What’s it like living with epilepsy? For me, it’s like living. Sure, it has had its trials but it hasn’t had a profound affect on my life nor has it been a big burden. Of course, I’m one of the lucky ones. My epilepsy
is pretty much a thing of the past. I suppose you could say I’m a part-time epileptic.
Apparently, it all started when I was four with pneumonia and a 106 degree temperature. Ice baths and antibiotics saved me but something in my brain got fried. That’s the theory anyway. Soon after, I started having periodic seizures but they were few and far between. I had one at age five and then none until about age ten or so.
The doctors immediately thought epilepsy despite a normal EEG and put me on Phenobarbital. When I continued having a cluster of seizures, they stopped the Phenobarbital. We later saw a neurologist from the Mayo Clinic who ruled out epilepsy and diagnosed me as having Vaso-Vagal Syncope, which I believe is a fancy term for fainting spells.
Many epileptics have what is called an aura, a sensation just before a seizure occurs. In my case, my vision would start to flip, with bands of darkness flipping through my eyesight. Because I could feel the onset of a seizure, the doctor instructed me to put my head between my knees to “ward off” the seizures. Sometimes this seemed to work, other times, I’d wake up sprawled on the floor, disoriented. Could it be possible that I have both fainting spells and epilepsy?
The seizures tapered off and I didn’t have any more until I reached my early teens. This time we saw yet another doctor and received yet another diagnosis, a fluid imbalance. He instructed me to drink lots of Gatorade. So I drank lots of Gatorade and plunked my head between my knees and once again, the seizures tapered off. They seemed to come in clusters and then disappear for a few years.
Because of my father’s job, our family moved every few years. So when my seizures started up again at the age of seventeen, I had to see yet another doctor. This doctor took a thorough history and insisted that I take a twenty four hour EEG rather than the standard one hour test. His diagnosis? Not Vasal-Vagal Syncope, not a fluid imbalance. He looked across his massive desk and said gravely, “I’m sorry to tell you, you have epilepsy.”
My mom and I looked at each other and said, “That’s great.”
The doctor looked shocked. How could we be happy with a diagnosis of epilepsy? After not having a definite diagnosis, it felt good to know what we were dealing with. The twenty four hour EEG apparently showed a clear cut pattern to back up his diagnosis and he said that the clusters, especially around the teenage years thanks to surging hormones, where fairly typical of some types of seizure disorders. He prescribed Phenobarbital saying that it didn’t work last time around because it takes weeks for the levels to build in the system and that the previous doctors didn’t let me stay on it long enough for it to have any effect. He also told me to keep my disease a secret, that epilepsy still carried a stigma.
It worked. Even though I hated the way the Phenobarbital made me feel, the seizures stopped. I can’t say I’ve experienced much discrimination or felt stigmatized by having epilepsy. I believe you define yourself and I choose to define myself as a normal person. I didn’t advertise the epilepsy but I didn’t take it into hiding either.
The biggest hassle I had with the epilepsy involved my driver’s license. In California, any time a doctor sees a patient who has experienced a loss of consciousness, they must report it to the Department of Motor Vehicles. I had to fight for the right to drive and prove my epilepsy was under control.
The other hassle I had with epilepsy had to do with getting off the Phenobarbital. My doctor said I’d likely outgrow epilepsy and could eventually taper off the drugs. So after getting married and starting to consider having children, I went to another neurologist to discuss getting off the Phenobarbital. You see, I hated taking it and skipped doses all the time. This doctor didn’t listen to a word I said. When he checked my blood levels, they were borderline “normal”. Instead of helping me get off the Phenobarbital, he increased my prescription! My general practitioner later told me that he thought he was probably covering his ass – in case I were to get in a car accident with low Phenobarbital blood levels the neurologist could get sued for not getting them up to normal.
Eventually I found a patient centered neurologist at Scripps Hospital in La Jolla. He agreed that since I had been seizure free for over ten years to let me get off the Phenobarbital. I had to get off slowly but with his guidance, was able to get and stay off the medication. It’s been over ten years since then and I’m happy to say, I haven’t had a problem with epilepsy, fainting spells or a fluid imbalance since. For me, living with epilepsy is a matter of living and dealing with what life throws my way.