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I had a seizure yesterday.

All of us with TLE say the same thing day after day. I spend a great deal of my time trying to keep from having a seizure. Yoga, diet and an avoidance of other triggers are the weapons in my personal arsenal since anticonvulsants, or AEDs, stopped working for me a few years ago. Sometimes these weapons work, allowing me a few days without a seizure.

Sometimes I have to separate myself from the world and retreat into a dark, cool room to immerse myself in yoga postures and breathing. But just like a Whack-a-mole game, once I knock one thing down, another pops up to take its place. An example is the emotional turmoil that swirls after a seizure.

One of the benefits of not taking AEDs is that I am forced into constant observation of my self. I am always questioning my feelings, thoughts and responses to make sure they are truly mine and not the exaggerated byproduct of a seizure cycle. This becomes interesting when I miss having a seizure, or more correctly, when I successfully avert one. I miss the event and the subsequent pain and fatigue, but I have noticed that I cannot stop the depression and emotional responses, and the inability to focus my thoughts productively.

In the past, when I was in this emotional storm, I was not always aware of its origins. I was overwhelmed by bad or sad memories, emotional pain and loss, full of exaggerated fears, and grappling with shame and guilt. I began to untie these feelings surrounding the seizures, many times imagining I was untying an emotional knot. I worked to compare what I felt at the time to what I knew about myself before the diagnosis.

Once, I had been an energetic person, optimistic and, to a certain extent, a risk taker. I completed projects, artwork and plans with enjoyment. I could also leave bad things in the past. As my TLE got worse, the symptoms intensified and my personality shifted, or rather listed like a sinking ship. The optimism I had always cherished disappeared. Bad memories surged forward at odd moments, replaying as if happening at that moment, in real time, for the first time. Imagine reliving the worst experiences of your life, with the same intensities and same emotions, time after time after time. Welcome to my world.

As I work to gain some measure of control over the physical aspect of the seizure, I realize I also have to gain some measure of control over the emotional component. And, just when I think I have a handle on things, that I’m being calm and thoughtful, I get ambushed by emotions.

The sense of shame is a major tip off that I am experiencing something that is not real and probably the product of brain chemicals released by an electrical surge. The feeling of shame tells me what I’m experiencing is not real or normal for me.

Now, when I have a seizure, or when I successfully avoid one, I watch for the emotional shift, the sense of shame and the feelings of hopelessness. I watch for the darkness and I ruthlessly move to stamp it out.

I was so grateful when I read an article about seizures from last year’s international epilepsy conference in Italy. In What is Epilepsy?, which I have referred to many times in this blog, Gordy Slack explains about how epilepsy is not just seizures and it cannot be erased from the person simply by administering an anticonvulsant. How wonderfully true. It is comforting to know that researchers are starting to acknowledge this emotional struggle, just as they recognize the electrical impulses on an EEG.