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My Seizures Are Not Due to Epilepsy — They Are a Response to Trauma
by Jamie Taylor
Updated: Oct. 25, 2021
Originally Published: Oct. 25, 2021
I recently watched the latest installment of my favorite horror series, The Conjuring: The Devil Made Me Do It, and I have to say — this sequel did not disappoint. There’s something oddly comforting about seeing Vera Farmiga and Patrick Wilson navigate spooky, demon-infested basements, their expressions a perfect mix of terror and bravery, which I’ve dubbed “couragified.”
Couragified (adj): “Simultaneously feeling utterly terrified and incredibly brave.”
While I thrive on a good horror tale, my relationship with jump scares is complicated. Each time an exorcism scene unfolds, my body reacts with involuntary twitches and tremors. Despite my attempts to avoid such triggers, I can’t resist a captivating story about malevolent spirits.
You might be asking, “Jamie, why kick off a discussion about seizures with a movie that terrifies you?” The answer is simple: I’ve grown less afraid of fictional horrors because my everyday life can often feel scarier than any horror film. Much like Ed and Lorraine Warren, I find myself still standing strong.
In 2019, I was a new mother to two young children, grappling with stress and isolation far from family support. The weight of unaddressed trauma from my childhood manifested in a diagnosis of Complex Post-Traumatic Stress Disorder (CPTSD), leading to feelings of shame and suicidal thoughts. There were days I believed I wouldn’t make it through, and my body would uncontrollably spasm for hours at a time.
One evening, I collapsed in my family’s bathroom, my body shaking uncontrollably, and I found myself in a puddle of my daughter’s practice potty. It was humiliating and terrifying. What was happening to me?
These symptoms had become all too familiar, and all I wanted was relief. Therapy, emergency room visits, and medication gradually helped, but it took four exhausting years before I finally received a diagnosis that made sense of my experiences. Along with CPTSD, I was diagnosed with Functional Neurological Disorder (FND), which caused the psychogenic non-epileptic seizures I had been experiencing.
As defined by The National Organization for Rare Disorders, Functional Neurological Disorder is “a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals.” It presents a variety of neurological symptoms, such as seizures or limb weakness.
FND, also referred to as Conversion Disorder, straddles the line between neurology and psychiatry, which contributes to the stigma and misinformation surrounding it. Since conventional tests like MRI scans and EEGs often appear normal in those with FND, the medical community frequently overlooks this disorder, leaving many patients feeling invalidated and isolated.
Fortunately, awareness is slowly growing, and it’s becoming clear that FND is a significant cause of disability and distress. It often coexists with psychological disorders like CPTSD. My journey has been fraught with chronic pain, fatigue, and the emotional toll of living with trauma, all of which have fueled my seizures.
Even the Epilepsy Foundation recognizes non-epileptic seizures, noting that 20-30% of people seeking help for seizures may actually have PNES. Many individuals with PNES have a history of trauma or psychiatric issues, which can lead to disbelief and confusion upon receiving their diagnosis.
The cycle of trauma I experienced impacted my physical and mental health in profound ways. Now that I understand my conditions, I’m committed to healing. During a non-epileptic seizure, I remain conscious, often struggling to speak while my body shakes uncontrollably. Sometimes, my eyelids will involuntarily shut, and I’ll find myself unable to open them. The most bizarre part? A persistent frown that won’t go away, reminiscent of Robert De Niro’s expression in Meet the Parents.
Living with CPTSD and FND feels like being trapped in a never-ending dumpster fire. I can’t control the flames, and I’m still figuring out how to escape. Importantly, I didn’t ignite this fire, nor can I stop it from flaring up. However, with the help of cold packs, medications, therapy, and even cannabis, I’ve built a stronger defense against the chaos.
I’ve learned to accept that it’s okay not to be okay all the time. I’m determined to heal as much as I can and share my story with other trauma survivors. No one should have to face seizures alone. So, I continue to confront this inner turmoil with curiosity, compassion, and courage.
I remain couragified.
This article was originally published on Oct. 25, 2021.