I had my annual epilepsy appointment yesterday. I had two seizures back in 2014, and I have been on Keppra ever since. You can read about my first epileptic seizure and my second epileptic seizure if you’d like.
I’ve been seizure free about 3.5 years now. I’ve had people ask me when I can go off of seizure medications, or whether I have epilepsy anymore at all. One of the more frustrating things about having an epilepsy diagnosis is how it feels there is just so much that science and doctors just don’t know about epilepsy. Some people have several seizures but then have a long period of being seizure-free, go off of medication, and are fine for the rest of their lives. It technically is possible for epilepsy to go into remission. But why does it go into remission? As far as I can tell, it’s never well understood.
At my appointment, my neurologist said that with me being seizure free for over 2 years, I could try going off of my seizure medication if I wanted. Something I’ve been really confused about is how to make that decision. I explained to her how I wish I knew what my odds of having another seizure would be. For example, if I knew that I had a 90% chance of remaining seizure free while going off of medication I might try it. While if I had a 90% change of HAVING a seizure without medication, I wouldn’t. She said they just don’t have a great way to estimate because each person is so different. She said that if I decided I wanted to try going off of medication, she would set me up with an EEG to see if it was normal or not. I had an abnormal EEG about 3 years ago, but I also had 2 or 3 normal EEG’s prior to that. EEG tests only measure your brain waves during the test. It’s possible to have abnormal brain waves at 9am, and again at 9pm in the same day, but if your test ran from noon to 1pm, it would provide normal results.
Anyway, she said that if I had an abnormal test result then I wouldn’t be able to go off of medication because that would indicate a high risk of seizures. On the other hand, if I had normal EEG results then I could try it, and she would estimate my risk of having a seizure to be about 50/50. She said this wasn’t specific to me, but just in general, if someone with a seizure history has been seizure free for 2 years, and has a normal EEG then they have about a 50/50 shot of remaining seizure free.
A 50% chance of having a seizure just feels high to me. I ultimately decided to just remain on medication. I do wonder if I’m taking medication for no reason, but the idea of having another seizure really scares me. I don’t know what to think about my future. If I remain seizure free for a full decade, would I think be more willing to take that risk? I don’t know. One of the frustrating aspects of having epilepsy is just how much unknown there is.