My Life with Epilepsy – Part II – My Diagnosis Journey
As I See It
In order to write my story, I have to try to recall specific instances, which are sometimes vague. However, I do my best to describe what was happening to the best of my recollection. I do include what I was thinking, or at least what I think I might have been thinking at the time. I was pretty happy in general and I was prone to rolling with the flow, or at least that’s how it seemed to outsiders. Inside I was a scared little girl.
Once my parents realized I was having seizures (I managed to hide it for two years), they asked around about neurologists. At the time, we lived in Fredericktown, Missouri, and the closest and best facility was in St. Louis. At least that’s where I was taken.
I was 17 years old, left alone in a hospital without knowing what was going to happen to me there. My parents came up to see me once or twice, but otherwise, I spent 7 days or so in the hospital in St. Louis.
I remember they came in and took a lot of blood from me for testing. Very little information was given to me, even when I asked, about what they were doing to me. They gave me a pill, that I now believe was phenobarbital, which became my primary medication after a year on Dilantin a couple of years later in my life.
I was poked, prodded, X-rayed, and endured tests including EEG, CT scans, mammograms and tests on my digestive tract. I have to admit, I did it all without complaining and the nurses said I was a real trooper. That’s about all I remember about the interactions I had there other than with the doctor.
The neurologist on my case was nice enough, but when he came to my room to talk to me about the results of all those tests, he took the chart out of my eyesight when it came to the EEG. All my tests were negative except that one. I saw one line that said abnormal brain activity in the brain. It mentioned a particular area of the brain, but I don’t remember what it said. This meant I should have been diagnosed with epilepsy or a seizure disorder of some kind, but no. That’s not what happened.
Me and My Daddy
What happened next was I went home and found out I had an appointment with a psychiatrist. I tried to tell my parents what I saw on the chart, but no one wanted to hear what I had to say.
Since my father suffered with a mental disorder (or two-not sure), he put the seed in the ears of the doctors that I was probably like him and had fits. That’s how he referred to my seizures my whole life. I had fits. It was kind of funny, but also annoying. He was my dad, so I knew how he thought.
My appointment with the psychiatrist was a fiasco, in my opinion. One of the first things he said to me was “You’re a very pretty young girl. The first thing we need to do is get you on birth control.” Mind you, I was a virgin and had no desire to have sex at that time. I was an introvert and recluse because of my seizures. I was too embarrassed and ashamed to go do what “normal” teenagers do in the world. He didn’t care about what I thought or said.
After taking a test on my mental health, he told me I was manic-depressive. I was a 17-year old girl. I didn’t know any of my female friends who weren’t manic and depressive sometimes, and I told him as much.
Instead of paying attention to the medical chart that recorded actual seizure activity, he insisted I had a mental illness that required me to take a number of medications. The medications prescribed to me included Librium, Haldol, and Valium. I was completely taken back by how many medications I was expected to take. This is probably why I hate drugs.
The effects? I remember almost nothing from the few months I lived in Fredericktown, Missouri. I have vague memories of going to school. What I do remember is that I would take my medication, go to school, come home, do my homework, go to bed, and start over again the next day. I was numb. I felt nothing. I had no emotions. I also experienced more and stronger seizures on these medications.
Two Years Before My True Diagnosis
My brother came at Christmas that year and told my mom, “That’s not my sister.” I’m not sure what happened after that, but my mother stopped making me take those pills. I don’t remember that Christmas, or seeing my brother. My mother and my brother told me this story.
I went on to college mid-year at Florida College in Temple Terrace. It’s a nice college, but I was not exactly functional enough to be in school at that time. I had seizures in the morning, so I missed chapel and my first class (7:30 am) most of the time. I made pretty good grades despite my condition and the challenges it created.
However, the voice teacher gave me an incomplete for not showing up for a recital and wouldn’t change it even after my mother told him the situation. My psychology professor wanted to give me the “A” I had earned, but because I missed so many classes, he also had to give me an incomplete. I had A’s and B’s in my other classes.
I don’t remember much of Florida College or the people I met. I have a few vague memories, but nothing significant.
Finally, a Diagnosis
After going to college, going to work at JC Penney for a few months, returning home, and I wish I remembered what else, my mother finally took me to another neurologist. This time, I was 19 and living in Damascus, Arkansas with my parents and we went to Little Rock’s Baptist Medical Center.
I underwent standard testing for epilepsy. I had EEGs and CT and PET scans. MRIs weren’t around at that time, but I did have one a couple of year later. This neurologist was a nice man with a great bedside manner. He had kind eyes and he was patient and caring. I was at ease with him, unlike most doctors.
He diagnosed me with a seizure disorder – grand mal seizures. He prescribed Dilantin, an anti-seizure drug that I took until I was 22. I did experience side effects like contact dermatitis on my legs, but otherwise, it worked and I was seizure-free.
Part III – Next, Getting Married and Having a Baby
My next hub related to My Life with Epilepsy will continue with what happened to me from the age of 20 to 23.
Please see my hub, My Life with Epilepsy - Part I - Tremors and Secrets.