Wednesday, May 4, 2016

All in my Head

     I took a copy of the article about ecstatic seizures to my doctor's appointment Monday and now have added my current doc to the short list of people I trust. He's the same one I walked out on in December, when I decided to seek out an epileptologist at Walter Reed.
     The reason I walked out in December had more to do with frustration and being hit with too much information at once than it did with him. Also, I wanted to see what my seizures were like with no medication at all, if it would be possible to live my life without any anticonvulsants in my system, like I did before I was diagnosed.
     Two months of seizing throughout the day and being awake much of the night convinced me to end my drug holiday but I did so with the wrong drug, at least for me. I hope for the sake of others that Fycompa (Parampanel) actually does prove to be a promising treatment for people whose seizures do not respond to older drugs.
     For me, however, it was a nightmare I wish I could forget but can't. That's how my mind seems to work; I remember the really good times and really bad times while everything else jumbles together into one gray blur.
     My doc at Fort Belvoir decided to increase my  dosage of Depakote sprinkles. My labs showed my level is at 44; therapeutic is between 50 and 100. For years, it didn't matter that my levels were in the 40s because I wasn't having seizures, but now we are being more careful.
     It doesn't scare me to increase the Depakote because I was on too high of a dose way back in 1989 and didn't even know it until someone from the lab called me one night and told me. On Monday, I told my doc, "You know it's serious when the lab people actually pick up the phone and call you."
     I don't remember feeling any different back then, when my levels were so high, except my then-boyfriend, Ron, sometimes pointed out how tired I was. My job at the time was demanding, as I was reporter/photographer/layout person for a small newspaper in Pennsylvania.
     Any exhaustion he noticed was probably due to the stress of trying to fill so many roles at work and live on my own for the first time in what seemed like a foreign but beautiful land. My arthritis was a bigger concern to me then than my seizures, with my knees all swollen and achy much of the time.
     On Monday, I had the chance to explain to Dr. O that my seizures are literally "all within my mind" and don't involve convulsions or tremors. I also told him that I haven't been able to find anyone like me despite connecting with lots of other epileptics on the Internet.
     I told him how my seizures make me feel, that it's an almost religious experience sometimes and that no drug has ever made me feel that way. He asked about hallucinations, and I said no, I don't hear or see things when I'm seizing.
     I even described my vivid dream life, how I wake up in the morning with stories to tell my family about the weird adventures I had the night before. He asked if I dream in color, and I said yes and that sometimes, I even smell things in my dreams.
     Last month, when I finally started sleeping again, I had a dream that was so intense and haunting, I was compelled to draw the unique symbol that was in it. That was the "smell dream," with the distinct scent of blood. My son, Tommy, said the drawing reminded him of  the DHARMA Initiative symbol from Lost.
     "Everyone else wants to be cured," I told Dr. O. "But I can't imagine not being able to go back there again, if I wanted. It feels like heaven."
     It was the first time I've actually used that word to describe my seizures, and I was a little surprised to hear it come from my own mouth. He didn't look at me like I was crazy or refer me back to behavioral health. Instead, he said he might be calling me with more questions.
     That's why I added Dr. O to my short list. He did something most doctors don't seem to have the time to do...listen to me.