Knowledge Is Power When Seizures Come On the Hour

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Sometimes, the bad stuff teaches you about the good stuff.

This past weekend, I attended the CHADD online conference. CHADD is the primary ADHD educational and advocacy organization in the U.S. If you research this disorder, counsel it, coach it, parent it, or have it, you know about CHADD. Or I hope you do.

I’m a certified neurodiversity coach, and this past November, I felt too lazy to drag myself to California from Virginia for the in-person CHADD conference. I settled for the online version in March. I envisioned myself cozy in different spots in my house, with laptop, note paper at hand, sipping tea, nibbling snacks, and geeking out on the presentations, morning to night over the weekend.

It didn’t quite go like that.

Instead, last Tuesday, I started on a cycle of focal onset aware seizures. By Thursday, they were coming every sixty to ninety minutes or so. Going into the weekend, I was dragging, with no appetite, in a state I’ve never felt before. It was a combination of buzzy, fatigued, and full-body slump. I could think and work, but I was not myself.

On Friday, I was able to see my neurologist, who I see because of the only other bout of seizures in my life a year ago, which meds eliminated from my system. The problem was that the meds had too many side effects, so I went off them. The seizures saw the opportunity. “We’re baaack.”

My doctor prescribed new meds, but they wouldn’t be available for several days. Suddenly, I had a revised plan for my online conference — cozy up with laptop and sip tea, but barely nibble, seize periodically, feel slammed, and exist reclined for hours.

That wasn’t too shabby, given the circumstances — and this statement is key, so let me explain.

I had five options for presentations each hour of the conference. This is the trickiest part of a conference — too many cool topics, so little time. But I whittled the options to what I thought would best serve my clients.

Then, I added one presentation just for me, for my own ADHD management, which often regards emotion regulation, namely anxiety and stress.

For someone who felt like a fuzzy-buzzy hell, it was a big win to listen, take notes, and be inspired. But the seizures kept coming. Friday dragged on and I started to feel bummed that I had days of this in front of me. I went to bed early, hoping for the best.

In the middle of the night, I woke from what I suspect was a nocturnal seizure. Crap, I thought. Now this is going to happen while I sleep? A feeling of existential dread filled my torso. I was floating, a galaxy’s distance from my human form, from safety and hope. That’s when it hit me.

I have choices for what to think right now. I have choices for how to feel. This came directly from what I’d heard at the conference.

It’s true, sometimes we don’t have much time to choose emotion. When we get hit by a piece of meteor falling from the sky, we’ll feel an emotion very quickly. Likely, fear and surprise. But lying there in my bed at 3 in the morning, I had all the time in the world to choose to feel dread or feel safe. It all depended on how I’d decide to evaluate the moment.

I could think the seizures were a terrible thing. Or I could think that while they were undesirable, everything was generally okay. Focal seizures are not much of a danger if controlled. I’d get on meds soon. I could even welcome this brief period as a mini vacation, a time to chill out, lounge on the couch, and get some writing done. In other words, not too shabby in the main scheme of things.

I reminded myself that I’d read about this middle-of-the-night feeling of dread. It’s a common experience, and others were likely feeling dread at that very minute somewhere. I had company.

I also remembered my readings from Lisa Feldman Barrett regarding her theory of constructed emotion. In a nutshell, she posits that the brain constructs emotion by measuring how well current stimuli compares to what it already knows about similar stimuli. It then predicts the most likely response for the moment. This works well for the brain, except when what it knows about the past doesn’t apply to the present, but it goes with the emotion anyway.

During Covid, my youngest son was having trouble with his girlfriend. They eventually broke up, and this became the first romantic breakup one of my kids struggled through. I was sad for my son, who was hunkering down in a college apartment far from my ability to comfort him.

I’d walk during those days and listen to music. For whatever reason, an Ed Sheeran song came to represent my son’s struggles, and I’d start to cry every time I heard that song. Upon hearing the first few strums of music, my past data indicated this song made me sad. I’d predict it was a song that required sadness as a response — so, I’d cry.

Years passed, and still, I’d cry every time I heard that song. My son was well past that first relationship and thriving. Covid was gone. Life was back, yet I cried desperately at that song. My brain heard the song and rushed straight to “I am sad.” But I wasn’t sad!

It took me a while to apply what I learned from Barrett’s theory to this song, but the day came. I was walking, and the song began to play from my phone, so I started to cry as usual. Then I recalled what I knew. I told myself, “Steph, this song doesn’t mean you are sad right now. It’s a faulty prediction.”

My tears stopped on a dime, and I haven’t cried at that song since.

All these thoughts passed through my mind in bed at 3 am the other day. Suddenly, I pivoted.

That feeling of existential dread was a predicted response to waking when I should have been sleeping. I’d felt it many times before. It’s reasonable to say it’s not fun to wake in the middle of the night, but the world isn’t ending — at least, not yet.

Within seconds, I watched the dread fade into darkness.

I fell back asleep and woke to a new mindset the next day. I decided I’d try to take the seizures more in stride. I’d get things done when I could, and it would be a semi-vacation of lounging but also writing, which is always fun for me.

While the seizures still came and my appetite was gone — so no fun snacking to be had — my view towards the day greatly improved. I was me again, if a little wonky.

This all came from things I’d learned in the past and was learning at the conference — mindfulness, emotion regulation, and reframing.

Knowledge is power. It’s especially fortifying when it teaches us how to manage ourselves, and there’s a mountain of information to help us do it. Thankfully, I’m on the mend. I started the meds. The seizures seem to have wafted into the past. Plus, I have a souvenir of insight from the week that’s all mine.

I’m grateful to those who work hard to research and develop life-changing information. But, more so, I’m grateful I’m interested in learning it. Now, I have the gift of an opportunity to share what I’ve learned. There’s nothing shabby about that. As one of my clients likes to say, “Let’s do this!”

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Hope you're well, friends.