Growing up, I had the stereotypical image of what a seizure was. A person has to collapse, convulse, and practically lose all consciousness, right? Wrong.
I started experiencing odd sensations in my mid-teens. For a few minutes, I wouldn’t be able to speak, and a feeling of inexplicable terror would wash over me. I couldn’t read or write during these brief episodes. My family and friends told me that I simply looked like I was spacing out.
I only experienced these episodes around the time of my period. When I told my primary-care physician, and later, my on-campus doctor in college, I was told I had PMS and was prescribed birth control pills. These did nothing to alleviate my issue. Yet I blindly accepted this diagnosis.
By my senior year of college, when I was studying psychology at the University of Maine, Farmington, the odd sensations began gripping me at all times of the month. My friends that witnessed me having an episode said I looked like I was seeing a ghost. Still, other doctors I went to dismissed it as premenstrual dysphoric disorder, a severe form of PMS. They also said I may have a panic disorder. I was told to stick with the birth control pills and to visit a psychiatrist for antidepressants, which I did.
During my last years in school, I didn’t want to go out out anywhere because I was afraid I would have an episode in public. People would be like, “Wow, what the heck is wrong with you?” It was embarrassing to have to say, “Oh, I just have bad PMS.”
At that point, I had a feeling that something more was wrong. None of my friends were experiencing what I was, but when I asked my doctors why I was the only one, they would reply, “Don’t worry, it’s just PMS” or “It’s just a panic attack.”
But when I was visiting my mother during spring break of my senior year, she witnessed me have a particularly severe episode. I had a cup of coffee in my hand, and out of nowhere, I just dropped it and froze. My mother took me to the emergency room, but the ER doctor asked me just two questions—if I had taken any illegal substances or drank alcohol that day. I said no, yet the only tests he ordered measured drug and alcohol levels.
Although I was covered by my mother’s health insurance at the time, I was billed almost $1,000 for this pointless visit because I was sent home without a diagnosis.
A few months after graduating college, the sensations were coming over me so often that the first thing I thought of when I woke up each morning was how many I might have that day.
I moved to Texas after graduating, and one morning when I was driving to a job interview for a sales position, that dreaded feeling crept up on me, and as a result, I crashed my car. (Thankfully, I only needed a few stitches and no one else was harmed.) That’s what it took for my primary-care doctor to finally suggest that I see a neurologist—six years after I first complained about my symptoms.
The neurologist had me undergo an electroencephalogram (EEG) test, which records electrical activity in the brain. The results showed I was having an average of 20 partial-complex seizures each day. Twenty. I was diagnosed with catamenial epilepsy, which means the hormonal fluctuations that occur during my period exacerbate my seizures. I was relieved to finally know what was wrong with me, that a had a subtype of a not uncommon neurological disorder. But unfortunately, that relief didn’t last for long. None of the of anti-seizure medications that I was put on worked.
After about six months of the medications not having any effect, my neurologist ordered a brain MRI. I didn’t hear from the doctor for about three months, so I thought the results must have been fine. But my mother noticed my seizures were getting worse, so she called the office asking for the results.
When the doctor finally called back, I thought he was just going to ask how the medication was working. Instead he said, “I have some news for you… You have a brain tumor.” Apparently it took three months to get this news because office staff accidentally filed away my results without giving the doctor a chance to review them.
Looking back, I feel so naive letting so much time pass without knowing the results. But after years of being told by doctors that I was fine apart from PMS and a panic disorder, I was in serious denial about the severity of my condition.
When the doctor told me it was a tumor, I felt a hodgepodge of emotions. I felt my bubble of denial burst open. While I was relieved to finally have an answer as to what was causing the seizures, I also had a deep fear of what lay ahead for me. I felt angry at and betrayed by the doctors who brushed my symptoms off for all those years. I put my trust in them, my health in their hands, and look where it got me.
The tumor, which turned out to be cancerous, was in my left temporal lobe, specifically the hippocampus and amygdala. This area of the brain controls fear response and word comprehension, among other things, which explains my inexplicable terror and inability to speak during my episodes. I was in my early 20s, had just graduated college, and I felt like I was being given a death sentence.
In March 2010, I had surgery to remove as much of the tumor as possible. It was diagnosed as a type of brain cancer called diffuse mixed glioma, and I was told that recurrence was inevitable. I was put on the watch and wait plan, undergoing regular MRI scans so doctors could keep an eye out for any regrowth.
Fortunately, I had the support of my mother and boyfriend. (We started dating right before I was diagnosed. Bless his soul for staying through it all.) I was in the hospital for about two weeks after surgery and lived with my mom for a few months after that, but it took two years of speech therapy for me to relearn how to talk.
At first, I had a lot of trouble finding my words. I remember the therapist holding a pencil up and asking me to name it, and all I could say was “Christmas.” I knew it was a pencil, but I just couldn’t get the word out. It was as if there was a bridge between my brain and my voice that was severed by the surgery. Luckily, this was slowly rebuilt with therapy. The bridge still feels weak now, especially if I’m tired or stressed. The surgeons removed about a quarter of my entire brain, and truthfully, you never fully recover from a surgery like that.
As far as the seizures, they almost completely disappeared after surgery. For the first couple of years, I would still get nervous when I had my period, thinking the episodes were going to strike. Thankfully, they never did. I had long accepted those terrifying sensations as a normal part of life with bad PMS. I never imagined that they were something that I would be able to live free from.
Now, nine years post-craniotomy, I only have minor seizures, known as auras, once or twice a month. By some miracle, the MRI images of my tumor resection site have been stable, and there’s been no regrowth. (I now demand my MRI results as soon as they come back.)
Living without seizures has made my life immeasurably better, but I’ll always live with side effects of surgery. Sometimes, it’s still a struggle to say the words that I want to. My life has also been set back a few years. I’m 34, but I feel like I’m in my early 20s, just figuring out my life path. I often compare myself to my friends who seem to be doing so much more than me, but I just have to remind myself that I went through something they didn’t. I need to take things slower.
Had it not taken nine years to get properly diagnosed, perhaps the outcome would have been different, but that will forever be a mystery. I tell other women to never accept a diagnosis or treatment that doesn’t resolve their symptoms. Don’t wait until something potentially fatal occurs (like a car accident) to push for the medical attention you deserve. Don’t let it take nine years to find the real diagnosis.