Saturday, March 19, 2016

Fycompa Freakout

     By the time I got to Walter Reed, it was hard to sit still, but I knew the necessary steps to get past the guards to the doctors behind closed doors. So I sat there while my mind raced with thoughts that came from some other person the Fycompa was turning me into. A manic, paranoid lunatic would be the best description.
     When I first started taking it, I began feeling more alert and even smarter than before. "Maybe the doctors were right," I told myself. This could be the one that transforms me into "someone better."
     I was braver, too, in good ways. Less afraid to tell my sons and husband some of the worries I usually keep inside, where they gnaw away at my stomach and make it hurt so much I visit other specialists who prescribe different pills.
     Because Fycompa was so scary and came with a black box warning for things I'd rather not even think about, I was also constantly asking my family, "Am I acting crazy? Is the drug doing anything weird that I can't see?"
     By the second or third week, I was apologizing for talking too much, hiding myself away again to give my family a break from me and my sudden compulsion to "think aloud." The seizures didn't slow down one bit, and I was sleeping even less, beginning to wonder if maybe I was going to start remaining awake 24/7.
     Everything was a writing prompt, which is the only good thing I can say about Fycompa. I could look at a piece of discarded trash by the road and somehow connect it to one of my favorite themes, plus I had the energy to get the ideas out of my head and onto this blog, despite the lack of sleep.
     My appetite completely went away and hasn't returned yet. I'm not sure if this is a permanent side-effect or not, but I don't really care either way. It would almost be funny.
     In the days leading up to my voluntary incarceration, I began feeling too smart, but not in a "grandiose" way. There were simply too many things I wanted to learn and read about and research but not enough hours to do it in.
     By the final night, I was recognizing paranoid delusions in myself and walked down the street at midnight to my friend Courtney's house. I knew she wouldn't judge me, no matter how nuts I might sound, and I needed someone to listen.
     When she hugged me in my driveway after walking me back up the street, I promised her that I would have my husband drive me to Walter Reed first thing in the morning.
     I did not want anyone else to see me in that state or to know about the strange thoughts going through my mind, except doctors and nurses. She and I were both crying when we said goodbye. I didn't know when I would be back or what kind of shape I would be in.
     However, I was convinced the doctors at Walter Reed would know what to do and that somehow, things would be better the next time we saw each other. I craved relief from the emotional pain and growing fear of what would come next on the very, very bad drug trip called Fycompa.
     The last thing I did before leaving for the hospital the following morning was make a desperate telephone call to my family in North Carolina, asking for someone to please come help me get through whatever I was about to face.
     The doctor's office routine actually calmed me because it was familiar and the guy checking my vitals was so nice. He remembered me from before as the person who walked out when they tried to schedule a 4-day stay to measure my brain waves on an EEG.
     I was cool with it that day until the receptionist told me I wouldn't be allowed to leave the hospital room, that I couldn't roam the hallways and chat with the other inmates. Now, I was willing to go through that torture to stop whatever was happening in my brain.
     Within a few minutes, I was allowed into the inner chamber, describing my racing thoughts and irrational fears to a psychologist/trainee. She asked if I had ever been diagnosed with bipolar disorder. No, and that information is in my record, I informed her. A complete neuropsychological assessment was performed here last August, I added, naming the doctor who said I passed with flying colors, no labels necessary except epileptic.
     When I described my seizures and how they take me back to comforting childhood memories, she asked the same questions other shrinks ask....Do I see things that aren't really there? Do I hear voices and if so, do they tell me to do things? No and no, I answered, same as always.
     I have temporal lobe epilepsy, I explained, and my seizures happen in the part of my brain where my memories are stored. I might as well have been speaking a foreign language because it doesn't fit in the psych manual, what I describe. (I know because I've read every version since DSM-III.)
     To her, this was an opening to ask about past sexual abuse,experience, etc. I'm not sure if male epileptics get this same line of questioning, but I find it to be very offensive and ignorant.
      I was demonstrating the Black Box warning side-effects of a newly approved drug and being asked to once again describe my sex life. I became angry at the hidden accusations directed at the kind men who spent time with me when I was a little girl but never did anything to hurt me...uncles, teachers, neighbors, coaches, etc.
     But then, the familiar face of my epileptologist appeared, and he agreed the Fycompa was doing a number on me and it was in my best interest to be admitted. This would also allow them to hook me up to the EEG machine and maybe capture one of my "unique" seizures on the type of film that matters to neurologists.
     On his way out, he reminded me I hadn't followed proper procedure."You didn't have an appointment and should've gone to the ER," he said.
     That made me feel sooooooooo much better about myself, as my brain continued its out-of-control journey into darker and darker places. As usual, it was all my fault.
     My husband looked tired and scared when I saw him waiting in the lobby. If this is too much for you, I said, you can leave, get some rest, do whatever you need. I was flooded with guilt every time I looked into his eyes so I stopped doing it.
     "I'm in good hands," I told him, and believed it then.
     Ron stayed and Tommy was there, too, by the time we were taken to a different waiting area, one with better books and free snacks. I took Lady Chatterley's Lover, maybe because the head-shrinker put the idea of sex in my brain with her earlier line of questioning.
     There wasn't room in whatever part of the hospital I actually belonged, so I got a "VIP" room somewhere with old people wandering the halls and wounded warriors suffering in silence behind closed doors.
     It was tiny and didn't feel very VIP, but I had a nice view of the park where I had smoked what I thought was my last cigarette.
     I changed into the inevitably ill-fitting hospital gown and resigned myself to the fact that I wouldn't be showering for a day or two. It was the same way in 2011 when I had a mobile EEG machine attached to me here at home.
     The guy who glued the wires to my head was the same one from the epilepsy clinic, the nice one who took my vitals. It was relaxing to have him "play with my hair," and I suggested we come up with some form of therapy involving his techniques, minus the wires and glue.
     By the time he was finished with me, I looked like David Spade at the end of Joe Dirt, minus the dreads. He even gave me a chin strap and little "purse" to help carry around the metal box that stayed close to me.
     Every time I went to the bathroom or got up for any reason, I had to adjust the gown and bring my little box. The wires from my head were connected to the EEG machine by my bed. When I went to the bathroom, the door couldn't close all the way and sometimes the wires forced me to stop short, like a dog who has reached the end of his rope.
     It was both pathetic and funny at the same time.
     Despite my mania/anxiety, I remained upbeat because everything was happening as I expected it would. After multiple sticks in my rolling veins and bruises on my arms and the back of my left hand, blood was drawn and those plastic tubes were in my arm that I thought would bring relief.
     Surely, the nurses were about to put something inside me to calm down my brain and make it stop going in the same dark circles. I was a caged animal waiting for the tranquilizer gun to save me from clawing my own eyes out.
     But it never came. The plastic tubes were there just in case something worse happened or maybe as a little placebo to make me think help was on the way, like the therapy dog who never showed up.
     By the time I realized they were putting me through a "cold-turkey" Fycompa detox, I was already attached to a machine, forbidden to leave my room, with someone constantly by my bedside...watching.