Living with Refractory Epilepsy

Tiffany had her first seizure at 16 years old. She had gone to bed after studying for a history test, and woke up the next day on a gurney bound for the hospital. This first seizure caught her completely by surprise, and for years seemed to be some sort of fluke occurrence. At 22 years old she passed out during a grand mal seizure at the wheel of her car, waking up to find herself crashed into a tree. She felt lucky to be alive, but dismayed to be diagnosed with epilepsy. From that point forward she has experienced seizures constantly, as if a switch was flipped and seizure mode was permanently activated. Over the past 14 years since her epilepsy diagnosis, she has learned a great deal about acceptance and sacrifice in the pursuit of her best life.

In this episode of the Major Pain podcast, Tiffany shares her epilepsy story along with valuable insights and practical tips about her disease. She spent painful years experimenting with different medications to control her seizures, learning that she actually has refractory epilepsy. This form of the disease is characterized by difficulty controlling seizures through medication. Although her current medication helps to prevent grand mal seizures, she experiences complex partial seizures daily. She tells us about having an SEEG test (stereoelectroencephalography) in which electrodes were placed inside her brain to determine the location of her seizures. She had hoped to discover that the location would be operable, but learned that the risks would be too great. Since surgery is not an option and medication only brings partial relief, Tiffany has adapted her life to accommodate her constant seizures. She shares valuable tips and tricks for thriving with her disease, as well as guidelines to follow should you encounter someone experiencing a seizure. She also tells us about her work on behalf of the epilepsy community, as a blogger, advocate, and the founder of the The Epilepsy Network (TEN).

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