It was a normal trip to the chemist that changed Emily’s life forever.
“I was walking through a car park to go and get some eye drops and didn't come back,” she recalled. “A passerby heard me scream and groan and came to investigate.”
As a seemingly healthy 28-year-old, she had experienced her first seizure.
“No one knows why,” she explained. “I had no physical illnesses, there’s no scarring on my brain. All we have to go on is that it runs pretty strongly on my Dad’s side of the family and something must have triggered it.”
But it wasn’t until it happened a second time whilst she was attending a hospital checkup that doctors first suspected epilepsy.
“I was put on medication and sent to a neurologist. I was then put through a series of tests; a tilt table test to make sure I wasn't fainting, an EEG to see if they could trigger a seizure or find seizure activity in my brain and an MRI to look for physical damage.”
Two years, three neurologists and four GPs later, it was official: Emily had been diagnosed with epilepsy.
“Epilepsy is very different for each person that has it,” Emily explains. “There are so many different types of seizures, so many different reactions to them.”
“To start off with, I couldn't tell I’d had one and I would just wake up later upset, hurt and angry. Now, I actually hear music first. I'll be trying to figure out the song and then realise it isn't real, it's just happening in my head. These days, I can recognise the signs and I have enough time to put myself to bed so I don't fall anywhere and hurt myself.”
“I also have a second type of seizure that I have no warning for. This kind sees me unable to understand what’s happening around me or speak for a few seconds or sometimes up to a minute at a time. These don't affect me for as long, nor are they as bad, but afterwards I am extremely confused and often emotional.”
“It's really hard for others to watch when I wake up not knowing who I am, or who they are,” she continues. “I get frustrated if people are talking to me because my head hurts and I can't talk back. Then it takes a few days to recover my personality. I don't laugh as much, I find it hard to feel like I'm myself. It can take up to a week for all my muscles to stop hurting.”
The treatment for epilepsy varies from person to person, and for some, the side effects can be more severe than the seizures.
“I have experienced everything from allergic reactions, to rage, to vomiting. I am now looking at brain surgery as a possible option as my medications seem to work sometimes and not others.”
“When you’re diagnosed you’re also given a list as long as your arm of things you can't do any more, things you should do to protect yourself and things that can now be risky.”
Even day-to-day activities – like taking a bath – can be problematic.
“I'm also not entirely independent and have a large degree of anxiety based around going out in public as I could seize, even if I haven’t had one in months.”
She also hasn’t been able to pinpoint her triggers.
“There just doesn't seem to be a pattern to what happens with me,” she explains. “I cut out alcohol for two years but continued to have seizures. Sleep deprivation might be an issue but I try to monitor it closely. Light is definitely not a trigger and neither is caffeine.”
Since her diagnosis, Emily’s outlook on life has completely changed.
“Before this, I had a five-year plan,” she said. “Since I developed it, I feel like I've put my life on hold.”
“There is plenty of information on the internet, but it's hard to find your local people with epilepsy. I've found that the online avenues give a great deal of support such as the Epilepsy Xplained Facebook page, as you can ask advice from others who are dealing with the same medical system and diagnosis as you.”
But for now, she wants to use her experiences to help those in a similar situation.
“I want people to understand it's ok to feel frustrated and upset as long as that's not the end-point of what you do,” she says. “Join groups, ask questions and show people that we are working through the hard bits! Push your doctors, push your specialists and get the right answers.”
“And don’t settle. Don’t accept feeling ‘just OK’ as good enough. Life isn't meant to be ‘just OK,’ it's supposed to be amazing!
Throughout March, Epilepsy Australia is urging people around the country to end the stigma and discrimination of epilepsy and 'go purple,' the international colour for epilepsy. For more information about how you can support the cause, visit Epilepsy Australia or download the free Epilepsy Xplained app from Google Play or iTunes.