My Seizures Don't Come From Epilepsy — They Are A Trauma Response

I just finished the latest installment of my favorite horror franchise, The Conjuring: The Devil Made Me Do It, and can I just say — this threequel did not disappoint. I have a weird little soft spot for watching Vera Farmiga and Patrick Wilson shuffle around creepy, demonically-charged basements together with facial expressions that can be only summed up with a brand-new word I’ve created – couragified.

Couragified (adj): “Feeling equal parts scared shitless (terrified) and brave as all hell (courageous).”

It should be noted that while I adore a well-told scary story, I’ve got a love/hate relationship with being jump-scared by horror movies. It’s mostly because every damn time one of those exorcism-type scenes pops up, my body starts to respond with a series of muscle twitches and tremors. But try as I might to avoid them, I’m a total goner for a good spooky story about some bad spooky spirits.

I know, I know — you’re probably wondering, “Lindsay, why would you start all of this seizure business off with the celebration of a movie that clearly triggers the fuck out of you?”

It’s pretty simple, actually. I’m just no longer too afraid to watch movies about evil, dark entities. Because living in my body has often felt more scary than the scariest of scary movies. I guess you could say I feel as couragified as Ed and Lorraine Warren, and I’m still fucking here.

Back in 2019, I was a struggling new mom to two young kids living far away from any family support. The stress and isolation accompanying my daily life totally consumed me. And the unexpected physical flare-ups of a new diagnosis, Complex Post-Traumatic Stress Disorder from ongoing childhood trauma, had built an avalanche of shame, suicidal ideation, and self-harm that was collapsing on top of me.

I remember days so difficult I honestly didn’t think I’d survive them — and some of those rock-bottom days left me wondering if I’d just be better off disappearing completely. My body would randomly startle and shake with muscle tremors and spasms that I had zero control over, and the physical chaos would last up to two hours. I hadn’t begun taking medication yet, so I felt like a raw wound constantly battling the elements of my life.

On one particular evening that year, the shaking got so bad that I completely wiped out on my family’s bathroom floor, knocking into my daughter’s nearly full practice potty. As her pee created a gross puddle underneath my flailing body, I laid there ashamed, terrified, and entirely unable to stop. What in the actual fuck was going on with me?

I hated how painfully familiar these symptoms had become in my life, and all I wanted to do was heal them. Sure, therapy has helped a bunch, emergency rooms have been utilized in full, and meds have saved my life. I haven’t self-harmed in a year, and I no longer feel like an epic burden to everyone around me. But it would take me four exhausting years before I’d experience the true relief of receiving some concrete reasons for why I shake uncontrollably.

After battling these involuntary muscle spasms for what felt like an eternity, I was transported to the hospital this month while enduring a 90-minute episode of shaking. And I finally received the diagnosis that would explain what I’ve been going through. In addition to CPTSD, I’m also living with Functional Neurological Disorder, and the shaking episodes I’ve been experiencing for so long are called Psychogenic Non-Epileptic Seizures.

According to 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, rather than a structural disease process such as multiple sclerosis or stroke. FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures.”

Commonly called Conversion Disorder, FND is a condition that toes the line between neurology and psychiatry — and this is a huge reason why there is so much stigma and a lack of proper information about it. Since typical MRI brain scans and EEGs don’t often exhibit unusual activity in individuals with FND like they would with epileptic seizure activity, the medical community hasn’t seemed particularly keen on giving this disorder the spotlight and due attention it so deserves. For a ton of years, a ton of folks living with FND have faced medical bias, a lack of belief in their involuntary symptoms, isolation due to being too damn afraid to seek the help they need, and a running theme from medical professionals that essentially says: “It’s all in your head.”

Which is infinitely more fucked up than having FND in the first place.

Thankfully, times are (sorta kinda) changing for the better, and this leaves me cautiously optimistic. The truth is slowly, yet firmly, becoming well established that this disorder is not only a major cause of disability and distress, it can also coexist with chronic pain, fatigue, and — you guessed it! — trauma-based psychological disorders like CPTSD. My own personal journey with non-epileptic seizures has been rife with both chronic pain and fatigue, along with immobility and paralysis. Not to mention the mental and emotional aspects of living with the CPTSD that became a catalyst for my seizures to occur in the first place.

Even the Epilepsy Foundation has dedicated an entire section of their website to non-epileptic seizures, since it’s been estimated that PNES are diagnosed in 20 to 30% of people who go to epilepsy centers for what they believe to be epileptic seizures. About 4 out of 5 people diagnosed with PNES have a history of psychiatric problems, and there is usually a history of abuse tied to the diagnosis.

“Understandably, many people’s first reactions upon hearing they have PNES, and not epilepsy, is one of disbelief, denial and confusion,” the Epilepsy Foundation’s website states. “That is because mental health issues come with highly stigmatized labels such as ‘crazy,’ ‘insane,’ etc. These stigmas are embedded in our language and even more deeply in our unconscious belief system. However, people with PNES are not ‘crazy’ or ‘insane.’ Many are victims of trauma. Their recovery from the trauma, as well as the seizures, depends largely on their ability to overcome the stigma and follow-up with a mental health professional.”

In other words, the generational trauma cycle I grew up in royally fucked up my physical and mental hard drive. And since I didn’t even know I was living with either disorder until recently, I’ve got a lot of catching up to do so that I can properly heal.

When I experience a non-epileptic seizure, I am completely conscious. I often stutter or blurt out gibberish-like words in an attempt to speak. My arms and legs do most of the shaking, and every once in a while, my eyelids will close and be unable to open back up for a short time. But the most ridiculous part? The forced frowning that literally refuses to turn upside down. This specific symptom can last up to a half hour, and it makes me look like Robert DeNiro in Meet the Parents, I kid you not.

All jokes aside (and my goodness do we need a few jokes splashed around when mucking through a topic like this) — living with CPTSD and FND has often felt like sitting inside of a dumpster fire that just keeps reigniting. Except that I can’t control the flames, and I certainly haven’t figured out how to fully escape to safety just yet. More importantly, I didn’t cause the fucking fire in the first place, and I’m certainly not causing it to repeatedly jump-start. Cold packs, meds, therapy, and even cannabis have created an exponentially stronger flame-resistant armor, which I’m thankful for. But all of this is still so hard to deal with.

And that is okay. Because I have learned to be okay with not always being okay.

Despite not having all of the answers or the promise of total recovery just yet, I’m bound and determined to not only heal as much as I can, but to also share my story with as many trauma survivors as humanly possible. Because no one — not a single human being — should have to face seizures of any kind alone. And so, I keep stubbornly showing up for all of this inner and outer pandemonium with as much curiosity, willingness, and self-compassion as I possibly can.

I keep being couragified.