How I Recovered from a Disorder I Had Never Heard of – Psychogenic Non-Epileptic Seizures
You know you have a problem when it becomes routine to awaken to vaguely familiar faces, when you become accustomed to people hunched over you, brows furrowed, eyes frantic, trying desperately to coax you back into consciousness. The first few moments of processing, you think you’re dreaming, or maybe dead, but then it hits you, “Crap. Another seizure.” At my worst, I averaged about ten a week; collapsing at grocery stores, home, work, church, and even the public library. For a time, it seemed like every square inch of tile and carpet in town was graced with my presence.
The seizures began in September of 2016. Two months prior, I started my first teaching job. Perfect timing, right? I tried medication after medication with the impression that I was having epileptic seizures caused by electrical activity in my brain. Though I never had a seizure during an EEG and no activity showed on the scans, doctors were convinced that the nature of my seizures was epileptic. The brain is still a mystery to medical science and to me, so I swallowed what I was prescribed and waited for the convulsions to cease. They didn’t.
By the time Christmas rolled around, I had changed medications six times, endured two EEG’s, a cat scan, an MRI, and boo coos of bloodwork to little avail. Bruises adorned my arms at every possible vein entry. The side-effects of the medicine and the exhaustion from the daily onslaught of seizures had kept me chained to my bed for three months. I lost fifteen pounds because absolutely everything tasted metallic and acidic with the medicine I was forcing down every eight hours. I was told to eat less sugar and drink less soda, that maybe there was mold in my classroom, or that maybe my seizures were from listening to my headphones all the time. People meant well, but no one had definitive answers.
I had an appointment scheduled two days after Christmas at Duke Hospital, to stay overnight and be monitored constantly by an EEG machine and a cluster of cameras, all from unflattering angles. Doctors were hoping to catch me in the act, eyes rolling backward, limbs flailing, body seizing; the whole thing. Then, and only then, would I get answers.
The morning of the appointment, my dad and I loaded up our truck and used Elton John’s Greatest Hits to fill the silence of the two-and-a-half-hour car ride to Duke. Upon arrival, I was poked, prodded, and interrogated by countless nurses. Then we ordered trays of hospital food, played Rummy, listened to the music channels, and waited, waited for me to have a seizure. And the next day, around 2 o’ clock, we got what we were waiting for.
After the seizures I was pumped with sedatives that kept me asleep for the better half of the afternoon. When I woke, my dad assured me the doctors would be in to talk to me in a few minutes. A few minutes became a few hours, and finally a doctor rapped on the door, shook my hand, and started rambling at 90 miles an hour. “They are sometimes referred to as pseudo-seizures,” he claimed. No. That’s wrong, I thought to myself. If there is one thing I had done for the past three months, it was read. I had read novels, plays, cereal boxes, and countless articles about seizures, despite my best intentions to steer clear of WebMD. In my research, I found several articles about Psychogenic Non-Epileptic Seizures. Doctors do not use the term pseudo-seizures anymore because it falsifies them and invalidates them. Pseudo is a prefix meaning “false” or “fake,” and the seizures I was having, while not epileptic, were anything but fake.
This doctor was the first of many medical professionals who would refer to my seizures as pseudo-seizures, and that only includes the doctors who had heard of my condition at all. It is not their fault either; they were simply never educated on this disorder. It is not that it is remarkably rare; it is almost as common as multiple sclerosis or trigeminal neuralgia, according to The Epilepsy Foundation. It is, however, highly stigmatized and misunderstood, like a lot of mental health disorders.
A week after my stay at Duke, I received a phone call from my neurologist who wanted to refer me to a therapist. About a month later I got connected to a therapist who had not only heard about my condition, but specialized in its treatment. This was the turning point in my mental health journey. This therapist would help me to be honest about the scary thoughts and feelings that had invaded my mind for years. PNES isn’t usually a stand-alone disorder. It arises from other mental health problems such as anxiety or depression, or from trauma in one’s past.
My battle with anxiety and depression started when I was a teenager, but the seizures had forced it into the public eye. Before my first seizure, I had done everything in my power to keep my struggle internal, to compartmentalize, and to repress every scary feeling I had. I did this for years, until my body was no longer able to function, and thus the seizures emerged.
My anxiety first presented itself through intrusive thoughts. My mind would become obsessed with the thought of dying and the thought of others dying. Though I was never the culprit of these heinous acts, I was often a silent witness to graphic scenes of violence. My thoughts were twisted and vivid. At first, they were abrupt and scattered, leaving as fast as they came, but as I dwelled on them more, they became horror stories unfolding behind my eyelids. I would picture murder, suicide, and abuse, and I felt paralyzed by the images, unable to save the victims. These nightmarish thoughts riddled me with fear: fear that something bad would happen, fear that I was going crazy; fear that the thoughts were my fault and that I was a monster for thinking such vile things. I threw myself into my school work, trying to drown out the thoughts in algebra homework. My attempts were fruitless; the more I tried to stop thinking about such awful scenarios, the more the violence ensued.
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This put me constantly on edge, and the next symptom of anxiety I experienced was panic attacks. They were unpredictable and debilitating, leaving me breathless and drained of energy. I couldn’t sleep well, and I couldn’t concentrate. I was afraid to talk about the thoughts, so I isolated myself from friends and family. This led to depression. I wanted to hide under my comforter and make myself numb, but my anxiety didn’t cease. I was unmotivated, but terrified not to succeed. Every day, I pushed through the heavy fog in my mind, through the constant thoughts of violence, and I managed to keep up the façade of happy, ambitious student, loyal friend, and perfect daughter.
Every day I was more and more exhausted, and I fell into unhealthy, self-destructive habits. I would over-eat or eat nothing at all, oversleep or not sleep at all, do no homework until the last minute when I’d over-exert myself and read a novel and write a five-page paper in one night. I even began physically hurting myself because I felt damaged and worthless. At my worst moments, I thought of ending my life and ending the anxiety and the depression with it. This is when I finally reached out, first to trusted friends, and eventually to a professional.
It took having a seizure in the Walgreens parking lot for me to understand how much I was neglecting my mental health. When I did finally connect with a therapist, I realized the power of verbalizing my feelings. I realized I had stayed silent so long that I was imploding with emotions. It took a lot of effort for me to stop blaming myself for my thoughts, my symptoms, and my seizures. My therapist used an analogy of kidney stones to explain the intrusive thoughts I was having. They cause a lot of pain, until they are forced out and analyzed by a doctor. And when you look at what came out of your body, you are sometimes surprised and even disgusted by what you see, but until you get them out, they will continue to cause pain. It is not your fault that they developed inside of you, but there are steps you can take to excavate them and reduce their frequency.
I wrote letters to myself and to others and read them aloud in therapy, and sure sometimes it felt like flipping through a middle school yearbook and cringing at what I saw, but it also felt cathartic and liberating to speak freely about my feelings. I learned relaxation techniques as well as cognitive behavioral strategies, and my seizures began to diminish. From the time my seizures started in September 2016 until February or March of 2017, I averaged at least ten seizures a week, sometimes ten in one day. They slowly started to taper as the therapy and medication began working, and I have not had one since June of 2017, which makes six months of living seizure-free.
There is a considerably extensive list of things that I lost because of my mental health disorder: my job, my freedom, my confidence. However, there is an even longer list of things that I have gained because I continued to fight and seek treatment. I have been able to heal fully, speak openly, help others, and grow in courage, faith, and emotional strength. I have learned a lot about my disorder as well as taught others a lot about it. I learned that people with my condition often go for years without a diagnosis because it is so heavily stigmatized and misunderstood. I learned that the video EEG is one of the only ways doctors have right now of making a clear diagnosis. I learned that people who have watched you convulse on the floor will still question you the moment they find out your disorder is psychological. Most importantly, I learned that I am not the exception to recovery, that there are doctors who strive to understand and help to heal what goes on in your head, that there are people willing to listen and care, and that there are people who need you as much as you need them. It is all about mutual support and validating one another’s hardships.
For a while, I questioned everything that was happening to me; feeling lost, discouraged, and utterly hopeless. Looking back, some of the things that happened to me were obviously meant to be. To be connected with a therapist who specialized in PNES and who practiced two hours away from my home in Virginia, when the next closest therapist who claimed psychogenic seizures as a specialty practiced in Florida, was a small miracle. I also gained a support system of authentic people who truly wanted to hear about what went through my mind and how I was managing.
Ever since high school, when the doctor first said the word “anxiety,” I have clothed myself in shame. I interpreted the word anxiety as a weakness, a label used to describe people who couldn’t handle their emotions, a euphemism for “crazy.” I had made an image for myself that included a 4.0 GPA, a list of extra-curriculars, and a smile on my face no matter what life threw at me; anxiety was not in the plan. When it invaded my life, I hid, denied, and suppressed to the point that my body could not function anymore. Now, at twenty-two years old, I step into the light every day. Today, vulnerability, once my greatest fear, is now my utmost strength. Being able to talk about my intrusive thoughts and terrifying emotions, has transformed this unnamable monster in my mind into a treatable illness that can be discussed and managed. My advice to anyone struggling in silence is to speak, not because it is easy or because everything will get better right away—trust me, it won’t—but because vulnerability gives us power. With that power, we can become happier than we ever thought possible.