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Before being diagnosed with epilsepy at the start of 2019, Sophie was living with symptoms of the condition for some time.
“My epilepsy went undiagnosed for about five years, easily mistaken by myself and those around me as anxiety attacks.”
As time passed, the attacks became more frequent—up to 15 times a day. Those closest to Sophie expressed concern about her wellbeing.
“My partner and I would be doing simple tasks like cooking dinner or shopping, when I would shut down and have what we believed to be an anxiety attack. We couldn’t pinpoint any reason for the attacks and so he encouraged me to see a psychologist. My housemate at the time also felt something was ‘off’.”
As a university student, Sophie was already going through a stressful time. Living with undiagnosed epilepsy amplified the situation.
“On reflection of my childhood, there were some things at school I couldn't remember as well as my peers. As I started university, the demand and stress increased, bringing on my focal seizures.
“Thinking these were ‘anxiety attacked’, I looked to exercise as a way to manage my stress, but this increased my fatigue and I ended up with more regular and more severe seizures.”
It was a vicious cycle for Sophie, which only worsened as time went on.
After graduating from university, two weeks into her first job, Sophie experienced her first nocturnal seizure.
“It was this seizure that led to my epilepsy diagnosis.”
Although it was a relief to know what was happening to her, Sophie acknowledges things didn't automatically become easier once recieving a diagnosis.
“After I was diagnosed, I was navigating a new job and trying to manage my seizures with various types of medications, unfortunately none of them were working. “
Frustrated by the ongoing impacts of epilepsy, Sophie decided to take charge and sought a referral for specialist care at the Mater Centre for Neurosciences.
"I had two choices. I could either sit in the corner and cry, as it was just toon hard, or be proactive and do something about it."
“Mater’s advanced care team for patients with epilepsy was exactly what I was looking for, and the care I received was exceptional. I continued to trial a few medications; however, I was still resistant to them. This is when the option of surgery arose.
“I consulted with Dr Papakostas, and he advised me that surgery could be an option due to this resistance. He was very reassuring throughout the decision-making process and I felt very confident about having surgery.”
In June of 2020, Sophie underwent life changing neurosurgery to remove her right temporal lobe and half of her hippocampus. The surgery was a great success.
My partner, family and all the health professionals at Mater gave me such incredible support.
Sophie is beyond grateful for the support she received, both from family and her healthcare professionals at Mater.
“Once I had the surgery, it took a long time for me to feel better. I had 8 weeks of quite strict rest then I began to slowly venture out of the house. My partner, family and all the health professionals at Mater gave me such incredible support.”
“My partner took six months off work to help me. Mum stayed with us for eight weeks. I just started working again, part time, just one month ago. “
“Surgery recovery was challenging. I was unable to leave my home for a time, as tolerating outside was difficult, especially with the light. However, I have been seizure free since my surgery in June 2020 and it's completely changed my life. It's saved my life and given my partner and I our future back so we can get married this year.”
“My experience has been very positive and without the amazing care I received at Mater, I wouldn't be able to do so many of the things I've worked hard for; those 5 years of study were not to go to waste! I have so much time and respect for the team at the Mater, I am definitely a huge supporter!”
Sophie has nothing but thanks and praise for the team at Mater.
“The team at Mater work really well together. I really felt cared about, I always felt they were doing what was right for me. It wasn’t just the physical care, I felt emotionally supported as well.”
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