Skip to Accessibility Tools Skip to Content Skip to Footer

Alice in Wonderland Syndrome – A Real Life Experience

If you look around the Internet, you’re likely to find the same information about Alice-in-Wonderland syndrome repeated over and over again. This information generally emphasizes that the syndrome’s symptoms alter and distort time and sensory perceptions, but provide little to no additional details. This can be frustrating for migraineurs who think they may have the syndrome, because it doesn’t really tell the reader anything about the actual experience of having it.

So, let’s change that.

I am a chronic migraineur whose auras include Alice-in-Wonderland syndrome. Despite what the Internet may have led you to believe, I was not diagnosed with the syndrome in childhood nor did I outgrow the condition in my teens. In fact, I didn’t even have my first aura until I was in my mid-20s (though my migraines started about 10 years before that), and now at age 30, I experience the syndrome more frequently than ever. It is no more likely to strike at night than at any other time of day, and it has little to no correlation with whether or not I’m tired.

The first time I experienced the syndrome I was sitting in my neurologist’s waiting room. I was glancing around the room trying to fix on anything that wouldn’t make my head hurt worse than it already did (her waiting room was notorious for its harsh fluorescent lighting and loud TV), when I noticed something odd. The potted plant in the corner was beginning to change shape.

As I watched, the right-hand side of the pot grew taller and taller, overtaking the left-hand side by 30%, 50%, even more. Eventually, after maybe three to five minutes, the right-hand side looked to be nearly double the height of the left-hand side. I shook my head, completely bewildered, but the strange shape remained. Then, as I looked around, I noticed the walls and the floor also looked odd. They appeared to be moving!

Minutes later, everything went back to normal. Then, my name was called, and I went about my day, not telling my neurologist anything about what had just happened. I wasn’t sure what I had seen, and I didn’t want anyone to think I was crazy (a stigma migraineurs have dealt with for a long, long time). I figured if it happened again, I’d do some research on my own, and then maybe bring it up.

A few days later, as I was driving home from work, I experienced my second episode. I was driving along the back streets, trying to avoid the city’s worst traffic, when I began to feel bigger than the houses I was driving past. I didn’t see myself as bigger, necessarily, but I felt as though I was. It seemed as though I was growing and growing, just like Alice in the White Rabbit’s house, and at any minute I would be big enough to crush the passing houses between my fingers. Logically, I knew this was impossible, and tried to talk myself out of the distortion, but I couldn’t fix the feeling. Finally, I pulled over and waited for the feeling to pass.

I’ve experienced many such events in the past six years. Most frequently, the syndrome presents itself in smaller ways: walls that seem to curve and/or move further and further away from me as I watch them. Floors that appear to move beneath my feet. Trees that seem to shoot away from me as I drive closer to them. Less frequently, I feel like Alice again, too large for the cars or buildings I find myself in. In all instances, I feel strange, as though the world I’m currently living in isn’t the one I was in when I woke up that morning.

Now, obviously, this is just my personal experience of a very complicated neurological syndrome. Your experiences, if you have the syndrome, may differ, perhaps dramatically. In fact, they most probably will, because aura – just like migraine disease itself – is very individualized. We all experience it differently.

Still, I hope that by reading my experiences you’ll have a little more insight into how the syndrome can manifest and what it feels like to actually experience it. And, that, I hope, will give you the perhaps much-needed reassurance that what you’re going through is a documented symptom of migraine and not a sign you’re losing your mind.

For another real-life description of living with Alice-in-Wonderland syndrome, read this post from one of our Migraine.com readers.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • LeilaniRL
    2 years ago

    I’m just coming across now and it made me go back to when I was a kid in elementary Catholic school. I used to think I had this magic ability to make the priest and altar boys zoom in and out while I sat in my pew. I could do the same thing with my feet. Reading this article blew my mind and now I know that I’ve had migraines since I was a child in the 80s.

    I was officially diagnosed around 2007.

  • Sarah Hackley moderator author
    1 year ago

    I’m glad the article provided some insight. It’s always amazing the things we consider ordinary when we’re children, and the road to diagnosis is usually a long one for many of us. Thank you for sharing your story!

  • lizlight
    2 years ago

    I had AIWS as a child. I’ve read that there are two types, the migraine version and the seizure version. I had it my whole child hood and it seems to run in my family as my mother brother and sister have had similar instances but I got it the most. It stopped right at 18 though after a nasty fall down some stairs I started to get my AIWS aura back again but with no seizure. My experience was like this, I would start fretting an ominous feeling and then a rhythm would set in like an over bearing white noise and then ,bam, I would be in an inverted world. Everything moved with the rhythm, the pace people talked at went with the rhythm. While I would be having an episode I would try to make the rhythm to who ever I was around but the said it was non sensical. Everything seemed angry, if something was spoken as a whisper it would still sound like screaming even my own thoughts would sound like screaming. It wasn’t that what I looked at would grow or shrink or even myself but everything felt like different sizes. A real car if I touched it would feel like a tiny toy in my hand or a pencil as thick as a tree. I lost all perception of time and everything would be so intense I would have to go somewhere quiet and still to let it pass. They only lasted about 5 minutes. When I was put on Wellbutrin they went from about 4-6 times a year 5 minutes in length to 3-4 a week 30 minutes at a time. They also seemed to brought on by listening to music or moving something at a rhythm and then the rhythmic aura would start. Now at 32 I’ve been dealing with migraines of all different types but mainly silent (luckily). No dr could ever tell me what was going on as a child, and it took after my first serious migraine happend with aphasia where I was brought to the hospital. After that I got some brain scans eels and spoke to a neurologist who said yes I most likely had AIWS.

  • Sarah Hackley moderator author
    1 year ago

    It seems not many neurologists or doctors know understand AIWS. I’m glad you finally found one that was able to give you some insight. Thank you for sharing your story with us. It always helps to hear other people’s experiences with unusual symptoms.

  • anovla
    2 years ago

    I just developed AIWS a few months ago. My first few “episodes” were extremely intense. I told NO ONE!!! I’ve learned to be careful with telling my family and my in laws my business..they’re ruthless. I have a history of depression and ptsd so if I came out and told anyone that I felt myself grow as big as a giant while simultaneously shrinking as small as a doll..well they’d have me committed asap! The actual episodes themselves weren’t actually scary. They were unsettling, disturbing, confusing, and downright weird..but not scary. Not knowing what was going on scared the crud out of me! And I had no one to talk to about it! That was the worst part. Immediately after the first episode I knew I couldn’t so much as tell my husband, and I have always been able to tell him EVERYTHING! That’s scary. I thought I was going crazy. I documented everything I could think of about the episodes. After the second episode I went to google for answers. And I found them. Alice in wonderland!! What?!? Neurologist confirmed. I told my husband afterwards. He laughed. He thinks I’m crazy. So we don’t talk about it, ever. It’s the most isolating condition you could ever have.

  • Sarah Hackley moderator author
    2 years ago

    It is very strange. Like you, I didn’t want to tell anyone at all about my episodes when they first started. It took me a long time to even trust my neurologist enough to tell her! I’m glad yours was able to confirm it for you. It certainly helps me to know and understand what’s happening. I hope you feel less alone knowing others of us experience the same thing. Thank you for sharing.

  • msdede81
    2 years ago

    Thank you so much for this article. I’m so glad I’m not losing my mind.

  • Sarah Hackley moderator author
    2 years ago

    AIWS can feel uncomfortable or downright scary if you don’t know what’s going on. I’m glad the article made you feel comforted. Thank you for commenting!

  • Sandy
    5 years ago

    thank you Sarah for writing this. I don’t know exactly how long I have had aiws but i know for past 5-6 yrs and i am now 41. after reading comments here, i googled tunnel vision mine is like tunnel vision. All of a sudden, I see things like tunnel vision, but in a square. It is small and i feel like i am watching it from far away even if i am in the square i still feel like i am watching it far away. it seems like slow motion. i never told anyone until 2 months ago because i did not want anyone to think i want psychotic and in need of treatment or too “mental” to do my job. My neurologist told me it is part of my aura and it is aiws. glad to have a name. yes, reading the “book definition” and understanding what it is in real life is often different. not just for teenagers. i never watched the movie or read the book. i have anxiety and it was too anxious for me as a child. no longer scared of it. peace.

  • LindseyA
    5 years ago

    I am 25 years old and for the past week have been experiencing some symptoms of Alice in Wonderland Syndrome. When i look out a window everything looks small. When i look at my hands they sometimes seem to grow and look bigger. I end up taking Panic attacks when this happens. I’m scared i dont know what to do. I’ve been reading up on this and the more i read the more it makes me think i have this syndrome. Can anyone help me learn to deal and live with this.

  • Katie M. Golden moderator
    5 years ago

    Lindsey,
    Alice in Wonderland Syndrome can be scary at first and very disorienting. Managing your Migraines is the best way to get control of this symptom. Are you taking preventatives? How often do you get Migraines and how often do you have this symptom? How long does it last? It’s possible that you are getting this feeling as a prodrome to a Migraine. It’s possible that this could go away with time, but knowing your Migraine triggers can really help. If you’re having panic attacks when it happens an anxiety med could be helpful.
    -Katie

  • skatoulaki
    5 years ago

    Wow, I never really realized this was a thing! I have had weird feelings similar to the ones you describe of feeling bigger, but I’ve never connected them to my migraines. Now I know! I too have never really mentioned it to anyone because I figured they would think I was nuts. I also suffer from anxiety and am self-conscious, so I attributed it to some strange type of body dysmorphic disorder. This is good to know!

  • Clairie
    5 years ago

    wow, how intriguing, and scary! Thanks much for sharing this. Though I’ve not had a full-on Alice experience, I have had the sensation of limbs not being mine, sense of unreality mentioned previously. With my auras come temp blind spots, making reading really kooky as certain words just disappear when I can see fine all around them. Objects too. Quite unnerving!

  • stacysillen
    5 years ago

    I believe this is also called depersonalization or derealization. And it can be triggered by other things too; I’ve had it during withdrawal from the benzos I was (?!) put on for the migraine.https://en.wikipedia.org/wiki/Derealization;”Derealization
    From Wikipedia, the free encyclopedia
    For sufferers of derealization the surrounding environments may be hard to experience fully.

    “Derealization or derealisation (sometimes abbreviated as DR) is an alteration in the perception or experience of the external world so that it seems unreal. Other symptoms include feeling as though one’s environment is lacking in spontaneity, emotional coloring and depth.[1] It is a dissociative symptom of many conditions, such as psychiatric and neurological disorders, and not a standalone disorder.

    Derealization is a subjective experience of unreality of the outside world, while depersonalization is unreality in one’s sense of self. Although most authors currently regard derealization (surroundings) and depersonalization (self) as independent constructs, many do not want to separate derealization from depersonalization.[2] The main reason for this is nosological, because these symptoms often co-occur, but there is another, more philosophical reason: the idea that the phenomenological experience of self, others, and world is one continuous whole. Thus, feelings of unreality may blend in and the person may puzzle over deciding whether it is the self or the world that feels unreal to them.

    Chronic derealization may be caused by occipital–temporal dysfunction.[3] These symptoms are common in the population, with a lifetime prevalence of up to 5% and 31–66% at the time of a traumatic event.[4]”

  • Sarah Hackley moderator author
    5 years ago

    As I understand it, depersonalization and derealization are similar to Alice-in-Wonderland syndrome, and might even be considered the same in certain respects, but they do have important differences. They are also more frequently seen in people with PTSD and severe anxiety disorders, though they could also occasionally occur with AIWS. I am not a doctor or psychologist, however, so I could be incorrect.

    Warm regards,

    Sarah

  • nurse
    5 years ago

    I was 17-18 when I experienced my first aura with migraine. Though I haven’t experienced the ‘Alice-in-Wonderland’ effect to the extent described in your article, I definitely am aware that there are times that I have depth perception issues, difficulty tracking time, and deficits in propioception (knowing where my body is in relation to my surroundings). As I have learned more about them (auras, migraine) over the years, it causes me to question whether or not some of my adolescent experiences that I didn’t think anything of at the time, were actually this very phenomena.
    My father and older sister have had migraines since I can remember. What happened to them didn’t happen to me, so I counted myself lucky. Among others, my sister was (and still is) very sensitive to smells. My dad’s trigger was stress and prolonged eye concentration (driving long trips).
    Thank God that I had my dad and sister there when I got hit with auras for the first time.
    I believe that day, my trigger was weather and brightness. It wasn’t clear skies or sunny. It was overcast… with a bright white ceiling and humid. Rain was on the way. I had just come back from a run, showered and ate a hamburger my mom made for lunch. I walked outside, looked up at the sky, and it was as if someone shone a spotlight directly into my eyes. That phosphorescent snapshot of my surroundings glowed for a few seconds behind my closed eyelids, and then faded. But after that, I just couldn’t seem to see clearly.
    After some time passed, I began to notice something moving out of the corner of my eye. I would turn my head to investigate, thinking it was a small gnat, but nothing was there. The moment I looked away, there it was again… I turn my head towards it, but nothing was there. This went on quite a while before I realized that there was a disturbance in my visual field.
    It started in my right eye, right peripheral field. It was a colorless squiggly (yes, that’s a real medical term) ;)) that moved. Soon my left eye, left peripheral field was involved, followed by right then left, inner corner, peripheral fields. I thought bad things were definitely taking place.
    This progressed to a total loss of central vision… the colorless squiggly turned into a brown gushing smoke… light at first. The best way I can describe it, is this:
    If you were under water with a scuba mask on near a pipe billowing thick, dark brown clouds of oil… I could see texture in it. A very small sliver of my peripheral fields were clear.. But if I tried to turn my eyes toward the clear spots… that thick “oil” moved with them.
    My vision began to clear in the same order that I lost it. After I could see, crushing, debilitating head pain began.
    I have experienced that type of aura 4 times since the first. For a long time, I thought that’s what characterized a “true” migraine… so I largely ignored all else.
    It wasn’t until I was sent for an emergency head CT (which was normal) and a follow-up visit with a neurologist did I learn about the vast symptomatology and forms of migraine. My doc asked me “do you think any headache that you rate below 10 isn’t a migraine because the pain isn’t debilitating?” She set me straight, and gave me really good info and support.
    Auras can exist in any sensory form… fascinating and scary at the same time.
    Thanks for your dedication to this site! 🙂

  • Sarah Hackley moderator author
    5 years ago

    Thank you for sharing your story! I get the squigglies, too, but I don’t experience the progressive loss of vision you do, though I have heard of others who do. Auras can be so interesting!

    Warm regards,

    Sarah

  • Amie Marie
    5 years ago

    All these years and I never really associated it happening with my migraines. It tends to happened to me when I have had the nag headache, the one that isn’t quite there, but won’t let me sleep, while I am trying to fall asleep. Once I do fall asleep, I end up waking up with a full blown, no holds bars migraine. I also always hid it because it made me sound crazy (even if it was only in my own head). Thank you for sharing!

  • Not Carly Simon
    5 years ago

    Mine isn’t nearly this fun or exciting or fun or exciting as the story you linked. I experience it as being pulled out of myself so there’s a resultant loss of identity. I lose track of who I am and what I’m doing including my own name. Once this happens, it’s usually too late to prevent the migraine, the only thing to do is take Imitrex/Advil/Naproxen/Benedrylland hope they end the headache early with no puking.

    Sometimes I have the perception issues too. I won’t be able to tell how far away cars are or walls will be rippling.

  • Sarah Hackley moderator author
    5 years ago

    Not Carly,

    The experiences are so strange aren’t they? I sometimes feel like I’m not there or something or like a limb isn’t mine. I suppose that’s a kind of loss of identity, so I have a bit of an idea what you’re talking about. Our brains are funny things. Thank you for sharing.

    Warm regards,

    Sarah

  • Katie M. Golden moderator
    5 years ago

    Sarah,
    So glad you wrote about this! I’ve read a lot of posts lately on this topic. So many people didn’t realize it has a name!
    Thanks!
    -Katie

  • Sarah Hackley moderator author
    5 years ago

    Thanks, Katie!

  • anothermortal
    5 years ago

    As I child I experienced this as a child too, but had no idea what the episodes were actually called. The only experiences I can find are about things growing or shrinking, but my journeys down the rabbit hole were always quite different. I’m on the other end of the AIWS spectrum. I dealt with the time perception part of AIWS growing up. When I say “time perception”, what I mean is: everything around me (except me) would be in slo-mo (sometimes for days at a time) & would feel as if I was moving at a lightning fast pace. I also had the experience of everything around me moving extremely fast and just I would be struggling to move through the thick, gelatinous-like air at an exceptionally slow pace. I hadn’t had an episode in over 10 years until last week & I was so terrified that I almost had a panic attack. I had them so often as a kid that it got to the point I could put myself into an episode, it was like I could manipulate it on my own. I could even shake myself out of an episode as long as I didn’t allow it to last over a minute. I look forward to learning more about this, knowledge is the key to overcoming fear, right?

  • Sarah Hackley moderator author
    5 years ago

    That does sound frightening, especially for a child. I feel the same way though: knowledge is essential to overcoming fear. At least when we know what’s happening, we also know it will stop. 🙂 Thank you for sharing your story.

    Warm regards,

    Sarah

  • Dori Fritzinger
    5 years ago

    I get tunnel vision – and the Alice in Wonderland I thought it was only me

  • freyabelly
    5 years ago

    I am so happy to have found this forum! Ive had these mystery sensations since early childhood and continue to have them into my 30s. The most horrifying thing is getting them while driving, the steering wheel gets tiny in my hands, the road narrows and i cannot judge the distance of the car in front of me, almost like I’m looking through the wrong end of binoculars. I often get these after spacing out at a traffic light waiting for it to turn green so i try my hardest to stay alert and not stare at anything for too long. I often wonder if this is some mild form of epilepsy.? Have any of you found relief with medication? I get a similar sensation sometimes at night while lying in bed, but since the lights are out i cannot see the distortions, i feel them. My hands feel like mouse hands and my arms are like giant haunches of heavy meat. I feel a strange spinning fuzzy feeling in my head and mouth, like my tongue is also the size of a mouses tongue in a giants mouth. If this is an aura..what is happening, a migraine? Have you found ways to avoid this? Thanks for being here! I feel enlightened now!

  • Sarah Hackley moderator author
    5 years ago

    Dori,

    I’m so glad I was able to help you see you’re not alone. The strangeness is so much easier to deal with when we know it’s “normal.” 🙂

    Your sister in AIWS,

    Sarah

  • Poll