Epilepsy Blog Relay: New epilepsy diagnosis after seven years

After seven years of struggling to get a proper epilepsy diagnosis, Laura finally found a neurologist who would listen. She’s now a year seizure free!

Laura’s Epilepsy Diagnosis

Epilepsy… that’s a word I’ve only learned to say in the last year or so! I had my first seizure in my 2^nd year of pharmacy school. I was 21. That day changed my life in ways that I didn’t expect. I was walking through campus at the University of South Carolina between the parking lot and pharmacy school. I had been battling a sinus infection, double ear infection and strep throat and suddenly started feeling dizzy and nauseous. Like the feeling you get at the top of a rollercoaster when your stomach is about to drop! I managed to find a bench outside the library and sat down and when I “came out” of it, I didn’t remember what I was doing or where I was.

Maybe it’s heart disease?

My second seizure didn’t occur for another 4 or 5 months. I was referred to a cardiologist because my heart races before and after a seizure. They discovered that I had a right bundle branch block and had me wear a holter monitor for 2 weeks. I continued to have “spells” but nothing showed on the monitor. They placed a continuous EKG and referred me to a neurologist at Duke, close to my parents.

What the heck are pseudoseizures?

I tried a number of medications and had a number of tests run however nothing showed up on these tests that gave a reason for my seizures so they labeled them pseudoseizures and changed my medications again. After 2 years, I had the EKG monitor removed once it was evident to my cardiologist that it was not to do with my heart.

During this time I poured into advocacy and volunteering for the Alzheimer’s Association, another cause near to my heart, as a way to distract and redirect the anxiety I was feeling. I also learned a lot about who would be there to support me. I knew that I was having seizures but because I don’t have tonic-clonic (grand mal) seizures sometimes people thought I was just spacing out for a few minutes and they didn’t take it seriously.

Finally, a neurologist that listens

In 2021, I was finally able to find a neurologist local to me in Columbia, SC. Shortly before my first appointment with her, I joined a few support groups on Facebook. On one of them, I found out about a book about a woman’s journey with temporal lobe epilepsy, the same kind of seizures I had determined through my research that I had. I bought her book but didn’t read it for a while. One day, I was having a really bad day with my depression and just started reading. I finished the whole book within the day and the whole time I said “This woman is in my head. This is me!”. By the way, if you want to read the book, it’s Seized and Driven by Suzanna Price.

I took some of Suzanna’s advice and asked my new doctor if she would consider do an extended EEG for me. Four days before my 28^th birthday, I entered the hospital for my 5-7 day EEG. We were able to detect enough activity that my doctor was able to release me in the morning of the my 28^th birthday! She said to me that morning, “This is real. You are not making this up in your head. We’re going to figure this out.” She had a student with her that day and encouraged him to make sure to always listen to his patients!