I finally had my first appointment to adjust the settings of my RNS device yesterday. I know it was working to some extent—there’s been some variety to my seizures since it was switched to active mode—but when it’s set to an extremely low level, “to some extent” means “just barely.”
My wife and I met with Dr. White and a representative from Neuropace, we reviewed data from the last 3+ months, then increased the milliamps slightly. (Every 3 months, it’ll get turned up a little more until we reach a point that’ll hopefully prevent all of my seizures without the side effect of smoke coming out of my ears.)
Seeing the data was actually pretty interesting. The rep had a tablet showing brain activity where the electrodes were placed at various times during the day. (She didn’t show us every time that the RNS device became active because it’s common for that to happen hundreds of time per day.) The timeline would look normal, then the spikes of activity would start getting larger. After about two seconds, the lines turned blue and the spikes got really big in a specific pattern when the RNS device started sending pulses of electricity to the electrodes.
The appointment lasted for about an hour overall because I spent a lot of time describing different seizures I’ve had since the device started working to prevent them. So no, it hadn’t prevented them up to that point. And no, it’s still not preventing them yet—it was turned up in the morning and I swiped the magnet over my head last night.
I had some other concerns last night. Not to brag, but I use a Sodastream to make a number of different flavors of carbonated drinks on a pretty regular basis. I use the same bottles for certain flavors, so after a week or two, you can smell some flavors pretty distinctly. Recently, I started putting peach mango in one bottle and use another to switch back and forth between two flavors, so it’s easy to tell which one is peach mango.
At least it was easy to tell which one is peach mango. Last night, I picked up those two bottles, unscrewed the caps, sniffed one, then the other, then the first, then the other… the smell wasn’t right in either one. Honestly, it really didn’t matter which one I used—it wasn’t going to change the flavor—so I picked one and used it to mix up a “one of two flavored” drink.
Thankfully, I opened up the cap of the empty bottle this morning and could tell it wasn’t the peach mango smell, so my nose was working properly again. I’m not sure if this’ll be an ongoing issue, but at least I’m not turning into my dad (he had a sinus infection as a kid and lost his sense of smell entirely).
So what are the next three months going to be like? Who knows? But I’m assuming that my seizures will continue to change, hopefully for the better, and then we’ll see what happens when Sparky gets tweaked again.
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