April 11, 2012 – it was my mom’s birthday! But that date also holds another meaning for me.
I just finished eating dinner and was in the kitchen, when suddenly, out of nowhere, visual auras commenced. I last experienced these in 2009 when I had my first seizure. Here we go again. Bring on the flashing lights and spinning room. I panicked – I looked for someone, anyone, to catch my fall. Within a matter of seconds, I was down on the floor – unconscious on the cold tile. When I came to, I got myself over to the couch, put my head in my hands and said to myself “no, not again”. I got on the phone with the closest people at the time – my parents, and they urged me to call Yale immediately. The sound of concern in their voice resonates with me to this day.
Frightened and still disoriented, I called the hospital and left a message. Within a matter of minutes, I heard my surgeon’s calming voice: “Chris – talk to me. What happened? How are you feeling? Is anyone there with you? Did you take your medicine today?” My responses were soft and slow, but at least I was able to answer. At his direction, I took an additional Dilantin pill and assured him that I would be in contact as soon as someone arrived.
My brother, who fortunately lived nearby at the time, called and said he was on his way over to stay with me until my parents arrived. While I pride myself on being an independent person, I have to admit that I was relieved to hear him say that he was minutes away. As I was walking away from the door after unlocking it, out of nowhere once again, the auras returned, I twitched, spun around and was down.
I was woken up to the voices of my parents and brother, all of them nervously hovering over me. My parents pressed me for answers to the questions, but knew that I was incapable of answering. We all sat together for a few minutes on the couch and no one really said much. I think we were all in shock and scared – or at least that is how I felt. When the small talk reconvened, I told them that I talked with my surgeon and took another pill at his direction. Rightfully so, they were concerned about the second seizure at the moment. The three of us sat on the couch for a few more minutes, nobody saying anything and fearing the worst. We rushed down to the emergency room at Yale-New Haven Hospital where more blood tests and an MRI were ordered and I was pumped up with medicines. I was finally released around 3:00 in the morning.
Home to sleep for a few hours then back to Yale we went for an appointment with my surgeon. Because I was alone for both seizures, there were not many answers to the questions as to why this happened twice in succession. The results of my MRI were clear – there was nothing present on the scans that was cause for concern. However, the results of blood levels provided further insight.
After my first seizure in 2009, I was prescribed Phenytoin (or more commonly known as Dilantin) and instructed to take 300/mg twice per day. Phenytoin is used to control and prevent seizures and works by decreasing abnormal electrical activity in the brain. The one caveat – the drug is dependent upon your body’s ability to absorb the drug in the bloodstream.
Thanks to breakthroughs in science, blood tests are used to determine whether the drug concentrations are in the therapeutic range. For a patient my age and weight, the magical range is between 10-20mg. When I arrived at the ER, my phenytoin level was down to six. Yikes! I was given a loading dose – 10 to 15mg by slow IV drip, at a rate not to exceed 50mg per minute. After the IV had completed and the drug was in my system for some time, the blood test was re-administered. Shockingly, the level had only gone up to an eight.
My surgeon referred me to a neurologist – someone who specializes in and is better equipped to handle seizure disorders. During my visit with the neurologist, he explained that Dilantin’s requirement to stay concentrated in the bloodstream does not work for some people for reasons unknown. Fortunately, there are other medications that can be taken that do not depend on blood concentration. I take this moment to introduce levetiracetam, also known as Keppra.
I am prescribed to take the maximum daily dosage of 1,500/mg twice per day. With Keppra, the drug instead works by communicating with nerve signals in the brain. I just picked up my prescription at CVS and have the paperwork here which reads: “Leveiteracetam has been shown to decrease the number of seizures in adults and children. It is not known how it works to prevent seizures.” Awesome right? But for whatever its worth, and knock on wood, I have been seizure free now since April 11, 2012. I’m not sure if that was my mom’s birthday wish that year, but I like to think so.
Life continues to throw curveballs at me. Though I never hit one of them as a kid, probably because I never had good eyesight (I like to think that it was due to the tumor growing, but that’s highly unlikely), I knock everyone out of the park now. Watch out Ty Cobb, I’m coming for you.