Interview with a Pharmacist ….who lives with epilepsy!

Author’s Note: Laura and I connected after she read my epilepsy memoir. We became fast long-distance friends and finally met in person at Epicon, a big epilepsy conference in Nashville.

Your name/location/age/work? Laura Joseph, age 29 Cayce, South Carolina.

Q: How old were you at diagnosis?

A: I was diagnosed at age 27, but the seizures had been happening for several years.

Q: Tell me about how you first became aware of the seizures.

A: The first one happened in my second year of pharmacy school; I was walking through campus and suddenly felt dizzy and nauseated, and so confused. After an unknown time, I discovered I was sitting on a bench near the library and I didn’t know how I got there. I had a headache, my heart was racing, and I couldn’t attribute it to anything. The same thing happened about 3 months later and then I started doing some research because I knew something wasn’t right.

Q: What was your initial reaction to your diagnosis?

A: The process of an actual diagnosis was very long. I went to my PCP and they found a slight heart arrhythmia and sent me to a cardiologist. I had an implanted EKG monitor for a while, but the docs thought there was more to the story and sent me to a neurologist. I went to Duke, a great teaching hospital, and the neuro I saw thought they were “nonepileptic” at first. But I pushed back! I advocated for myself, and he put me on the seizure drug Keppra. I didn’t know it was not good for people like me with depression. Being on that made me suicidal! I was angry that I didn’t know the whole story on that med. I changed neurologists, still at Duke. This doc thought it was anxiety-related also, and my EEG didn’t show anything. He put me on a different med which didn’t help my seizures. In 2016 I went to the Mayo clinic for another opinion. They gave me some recommendations like asking for a CT and MRI. The neuro at Duke seemed to think this was something emotional, and I decided I needed a female neurologist. She was more thorough and ordered more extensive tests. Finally there was enough data to show the seizures were coming from the frontal and temporal lobes of my brain; I had an answer at last.

Q: How would you describe your seizures?

A: I get stomach pain, I begin sweating, my heart races, and then when I come out of it I have a headache and my neck muscles hurt.

Q: What has been your scariest or strangest seizure experience?

A: At my most difficult time I was having around 20 seizures a day, so that was miserable and scary. On Lamictal it was down to 5 or 6 a day. It took a while for my friends and family to know when I was having a seizure, and they would go unnoticed often because my signs are vague. One time I was driving and I had one, and by the grace of God I didn’t have an accident. But it was terrifying!

Q :Tell me about your medication journey… What has been the most frustrating about the drugs?

A: Partly not knowing what side effects they might have, and since the seizures mess with my memory, part of the struggle is remembering every dose, even though I’m a pharmacist!

Q: How has this journey changed your view of medical care for people with long-term conditions?

A: It has really enforced the need for advocacy work, both on the individual and community levels. There is no Epilepsy Foundation chapter in South Carolina, and I really believe every state needs one! There is a huge need for education for the public, too; there are way too many stigmas attached to epilepsy.

Q: What is your biggest challenge in living with epilepsy?

A: I struggle feeling like I’m a burden to people, especially when I can’t drive. It’s so engrained in my psyche, it’s hard to shake. Then there is the mental and emotional burden of when my seizures happen and I need support, especially since I live alone.

Q: Have you experienced any surprising or unexpected gifts or blessings because of your diagnosis?

A: When I stopped driving in 2021, one of my friends gave me a lot of rides, and she had a new foster daughter. So we grew to have a very strong bond and I was able to see the impact she had and it made me want to try fostering as well. When my seizures were better controlled, I decided to go for it!

Q: What do you wish the public understood about epilepsy?

A: People with epilepsy can do anything! I feel like we are often looked down on or there are lower expectations for us. But look, I made it to become a pharmacist! It was my lifelong dream, I wouldn’t let anything stop me. We all have to dig into our talents and not let people’s doubts get us down.