A feeling of anxiety, the taste of metal and then the strongest deja vu — that’s how Warrnambool primary school teacher Steve Guthrie learnt to know a seizure was coming on.
Each year more than 12,000 people in Australia are diagnosed with epilepsy, and not all seizures are the clonic and obvious “fits” characterised in film.
Some involve staring at a focal point, repetitive movement, or a change in conscious state.
In Mr Guthrie’s case, he learnt as an undiagnosed epileptic child to get to safety before the “dizzy spell” overtook him.
But when as an adult those warnings stopped coming, his life changed dramatically.
He was presented with a choice: to live a life constricted by multiple daily seizures, give up driving and maybe his job, or to have a section of his brain removed — an operation that might free him from seizures altogether.
The road Mr Guthrie chose saw him shed 28 kilograms and achieve a 24-kilometre half marathon along the Great Ocean Road.
Scarring on the brain
At eight months old, Mr Guthrie contracted meningitis that, unbeknown to his family, caused permanent damage via scarring on his brain.
“I was suffering from non-tonic clonic seizures or complex focal epilepsy,” Steve said.
“They’re described as dizzy spells, and being such a young age, I just thought that was what everyone goes through.”
As an undiagnosed child trying to cope with epileptic seizures, he quickly learnt to read the signs and find a soft landing.
“When I could feel them coming on, I’d just clear the couch or bed and fall asleep,” Mr Guthrie said.
“Mum would often find me asleep on the trampoline.”
It was not until he was seven years old and had a seizure at the dinner table that his family twigged something was up.
They thought he was choking on his dinner and called an ambulance, eventually triggering the epilepsy diagnosis.
For decades after his diagnosis, Mr Guthrie managed his epilepsy with medication and by taking heed of his internal warning system, the “auras”.
Perceptible only to the person experiencing them, and to highly trained assistance dogs, auras can last anything from 10 minutes to most of the day.
“It’s a feeling of anxiety,” Mr Guthrie said.
“I start getting a metallic taste in my mouth, and major deja vu.”
What’s it like during and after a seizure?
Mr Guthrie says the seizures themselves only go for a few minutes, but it takes a long time to recover, impairing his speech and comprehension.
“I’m still able to walk around, but I can’t understand anything that someone is saying and I’m really trying to tell someone something, but I am just mincing my words — it’s very frustrating,” he said.
Exactly what this looks like from the outside was captured on film in 2006 when ex-rugby league player and TV host Wally Lewis had a seizure while presenting live on Channel 9.
The video is still on YouTube and plays out like a bad dream.
You can almost see Lewis desperately sending the “speak” messages from brain to mouth, as they are instantly scrambled.
When the warning system failed
For Mr Guthrie, while uncomfortable, the warning auras before his seizures gave him an opportunity to prepare and get himself into a safe scenario.
They also gave him the confidence that he was safe to drive, confirmed at regular neurology appointments.
But by age 35, his warning time had fizzled out — and that was when he realised that epilepsy had taken over his life.
Teaching at the local Catholic primary school, he had never had a seizure in class.
Seizures would usually come on when he got home and his body was in a relaxed state.
But that changed one day.
“I was out of the classroom, and I had nine seizures in one day, and there was no warning leading up to it,” Mr Guthrie said.
“I decided that I had to stop driving, it wasn’t safe.”
At that point, he realised he needed brain surgery in order to get his life back.
“The epilepsy was starting to take over, I didn’t really have a choice,” he said.
The road to surgery
Mr Guthrie’s decision to have brain surgery came hand-in-hand with the need to get fit fast.
“I was weighing about 90 kilos, which is fairly heavy for my size. I wasn’t in a healthy state,” he said.
Mr Guthrie went through 18 months of testing for the brain surgery, including tests that induced seizures while injecting a glowing substance into his brain.
“That’s when I started to tell myself, ‘Right, you’ve gotta get yourself in a good spot to give yourself a better success rate,” he said.
“So I changed my diet, I started getting out, walking to start with — long distances
“I turned to running, and I lost 28 kilos in six months, to get myself in a really good state to survive.”
After getting himself in shape, Mr Guthrie went under the knife.
He had surgery in 2017, recovering after six weeks, and with full medication is now seizure-free.
New half marathon on the horizon
Mr Guthrie didn’t stop running though. He now runs three times a week and has become an Emmett therapist, helping to relieve football players from pain at the local Terang-Mortlake football club.
He also took up 15km fun runs, and this year stepped that up to a 24km half marathon along the Great Ocean Road.
“I’d always said that I’d never make it that far — but I overcame something that is so much more powerful than running a half marathon: brain surgery,” he said.
“Being able to overcome the surgery and have five years without seizures made me feel like I could accomplish anything.”
After running the Great Ocean Road, Mr Guthrie thought “mission accomplished” — but then when the opportunity to raise funds for epilepsy came up, he changed his mind.
He now is raising money for the Epilepsy Foundation by running the Nike Melbourne Half Marathon.
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