In June 2007, at age 25, I lived in Champaign, Illinois. That month, I visited my parents at home in Arkansas. Only minutes after walking in the house I had a generalized/grand mal seizure. My parents told me about the trauma I had no memory of. That morning was the start of months of frequent grand mal seizures, ambulance rides, and hospital stays.
Frequently, I was out for the count! This resulted in an abrupt pause of independent living & my career. Often I couldn’t communicate, comprehend or remember anything. After the start of many trials of Anti-Epileptic Drugs (AEDs), I was better and not having as many generalized seizures, but still having painful facial muscle contractions.
Many inpatient and outpatient neurological exams helped diagnose Epilepsy. Exams included many in-office EEGs, Video & Ambulatory EEGs, MRIs, CT/PET scans. Ambulatory EEGs required many electrode wires to be glued to my scalp & chest and a recorder device carried at my waist or shoulder for three days or more. The Video Ambulatory EEG was similar and included a camera attached to my forehead to record my facial contractions. I could wear the devices and carry on with my regular daily activities with my caregivers. It was awkward but not embarrassing. Being mobile again and searching for a cure was most important.
In 2008, I returned to live in Illinois feeling better and taking AEDs that had my general seizures under control. The seizures caused facial spasms that shortly stopped my speech & breathing. I was always alert. It was uncomfortable in public, but not unbearable. I appreciate colleagues and friends who were patient and kind to me at work.
After several months, my seizures became more frequent. An overwhelming task of my treatments was dealing with the side-effects of many Anti-Epileptic Drugs. Some AEDs successfully controlled seizures. However, common side-effects I suffered were weight gain, drowsiness, slowness of comprehension and speech, lack of memory, and low energy. It was frustrating not knowing what was happening and many days not feeling able to leave home.
In mid 2011, my health declined & soon generalized seizures returned. New neurological evaluations from an epileptologist helped me find more treatments. I had taken practically every available AED med but not yet a treatment found to stop all of my seizures. This changed my diagnosis to intractable epilepsy.
By God’s grace I was with my parents at the start of my seizures in 2007. It’s healing to enjoy a sense of humor through struggles. I am grateful for parents who are my greatest loving support. Enduring health problems would be unbearable without loved ones.
Epilepsy has significantly changed my life. My growth and ability to learn the ongoing research for Epilepsy cures is encouraging. I value www.epilepsy.com and www.epilepsyfoundation.org as great resources for education and communication with others who share concerns of Epilepsy.
Thank God because there is a reason I am strong & still standing! Hopefully my testimony can bring awareness to all who did not know about Epilepsy and can help encourage anyone who suffers from Epilepsy.
Thank you for your prayers. Keep joy, faith and hope for a cure! Nothing is impossible.