“Undress down to your undies and put the gown on,” the nurse instructed me. I was in the neuroscience wing, about to see a general neurologist who works a few doors down from my neuro-ophthalmologist. She left the room. I undressed as instructed but chose to leave my socks on. I was cold. I also left on my “hospital socks”, which are the length of my entire leg. I wear them frequently to prevent swelling when I am on my feet a lot. They are made of white material and MJ refers to them as my “Little Lord Fauntleroy socks.” This is funny because I weigh 230 pounds.
I slipped into the gown. I reached in back but could not tie it because a few days ago I separated my right shoulder. When it rains, it pours. Later it popped back into place, but there is still a searing pain if I reach with my arm. I can hold my oboe but I can’t lift higher than my chest. Despite the pain I am literally leaving it for another day because there are just too many things on my plate right now. The problem for this day is the electric jolts in my head.
I had everything prepared – two pages of typed notes detailing my entire history, current medications, and two paragraphs detailing every aspect of my current symptoms, explaining exactly how the shocks seem to occur, how I feel I can minimize their severity by reverting to active rather than abstract thoughts, how bright lights and flashing lights seem to trigger them, and how the worst shocks occur just as I drift into a moment of repose during the middle of the day.
“Fill out the form and describe your symptoms,” the nurse also had told me. She handed me a clipboard with eight pages of questions. As best as I could, I transcribed everything by hand onto the form as she took my blood pressure. I filled in my name, address, date of birth, sex, primary care physician, address and phone number of my primary care physician, current medications (seven different ones, listing all dosages and frequencies), previous surgeries, etc.. It also asked for the addresses of the surgeons who performed not only my brain surgeries but also both my hernia repair surgeries in 2000 and 2005 and my left knee arthroscopic surgery in 1999. I fumbled for my iPhone, searching for this information to transcribe onto the form. I found most of it and scribbled it in as rapidly as I could.
As I turned over the fourth of seven pages (and with my hand cramping up) a question now asked why I was here today. I began writing “brain shocks” when the nurse took the clipboard back from me and said the doctor would finish writing the form with me during the appointment. I never saw the form again.
As I sat on the padded table (having improvised a one-handed knot on the hospital gown) the door swung open and the neurologist walked in. Finally, just me and a neurologist. He looked young, possibly a little cocky, but he exuded intelligence. We exchanged pleasantries, and when he found out I played in the symphony he proceeded to give me a run-down of the best and worst concerts of the past season.
He asked me questions about my medications, about my life, and about how well I can focus.
I found myself talking about my thinking patterns in ways I have never discussed before. I said, “Well, things repeat in my head a lot. It can be the sound of someone’s voice, a musical phrase, a taste, a moment on film. It keeps repeating and repeating until something else takes its place.”
“Do you have OCD?” he asked. “Obsessive Compulsive Disorder? Been diagnosed with that? Anything like that?”
“Never thought of it that way, because I don’t think of it as a problem,” I said. “From an early age I knew I had a compulsive streak. And I knew it would never go away. So I learned how to channel it so I can focus. You can let a compulsive streak ruin you, or you can use it as a tool for something like intense concentration for writing or composing. I think it ties into my memory. I can play an entire symphony from memory the week we are rehearsing because it plays endlessly in my head, over and over, day and night, until the performances happen. And then the next thing takes its place. I always tell people I have a ‘tape loop’ in my head. As long as I keep channeling good things onto the tape—great music, beautiful words, an interesting image, a Chateauneuf-du-Pape, a morel mushroom fried in butter—I’m fine.”
He scratched “OCD?” into his notes.
“So what about your current symptoms?” he asked.
I replied at length. I talked for at least five minutes, going into every detail about the shocks in my brain. I finished with, “I realize the Internet is filled with faulty information, but—in desperation—I’ve been searching for answers. The only thing I have found relates to people going through withdrawal from drugs like Ecstasy, and that’s definitely not me.”
He sat back and studied me for a minute. “I’ll be honest with you. I don’t know what you have. Do you experience the shocks as little clusters? Five or six at a time?”
“No. It’s always a singular event. One massive shock, assuming I couldn’t see it coming. The next one happens anywhere from ninety seconds to fourteen minutes later. I time them.”
“Are they happening now?”
“No.” I looked at the clock. “But this is prime time for them. They might start soon.”
He said, “There’s a very rare disorder called ‘Exploding Head Syndrome.’”
“Like in ‘Scanners’?”
I think I got a smile. He continued, “But that is during the first phase of sleep, and it’s a loud noise that wakes you up.”
“I don’t hear a loud noise. It’s an electric jolt, very painful, as I transition to more of a dreamy state.”
“I want to look at your MRI again,” he said. He went out of the room.
Almost as soon as the door closed, I felt it. The ear ringing increased and a high pitch vibrated along the top of my scalp. I thought, ‘If I close my eyes and drift off for a moment, thinking of how tiiiiiiiirrrrrrred I am.’ Nothing. I thought of the Wicked Witch telling me: “Sleep, sleep.” I thought of the poppy fields. I was drifting away . . .
I jolted up. It happened. Just as I knew it would.
He came back in the room.
I told him, “It’s happening right now. I just let one happen.” And, again, I explained the phenomenon.
He thought for a moment. “I want to try something.” He dimmed the lights. He pulled a light from his pocket and pointed the light at the door behind him. “Look over there,” he instructed.
I did. I heard the buzzing along the top of my head intensify.
He shone the light directly into my left eye, holding it there for several seconds. Doctors do this all the time and nothing ever happens.
Yet this time it was different. I felt as if suddenly I was falling into the light, my head shrinking until it fit inside the lit tip of his pen. Inside, it was like traveling through a wormhole faster and faster, screaming through outer space at light speed. The electrical impulse detonated in my head. I sucked the air out of the room and threw myself back onto the table.
I shook it off and looked at the neurologist. He gave me a knowing nod of his head in return. Without a word he ran through the rest of a basic neurological exam, checking reflexes and responses. When he was done he sat and wrote.
He said, “I want you to try something first. I have to be careful about saying what I think you are experiencing, because once I say the word it sets off alarms.”
“Does it rhyme with ‘leisure?’”
He ignored that and said, “First I want you to try a small dose of a new medication and see if it helps at all.”
I had never heard of the medication before.
He continued, “I also want you to get an EEG and another MRI.”
“I just had an MRI. Less than a month ago right here.”
He shook his head. “I know, I know. The MRI they did scanned only for your tumor. They usually do everything, but for some reason they skipped the “T2 Flair." That’s the part I really need to see.
I exhaled. “Okay.”
"So get started on the medicine and in a few days you will be contacted about setting up another MRI and an EEG. In a few weeks you'll be back here seeing the neuro-ophthalmologist, and he will build on what we've begun today. We won't jump to conclusions, but do take the medicine to see if it helps in any way."
A nurse took a blood sample from me and escorted me out. In the parking garage, I checked my messages and then typed the name of the drug into the Google search engine on my iPhone. As the page loaded on the screen, I saw the same word repeated across all the entries: EPILEPSY.