My Life With Epilepsy – Part 2 – My Diagnosis Journey

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 searched for a neurologist. We lived in Fredericktown, Missouri at the time. They found a neurologist in St. Louis and that’s where I was taken.

I was 17 years old, left alone in a hospital without knowing what was going to happen. I don't remember feeling scared about being there. I was worried about what they would find, but I wasn't afraid of the hospital.

I was quite social as and enjoyed meeting and getting to know the staff, patients, and others who happened to cross my path. My parents came up to see me a couple of times and called me every day, but otherwise, I spent 7 days or so alone in the hospital undergoing one test after another.

They took a lot of blood for testing that first day. 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.

I was poked, prodded, X-rayed, and I endured tests including EEGs, 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 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 snatched the chart out of my eyesight when it came to the EEG documentation.

All my tests were negative except that one. I saw one line that said abnormal brain activity. It mentioned a particular quadrant of the brain, but I don’t remember what it was. This meant I should have been diagnosed with epilepsy or a seizure disorder of some kind, but no. That’s not what happened.

After all the tests were complete I went home to found out I had an appointment with a psychiatrist. What? I tried to tell my parents what I saw on the chart, but no one was listening. It's not because they didn't love me. They were scared just like me.

Since my father was diagnosed with a mental disorder, he put the seed in their ears that I was probably like him or his mother who 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.”

I was a virgin and had no desire to be sexually active. I was becoming an introvert and a recluse because of my fear of having a seizure in public. I was too embarrassed to go do what 'normal' teenagers were doing. He didn’t care about what I thought or said. I can't even say he was listening to me. Is that not what they are supposed to do?

After taking a mental health test, he told me I was manic-depressive. I was a 17-year old girl. I didn’t know any of my teenaged female friends who weren’t manic and depressive sometimes, and I told him as much.

I did speak my mind and express my distaste at his comments about me being pretty. He just seemed creepy to me. I was not a shrinking violet when I responded to his comments. Either he was a real creep (I think that's it) or he was trying to trigger me into a seizure to prove my condition wasn't physical.

Sidebar: While my seizures were somewhat triggered by stress or high emotional states, they mostly occurred during a specific week or two before my menstrual cycle. A few years later, my favorite neurologist told me that it could be related to a hormone imbalance.

Now I'll get back to the creepy psychiatrist guy (I don't recall his name; for good reason).

Instead of paying attention to the medical chart that recorded that I actual seizure activity was occurring, he insisted I had a mental illness that required me to take medications. Notice that I said medications, not medication.

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 still today.

The effects of these medications: 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 while I was on these medications.

My older brother came to our house in Fredericktown that Christmas and told my mom, “That’s not my sister.” ( I only know this because he told me a few years later).

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, his wife, or my nephew and niece.

I went to college mid-year at Florida College in Temple Terrace. It’s a nice college, but I was not functional enough to be in college miles away from home. I had seizures in the early morning hours, so I missed going to 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, my 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.

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. We went to the Little Rock Baptist Medical Center, which I believe is now called Baptist Health-North Little Rock.

I underwent the standard testing for epilepsy. I had EEGs and CT and PET scans. MRIs weren’t around yet, but I did have one a couple of years later when that technology was introduced.

Dr. Dickens, my favorite, 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 was also forthcoming and answered my questions, concerns, and didn't hold back information from me.

He diagnosed me with a seizure disorder, epilepsy that caused 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.

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.