Side-Effects of Medications

Editor’s note: This article addresses the topics of suicide and self-harm. If you or someone you care about is experiencing suicidal thoughts, please reach out to the crisis lifeline by calling 9-8-8.

I have been on medication for over half a century, and it’s foolish for me to assume that I’ll ever be off them. During that time, I’ve taken too many medications to name them all; some singularly and some in “cocktails” with as many as four medications (the most for me) at once. This spring, I’ll be passing a once seemingly forsaken milestone of two years seizure-free. So, I guess, why rock the apple cart by trying to get off all of my cocktails?

Childhood and early experiences

When I was a boy, I took whatever my mom gave me after she’d gotten a prescription from our doctor. In those days, doctors took the time to get to know their families, so my mom’s faith in their judgment restrained her from questioning their prescriptions about anything like side effects. Frankly, there were only a handful of medications for epilepsy back then. But once I became an adult looking out for myself, I started to get finicky, practically “sparring” with a couple of neurologists about what they were setting me up for.

A dark turning point

I had a near-suicidal experience just over 30 years ago. My life was like a falling string of dominos after uncontrolled stress caused my seizures to rampage, costing me two jobs, my own private apartment, and my car. When I woke up in a hospital the morning after a seizure caused me to drive into the side of a semi, it shocked me to see my dad sitting at the foot of the bed.

I had been brought to the hospital following the collision. Even though I felt okay with only a cracked rib, the cops and EMTs insisted on taking me to the ER, and I was too tired to protest their insistence on me staying for observation. I slept for 10 hours, during which my dad drove over 200 miles to take me to live with him and my mom.

Struggling and seeking help

That period became the darkest of my life emotionally. I wasn’t driving, and several times a day I had to leave our house through the garage, finding myself engaged in mind games. I would toss around ideas like, “If two cars are running in the garage while the garage doors are closed, would that hurt a person twice as fast as if only one car was running?”

Despite my rotten depression, I certainly didn’t want to harm myself! Realizing these thoughts weren’t nominal for me, I contacted my neurologist, who had prescribed the medication a month earlier. “Get me off this stuff! These aren’t normal thoughts!”

“Hmm. You’re right. Those are unusual thoughts,” he said. (It was still the “Dark Ages” before I knew to ask for an “epileptologist.”) He continued, “It’s good that you’ve been able to use it for a month. I didn’t expect this when I prescribed it.”

Since then, I’ve become much more wary of all doctors’ prescriptions. Not only does that mean asking my epileptologist about the side effects of a prescription, but it also means ensuring that a prescription from my dermatologist or urologist won’t conflict with my epileptic medications. This means asking questions of them and again from the pharmacist who hands it over to me, as well as reading the material the pharmacy gives me.

A decade after those suicidal thoughts, and under the care of a genuine epileptologist for the first time in my life, there was a period when I was trying one primary medication. It took me from a weekly seizure to maybe one every two and a half weeks. That seemed like decent progress. However, I was job hunting and on the phone a lot, and I felt I was going nowhere fast.

My mind was working a full sentence or two ahead of my lips and tongue, leading to a lot of stuttering, “uhms,” “uhs,” “and,” and “well”—along with brief silent periods and many tongue twists. If I were an employer, I would have been turned off by me as well. After six months, I had all I could take. This doctor was understanding, did some research, and we began a gradual withdrawal. He knew what he was doing.

Progress and challenges

My wife has only known me for the last 20 years and hasn’t seen me at my worst or during those periods under bad care. She has always known me as a “forgetful” and “absent-minded” person. Without any exposure to epilepsy before our marriage, I’ve shared the reports from my pharmacy with her, highlighting the side effects to be on guard for.

My current epileptologist (my fifth neurologist) has reduced the frequency and severity of my seizures so much that my epilepsy is somewhat of an “invisible disability” to my 14-year-old daughter. Nevertheless, she shares her mom’s annoyance with my forgetfulness and cognitive impairment. She was embarrassed when I was too slow and clumsy (again, listed side effects of my medications) to practice baseball with her and her team.

Support from family

She is very bright for her age but hasn’t witnessed me having a seizure since she was six—longer than half her lifetime ago! To help her understand my struggles, I wrote her a letter. This allowed me to express myself better and ensured I wouldn’t forget anything during a conversation. In the letter, I listed which medications caused which side effects. I’m glad I did that because now she’s more supportive of me than her mother.

Accepting the path of managing my mental health and medicine has finally helped me to see the need of honest communication, self-advocacy, and the support of loved ones.