Annual Epilepsy Appointment

I was officially a year seizure-free as of November 1st. When I started seeing my neurologist at the University of Michigan I was told they see patients quarterly for the first year after diagnosis. I had to cancelled and reschedule my spring/summer appointment due to vehicle trouble so I only had 3 appointments in my first year. However, I was excited to have an appointment in February that was considered my 12 month appointment because I knew there was a good chance that I would stop going quarterly.

The appointment was really short compared to my past appointments. We didn’t have any test results to discuss and I hadn’t experienced any new symptoms since my last appointment. My neurologist asked if I had no symptoms, which I didn’t so she asked how my old symptoms/side effects were doing. The only real symptom or side effect I have is tremors and at the time they seemed to have gotten better. That was really all that she asked me about but she asked if I had any questions.

I wanted to discuss birth control because I had read that some epilepsy medications can make some forms of birth control less effective. Or in other cases, the birth control makes the seizure medication less effective. So I didn’t want to get on a birth control that would either not work or would make my keppra not work. Thankfully she said my medication (keppra) is one that doesn’t negatively interact with any birth controls so I am able to be on whatever one I prefer.

I also asked what my future looks like in regards to seeing her and medication. She said now that I am a year seizure free and not having any significant issues I will just have yearly appointments unless I were to have a seizure. If I have another seizure then I would make a new appointment with her. I asked if I will be on medication forever. I had been wanting to ask about this for a while but I was afraid of being told yes so I didn’t ask. This time I came in prepared for her to say yes, so that I would just accept that fate. Surprisingly she said “I don’t know’. She said that being a year seizure free is obviously a great thing. On the other hand, I did have the abnormal EEG last spring and at that time I had been seizure free for a couple of months and was medicated. So the fact that my brain was having abnormal waves is concerning. She said some neurologists will tell patients they should stay on medication forever once they have the abnormal EEG, because having an abnormal EEG increases the chance of seizures. However, she said she personally believes in letting the patient choose to try to go off of medication if they have been seizure free with medication for 2 years and get a normal EEG even if they had an abnormal EEG in the past. She said if I were to decide I wanted to try going off medication she would have me do a new EEG in about a year. If that EEG is normal then I could choose to try going off medication. If the EEG were abnormal then I would need to wait another 2 years and try for a normal EEG again.

Getting that answer is a little hard to wrap my head around. On one side, I know that epilepsy remission is possible because my dad had epilepsy for 10 years and then successfully went off his medication with doctors assistance. He’s now been medication free for about 4 years and seizure-free for about 6 years. I’d love to think I could eventually stop medication and just be fine again. On the other hand, taking medication isn’t that difficult and the security of knowing my odds of having a seizure while on it seem to be low because I’ve been seizure free since starting it. So it’s risk vs security I guess. I’m not yet sure if I will try for a normal EEG in a year or not. I’m glad I have several months to think about it.

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