Jeff & intractable epilepsy

  • June 22, 2023
  • 4
In this article
Frank (stages of epilepsy) with his book

Meet Jeff from New York, a trained psychologist, author and podcast host, he has been living with epilepsy since the age of 10. Read his epilepsy story below. 

Jeff’s life and career

I spend the majority of my time back and forth between New York and New Jersey. I earned my master’s degree in mental health counseling and have enjoyed many careers. As a clinical professional, I’ve used a number of alternative therapies to treat various conditions.  For example, I’ve used Neurofeedback to treat many different conditions. 

Check out his epilepsy podcast ‘Frank About Health’, live every last Thursday of the month between 5-6pm 

Tell us about your epilepsy story?

After a head trauma and a strep throat infection at the age of 10, I experienced my first seizure triggered by an extremely high fever. I was diagnosed with intractable epilepsy, but the cause was never identified because there were multiple factors that could have contributed to my seizures. My epileptologists were never fully able to control my seizures, but using a combination of medications and other treatments, I’ve had seizure free times worthy of celebration. This allowed me to complete college and even get a driver’s license when I was younger.

Read more: Intractable epilepsy treatment options

What has your experience been like with physicians?

When it comes to my neurologists, I’ve had good and bad experiences.  Some have wanted to do too many tests and induce too many seizures with no goal in mind. Many times it seemed like the neurologists were guessing about what medications to prescribe to control my epilepsy. Even when the medications work, there are many side effects and sometimes behavioral changes, but the doctors do not want to focus on this. Seizure control comes first, but sometimes when they overlook the side effects, it can unfortunately have severe consequences in one’s life.

Prepare for your next appointment: 15 questions to ask your neurologist

What support do you have?

For when I’m having serious seizure clusters and I really need support, I count on my parents, but they are getting older, so independence and my epilepsy is something I really think about a lot. I prepare myself for the worse case scenario, but also allow myself to live my life and consistently set achievable goals.

What inspired you to write Dating in the Dark?

I want my readers to experience what life is like for those living with epilepsy.  Epilepsy impacts all areas of our life, so being more specific allowed me to give better insights. Detailing the complexities of relationship troubles with epilepsy is just one way to highlight the confusion, loneliness, traumas, and lack of understanding linked to seizures. Dating in the Dark explores my intimate relationships living with epilepsy. I touch on many different epilepsy topics, such as stigma, independence, head injuries, auras, postictal, anticipatory anxiety, anticonvulsants, and more.  

You can get your copy here, I aim to spread awareness for epilepsy and aspire to get another book out there in the future.

Can you share a significant moment from Dating in the Dark?

When I crashed my car during a seizure, which was the last time I had my driver’s license. Guilt!  Plaguing guilt! It consumed my mind the way darkness does to a room when the lights are off.  I’ve come to know the darkness way too well. This time, it left me unable to speak. This was a familiar feeling. My vision was starting to become blurred, and there was a loss of control in my fingertips. What was happening to me?  If I didn’t know any better, I would think I was dying. But it was just a warning of things to come.

How do you use the Epsy App? 

I’m fairly new to the Epsy App, and I’m still exploring the ways it can help. I’ve found Epsy to be very informative and the Instagram page is a great resource for people who want their questions answered about epilepsy. The Epsy App is a great way for people to document and track their seizures.

What’s your main message for those living with epilepsy?

When living a productive life with epilepsy, I believe that sticking to a routine is of the utmost importance. Once you have identified your triggers and what works for you, then you should carefully lay out a schedule when it comes to sleep, medications, diet, exercise, relationships, etc. People don’t realize how much of a struggle epilepsy can be, but worrying and frustration about this lack of understanding and stigma doesn’t help. We understand our condition better than anyone and a gift of “empathy” comes with it, so use this intuitive sense to improve your life and the lives of others.

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