Julie’s Story

In February of 2020, I was diagnosed with a brain tumor and luckily had surgery before the pandemic shut down. Many of us with brain tumors have seizure activity; in fact it is often what is the cause of the tumor being found! That was true in my case, yet mine was only visible to someone else for 2 minutes and I could walk and talk through it.

People who have brain tumors are put on Keppra to stabilize the brain before and after surgery no matter what their seizure threshold is. Most of my seizures (when I get them) are focal or absence, and it is frustrating as people LOOK at me and think I am healthy, and lucky that I made it through the first year postoperative with little issues. Keppra and I DID NOT agree with each other. I pushed my oncologist to remove me from it. He did and in May 2020, two weeks after stopping Keppra, my EEG showed no seizure activity. So all clear, no new meds needed.

After a visible seizure on January 3rd, 2021 I had an EEG for one hour which showed post-ictal data. So I was given a 72 hour ambulatory EEG in later February to see if there was/is more activity. It was “inconclusive.” On April 20 I’m headed to an epilepsy monitoring unit 10 day stay. I am really excited about the stay, yet also nervous it will be a period when I do not have much “activity.”

However as I am writing this, I am having absence to focal seizures today. I don’t get that many, but that déjà vu feeling I had once last night and twice this morning with a heavy foggy brain and limbs that feel so heavy! No one would know by looking at me that I’m having seizure activity. Yet I am pretty sure, 95% sure if not higher, that I am right! I know what my body feels like normally, and what it feels like now.