When I was three years old I was diagnosed with epilepsy. I am sure that this was unwelcome news to my parents, who were already dealing with my various other health problems. Anyway, I was put on an anti seizure medication called tegretol xr. I remember first taking it in chewable form then switching to the pills that you swallow.
I took it in varying doses, up to 3 times daily (although usually just once daily) until I was 38 years old. By that point, I had been seizure free for twenty years. The last time I had a big seizure where I had to go to the hospital, I was 18. I foolishly stayed awake for a long time playing video games. Not getting enough solid sleep and flashing lights are one of my seizure triggers.
By the age of 38, after being seizure free for twenty years, I worked with my doctor to wean myself off of tegretol xr. Because I had been told that taking tegretol xr for an extended period of time can be damaging to your liver. It took me about a year but I was able to get off the medication totally.
The doctors did a test where they measured my brain activity while they intentionally tried to provoke a seizure. Luckily, they were unable to do so. I will always have the possibility of returning to have seizures. However, as of 2026, I am three years into this journey and I am still seizure free. Hopefully, I will remain so. I thought I was pretty special, being able to get off my medication. However, I did some research and 50-75% of people with epilepsy are able to come off their medications. I hope this was a straight forward explanation.
Til next time, Tyler
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