In December 2011, I had a seizure and immediately began seeing a neurologist. At the time, the doctor, my family and I all thought there
were non-neurological reasons for the seizure. There are tons of reasons why parts of the human body can seize, and many of them are not directly related to the brain. I got tested to see if
I had any of those problems, but none of the tests were positive.
I found a statistic somewhere that 1 in every 10 people has one seizure in their life, and that made me feel very hopeful. Maybe it was a fluke and I could move on. Once I made peace with that idea, I moved on.
In April 2012, I had another seizure. Medically speaking, when a person has 2 unprovoked seizures they officially have epilepsy, so as of April 2012 I am an epileptic. Once the diagnosis came, I felt like I had a disease. I am now sick, and I can never shake the diagnosis and stigma of having epilepsy. Even in medical terms, I am never free from the term, but in various forms of remission.
There are other diseases like this too of course. I never imagined myself having any of them, especially not at age 26. I have been in overall good health for my entire life, been active and athletic, and generally felt normal, but then after a single visit to the ER, that felt like it was gone forever. It was a pretty bad night in the ER obviously.
After a detailed MRI, the neurologist found a small scar in my hippocampus to which he attributed my seizure disorder. I was more scared at that point than any other time in my life. We all knew what the problem is, and we knew that there’s no simple cure. The brain is complex in so many ways, doctors know relatively little about how it works, and on top of that everyone’s
Neuron activity, hormone levels, sleep patterns, anxiety patterns, and tons more factors have the ability to change the brain chemistry of any person. Some people respond to seizure medications, some people don’t and need brain surgery. I also found out that some people don’t even respond to brain surgery and just live with seizures for the rest of their lives. I even went to an epilepsy support group and met some of those people.
I didn’t hear all of this stuff at once, but once I heard “brain surgery” I freaked out. Before that point, I never really expressed my emotions very much, especially not fear. Even though there are tons of steps to take before resorting to brain surgery, my fear came out pretty quickly and easily.
I began a trial and error process with anti-seizure medications. That means trying a medicine, seeing what the side effects are (they can be pretty bad and long lasting), and then seeing if seizures continue. I had minimal side effects, but I had 4 more seizures.
Finally in late August 2012, I had my 6th seizure. This was the second time I seriously hurt myself and the first time I was alone. All the previous episodes were at work or my roommate was around.
I realized how bad things could get if I was alone and something more serious happened. Then the fear came again. My seizure pattern is an aura, blacking out, seizing, and eventually waking up usually about 45 minutes later. It’s easy to imagine how bad things can get during that process. My imagination took over and I was crippled with fear.
I called my parents after I woke up and they suggested I do things to calm myself down. But I couldn’t move. It sounds crazy to me as I write this, but I remember this sensation of thinking to myself “I need to get up” and trying to but my legs didn’t move. There might be a scientific explanation for why I couldn’t move my legs, but I’m sure I don’t want to hear it.
The feelings that were swirling through my head were dominated by fear, but there was more going on. It’s hard to explain accurately, but I remember myself feeling like I was falling into a black hole, with no hope of coming out. Pretty awful feeling. In hindsight I know that it was rock-bottom for me emotionally.
My dad had to fly to San Francisco the next day to bring me back to Chicago where my parents live so they could help take care of me and I could get intensive treatment to gain control over these seizures. I don’t remember anything from the trip back, instead I woke up the next day remembering the night of the seizure.
I was in Chicago for about 2 months, during which I began seeing an epileptologist (a neurologist who focuses on epilepsy). I accomplished a lot over the 2 months that I spent in Chicago:
- I realized that stress is the biggest trigger to my seizures
- I realized that I had a lot of stress in my life, and much of it comes from pressure that I put on myself
- I got a prescription for a powerful depressant that I can take to avoid seizures if I notice one coming on. I began to think of it as a last resort “rescue drug”
- I began seeing a psychologist to help me take control of the stress in my life
- I gained control over the primal “fight or flight” response that I get when I fear a seizure is imminent
- The neurologists, my parents and I finally got the anti-seizure drugs right. There have been no recurrences since that late August night
Obviously #6 is the most important, but the others have made the biggest noticeable impact on my life. I’ve begun to think of my life very differently, with different priorities, hopes, dreams, etc… To be continued in my next post.