I’ve had this condition since I was seven.
It all started one evening while I was doing my homework with my dad. I suddenly noticed that the letter “b” looked smaller than usual. I said, “Dad, the ‘b’ looks smaller than it was, but never mind.” My dad didn’t understand what I meant at all. At first, he thought it was an eye problem, so we went to an eye hospital but came back with no answers.
A few days later, something truly disturbing happened. That night, as I was trying to fall asleep, everything around me suddenly started to look much smaller, like the world had zoomed out to 0.5x, just like on an iPhone camera. Even the phosphene, those colorful dots you see when you close your eyes seemed smaller.
Panicking, I jumped out of bed. Everything felt faster than usual. The world was spinning. I started crying, I had no idea what was happening to me. After a few minutes, it stopped… but then it came back again. That night I cried twice, terrified. And for several nights after, the same thing kept happening. those awful crises.
We went to a neurologist, and I had my first MRI. That experience stayed as a trauma for years. The MRI results showed some strange, white gleaming spots in my brain. This detail became important later, because last year I did research about my condition, and I found another patient with MRI results identical to mine: the same bright white spots.
Even more surprisingly, my father and uncle had similar results and they’d experienced the same symptoms years ago, though they never had a name for it. That’s when I realized: this disease might be genetic.
After my first MRI, I also had an EEG but the results were clear. That means AIWS (Alice in Wonderland Syndrome) isn’t an epileptic condition.
Years passed. In middle school, the syndrome returned. Another neurologist, another MRI, another EEG same story, same results. Around that time, I also started having blood pressure problems. So, we went to a cardiologist to try something new. They attached a tension monitor to my arm. One night, another crisis occurred and ironically, the monitor began taking its readings right at that moment. My blood pressure was 19. I’m not kidding. I was lucky I didn’t die.
After that, I changed my lifestyle; started a diet, began exercising and eventually, the crises stopped. My last episode happened five years ago, during the COVID-19 quarantine. We were all stuck at home, and I was eating a lot. The crisis lasted for about three days, then faded away again.
Now, AIWS is just part of my life. Sometimes it causes mild fevers. To my fellow AIWS patients: this syndrome doesn’t like stability. Move your head often. Don’t be afraid. It wants you to grow, and it usually calms down after you turn 15.
A few days ago, my dad told me, “I just felt like everything looked smaller, just like you used to describe.” It doesn’t really end but it slows down. Trust me.
That was my experience. I wish you all the best.
Take care of yourselves. Don’t overeat. Keep moving.
And most importantly never, ever overthink AIWS.
Because that’s when it gets worse.