I started having focal seizures at the age of 23. I had to stop driving. I had to stop studying. My whole life changed. Initially no one could tell me why I had epilepsy and medications were not helping.
My seizures got worse. They happened daily. I suffered third-degree burns from a seizure while cooking. I had infected cheeks and tongue from seizure related biting. I soiled my clothes from a seizure during work. By the age of 30 I felt isolated and full of guilt as I couldn’t even take my then two-year-old son to play dates.
My medical journey included three hospitals, three neurologists, a neuropsychologist, my GP, more tests than I can remember, four anti-seizure medications, a visit to ED, a naturopath, doctor of Chinese medicine and various diets.
After seven years I was lucky to be referred to the Austin Comprehensive Epilepsy Program after having an advanced MRI at The Monash that revealed scar tissue on my right temporal lobe, caused by encephalitis when I was nine months old. I was told brain surgery might be an option.
Shortly after, I had a focal seizure and two generalised tonic-clonic seizures through the night. My husband had to call the ambulance. This event was quite traumatic and now surgery was starting to appear as my only option to control my epilepsy and regain my quality of life.
When I was 31 I had a Right Anterior Temporal Lobectomy at the Austin hospital and it was a success! When I was seizure free for a year after surgery, I was able to drive again after eight long years off the roads, the freedom was fantastic; I could go places by myself and had a new-found sense of control on my life. I had another baby. I completed a Bachelor of Social Science (Psychology) and am now working as the Lived Experience Ambassador for the Australian Epilepsy Project at The Florey.
In the 10 years since surgery, I have only had three seizures - and have accomplished much more than I expected. The epilepsy team at The Austin changed my life after years of uncertainty, trial and error, stress, and fatigue.
“Everyone living with the debilitating effects of epilepsy should have access to this world-leading care.”