I was a young child living in London when I experienced my first peculiar episode. As I lay in bed, trying to fall asleep, I suddenly felt a sensation of my bed growing enormous while I felt tiny and paralyzed. This occurrence happened multiple times, and when I mentioned it to my mother, she brushed it off as a mere dream. But I couldn’t help but wonder why the same dream kept recurring and felt so vividly real.
There were also moments when I would faint. One time, it happened during my English literature O-level exam, which was quite embarrassing. English lit was one of my favorite subjects, and I should have received a high grade. Instead, I ended up with a D and wasn’t allowed to retake the exam.
When I was 16 years old, I was finally diagnosed with temporal lobe epilepsy, also known as “absence seizures.” However, the specialist couldn’t explain the more bizarre manifestations of my condition. Besides zoning out for a few seconds, I would also feel disconnected from people around me, as if I were watching myself on TV. There were times when it felt like my hands and arms were expanding, causing the room to close in on me. It was as if my brain was divided into two sides, arguing with each other. The rational side would tell me that my hands were not massive and that I could overcome this episode. But the other side would insist that my hands were huge and unusable. This would lead to an increased heart rate, difficulty concentrating, and perspiration.
After a few minutes, everything would return to normal, but these episodes sometimes occurred at inconvenient moments. Once, it happened when my boss asked to see a work-related Instagram post on my phone. As I felt my hands growing, I couldn’t touch the phone screen because my fingers seemed too big. I couldn’t even speak. Fortunately, my boss’s phone rang, and she walked away, giving me time to wait for the episode to pass.
These episodes seemed to happen more frequently during times of stress, such as when I was planning my wedding or when my father had a stroke. I tried not to let it impact my life too much, although I occasionally missed my stop while traveling on the tube. However, in 2016, at the age of 48, I met a new specialist who didn’t dismiss my descriptions of the more bizarre symptoms.
He informed me that what I was experiencing was called Alice in Wonderland syndrome, or Todd’s syndrome. It is a rare neurological disorder that temporarily distorts one’s perception of their own body or the world around them. He explained that there were several possible causes, including epilepsy. This diagnosis was a relief because it validated my experiences and assured me that I wasn’t alone.
Since then, I’ve discovered a chat group on Facebook dedicated to this condition, which has helped me gain a better understanding of it. I rarely discussed my diagnosis with others, as some didn’t believe me and even laughed it off. However, since my epilepsy medication was adjusted in 2019, I haven’t had any further episodes. I’ve learned to live with the possibility of their return, but I feel more prepared this time.
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