Plugged In: My Experience with the EEG

By Marylou Olin
Special to between us
Posted: March 21, 2003

Mary Lou Olin

The electrodes dig cruelly into my skull. The bandage strangles my head. The IV lock's razor-sharp needle bites into my vein. The humidity is melting my energy quicker than the polar ice caps.

Tethered to the bed by an electroencephalograph (EEG) computer cable, I can move only ten inches to my left or right. Struggling through my fourth night here, I'm uncertain if I can endure a fifth. Only an indisputably impaired brain would volunteer for this torment. Say hello to that brain.

Twenty-five years after experiencing my first complex-partial seizure, I remain mystified. Innumerable drugs, hormone therapy and myriad stress-reduction techniques ranging from yoga to breath control have dented, but not cured, my disorder.

The only epilepsy "cure" (if successful) is surgery, either to remove the damaged part of the brain or disrupt its electrical energy. EEG video monitoring is one of the initial tests given in determining if one is a viable surgical candidate.

It's really quite simple. First, electrodes are glued to your skull, hooking into a computer that monitors your brain waves. Then, while simultaneously being weaned off medication, you're checked into a hospital to wait around for seizures to be recorded. Not exactly a day at the beach.

I stumbled down a similar path seven years ago when I first experimented with EEG video monitoring. Eight medication-free days later, I still hadn't experienced a seizure. Claustrophobia ultimately choked my courage. My desperation to break out, coupled with the hospital's accommodating style, proved to be a precarious mixture. Sent home on inadequate medication, almost immediately I suffered a cluster of grand mal seizures, ending up unconscious in the hospital emergency room that same night.

Three complex-partial seizures were eventually recorded, but provided inconclusive information. The neurologists decided that electrodes needed to be implanted in my brain to locate deep seizure sites. The thought of pre-brain surgery brain surgery sent me reeling. I hastily packed up my toothbrush and scampered home to pull the covers over my head.

Yet a lot can -- and did -- go awry in the last seven years. As I slid into perimenopause, my estrogen engaged my progesterone in a Hormonal Armageddon. My hormone treatments, which had been fairly successful, were finally losing steam. So, in the all-American spirit of "How bad can it be?" I'm once again a budding brain surgery candidate.

Spending 24 hours on an EEG video monitoring unit is like spending 48 hours wedged in a musty crypt. Happily, I'm blessed with an amazing partner, a warm family and supportive friends. I was further gifted with an easygoing hospital roommate (an obnoxious roommate can take a merely brutal experience and turn it into sheer agony). The seconds sluggishly ate away each day. Maintaining one's sanity while serenely awaiting a seizure isn't quite as effortless as it sounds. Endless games of Solitaire tumbled into hysterical scuffles over Scrabble (is "xycon" really a word?), which blurred into a 23-hour "Taxi" TV marathon.

Stress being the efficient seizure producer that it is, I resolved to jack up my blood pressure to alarming new heights. A recipe of sleep deprivation added to daily phone chats with my mother combined instantly to shoot my pressure up 20 points. Although abnormal EEG activity was detected, basically my brain dozed as contentedly as a tiny kangaroo in its mommy's pouch.

Laboring through my fourth night, I abruptly awoke with a throbbing headache. My Mr. Potato Head pajamas were fused onto my skin. The fan had been turned off, turning the room into a virtual sweat lodge. Woozy and quite ready to toss my cookies, I stumbled towards the door to gulp some air. Feebly propped up against the wall, an intense wave of claustrophobia crashed over me. I ached to rip off the electrodes and tear towards the nearest "No Exit" sign. Yet my craving for a better life held me hostage.

One seizure-free week later, I was discharged. As before, the doctors concluded that implantation of depth electrodes was critical to localizing the seizures and as before, that prospect was nauseating. Lacking the bravado to bite that particular bullet, the surgery was shelved.

Was my fear eroding my resolve? A chronic illness is an emotional and physical vampire, sucking your very life force. My moods range from anger to acceptance to resentment to apathy. It's frustrating and, at times, frightening, to carry on the struggle.

Yet, it seems lately that I've had more good days than bad. Do I just stop the fight and accept what I am?

Still, brain surgery remains the "elephant in the living room." We've stopped speaking about it for now, but it ain't over yet.