National Epilepsy Day Shines a Light on Life’s Uncertainties

By Pride Advice

Every year, 12,000 Australians are diagnosed with epilepsy. March 26 is Purple Day, a worldwide initiative that raises epilepsy awareness. Brett Schatto reflects on his own diagnosis.

March 26, National Epilepsy Day, always leads me to reflect on the ease and suddenness with which life can be turned upside down.

For me, it happened with what began as a normal night out. It was meant to be a quiet one with a mate, as I was starting the CIB course on Monday. That changed when a fight broke out and I stepped in to calm things down. The last thing I remember before waking up in the emergency room of the Royal Adelaide Hospital is pulling out my badge and declaring myself a police officer.

The king hit had sent me to the pavement where my head collided with the asphalt. I was unconscious for thirty minutes.

My stay at the RAH was less than twenty four hours, but the following Wednesday I was struck with severe headaches and dizziness. After vomiting several times, I was taken by one of my course instructors, Joanne Shanahan (RIP), to the Queen Elizabeth Hospital.

Delayed concussion was the diagnosis. A few days at home and I felt better.

Nine months later and I was at home in bed with my girlfriend. Around 4am, I started convulsing. The seizure was so violent I fell from the bed, collecting the side table on the way and gushing blood all over the floor. Of course, I don’t remember any of this.

I do recall “waking” at the RAH again in Emergency, dazed and confused. I had no idea what happened or how I got there. Never having had a seizure before, I spent several nights in hospital with many tests and visits by neurologists.

A bedside conversation with a professor informed me my seizure was likely caused by brain tumours, which the scans couldn’t rule in or out at that stage.

I was prescribed epilepsy medication and told to come back in six months for a follow-up scan. Those six months were devastating for me and my family. I had so many questions and no answers. In addition, the medication wasn’t working. I had several grand mals (aka tonic-clonic) seizures as well as many focal onset and absence seizures. Life as I knew it had changed.

The side effects of the medication were horrendous. In the first three months I put on 19 kilograms and my gums swelled up to cover half of my teeth. I broke out in a rash all over my body. I had no energy. I was a mess.

I wasn’t allowed to drive, couldn’t stay at home alone. I wasn’t allowed to have a bath or swim. I couldn’t climb a ladder. Basic things in my life were off limits.

Eventually, I was cleared of a brain tumour. The assault caused scarring in my brain and this is what caused me to become epileptic.

I have been on a new drug for a long time now and it seems to have no side effects. I don’t really know what my alternative normal self would be because I take this medication twice a day.

Several years ago, having been seizure-free for many years, I got a bit sporadic with my medication. In my eyes, I was no longer epileptic and decided to wean myself off it. After three days without taking anything, unfortunately, I had a seizure at work in front of my colleagues. I learned a valuable lesson that day – including how hard it is to adjust without a driver’s license, which was suspended for a period of time.

What is epilepsy?

Epilepsy is a disease of the brain that leads to recurring seizures. Contrary to popular belief, not all seizures involve collapsing to the ground and convulsing. In fact, some simply involve a brief lapse in attention or moments of confusion. And their frequency has a huge range from person to person, with some experiencing a seizure several times a day to some only once a year.

Here are some more quick facts:

  • Around 3% to 3.5% of Australians will experience epilepsy at some point in their lives.
  • Around 1% of Australians currently live with epilepsy.
  • Epilepsy isn’t always a lifelong disorder; for some, it stops at a certain age, and others can go into remission.
  • Epilepsy can be diagnosed at any time of life, but particularly in childhood and those older than 65.
  • Epilepsy is diagnosed if there is one unprovoked seizure and a probability of further seizures, two unprovoked seizures or a diagnosis of an epilepsy syndrome.

What you can do if you see someone seizing

What I (and my family) have come to appreciate is how impactful epilepsy can be. When not having seizures, I am 100% able. When having a seizure, I am 100% disabled. The sight of someone having a grand mal is confronting and upsetting. People panic and don’t know what to do.

Here’s what I would tell people.

The frothing at the mouth is simply the saliva bubbling from breathing in and out quickly through clenched teeth. We don’t swallow our tongues, so please don’t force open our mouth and place an object in between our teeth. All it does is lead to expensive dental work.

Support the person’s head with your hand or a rolled-up piece of clothing and gently roll them to the recovery position once the seizure passes. Call an ambulance and wait for the person to rouse. Explain what happened and tell them they are safe. They will likely be confused and not be present mentally.

The Epilepsy Centre is doing a stellar job of raising awareness around epilepsy in South Australia and Northern Territory, where nearly 100,000 people live with the neurological disorder. The good news is that epilepsy in itself is something that can be lived with if controlled. Many famous people with epilepsy, past and present, have lived successful lives, including:

  • Buddy Franklin
  • Wally Lewis
  • Elton John
  • Danny Glover
  • Neil Young
  • Susan Boyle
  • Lil Wayne
  • Prince
  • Hugo Weaving
  • Theordore Roosevelt
  • Michaelangelo
  • Vincent Van Gogh
  • Julius Caeser

Not a bad group to be a part of.