I’ve been an epileptic for many years. It has been tightly controlled with AED’s (Anti Epileptic Drugs). I had 2 grand mal (tonic clonic) seizures in high school (would have been around 1988-1989). At the time, I wasn’t really a believer in what had happened, and attributed it to growing about 6 inches over a very short period of time. I took Dilantin for about 2 1/2 years. When I graduated from high school, I took off to Sicily to live with my mother. Once the Dilantin Rx ran out, I stopped taking it. That would have been in 1989.
Many, many years went by without any evident epileptic issues. I met my wife, who is a nurse, around March of 2003. In December of 2003, I had an especially physically long and hard day. I’d spent most of the day skydiving (my hobby at the time). After I got home, I was beat. Finally I went to sleep and I was awakened in the middle of the night in an ambulance. After a few minutes of confusion and finally being able to gather myself mentally, I was told that I’d had a tonic clonic seizure. The visit to the hospital resulted in a CT Scan and an MRI of my brain; however nothing was found. It turns out this is not remotely unusual, as most Epileptics don’t know why they have seizures.
Soon after, I went to a Neurologist and gave him my history. He immediately put me back on Dilantin and told me not to drive for 6 months. He also said, no more alcohol….ever. I’ve never been much of a drinker, but that seemed rather extreme. He also said that I’d probably be taking AED’s for the rest of my life. This also was not something I wanted to hear. Almost two years after that seizure in 2003, I switched to a new Neurologist. He was more empathetic to my Epilepsy. He told me that he’s willing to allow his patients to come off of the AED’s when they’ve had 2 consecutive years without a seizure. I was a candidate to stop. I was quickly weaned off of the Dilantin. Approximately 6 months later, I had another tonic clonic seizure in my sleep. Again, the same routine of tests (with no findings) and another 6 month hiatus on driving. Perhaps another year went by and I found that the Dilantin was causing some shaking in my hands. My neurologist switched me from the Dilantin to Keppra. During that 2 week period of time I had another tonic clonic seizure in the middle of the night. That was my last seizure for many years.
Leading up to the end of 2013, I started having strange symptoms. None of these were attributed to my Epilepsy, since I had such great success for about 8 years. First there was vertigo, then in the middle of 2013 I had what my wife thought was a TIA (transient ischemic attack); otherwise known as a mini-stroke. I was admitted to the hospital for a 2 day stroke protocol, had all sorts of tests done including a cardiac monitor that I wore at home for several days. In the end, it was proven that my heart was functioning as it should and no lesions were found on my brain (which would indicate a mini-stroke). Regardless, the rest of the year still didn’t feel right. In October of 2013, in the middle of the night, I had another tonic clonic seizure. This was my first in 8 years. I found out when I woke up and found a note next to me on the nightstand saying “You had a seizure last night”. My wife had already gone to work, as at this point it was basically a routine event given my history. Needless to say, for me, I was pissed off. I visited my Neurologist and insisted that an EEG be done immediately. For the first time in my life, there was FINALLY a small finding. “Spikes on the electrical waveform in the left temporal region”. That doesn’t mean a hell of a lot to most, but for me it was finally some sort of answer. Over the next 2 months, leading up to December 31, 2013. I had 2 more tonic clonic seizures, the 2nd to last one finally happening while I was awake! Again, driving was put on hold. Luckily, my job allows me to work from home; which I ended up doing for about 3 months into 2014.
It turned out my Keppra levels were half of what they needed to be. I spent several months in to 2014 trying different drugs, drug combinations, etc. Now, I’m on Lamictal (400 mg / day) and the tonic clonics are gone. Unfortunately, now I have these “Simple Partials” (SPS) that I do not recall having prior to late 2013.
My first SPS is an inability to communicate effectively. It comes in clusters of 30 seconds on followed by 30 seconds off, lasting up to 2 hours sometimes. When they are happening I cannot understand anything anyone is saying. All I hear is the same phrase or words. Every time it happens, it’s the same couple of words as well. When I see words written on something, it is those words…until the SPS ends and then I realize that my mind was misinterpreting the words that my eyes were seeing. I try to speak these words and nonsense comes out. All forms of communication are down when this happens. Strangely enough, my motor skills are not affected. I can drive, walk, etc. when this happens. I’m completely aware of it, and it usually isn’t a problem as it seems to happen when I’m very tired and/or stressed. Regardless, it pisses me off as it’s a rather debilitating problem when it happens at work.
My second type of SPS is more unpleasant; a short lasting feeling of (I guess) deja vu, along with upset stomach, sort of an out of body, feeling of fear (perhaps that it will elevate into a tonic clonic – yet it never has). These fit the description of a pyschic SPS according to what I’ve read. It is so frustrating.
Needless to say, despite my success with regard to tonic clonic seizures, I have these SPS’s that haunt me all the time. The only thing that I’ve found which helps is to avoid stress and lack of rest. In today’s world, that is basically impossible. Nonetheless, I am stuck suffering simple partial seizures all the time. Now that 2015 has arrived, I’m going to make it a priority to get with a new Neurologist and try to tackle this problem with the SPS’s. I’m sure that all of these SPS’s are based on some sort of problem in my left temporal lobe; however despite an at home EEG, an ambulatory EEG, CT Scans and MRI’s, nothing has ever shown with the exception of the ONE positive result in late 2013.
Wish me luck. I know I do, every day.