Traci’s Story

I’ve had Epilepsy my whole life. I was born in 1977 and had my first tonic clonic seizure at 9 months old. I was officially diagnosed with Epilepsy in 2005 during college.

My seizures have changed over the years. They started as Tonic Clonic Seizures and have become Focal Aware Seizures. My seizures involve auras, nausea, “tingling, numbness feeling” from my abdomen to the left side of my face. My Left arm and Left leg often go completely numb.

Since I have had my Right Temporal Lobectomy (removal of my Hippocampus, Amygdala, and Temporal Lobe) in 2019 my seizures have become Focal Aware Seizures and are mostly at Night. I wake up feeling like I am in a tunnel, with flashing lights, coming at me fast. My whole body is numb and it is difficult to move. After my seizures I am very tired, have a headache and my muscles are sore. I have continued to take 4 anti seizure medications since my surgery.

I am a Registered Nurse but am currently not Practicing due to my health. I am Volunteering as an Ambassador through the Epilepsy Foundation of WI by helping to Educate and Advocate for others who have Epilepsy.

Kind words you would like to share with a parent or someone newly diagnosed:
When you are first diagnosed everything seems so overwhelming and scary. Please remember there are people around you willing to help you figure out how to manage this diagnosis. The hardest thing is Trust. Finding your circle of people to help hold you up on the hard days and celebrate with you on the good days. Start a really good notebook for yourself or family. In the age of technology the EPSY APP is a great way for you and your family to track things together such as your triggers, taking medication, or when your seizures happened and how long they were. I promise you will find what works best for you or what works best for your family. Your Medical Team is your friend- use them!

Connect with Traci:
Please feel free to contact me anytime.
Email: Tlkokke@hotmail.com
Ph: 608.865.1106