Facing Epilepsy with My Community

Rachel is sharing her eJourney about how her community helps her face epilepsy

By Rachel Robinson , Pennsylvania

Person with Epilepsy

Thursday, May 4, 2023

I was diagnosed with epilepsy in 2005 at the age of 25. Throughout my journey with epilepsy, I’ve had many different types of seizures. Most of the seizures I experience are focal impaired awareness seizures. During a seizure I stare blankly into space and may also demonstrate various automatisms like lip smacking, fidgeting, laughing and screaming.  

During these seizures, I may look like I’m aware and present, but I’m not able to respond to what is going on. A typical seizure lasts about 30 seconds to a minute, and afterwards I’m very confused, and oftentimes may not know where I am, or who the people are around me. It takes several minutes for my brain to reset. To recover, I may need a nap or to take it easy the next day. 

Over the years, I’ve tried numerous medications, none of which have brought seizure control. In 2010 I had brain surgery, a right temporal lobectomy, where a small piece of my brain was removed. Surgery, in combination with other medications, has significantly reduced my seizure frequency, from having dozens of seizures a week to now having about a dozen a year. 

Living with epilepsy has produced significant cognitive challenges for me, including short and long-term memory loss, difficulties with facial recognition and concentration, foggy thinking, fatigue, anxiety and depression. 

What has made this journey even more challenging over the last several years is that I developed a rare form of reflex epilepsy called musicogenic epilepsy, where listening to any type of music causes me to have seizures. Because of musicogenic epilepsy, I’ve had seizures in grocery stores, wedding receptions, church services, birthday parties, theater performances, movie theaters, gym classes, dinner outings, playing mini golf and more.  

To keep my seizure frequency down, I’ve stopped engaging in social activities like these where music is present. I wear earplugs during a trip to the supermarket or out shopping to make it through. Living with epilepsy and musicogenic epilepsy has caused me to withdraw from many things that brought me joy. It is the toughest challenge I’ve faced in life.  

Yet all is not lost. I have an amazing community of love and support from my husband, parents, family and friends. I have an incredible network of support from the Epilepsy Foundation Eastern PA, an organization my doctor told me about when I was first diagnosed. I volunteered there for years, and then started working there in 2018. The organization has provided me with immense support and helped me form much-needed friendships with others living with epilepsy. 

Reviewed By: Sara Wyen

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