Managing Epilepsy and Mental Health

Living with epilepsy has been an evolving journey that has shaped the person I am today. My story began when I was 16 and experienced my first seizure. It was a frightening experience.  It came without warning, and I had no idea what was happening. The seizure was followed by a whirlwind of doctor visits, tests, and medications, but I didn’t have a clear diagnosis for quite a while. It took almost two years before I was diagnosed with juvenile myoclonic epilepsy (JME). The delay in diagnosis was frustrating, but once I finally knew what I was dealing with, it was a relief to get proper treatment.

JME is a type of epilepsy that typically begins in adolescence and is characterized by myoclonic seizures, which involve quick, involuntary jerks of the body or limbs. The diagnosis helped me get the right medications, and for a while, my seizures were under control. It felt like a breakthrough, and I finally thought I could live a more normal life. However, as with many things related to epilepsy, the stability didn’t last. After a few years, I had a breakthrough seizure, and from that point on, the frequency of my seizures began to increase. It was disheartening, but I kept seeking answers, knowing that something needed to change.

It wasn’t long before I was diagnosed with catamenial epilepsy, a form of epilepsy in which seizures are linked to the menstrual cycle. Seizures often increase around certain times of the month, and this new diagnosis allowed me to better understand what was happening with my body. With the right medications, I found some stability again for a few years. As time has passed, however, the seizures have become more frequent and, in recent months, have started happening while I’m asleep. The thought of having a seizure in my sleep, when I can’t protect myself or even know it’s happening, has increased my fear and anxiety. It adds a new layer to the constant worry I already live with.

I’m now 24, and the unpredictability of my epilepsy has taken a toll on my mental health. The anxiety and uncertainty about my future is overwhelming and exhausting at times. I never know when a seizure will occur, and lately, they have been more frequent. It’s tough because even though I try to do everything right—taking my medication consistently, managing stress, getting enough sleep—the seizures still happen. I want people to understand that epilepsy can be unpredictable. There are so many triggers that can set off a seizure, and sometimes we can do everything we’re supposed to, but it still may not prevent them from happening. There’s no one-size-fits-all approach to managing epilepsy, and the diagnosis itself can change over time.

Seeking help for my mental health was one of the hardest but most important steps I’ve taken. I began seeing a psychiatrist, who helped me navigate the complexities of bipolar II, and I started therapy to address the depression and anxiety that had taken hold of me. These mental health challenges made living with epilepsy feel even more isolating. The psychiatrist prescribed medication to help stabilize my mood, and through therapy, I developed coping mechanisms to help me manage my anxiety about the seizures. It wasn’t easy, and there were days when it felt like progress was slow, but the combination of therapy, medication, and self-care allowed me to take control of my mental health in a way I hadn’t before. The most important lesson I’ve learned through this entire journey is that seeking help—whether it’s for epilepsy or mental health—isn’t a sign of weakness. It’s a sign of strength. I’ve learned that it’s okay to admit when things are too much and that asking for help doesn’t make me any less of a person.

The Epilepsy Foundation has been another vital support in my journey. They connected me with resources to help me receive a proper diagnosis and the right medication, which made a significant difference in managing my epilepsy. They provided me with valuable resources, information, and a sense of community, and I’ve connected with others who understand what I’m going through. They’ve also empowered me to advocate for myself and speak up about my treatment.

I decided to tell my story because I want to inspire others to share theirs and to show that there are people who relate and understand what they're going through. Epilepsy and mental health challenges can feel isolating, but by sharing our experiences, we can build a community that supports and uplifts one another. I hope my story encourages others to speak up, to advocate for themselves, and to know that their voices matter. As people living with epilepsy, we have to be our own advocates. It’s not always easy, but we have to communicate effectively to ensure we get the care we need and deserve. 

I want others who are going through similar struggles to know they’re not alone. The journey of living with epilepsy is full of ups and downs, and the road can be long and uncertain. Having the right support, understanding, and treatment can make a difference. Even though I don’t have all the answers, I continue to advocate for myself, learn about my condition, and hope that one day there will be more effective treatments or even a cure. Epilepsy may be a part of my life, but it will not define me.