My Life With Epilepsy - Part 1 – Tremors and Secrets

I am a 56-year old woman who up until about 17 years ago experienced epileptic seizures.

Even though I no longer have seizures like I did when I was younger, I feel that I should share some of my experiences from the time it all started until the time I stopped having seizures.

My hope is that someone will be helped with what I share and that maybe if some caring neurologist reads my series on Hubpages, that they might see something that I and my doctors did not in the information I provide.

That being said, this is how it all started.

We had moved from a small town in Tennessee to a small to medium-sized town in Missouri just in time for me to start high school. I was 15 when we moved and turned 16 within four or five months after the move.

School had started and I was the new girl in a new school. I was also the new preacher’s daughter in town, so that came with its own set of issues, mild bullying, inuendos, and rumors.

At some point during the school year (I can’t remember exactly when), I started having random tremors.

For instance, I would be brushing my hair or putting on makeup and my arm would fling my brush or makeup implement across the room.

I was reading a book (also a movie later) based on a true story, “Seizure: The Story of Kathy Morris”, which scared me because of what was happening.

Therefore, these events made me concerned and scared to the point of trying to keep my tremors a secret from my parents.

I became scared that I might have a brain tumor, so I suffered in silence and said nothing to my parents. They hadn’t seen any instances of tremors, so until much later on, they had no idea I was having any problems.

A couple of times during family road trips, my parents did see me have leg tremors, but my father thought I was just overly excited and would tell me I needed to calm down. The thing is; I was calm.

I did eventually find out that they suspected something was going on with me when I became reclusive and seldom played my piano. They chalked it up changes due to being a teenager until two years later.

In the meantime, I relied on listening to popular music from that era (the 70’s) and prayed to God a lot.

I honestly never knew when a seizure would occur, so my brain stayed on high alert in case of an occurrence. Where would I hide? Who would see me?

I felt embarrassed and lonely even when I was with friends and family. My tremors (not full-blown seizures yet) occurred in the late night (some while sleeping) to early morning (whenever I woke up).

I would sometimes wake up with a sore tongue that I had apparently chewed on while I slept. I had these occurrences more than 10 times a month, usually around my menstrual cycle.

A little background about school, friends, and grades:

I usually made friends quickly no matter where I went to school. That was just how it always was. Everyone knew me and most people were pretty nice to me, but there was always something that was a bit off during my three years at this particular high school.

No one ever ignored me, which was okay with me, but I could have done with or without the attention. The popular kids, not so popular kids and geeks/nerds were within my circle of friends and acquaintances respectively.

I only had two or three close friends, but that was okay with me. I never desired to be popular or in the spotlight after I started having tremors. If anything I was more reserved and afraid to have close relationships other than with family.

Throughout my high school years at this school in Doniphan, Missouri, I became involved in the choir where I was given solos and was included in smaller singing groups like duets and quartets. I was often given responsibilities by some of my teachers in a variety of areas.

I excelled in English and Literature studies including extraneous programs like debate, public speaking, and drama, and in history and science. As a matter of fact, I excelled in all my classes except algebra where I barely passed and no one bothered to help.

I did ask for help in this area, but my requests were ignored. Either the people I was asking didn't want to help, or they didn't think I really needed it. I was considered a confident and capable young woman by my peers and parents.

My dad could have helped, but I probably didn't reach out to him. He would have enjoyed helping me learn Algebra. He was highly intelligent.

The worst things that I can remember of that time were some misguided and false rumors about me and my social life.

Being a preacher’s daughter contributed to that. The rumors were unfounded on my end. I stayed at home most of the time contrary to the rumors. I was too scared and reclusive to care about rumors.

I had a relatively normal school life (whatever that means). A somewhat disruptive home life (not on a regular basis). I was feeling lonely and reclusive, but my years at this high school and in Doniphan, Missouri were benign as far as I was concerned.

The tremors were my only real excitement other than having my brothers, sisters, nieces, and nephews coming for visits.

Part II will discuss another move and getting diagnosed. That will be written and published within a few weeks. This will be a six to seven part series.

Besides this series on my personal experience with epilepsy, I will also write an article or two per week about epilepsy in general, medications, alternative treatments, and side effects for your information.

I am not an expert or a doctor, so I will cite my resources as well as share my experiences and knowledge due to being the patient.

No one can truly know and understand how epilepsy affects a person, especially in the teen and young adult years, other than those who have experienced it first-hand.

I hope I can offer some insight for family members who have a teen child or sibling with epilepsy.