The Mighty Logo

When Doctors Struggled to Diagnose My Epilepsy

The most helpful emails in health
Browse our free newsletters

Let’s talk seizures!

Yes, they can be very scary, but for many people, they are totally manageable through medication. There are many different types of seizures, and some are more serious than others. I was diagnosed with seizures at the age of 18 it and it took a year for them to get the medication right.

It all started when I had uncontrollable head movements, so I was admitted to the hospital. They did an EEG, which is the test they run to see if there is seizure activity. Once they discovered there was, they put me on medication. Unfortunately, it didn’t work out because I could not function on that particular medication. It caused me to become very lethargic — all I wanted to do was sleep.

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

After I was discharged from the hospital, I went to a neurologist. They ran another EEG, but this time found no seizure activity. My neurologist told me to seek physiological counseling — she felt I was under stress. It is hard to believe she was serious about that diagnosis. I was in my senior year of high school at the time and didn’t have any stress beyond the average high school student. I definitely wasn’t to the point where I needed counseling, or where stress would be causing serious medical concerns.

After that, I went to a new doctor who sent me to a cardiologist. I had to wear a heart monitor for a month to make sure I didn’t have heart problems. Luckily, I didn’t. The problem was still seizures, they just had a hard time diagnosing them. They could not diagnose my seizures for the longest time because they were almost impossible to see. While seizing, my eyes shut and flicker but my vitals remain normal. They say my tests come back normal because the seizures are so deep in the brain, the test is not picking them up.

Eventually they were able to give me an official medical diagnosis of epilepsy. They don’t call what I have “seizures” — rather, they refer to them as episodes. I am taking a medication which is used to treat partial seizures. The triggers for my seizures typically are sleep deprivation, bad diet or stress.

You may think epilepsy would mean there is a lot of stuff I can’t do. Thankfully, that’s not the case. My seizures don’t restrict me from doing any of the things I love to do. I love to go to theme parks and I love the beach. I’m a very strong swimmer and I’m not worried about seizures while in the water. I just make sure not to swim alone for safety reasons. The important thing is that I manage my medication, and let doctors know if anything changes.

I hope this helped you learn a little more about my seizure disorder. If you have questions, feel free to leave a comment and I’ll do my best to answer!

Getty image by Sudok1.

Originally published: May 16, 2018
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