Unmasking the Hidden Symptoms: Epilepsy's Impact on Personality

What I thought were character flaws, were symptoms of my disease

A brain disorder is not a prison sentence.Photo byH. Mikel Feilen

I was diagnosed with epilepsy back in 1970. When I had my first seizure I was 15 years old and a sophomore in high school. However, because of the era, everyone thought I was on drugs. (I now wish that was the case.)

However, it was after I started having seizures that I began my heavy-duty daily regimen of drug-taking.

The doctors back then were nowhere near as savvy about epilepsy as they are today. They poked, prodded, and probed every orifice on my body looking for evidence that I was a hippie just having a bad trip. Then after a couple of spinal taps, they only found the monster - Epilepsy - running around in my brain.

As the years passed, I learned to cope with my seizures and the brutal punishment I doled out to myself during each convulsive episode. What I did not know was that many of the characteristics about me, especially the ones I didn't care for, were symptoms of epilepsy buried deep within.

An article I read, written by Scarlett Bergam, M.P.H. called "4 Mood Disorders Associated with Epilepsy", discusses 4 of the major mood disorders found in seizure disorder patients. - Often, people do not realize that these disorders can be directly related to Epilepsy and are not necessarily character flaws.

The 4 discussed are:

1. Major Depressive Disorder
2. Anxiety Disorders
3. Bipolar Disorder
4. Post-Traumatic Stress Disorder

I have Juvenile Myoclonic Epilepsy, and after 40 years of dealing with seizures, I was finally diagnosed with the specific type of epilepsy that I have. I was also told that certain personality traits I had were due to the disease.

My doctor told me that certain characteristics I had were an epilepsy brain thing. "Chronic Anger Disorder, severe depression, and wanting to change your surroundings (both work and living) are caused by your epilepsy.", she said.

My doctor helped me understand how my brain works regarding its electrical system and what is going on up there to make me angry, depressed, or restless enough to move, change jobs, or both.

Dr. Schwartz was the best doctor I ever had and helped me more than I can ever express in words. She died from Cancer 6 months after our first visit together. Proving everyone has their monsters withiin. Miss you Mindy.

Unless you have had a seizure, knowing more convulsive explosions are in your future, it is impossible to appreciate the fear a person has when they feel the first simple partial seizure, better known as an "Aura", alerting them a grand mal doozy is about to happen - and there ain't nothin' you can do about either.

In the past 54 years of dancing with the beast and allowing it to have its way with me, I have had at least one hundred grand mal seizures. The fact that my seizures are extremely volatile, with a lot of head pounding, means I usually end up with a concussion.

Maybe this is why my doctor asks me how my memory is every time I visit. I usually answer, "Well, I remembered how to get here. Didn't I? By the way, Where am I?" I laugh and they look back at me with a crooked smile and a nod.

DepressionPhoto byH. Mikel Feilen

For decades I have suffered from this hideous disease, always living in fear of the next seizure. Once I feel the aura, at least for me, I know I am about to be pulled out of my consciousness by the monster to be abused brutally.

Then only to awaken on the floor with my tongue chewed up and my skin scraped off parts of my body - Oh, and possibly two black eyes and a broken nose. One thing for certain, after all of my seizures I wake up with a pounding headache and am ready to sleep for 3 to 4 days.

For most people who do not have epilepsy or a seizure disorder, it is impossible to comprehend the feelings of being miswired in some bizarre way. It is an odd feeling at first, being told you have epilepsy. I know what I felt - I felt less perfect as a human being. (probably sounds a little weird) I later realized everyone is imperfect, my imperfection was just more high-energy apparent.

However, what I have learned is that a mental disorder is not a prison sentence.

It may feel like one but it is not! I was a professional dancer my entire adult life - seizures and all. I never had a seizure while performing (Thank God!), but I did frighten a few of my students, especially when I hadn't informed them of my epilepsy.

It didn't take long before I made it a point to tell everyone around me about the monster within. Trust me, you don't want to surprise friends, clients, and co-workers with a seizure - it's a scary thing to watch.

The point of this article is to enlighten others about epilepsy. Most folks, when they think of epilepsy, they immediately equate it with having a seizure. Yet, this is but one symptom - the visible symptom.

A grand mal seizure is a physical nightmare that one can witness and understandably label as a disease known as Epilepsy. Yet, it is still a piece of what an epileptic may endure.

A diagram about Epilepsy and what people see and what they do not.Photo byEpilepsy Foundation of America

My education about epilepsy in 1970, when I was first diagnosed, was close to nil.

"Here! Take these pills and hopefully, you won't have as many seizures." is what my neurologist said to me back then.

Today there are tons of great ways to find knowledge about the disease along with online support groups to help people. One of my favorite sites that helped me and introduced me to other epilepsy warriors around the world is My Epilepsy Team.

I have met people on this site that I have now known and been super dear friends with for more than ten years. One of my best friends lives in Perth, Australia, (Ash Staker-Gunn) and suffers from a different kind of epilepsy that is hormonal and messes with her menstrual cycle. Poor baby is a mess each month and her seizures are extremely nasty like mine, except hers are more frequent.

There are an estimated 3.4 million people battling epilepsy in America and 470,000 of them are children. In the world, there are approximately 65 million people who suffer from epilepsy.

There are positive aspects to any challenge in life including epilepsy. For me, I know that I am more empathetic and understanding when it comes to others and their physical and mental issues.

I also think my art and creative juices are influenced by my brain disorder. How much I'm not sure. However, I do know that my unwanted guest is here to stay. I wish I could evict the beast but unfortunately, this is not an option.

References:

Epilepsy Foundation - /www.epilepsy.com

Mayo Clinic - Epilepsy - Symptoms and causes - Mayo Clinic

Peace, Love, and Unconditional Happiness!

P.S. "Stay Seizure-Free!"

I'm Done!Photo byH. Mikel Feilen