The Mighty Logo

When My Epilepsy Didn't Look Like Epilepsy

The most helpful emails in health
Browse our free newsletters

The day my husband told me that I looked as if I was convulsing in my sleep, I thought nothing of it. Surely I was just having a bad dream and flailing around. I noticed I was much more groggy that morning and was having difficulty keeping my eyes open at work. Again, I attributed that to possibly not sleeping well. The conversation went unmentioned again.

I began to notice some strange issues I was having during the day. While on the phone at work, I would accidentally slur my words or I would just space out and altogether forget what I was supposed to be telling them. All throughout the day, my muscles would suddenly jerk. I began to wonder if something was going on, but epilepsy was most certainly not on my radar. “Isn’t epilepsy when people fall on the floor and convulse wildly? An unmistakable grand-mal seizure?” I thought. I didn’t realize how wrong I was.

Other relevant stories:
How Many Hours Should a Person with Epilepsy Sleep
Can People with Epilepsy Drive
How Does Epilepsy Affect Daily Life 

Some time had passed since the conversation with my husband. I noticed that on some days I still felt that horrible unable-to-wake-up feeling. One day when I returned home from work, I was sitting on the couch with my husband. But suddenly I wasn’t. I was opening my eyes to a hospital room. I looked around and saw my husband and mother staring at me with concern. They explained I had gone into convulsions and that even when they stopped, I was not coherent. I couldn’t properly respond to anyone or stay conscious. I felt conscious now, albeit still a bit sleepy.

The doctor discharged me and urged me to see my primary care doctor as soon as possible. I looked at the discharge papers and saw that my diagnosis was “post-ictal confusion.” I looked up the term and realized that post-ictal means after a seizure. The note on the next page stated in all capital letters, “PLEASE FOLLOW UP WITH YOUR PCP NEEDS WORKUP FOR SEIZURES.”

My heart sank. How could I possibly be having seizures? I’m 25 years old, how was this happening just now? Before I had time to go to my PCP, I had a seizure at work. I was carted off to the ER and promptly admitted for a workup. They started me on medication and performed an electroencephalogram, or EEG for short. When the results were analyzed, the doctor informed me that the EEG picked up brain waves consistent with epilepsy in my left temporal lobe. I learned of partial seizures that explained my slurred speech. I learned of myoclonic seizures that explained my muscles jerking. I learned of absence seizures that explained my staring off and forgetting what I was doing all of a sudden. Epilepsy was not just grand mal seizures. The concept of epilepsy changed completely for me.

I asked if they needed another EEG to determine if there was activity in other parts of my brain. They told me that there was no need seeing as they already determined there was epileptic activity and it could be happening in other parts of my brain regardless of whether the EEG picks it up at the time. I was started on a regimen of medication.

My life was turned upside down. I had to quit working as I was unable to safely continue making the hour-long commute to work. I went through nasty side effects of new medicines being changed up constantly. I had to face the reality I never thought I would have to face. I have epilepsy and it affects my life in a very significant way. I’m a fighter, and I will not let it win.

Ultimately, the biggest surprise in this journey was the lack of understanding. Nearly everyone pictures a grand mal seizure when epilepsy is mentioned. Most of them did not understand that epilepsy can manifest in many different ways. They didn’t understand the huge impact that epilepsy has on a person.

My hope is to raise awareness. There is a lack of proper understanding of epilepsy, even among professionals. Epilepsy has been put on the back-burner of research. There has been very little fighting to understand epilepsy and look for better treatments. As a community, if we continue to speak out, someday the right person will hear. We can’t give up and stifle our voices. Keep fighting, Mighty community!

Getty image by Veranika Smirnaya.

Originally published: January 1, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home