Sparky was switched to active mode on December 5th and my appointment to make the first round of adjustments is on March 12th, so I’m slightly past the midway point. As expected, I’m still having seizures. Not as expected, my seizures have been changing.
The first thing I should mention is that I’m still using the monitor I described back at the end of October. I should have known that would be the case—how are they going to know what kind of adjustments to make if there’s no data showing how effective the RNS has been? So scanning my head on a consistent basis is going to keep happening as long as said RNS device is operational.
And I apologize for not writing a blog entry each time I had a new type of seizure, but life happens and the blog isn’t always my highest priority. As a result, I don’t remember when these seizures happened and this could be a significantly longer entry.
The first one probably concerned me the most. I could tell I was having a seizure—as I was reaching for the magnet (yes, I’m still using that, too), I thought about something really important that I needed to tell people as soon as I was done swiping it over my head.
When I was done with the magnet, I tried to remember what that really important thing was, but it was gone.
“Oh no… I remember something like this happening before. This was like those ‘Eureka!’ moments during SEEG testing.”
I sent a message to Dr. White to ask if the electrodes that were now actively sending little zaps into my brain were in the same area as the electrodes causing that same effect during SEEG testing. The response?
“It is likely a part of that seizure network- so at least very close to the location of the strip and the depth electrode.”
Mind you, this was just a day or two after my appointment to switch the RNS device to active mode, so now I was wondering if I was going to having “Eureka!” moments every day or two until my next appointment.
Thankfully, that was the only time it happened. The effect of the other seizures have been more of the “What are words?” variety.
Except the time when I was at a family brunch and I could feel the seizure starting. Instead of being unable to understand words for 30 seconds, I spent the next few minutes describing my seizures to my niece and nephew. When I was done talking, my head jerked suddenly—that’s how I knew the seizure lasted so long.
At that point, I was wondering if my seizures were changing so that instead of 30 seconds at level 4, they’d last for 2 minutes at level 1. And no, of course not. That would be way too predictable.
I’ve had a few that were pretty similar to those 30 second level 4 seizures. Same old, same old… but then there were two that hit hard and fast.
That’s not to say that they were painful. The first happened when I was walking the dog. Everything was normal, then BOOM. My head jerked and… it was like if someone suddenly threw a bucket of cold water in my face. Shocking and slightly disorienting, but then it was done.
I knew I was supposed to do something at that point, but it took a moment to remember the thing was swiping the magnet over my head. (Like I said, it was disorienting.) Thankfully, I was able to reach my right belt loop with my left hand to grab the carabiner with the magnet—I was holding the dog’s leash with my right hand and he was too busy pulling on the leash for me to use that hand.
Then just a few days ago, I had one of those extended on-off seizures (thankfully, it didn’t last as long as the others like it). I wasn’t having a conversation or trying to read or write, so it wasn’t as obvious that I was having a seizure.
However, my wife Teresa was in a nearby room… I think she was scrolling through Instagram on her phone. I could tell something was happening because I would have a thought, then a second later, it sounded like the audio on her phone was repeating the same words I just thought. And then the thought was gone and I had no idea what the words had been.
So to quote Teresa’s favorite word, I’ve had a plethora of different kinds of seizures since the RNS device became active. It seems like the frequency and intensity of my seizures have decreased, so I’m pretty sure that it’s working. As for the different kinds, well, let’s hope that stops when we increase the power coming up in March. If it doesn’t and my brain starts misfiring in new and unusual ways, I’ll try to do a better job of writing new blog entries as they happen.