Zoe’s Story


At the age of 3, Zoe’s mother noticed that she had a very unsteady gait, which progressed over time, as well as her increased clumsiness, headaches/migraines and shaky hands.


“Due to these symptoms my doctor originally believed I had a brain tumour. I had an MRI, which ruled out the chances of any tumours so I was then sent for an EEG at my local hospital. It came back inconclusive as it was done while I was awake. However, my mum and doctor both knew something more was going on.”


Zoe went for multiple MRIs and EEGs (performed while asleep) and was ultimately diagnosed with nocturnal myoclonic epilepsy and tremors around the age of 7. This meant that Zoe’s seizures only occurred while asleep.


“The way I commonly explain this to those who are unsure is that feeling when you are drifting off to sleep and then your body jolts, waking you up. It can be very unsettling right? Well, that’s what my myoclonic seizures are like. I was placed on Epilim and Lamictal, which caused my hair to fall out and it lowered my calcium levels causing me to break my arms six times before my medication was changed. During this time, when my tremors where probably at their worst, kids at school were quite harsh and would mimic me, which was difficult.”


Over time, Zoe learned that awareness and knowledge around epilepsy is limited, allowing her to empathise with those who perhaps didn’t understand the condition and required more education and knowledge surrounding epilepsy. Thankfully, Zoe’s epilepsy eased towards the end of primary school up until Year 9.


“My first vivid memory of a myoclonic seizure was when I was sitting in class. I remember jolting and nearly knocking my entire desk over. Immediately after, my arms and legs on my left-hand side turned freezing cold, and then I began experiencing severe pins and needles shortly after. It felt just like a sensation of electric shock. I didn’t know what had happened, until I got home and spoke to mum. I hadn’t experienced a seizure during the day before.”


At this time, Zoe’s seizures were getting worse at night, experiencing them every couple of minutes. Her tremors also worsened, and she was unable to remember anything after they occurred as she was not awake. Though, Zoe found herself waking up just as fatigued as when she went to bed.


Fortunately, Zoe’s medication was altered, with her seizures having been under control and reduced to minimal night time occurrences for the last four years.


“I am now 18 and I have been living with epilepsy for almost twelve years. I have just gained my licence, and even though it has been a challenge, I have learned the power of positivity. If we work together, we can achieve better quality of life and awareness.”


You can help us support people living with epilepsy, like Zoe, by donating today. Visit fundraising.epilepsyfoundation.org.au/donation

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