The Insecurities of Living With Psychogenic Non-Epileptic Seizures

Sometimes I can go a month without “one,” but some weeks it’s every other day. When I have these non-epileptic seizures, I am not aware of it, nor do I remember what’s happening around me. I do know when I have one because of how I come out of it. On a positive note, I do get warnings so I can lay or sit down immediately. This is where the insecurities seep in.

I have been living with psychogenic non-epileptic seizures (PNES) for two years. When they first started I had no idea what was happening, nor if I was “crazy” since the word “psycho” is in there.

Why? Imagine, doing “normal” every day stuff, like let’s say grocery shopping. Now, I am already making myself vulnerable, just by going inside the store due to the lighting because it agitates my post concussion syndrome symptoms. I can’t move fast and I have to take my time. “Go slow, very, very slow.” I try to go as quick as I can, but I just can’t think well in all that sensory, so I tend to take a long time, even for a couple of items.

I have stomach issues and am allergic and very sensitive to certain foods, so this forces me to read every label, which isn’t easy to do when you have had multiple head injuries. I take breaks. Medicate before, during, and after. Use mindfulness. Use distress tolerance skills when needed. Take more breaks. Then when I survive the grocery store there is that second part of the trip – that bringing the bags inside the house and emptying them entails.

But what if I do get that feeling? The last place I want to have a spell is in public! If I get that feeling, that aura as if I might faint, or have a non-epileptic seizure… will I catch it in time? Will I hit my head again? The anxiety is uncontrollable and rightly so, it’s scary! So what do I do? I sit down. It could be in the middle of the aisle, or a bench nearby if I’m lucky. And it is very, very scary. Especially if I go alone. So I sit and wait, hoping I caught it in time. And I only go when I know this is a “good day” that way I won’t trigger an episode. Plus, having fibromyalgia I am told to push myself, so on “normal pain days” I do these adulting errands.

Do I get looks? You betcha! Did I care? I used to. I used to be so afraid of peoples pity, I’d sometimes get into worse trouble. I no longer care what people think when it comes to putting myself first. I do what I need to for my body. However, my insecurity can also be met with kindness. People ask if I need anything. I briefly explain what happens. I could say, “Oh no, they’re pitying me!” Instead I now think, they are just concerned, or they don’t know what to do, but all they want to do is help.

When I come out of a non-epileptic seizure my eyes are open, my chest is beating uncontrollable, my breath is labored, and if I didn’t already have a severe migraine, I’m having one right after this. The plan of sitting down was implemented when I kept having undiagnosed non-epileptic seizures. Before I learned this technique of sitting down immediately, I ended up falling a lot, over dozens of times in the last three years. I also had to stop driving for a period of time, and most of the falls resulted in concussion after concussion. There wasn’t a doctor or therapist in my state who had experience with PNES when I was finally diagnosed. I just recently found a therapist that takes my insurance in my state, but it is 45 minutes away and I am having a hard time getting there. I mean I can barely do a trip to the grocery store… and if I can’t bring myself finding transportation isn’t easy.

Three years ago, this month, I was diagnosed with a severe concussion. This was the physical trauma that lit the fire to PNES. All the past emotional trauma I had been through throughout my life had finally caught up to me. Having post-traumatic stress disorder diagnosed at 16 following a sexual assault, I flourished by graduating “summa cum laude” in undergraduate and graduate school. Regardless of this resilience, only six months after obtaining my masters was when I had the head injury that changed my life, and not long after the PNES battle began.

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