Seizure Diaries: Setting the Pace

Hey, Seizure Followers out there,

Have you noticed that the fall of 2017 has been a lot warmer than usual? In southeastern Pennsylvania it has been about 5 degrees above normal each day. We are justr now (the first week in December) hitting the freezing mark overnight and we had our first snow. I don’t know if my health issues are related to the weather, but I have a few things to report: 1) I had the flu, 2) I contracted Pinkeye, and 3) my seizures have changed!

Since my medical condition is unusual, some doctors have labeled me as “A Unique Case with Epilepsy.” The company that makes my implant, NeuroPace, Inc., has been sending a company representative to my doctors’ visits. While unnerving to have strangers in the room with me, I am getting used to it.

For my whole life I have been living with a silent killer – my brain. The deformity in my right hemisphere (agenesis of the corpus callosum) has been compounded by an overlaying bundle of spinal fluid on my left hemisphere (arachnoid cyst). For some reason these brain patterns waited quietly until I was in my twenties to go haywire. The neurologists say my faulty hemispheres were waiting to strike, since I was born. I am now 53 years old, so my brain unconformity has been screwing with my neurons for over 30 years. Let’s just say that with all of that time to mess with my brain waves, it has taken a long time to get an implant to set things right. Swallowing my pride, having a NeuroPace observer in the doctors’ office is no longer a big deal to me, as long as I get better.

NeuroPace implant

There have been two positive changes over the past few quarters, if you could call each change a plus: 1) the types of seizures have changed and 2) the number of seizures has lessened. More specifically I still have the three types of seizures: Petite, Absence and Gran Mals. Now I have another type of seizure, called Focal Seizures, that have been added to my plate. Focal Seizures, which I had never experienced before, are generally shorter and less severe. They last from 10 to 20 seconds and are not as bad as the other three types! Over the last few quarters, the majority of my seizures are Focal Seizures. Looking at the number of seizures, I am down from over 90 seizures a month (about 3/day) to about 50 (fewer than two a day) on average. My doctors and the NeuroPace rep are almost as happy as I am to see both the number of my major seizures decrease and my “total time in a seized state” go down.

I am also noticing that the NeuroPace implant is starting to gain control over the seizures, when they strike. I still get the occasional Gran Mal Seizure or two — they really throw me for a loop. It seems to take the implant awhile to recognize the severity of the big ones and take effect!

One other change is my own check-up regime. Now I am seeing the neurologist once every two months instead of monthly. That frequency changed in December and I see that as a good sign. The best Christmas present I could get would be for the NeuroPace implant to take complete control of the seizures! I have that change on my wish list for the next few quarters. What a blessing that would be for 2018!


Charlie Hooper