A LIFE WITHOUT SEIZURES ...
... IS WITHIN REACH
THE AUSTRALIAN EPILEPSY PROJECT (AEP) IS A PLATFORM THAT :
CONNECTS people living with epilepsy and clinicians to GLOBALLY LEADING technology and treatment through a nationwide network of sites in each state and territory.
Collects, curates and OPENLY RELEASES multi-modal data sets (advanced imaging, cognition, genetics, outcomes). Researchers can use this data to develop a deeper understanding of epilepsy and how to treat it.
SUPERCHARGES MED-TECH through using artificial intelligence and machine learning to bring new products and services to market.
I experienced recurrent, convulsive seizures that began “totally out of the blue” at the age of 14. Like a third of people with epilepsy, my seizures didn’t respond to any known medications, most of which also left me suffering intolerable side effects.
I would have violent seizures every single night, and it’s like having run a marathon after you’ve woken up from that. I couldn’t get up for school in the mornings and when I did make it into the classroom, I couldn’t take anything in. I couldn’t learn like I used to. I couldn’t socialise like everyone else. Seizures took over my life.
I thought I would have to live like this forever – that I wouldn’t be able to study or go to Uni or have a normal life until I met Professor Graeme Jackson at The Austin and he found a tiny part of my brain that was causing seizures, he said surgery was an option. To have surgery was a hard decision for me to make as an 18-year-old, but it was the best decision I could have made as it changed my life.
This year marks 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.
Five years on, I’m living the kind of independent life I didn’t imagine would ever be possible for someone with my form of epilepsy.
I live away from home and have completed my Bachelor of Education to become a teacher. I am driving myself to teaching relief jobs and hoping to soon secure a fulltime teaching position in a primary school.
My experience living with epilepsy has led me to become involved in the Australian Epilepsy Project as a Lived Experience Ambassador, contributing important insights from a patient’s perspective into the design and development of this pilot project. It doesn't seem right that I’m just one of the lucky one, everyone should have access to this type of treatment.
At 55 I had an unprovoked first seizure, I was a heavy truck driver, fit, married with 3 kids and had a mortgage. I had never had much wrong health wise. I collapsed in the cabin of the truck – thankfully, it was just before I turned it on. No one was there but I told my boss straight away. He thought it may have been a seizure. I was so worried about what this meant especially for my career. I had been in construction for nearly 40 years and I mainly drove excavators and tip-trucks, so I needed a heavy vehicle licence.
My GP sent me to the First Seizure Clinic. After the first visit the neurologists said that I probably do not have epilepsy but asked me to come in for more tests the next week. I spent a day at the hospital where they did advanced testing by MRI and cognitive tests and I had blood taken for a genetic test. I went back to the neurologist for my test results.
My results gave me the best news I could hope for – I would not have any more seizures. With the tests they could say with confidence I did not have epilepsy. My work is dangerous, so I had to wait 6 months before I could drive trucks again. I am back at work now and it is as if nothing ever happened. I am so grateful my neurologist at the first seizure clinic could get me the right tests to get an answer that let me get on with my life.
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 28 I felt isolated and full of guilt as I couldn’t even take my then 2-year-old son to play dates.
My medical journey included 3 hospitals, 3 neurologists, a neuropsychologist, my GP, more tests than I can remember, 4 anti-seizure medications, a visit to ED, a naturopath, doctor of Chinese medicine and various diets.
After 7 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 9 months old. I was told brain surgery might be an option.
Shortly after, I had 1 focal seizure and 2 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, after 10 long years, 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 3 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.”
I was diagnosed with epilepsy when I was 10 years old after having tonic clonic seizures. I continued to have these for many years and later I started having complex partial seizures (now called focal seizures). I was heavily medicated for years, to the point that I would fall asleep or would hold myself up from falling. I have Occipital lobe epilepsy; this can be triggered by many things, including lights flickering which I found many times from catching the train. In 1992 after seeing many different professionals I was referred to Prof. Sam Berkovic.
Epilepsy has affected every part of my life from not driving or working and feeling uncomfortable in social situations. I have 3 sons and after each was born and once even during birth, I had seizures. I was always waiting for the next seizure, which is like living in fear. I had no warning that I was going to have a seizure, the unpredictable nature of epilepsy was very scary.
I have tried almost every medication for epilepsy, and I have been in more than 10 clinical trials. The last trial which involved CBD in 2017 has decreased my seizure frequency from 9-15 seizures a month to only 2 in the last year. I am now 60 and after 50 years of suffering seizures I finally have the confidence to do things I never thought I would. Last year my husband and I travelled Europe which had always been a dream and I have confidence holding my grandchildren.
The Melbourne Brain Centre has helped me so much over the years and I am sharing my story so others can have the opportunity to get the same level of care I have received from them.
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 6 months which made life tough. The constant thought of having another seizure was always there, especially when I started driving again.
4 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 7 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 3 kids aged 5, 3 and 7 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.