My Journey with PNES.
Updated: Nov 16, 2021
by Kate Oczypok
All my life I’ve always been an anxious person. I remember being worried about lots of little things growing up, and in high school I even skipped a chorus concert because I got too anxious in rehearsals on the risers. I also canceled on some friends when I was too nervous to swim with them one summer. I am a plus-sized woman and I think a lot of it had to do with that, but that’s neither here nor there.
During my first full-time job, I suffered a lot of anxiety.
I often found myself working at the Starbucks across the street because I was put in a different department than what I actually was hired for and it was just an all-around tough time to be in journalism. Then again, it still is a tough time to be in journalism! Good thing I love it so much.
I got laid off from from my first job due to budget cuts and ended up getting a master’s degree in education. I started teaching piano and freelance writing and realized how much I loved being my own boss. It suited my anxiety well. I had met a nice guy too and was living in a two-bedroom apartment with him in the suburbs of Washington, DC. Things were fairly good with my anxiety for a while.
I did have a low-grade worry a lot of the time, particularly with our now deceased English bulldog Moe. He had more medical problems than you could count, and I can’t tell you how many times he was rushed to the vet!
Speaking of Moe, one weekend when my boyfriend was traveling for work, I came down with a case of vertigo. I hadn’t had it since high school and became extremely anxious about being home alone with a medically needy dog. That Saturday, when I went to get our mail since I was starting to feel somewhat better, I suddenly found myself on the floor of my apartment. I had no idea how I ended up there and started to have a panic attack. My parents said I should go to the hospital, which frightened me even more. I was terrified.
At the hospital I had every test under the sun.
It turned out I was completely fine — it was 100 percent anxiety. I went home to Pittsburgh for a week and started taking a low dose of the generic version of Lexapro, much to my chagrin, knowing how anti-depressants make you gain weight. I argued with my parents too, as I was definitely not depressed, just anxious. My optimistic, happy personality was struggling with this big time. It took a while for me to realize that the medication was helping my anxiety.
I managed to keep another episode at whim until May of the following year. It was just weeks after Moe died in my arms in the back of my friend’s car on the way to the vet. It was traumatic and terrible, and I think I had another episode because I hadn’t properly processed the event at that point. It was then that I decided to start seeing a therapist. It was around this time my parents (who are doctors) figured out what my episodes were. They are called psychogenic non-epileptic seizures (PNES). They are attacks that look like seizures but are not epileptic and instead caused by psychological factors. This seemed to make sense to me, as my brain shuts down and I have temporary memory loss. They are absolutely terrifying.
Another year later, I had yet another PNES.
I woke up on the floor at the side of my bed. It was the first attack I had after sleeping and I could immediately equate it with the beginning of the current COVID-19 pandemic. I had just gotten laid off from multiple freelancing gigs and was petrified that my piano lessons would dry up if no one would opt for virtual lessons. I did not want to be unemployed. It turns out, everything is fine and with some therapy sessions, I’ve begun to realize that I should take things one day at a time and not worry so much about things that are out of my control.
My last two episodes happened within a few days of each other- this past fall and around the time I got engaged and my now-fiancé and I moved apartments in our complex. We had been dating eight years. It was a stressful time, not because of my engagement, but all the initial planning that made me incredibly anxious. The pseudo seizures happened so close together that my parents recommended I get a head CT and EEG test to make sure I was physically fine. Sure enough, they were right that I may feel a bit better knowing I didn’t actually have epilepsy. The tests were scary given it was during COVID and I couldn’t have anyone come in with me to the hospital. Thank goodness, everything was fine and I was once again reassured that it was my mental health I needed to deal with.
Learning I have generalised anxiety disorder and PNES has made me hyper aware of my mental health.
I also have realised how much my anxiety revolves around my menstrual cycle (thanks Fitbit!). I know now that taking care of myself and working on my self-care are crucial to my staying mentally healthy and avoiding any episodes. Exercise helps — so does journaling. After my double episodes within a few weeks of each other, I did have to up my medication. I now realise how many of us are anxious or depressed and need medication to survive daily life. I am grateful I have a strong support system with my family, friends and fiancé to help me too.
Actress Kristen Bell became a hero of mine once I realised she too struggles with her mental health. In a Woman’s Health article from 2019, she was asked if she was hesitant about going public with her condition, something she’s had since age 18. She was at first and then realised that it was the shame that prevents people from talking about it. I hope that like Kristen, by opening up about my mental health issues maybe someone somewhere can seek the help they need.
In the article Kristen said,
“I immediately felt irresponsible, because I do care about depression not being taboo, yet I present this bubbly, outgoing girl who seemingly gets through life with a smile on her face, and I’d never discussed that some days, I don’t.”
Same Kristen, same.
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Kate Oczypok is a freelance journalist whose work has been published in The New York Times, Brides.com, Business Insider and more. She resides in the DC area with her fiancé and French Bulldog. You can find her on Twitter and Instagram.