Those of you who’ve been here before know that I’ve been having brain issues. I’ve been epileptic since my teen years, but for a long time, I didn’t believe it because I didn’t have seizures–or at least I didn’t have what I thought seizures were.
Boy, did I have a lot to learn!
Ten years ago, under a long period of extreme stress, my blood pressure was out of control. I was having raging headaches, periodic tremors, short-term memory loss–pretty scary stuff for someone whose mother was a victim of strokes. My primary care doctor sent me to a neurologist, who scheduled an EEG. He informed me I was epileptic. He prescribed Dilantin, which I had taken years before but had discontinued–as I said, I couldn’t ever recall having had a seizure.
He asked me a lot of questions, determining that, while I don’t have tonic-clonic (grand mal) seizures, I’d had absence seizures early on, and more recently, complex partial seizures. He gave what I’d experienced a name: temporal lobe epilepsy. The EEG was inconclusive, but he was certain this was the diagnosis.
I was rattled by this revelation. The temporal lobes are on the sides of the brain–did this come from the first injury–or from a blow I sustained in a short-lived street fight back in the ’80s? That blow had done some major damage to my inner ear on the left side. For a long time after that fight, I would get so dizzy, I’d stagger around like a drunk. Sometimes, I couldn’t stand up at all. It was pretty bad.
Anyway, the neurologist wanted to do further testing, some of which I resisted. The idea of being confined to a hospital room, kept awake and monitored on an electroencephalogram was more than my claustrophobic self could handle. I had no doubt the seizures he wanted to observe would occur under those circumstances, but for me it was a case of being careful what we wished for. When that little beast is provoked, it comes out of its cave enraged.
I felt we were making progress, but my doctor’s residency ended and he left the St. Louis area to set up his private practice in Joplin. The doctor who took over my care suggested a change in medication. Dilantin is an “old” anti-seizure drug, and there are several newer meds that have had impressive results. He prescribed Topamax. It was a disaster. The side effects were worse than the seizures.
Back to Dilantin.
By the time I was referred to my current neurologist, the seizures were more pronounced. I would have both visual and olfactory hallucinations. I love watermelon, but I could no longer eat it because it smelled so foul. Canned salmon and chili both smelled musty. I was sleeping far too much. I’d see fleeting shadows.
My current neurologist ordered a sleep-deprived EEG and an open MRI. She also prescribed a new medication: Keppra. I was given pretty specific instructions for avoiding injury during seizures: no driving or operating heavy machinery (cancel my order for that bulldozer!), no going anywhere alone, no swimming alone, no cooking alone (as if I’d argue with that one!), no baths–showers only (please–if I got in the bathtub, I’d have to call Greenpeace to get me out!).
The MRI and EEG were normal–the first normal EEG I’ve ever had! This meant: A. I did not have a seizure during the testing; B. I don’t have abnormal brain activity while not having seizures; and C. There’s no permanent brain damage. Yay!
I expressed concern because I’ve been having trouble remembering words. I lose my train of thought. I still have major short-term memory issues. Having watched Mom slip away after multiple strokes and seeing what Parkinson’s did to a childhood friend and Alzheimers to a longtime family friend, I wanted to know if I was at risk.
“You don’t have Alzheimers,” my doctor assured me. “You’re far too sharp.”
Hey, that sounded like a compliment!
I guess being a writer, someone who’s made her living with words, I was sounding the alarms unnecessarily.
But I’m still epileptic. The test results also mean the Keppra is doing its job. The restrictions remain, because one can still have seizures even while medicated. But I’m fortunate to have a son who looks after me and two wonderful friends who are there for me when Collin can’t be. Carolyn drives me to almost all of my doctor appointments and goes into the exam rooms with me, remembering all the stuff I forget. Cathy always offers to drive us to the grocery store or anywhere else we might needs to go. I try not to take advantage of her generosity, except for an occasional stop at the grocery store on the way home from our writers group meetings. I know how fortunate I am to have three such wonderful people in my life. There are far too many others who won’t go five minutes out of their way.
Breathing a heavy sigh of relief here….