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.