its name from the novel by Lewis Carrol because of Alice drinking the potion that made her very big and another that made her very small. It was because of the migraines Lewis suffered there are the influences of thes in his novel. The condition is also known as Todd’s Syndrome, but that does not sound nearly as fun because then we could not say we fell down the rabbit hole and are late for tea with the Mad Hatter.

It is believed that AWIS may involve the brain's occipital lobe, which controls our vision and where migraine auras originate. Other regions in the brain may also play a part, but the exact entrance to the mind’s rabbit hole remains a mystery." (NBC New Health) The syndrome is one that affects our very perceptions of ourselves and our environment. These are separated into a) Distortions in body image called metamorphosis. Where the sizes of various body parts, such as arms, legs or head, are perceived incorrectly. Growing or shrinking in size, although growing does seem to be more common. And b) Visual distortions and perceptions of the world around us. Where the size of objects, or shape of objects, in the environment are perceived incorrectly. Hallways may be too long. The floor too close. Distances may appear incorrect. And the size of people or buildings too large or too small.

The syndrome seems to be more common in children but can re-occur in later life or fizzle out in the teen years. In its most extreme chronic cases it can be very disabling. While sometimes it is experienced before one goes to bed, even in the morning... imagine trying to get through the day with such distortions.



Symptoms

Body Distortions- The distortions is body image can be very strange and disturbing even. The sufferer finds they are uncertain as the size of their entire body or some body part. Stretch of the limbs or expanding or the scull.

Visual Distortions- Visual distortions make it difficult to see the world in a way that makes any sense. Objects appear to be larger (macropsia) or smaller (micropsia) than they should be. It can also mean the entire external world from buildings, to cars and people appear too large or too small and sometimes too close or too far. The walls are too close, the ground it too close. A short street seems too long. Hallways too long with the walls to close.

Perception of texture- There can be a distortion in touch perception as well. The floor with a spongy feel to it when you walk is one example. Or it can be that the sensation you receive from touching something is felt as incorrect or unrecognized.

Time Distortion- There can be a distortion in the perception of time, with it either moving too quickly or two slowly.

Sound Distortion- Sounds can be very aggressive and loud, or very distant sounding and far off. Or muffled and unclear.

Specific tastes and smells

Skewed balance- This might be due the spacial perceptions being distorted so completely such that a person may feel they are standing at an angle to their surroundings, or straight but their surroundings are not straight. It is a very funhouse affect on a persons stability. Another factor here is vertigo. People get that spinning sensation within the head, or external spinning in the environment. Or the sense that they are falling, one foot falling through the floor which makes them stumble. All which effect balance.

There are even some less common symptoms associated with AIWS. Some of which can be hallucinations of solid objects, or auditory hallucinations of voices and music and feelings of unreality. In fact it is said AWIS is likely unreported due to the nature of it seeming to be too bizarre and too close to hallucinations that people feel uncomfortable mentioning it.


Experiences with AIWS

"Floors either curved or dipped, and when I tried walking on them, it felt as though I was staggering on sponges. When I lay in bed and looked at my hands, my fingers stretched off half a mile into the distance. These bizarre episodes were starting to happen more often, but because I was under pressure to finish my degree and get a job, I continued to put them to one side, figuring they must be stress-related or indicative of poor sleeping or diet.I graduated and took a job as a system administrator in a new town, but instead of going away, my symptoms just got worse. Everything was now distorted, all the time. Walking down the road, parked cars appeared the size of Corgi models, while I'd feel disproportionately tall. At work, my chair seemed enormous, while I seemed to have shrunk.Seeing the world through a fisheye lens made day-to-day life very difficult. Unable to judge distances accurately, I would often move clumsily or overcompensate. Soon I found it a struggle to leave the house; I had difficulty correctly perceiving the ground, so walking was tricky. If I didn't think about it I was OK, but as soon as I did, I found myself slumping and struggling to walk in a straight line. Crossing the road began to feel dangerous; when I saw a car coming, I had no idea what size it was, or how far away." (the Guardian)

""quite suddenly objects appear small and distant (teliopsia) or large and close (peliopsia). I feel as I am getting shorter and smaller "shrinking" and also the size of persons are not longer than my index finger (a lilliputian proportion). Sometimes I see the blind in the window or the television getting up and down, or my leg or arm is swinging. I may hear the voices of people quite loud and close or faint and far. Occasionally, I experience attacks of migrainous headache associated with eye redness, flashes of lights and a feeling of giddiness. I am always conscious to the intangible changes in myself and my environment." (Wikipedia)

"I had them myself as a child, but did not know the name for it at the time. When I was trying to fall asleep sometimes it would feel like my arms and legs would stretch out and expand in fluctuating pattern, or that my head was swelling larger or even that if felt like the world was dropping and spinning. Or that I was floating and then falling. It is most common to experience at night. I thought in fact that it was a normal occurrence. I thought everyone had this sort of thing happen before they fell asleep. Like the brain was just giving me these sensations. Because I would check. I would feel my leg and go, if I can feel it then it has not stretched out... it just felt that way. I didn't always like it, mind you, because it stopped me from sleeping often and sometimes it was disturbing. And I had these sensations from somewhere beginning as a child up into my teens. Likely because my migraines began around then to replace it I suppose." (myself mentioning childhood occurrences)

"As an adult with migraine attacks in the morning on waking I would have AIWS. It would often be with time distortions and a great deal of confusion. I would have vertigo with spinning and falling, or just falling and stopping, falling and stopping. When I tried to get up everything was wonky. Objects would be warping, the more I tried to focus on them the more they would shift in shape. Things appeared to move when they should be still. When I walked the floor was like walking on sponges. My sense of balance was always so off I felt drunk. Often the ceiling was too close to me, the walls too close, the ground too close... and looking at them gave me a sense of wrongness because I knew it wasn't right. I'd run my hand along the wall just to walk straight. It always felt so surreal and like I wasn't really able to function right or think properly because it didn't feel real enough. I'd often be late to even call in sick for work because of the skewed perception of time. The vertigo alone made it difficult to just walk and the idea of driving like that terrified me. I often had the the sense things felt wrong... like my face felt swollen but also that the texture was wrong, or my figures were the wrong shape and I would stare at them just positive there was something wrong there. Often since I used my hands just to get around I would notice things felt wrong as well. It was not at all the same experience as when I was a child but I think the acute migraine made a huge difference in that. To be honest I have chronic migraines, with migraine associated vertigo and persistent migraine auras and I there are many days when things were distorted and the vertigo is an issue but the AIWS seems to be like this intense dose of all of that for a longer period of time, with some serious messed up time distortion and sense of unreality tossed in there such that your ability to function is severely compromised. For me when it started to occur as an adult it was definitely tied to the migraines but also apparently to the fact I was getting very little sleep. When the sleep deprivation was treated moderately after a bit I stopped getting these waking bouts of severe AIWS." (myself talking about adult occurrences)

Cause and treatment

People with migraines can get AIWS and it is the more common reason. Other causes can be Epstein-Barr virus, temporal lobe epilepsy or brain tumor. It primarily occurs in childhood and resolves itself. It is rarely seen in adulthood. While "children with Alice in Wonderland syndrome may grow out of it into regular migraines, Young says symptoms may warrant a check up for less common but more serious conditions, including epilepsy, brain tumors and encephalitis (brain infection)." (NBC News Health) This is a good indication if you had AIWS symptoms as a child and your child is experiencing the same thing he or she may then develop migraines, or in fact, have migraines as migraines in childhood present differently and it is a good idea to keep this in mind. It in-itself is seen as a benign condition associated with the primary cause, that is it is a collection of symptoms associated with say migraines or epilepsy. That is not to say it cannot be a debilitating condition when it is severe. Chronic cases of AIWS as you might suspect are extremely disabling.

So if you get this you are not going all Mad Hatter crazy, even if feels like you are in a funhouse for a bit. Treatment wise on the migraine side of things is similar treatment to the migraines themselves. A good diet, avoiding trigger foods like wine, chocolate, MSG and nitrates as well as exercising and probably some of the preventatives to treat migraines that effect neurotransmitters might help such as anitconvulsants, antidepressants, beta blocks and calcium channel blockers. Since with migraines we do get quite a few visual disturbances, visual auras, touch disturbances, as well as hearing issues and taste issues, I do recommend we see an eye doctor even if we know it is a migraine aura or it is AIWS, simply because we need to have confirmation it is not something physically going wrong with the eyes themselves rather than neurologically. As well as seeing a neurologist because there is more than one cause for this phenomena so it is best to ensure it is one and not another.

Nevertheless, AIWS is one of the more bizarre and rarely heard of migraine symptoms. However there are symptoms that have similar effects. We do get vertigo, dizziness, and visual disturbances that made this appear to warp or move. Fact is, we can get all sorts of neurological fun when it comes to migraines.

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Comments 10 comments

Emily 4 years ago

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 ive seen as also a sympton and since it also went away i believe it must have been related, which lead me to believe i was schitzophrenic but i didn't 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 minimise the onset of migraines...don't 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.


silfkas 4 years ago

I used to get these when I was younger. They were quite the experience. At night, the ceiling would look literally miles away, and I couldn't bear to look over at my alarm clock, because it made me feel like an ant. It only happened in the daytime once or twice. I found that listening to loud music through some earphones usually made it go away quickly. I eventually mentioned it to my brother, and he said he also used to experience it. I'm 17 now and haven't experienced it for years, so I guess I grew out of it.


nmalbert profile image

nmalbert 4 years ago from Canada Author

Most people actually do grow out of it. I did myself as well. But when I got severe chronic migraines I began getting it again in the morning, rather than at night as I did as a kid. But generally AIWS is common in children.


Rebecca 4 years ago

I think I had this too when i was young. When I was falling asleep sometimes I would feel like my hands/fists were huge and would weigh a tonne, also a non-painful sensation that my brainwash being compressed to a pinpoint and again would weigh as much as a planet and that was miles from my feet. Also got the voice thing. Maybe some kind of epilepsy? I grew out of it though.


nmalbert profile image

nmalbert 4 years ago from Canada Author

Hi Rebecca. It sure feels like a form of epilepsy and who knows, there are lots of forms of epilepsy out there as well that are often not caught. But AIWS is neurological and very specific, also onset is very common to occur when falling asleep. I agree it is very trippy though.


Julie 4 years ago

Great description of this crazy illness. I HATED feeling this way. The worst symptom by far was time-distortion - that really made me feel crazy. I thought I was losing my mind. I also hated the body distortions. I also suffered from MAV and when I cleared that up I also cleared up my AWIS. I was actually bed-ridden with migraine-associated vertigo for over a year. Thanks for your great post. You are really helping people. Julie. http://www.stoprocking.com


nmalbert profile image

nmalbert 4 years ago from Canada Author

I also get MAV. It is intense and unpredictable. I can totally see being bedridden by that. I was seriously concerned when I had it last longer than a few months, with it being strong enough to make me feel drunk and it really has never gone away since.


Edie 4 years ago

Also, when I have a true migraine aura, I feel like my hands are detached from my body and don't belong to me. I always thought that was kinda "Alice in Wonderlandish" but didn't know that was actually a thing!


Rachel 3 years ago

When I was a kid at night when I laid down to sleep as I began drifting away with my eyes closed, it felt like the bed was spinning in clockwise circles, then counterclockwise, and then finally in all directions. I would then have a sensation of my hands swelling up to a giant heavy size and then shrinking down to a tiny disproportional micro size. This feeling would travel between my hands, legs, and head. Often I would sense that the texture of the sheets I was laying on would change from smooth white to an itchy black fuzzy distorted texture, something similar to the way a Pollock painting looks, or the way the old television screens looked fuzzy when you changed the channel. It is really hard to describe the sensation. I knew somehow that it was in my head, however I actually felt the sensations as if they were real. This caused me tremendous anxiety as a child. Its almost a kin to a half awake and half sleep like state, and I would cry nervously. My mother often thought I was having a nightmare. I'm not sure if this is related to Alice In Wonderland Syndrome but, I was told by my mother, and other family members, that I was a sleep walker. Also, I would do strange things such as stand up in my bed and mutter to myself in the middle of the night. The reason I am able to describe this sensation so well, is that I have experienced it occasionally throughout my young adult life. I am now 27 years old and I believe the experience for me is related to sleep deprivation and anxiety, and I am typically more "awake" now when experiencing the sensations. I have never heard voices, or seen objects as large or small like some of the other people here. For me it was a feeling in my body, and it had to do with my limbs and the sensing of textures on my skin. This feeling happens very rarely now that I am older but as a child it happened often enough for me to recall the details.


nmalbert profile image

nmalbert 3 years ago from Canada Author

Rachel that sounds very AIWS like. It is quite common for it to be more frequent as a child and to not occur as often as an adult. I also had mostly the spinning sensations, or falling and spinning along with the distortions in my body when I was a kid. It often occurs at a time when you feel half asleep or half awake so people can think they are nightmares... and when I was younger I used to think they had to be some sort of half-asleep phenomena. Not everyone has it persist after they wake up and get up... those that do are the ones that will have objects that appear small, distortions in time and other perceptual hallucinations. I have had those occur as an adult that seem to be related with migraines and not nearly as frequent, but never as a child... those were all just at night and never continued beyond that.

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