I arrived at the hospital on Tuesday morning, they started reducing my medication levels fairly rapidly, and the test was scheduled for Friday at 11:00am.
I had one small seizure on Thursday night, barely enough to interrupt the middle of my sentence before I remembered what I was saying. There was another Friday morning where I paused while speaking, the nurse asked me if I was okay, and instead of answering her (I may or may not have been able to in the moment), I just pointed at the button by the bed that the doctors told me to press if I was having a seizure.
Then we got to neuropsych testing on Friday morning and everything kinda went off the rails from there. In the grand scheme of things, it might be difficult to categorize different parts of the experience within a scale of “good — bad — ugly”, given that all of my seizures are providing useful data about their point of origin and what our options will be to affect that specific point to reduce or eliminate future seizures.
During my previous visits to the hospital for seizure monitoring, we’ve used standard EEG testing: the little electrodes glued to my scalp. In those situations, the only seizures that registered during the testing were the big grand mal seizures where everything in my brain would flare up in the process. I got a phone call on Thursday night to explain that the tiny seizure I had, the one that barely affected me at all, was a really useful source of data.
By barely having an effect, that meant there was a flare of brain activity in a very small area. It didn’t expand to the point of affecting everything in my brain, just that one small area, which makes it easier to isolate the area where the seizure originated. (I had pushed the button, so they knew approximately when in the recording to view the brain wave patterns… what I didn’t realize is that the seizure that actively affected my speech for maybe 2-3 seconds actually lasted for 16 seconds from start to finish. Which means that all of the seizures I personally experience is just a fraction of the abnormal brain activity that occurs on a regular basis.)
So the doctor said that if I had a few more relatively minor seizures like that, we could potentially put me back on my medications soon rather than waiting for some bigger seizures to show up on the scans. Well, I knew that sounded good, so I was glad I didn’t have long to wait before neuropsych testing the next morning.
The testing… it could probably belong in all of the good-bad-ugly categories. It was a relatively simple process broken up into four phases. First, the neuropsychologist propped up an iPad in front of me.
Phase 1: name the image that appeared on the screen (zebra, vacuum cleaner, etc.)
Phase 2: say the word that appeared on the screen
Phase 3: repeat the nonsense word that I heard come from the iPad’s speaker
Phase 4: say the word that appeared on the screen
Probably the worst part of the test was Phase 1 because of the self-applied pressure involved. He said that they were basic images, things that I’d know (zebra, vacuum cleaner, etc.), and I just needed to name them. I knew that if I had a seizure, I might not be able to name something simple, so I bore down and focused really hard, trying to make sure that I wouldn’t have any trouble naming anything. And we knew that I was having a seizure when I couldn’t remember the word “funnel.” Or “clipboard.” Or “skunk” or “tiger.” (I think it was while the tiger was still on the screen that the tester asked if I heard him tell me to point at the ceiling. “No.” Did I hear him tell me to point at the door? “No.” Did he actually say those things? All I can say is that in that particular moment, if there were sounds coming out of his mouth, I haven’t the slightest idea what they meant.) So overall, in that first phase of the test, I think there were seven or eight individual seizures.
Things continued in Phase 2 as I stayed extremely focused on being able to reach aloud every word that appeared on the screen. Again, that level of focus probably led to additional seizure activity. And just like in Phase 1, every time the tester suspected I was having a seizure, he’d pause, hand me a sheet with some other images I was supposed to identify, then a sheet with some text that I was supposed to read out loud. The level of aggravation that all of this was causing… it was extreme. “I know all of these words and not being able to say words that I obviously know is really irritating!” Should we stop for a bit? “Nope, let’s keep rolling and get this over with!”
And then we got to Phase 3. Phrase 3… completely different. I was supposed to repeat the nonsense words that played on the iPad’s speaker and had zero problems the whole time. Why? No pressure. No stress about “I need to make sure I say the words that I definitely already know!” They weren’t words, just word sounds, and I had no problems repeating all of them.
Toward the end of Phase 3, someone came into the room with a syringe. In the syringe? Valium. “I don’t need valium to calm me down, let’s just keep going.” But the valium wasn’t for me—it was for my brain. The seizure activity they were detecting with the sensors inside my skull was pretty significant at that point and they didn’t want to push me into having a grand mal seizure, something that would be more detrimental than helpful, so the nurse connected the syringe to the IV in my forearm and started pressing down on the plunger. I could feel kind of an uncomfortable pressure in my arm as more of the Valium was forced into my system… and then I woke up several hours later.
In between those two moments, there was a (thankfully not grand mal) seizure that lasted over six minutes, the neuropsychologist took me through Phase 4 of the test, some people moved me from the chair where I was sitting back to the bed… I’m told I said some things about “pledging my undying love and affection” and “promising to always take care of the dishes,” but given that Phase 2 used single words, I’m a tad skeptical. That said, I haven’t seen any video to confirm or deny those statements, so without some form of proof to the contrary, I may have to make sure we’re constantly stocked up on dish soap.
I’ve spent a lot of time sleeping since we finished testing. Sure, some of that was due to a second dose of Valium administered through the IV, but the experience was extremely draining overall, both mentally and emotionally. But I’m also pleased to report that they’ve since started giving me all of my usual medications at their usual doses. We’ll be engaging in some different kinds of testing on Monday and possibly Tuesday, after which they could remove the electrodes from my skull, then send me home with 15 sutures in my head (one for each electrode insertion point) by the end of the week. Then there’ll be some analysis of the data, discussion about the best way to treat my seizures… and maybe some additional information about undying love and doing the dishes.
Overall, there are still a lot of unknowns about what’s coming over the next few months, but I think about it the same way I thought about what might happen after being admitted into the hospital for SEEG testing: “We’ll know when we get there.”