The Sudden and Life-Altering Impact of Adult-Onset Epilepsy

This month on Seizing Life® Jon Tuteur shares his journey with adult onset epilepsy. From his first seizure at age thirty, through his epilepsy diagnosis, treatment, and eventual brain surgery, Jon discuses the physical and emotional impacts of seizures, medications, diagnostic tests, and medical procedures in pursuit of controlling his epilepsy. He also tells us about his forthcoming book Seizing Today: Discovering Purpose and Authenticity in a Life Changing Diagnosis.

Jon Tuteur was a busy professional and self-professed “workaholic” in the prime of his life when he suddenly began experiencing seizures. Following several tonic clonic seizures, including two in front of work colleagues, Jon was diagnosed with epilepsy. The initial medication prescribed controlled his tonic clonic seizures, but Jon continued to have focal aware seizures for many years, experiencing over 500 seizures during this time. Jon provides a vivid description of his experience of focal seizures, detailing how they feel from the inside and appear to the outside world. When Jon’s medication began to lose efficacy, his tonic clonic seizures returned, and he started on a path of increasingly invasive tests to determine the origin of his epilepsy. This journey led him to stereo EEG testing and a prolonged hospital stay at Johns Hopkins, ultimately resulting in a decision to undergo laser ablation surgery. Jon details the surgery, the initially alarming results in its immediate aftermath, and the ultimately positive impacts of the procedure.

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