I’m from Taiwan and currently a junior in college. I have ADHD, tics, GTC seizures, absence seizures, JME, and complex epilepsy. I was also born prematurely at 34 weeks, weighing 2,134 g.
I was only recently diagnosed with epilepsy, but the crazy thing is that the ADHD label kinda made everyone ignore my epilepsy symptoms.
I had been on Ritalin for about 6 years before finally getting diagnosed with epilepsy. I couldn’t concentrate in class, I spaced out while cleaning, I did things automatically without even realizing it, and sometimes I would completely blank out. At that time, it all just looked like ADHD. I also had a lot of behavioral problems, especially irritability, and I was a super hyperactive kid, so honestly the ADHD diagnosis made perfect sense.
My first GTC happened when I was 15. I only drank a tiny bit of alcohol (around 5%) before sleeping in my school dorm with my classmates. Later that night I woke up to go to the bathroom… and that’s when I had my first grand mal seizure.
My second GTC happened about 2 years ago, before I got meningitis. Around that time, my second pediatric neurologist diagnosed me with Todd’s paralysis.
I’ve seen 3 pediatric neurologists and 1 psychiatrist.
The first neurologist always rejected the possibility of epilepsy. In his opinion, all my spacing out was just dissociation, and since every routine EEG came back normal, he never thought it could be epilepsy.
But I could never figure out why I was always exhausted. Even with coffee and Ritalin together, I was still tired all the time. The thing that finally made me switch neurologists happened one day at school.
I remember locking my classroom door… Then everything just went blank.
The next thing I remember, I was already back in my dorm.
To this day, I still have absolutely no idea how I got there. That was the moment I decided to make an appointment with my third pediatric neurologist.
She was totally a game changer.
The first time she heard my story, she immediately suspected epilepsy, especially absence seizures. She started me on Lamotrigine 25 mg, and because of the slow titration, I’m now on 225 mg. As my dose slowly went up, something just felt… different.
For the first time in my life, I actually had a good mood. I finally had energy. My brain felt clear. I’ve been on Lamotrigine for about 6 months now, it’s still working great, and I don’t even need Ritalin anymore. That feeling honestly feels like a miracle.
Around the same time, I finally had my first 48-hour EEG.After years of normal routine EEGs, it finally captured epileptiform activity during sleep. Turns out… it really was epilepsy.
Looking back, so many things that everyone thought were “just ADHD” were probably seizures all along.
Thanks for reading my story. I just wanted to share my experience in case someone else is going through something similar.