A life without seizures is within reach

I started having seizures at the age of 23. My seizures got worse, at times occurring daily. I once received third-degree burns from a seizure while cooking. By age 30, I felt completely isolated. I spent seven years on medication that didn’t work. I’ll never get that time back. I eventually found my way to advanced MRI testing, similar to what is being offered as part of the AEP, where it was discovered I had scar tissue on my right temporal lobe caused by encephalitis as a baby. I finally had a precise diagnosis, and I could act. Twelve years after surgery I have regained my quality of life and I’m now a Lived Experience Ambassador and Participant Lead at the AEP.

Out of the blue, I began having recurrent, convulsive seizures from the age of 14.

I experienced violent seizures every night and felt exhausted, upon waking - like I’d just run a marathon. I struggled to get up for school each morning and when I did make it into the classroom, I struggled to concentrate. I had difficulty learning. I had difficulty socialising. Seizures took over my life.

I thought I would have to live like this forever. That I wouldn’t be able to go to university or have a normal life, until I met Professor Graeme Jackson at The Austin. He found the tiny part of my brain causing my seizures. He told me surgery was an option. The decision to have surgery was difficult as an 18-year-old, but it was the best decision. It changed my life.

2019 marked the five-year anniversary of the pioneering brain surgery that changed my life from the debilitating effects of my epilepsy. Freeing me from the constant seizures that had dominated my life as a teenager.I’m now living independently. A life I didn’t imagine would ever be possible. I completed my Bachelor of Education. I drive and hope to soon secure a fulltime teaching position.

My experience living with epilepsy has led me to become involved with the Australian Epilepsy Project (AEP) as a Lived Experience Ambassador, contributing important insights from a patient’s perspective into the design and development of the pilot study. It doesn't seem right that I’m just one of the lucky ones, everyone should have access to this type of treatment.

I had my first seizure when I was 21 years old in 2009, it was after a stressful period at university where I had been working extremely hard and having hardly any sleep.  The left side of my face felt strange and I felt myself falling back. I woke to paramedics around me and had bitten part of my tongue off after having a tonic clonic seizure. I was told it lasted about 20 minutes; it was a frightening experience as I had never experienced anything like this in my life. I had a sleep deprived EEG and MRI at the Austin, but they came back without an explanation for why I had a seizure. I was not put on medication as I wasn’t diagnosed with epilepsy, but I was scared I would have another seizure and I wasn’t allowed to drive for six months which made life tough. The constant thought of having another seizure was always there, especially when I started driving again.

Four years later, in 2013, I was at work and I felt a weird twitching in my left eye and saw a line of colours. This was my warning. I told my boss to call an ambulance. I woke sore, bruised and with a dislocated shoulder after what I later learned was another tonic clonic seizure. I went back to the Austin, had more advanced testing and this time I was diagnosed with epilepsy. This changed my life so much, I had to stop driving again and playing competitive basketball. The constant worry of when and where I will have another seizure played on my mind. I was given the opportunity with the Melbourne Brain Centre to trial a new drug, Eslicarbazepine, that was legal in Europe but still being trialled in Australia. I was checked up on frequently for seizure activity and mood.

It’s now been seven years and I have been seizure free the whole time. I feel less stressed about having any more seizures now as I know the drugs are controlling my epilepsy. Sometimes when I’m stressed, a get a black dot in my left eye, I feel this is a warning, so I take time out to rest and look after myself.

I am now 32, married and have three kids aged five, three and seven months and a challenging job directing film/tv and commercials. Life is stressful with a young family and demanding career, but in a different kind of way, a much better way than before my epilepsy was controlled. The Melbourne Brain Centre has given me an opportunity I don’t think I could have gotten from any hospital in Melbourne at the time. I fully support the Australian Epilepsy Project in making this possible for more people like me. I want others to have the same access to treatment that I was afforded for which I and my family are so very grateful.