Epilepsy explained: Everything you need to know

Epilepsy is more common than you think, yet it’s one of the most misunderstood neurological conditions. From symptoms and diagnosis to management, here’s what to know.

Every 33 minutes, an Australian is diagnosed with epilepsy.

According to Epilepsy Action Australia, it’s more common than Parkinson’s disease, cerebral palsy, multiple sclerosis and muscular dystrophy combined.

Yet this neurological disorder remains shrouded in mystery and misconception.

Epilepsy Action Australia chief executive officer Carol Ireland says while most people know epilepsy exists, it’s often misunderstood.

A recent US study found people living with epilepsy still face stigma due to myths surrounding the condition.

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What is epilepsy?

Epilepsy is a neurological disorder characterised by seizures caused by a disruption of the normal electrical activity in the brain, Carol explains.

Epilepsy Foundation chief medical officer and Epilepsy Research Centre director Professor Sam Berkovic says the term “epilepsy” covers a wide spectrum of conditions.

“It refers to a group of conditions where people suffer unpredictable epileptic seizures,” Prof Berkovic, of Austin Health (University of Melbourne), says.

“It varies from a relatively mild disorder, where people can lead very productive lives, to very severe, where they may be having weekly or even daily seizures.”

Types of epilepsy (including symptoms)

“There are more than 60 different types of epilepsy, and everyone’s experience with seizures is different,” Prof Berkovic says.

He says there are three main groups of epilepsy:

Generalised epilepsy

Prof Berkovic says this refers to situations where the seizures appear to begin simultaneously on both sides of the brain.

The seizures can manifest in a number of ways, including:

  • Tonic-clonic seizures, which are major seizures with convulsions
  • Absence seizures,which involve a sudden lapse in awareness and can be mistaken for daydreaming or staring
  • Myoclonic seizures, which refer to sudden jerks of a muscle or a group of muscles.

Focal epilepsies

Prof Berkovic says in focal epilepsies, seizures begin in one area of the brain, particularly the temporal lobe or the frontal lobe.

“The severity of focal epilepsies can vary from very minor to extremely severe,” Prof Berkovic says.

“When it’s extremely severe and resistant to therapy with drugs, we consider measures like surgery to help treat it.”

Developmental and epileptic encephalopathies

Prof Berkovic says this is a group of disorders that generally begin in childhood and are often associated with comorbidities such as intellectual impairment, behavioural issues and autism spectrum disorder.

What causes epilepsy?

Epilepsy can be due to many factors such as brain injury from stroke or severe head trauma, or brain infections, Prof Berkovic says.

“In everyday practice in Australia, often there’s no clear acquired cause and we believe that many or most of those have a genetic cause,” he explains.

He says brain infections (which are relatively rare in Australia) are a common cause of epilepsy worldwide.

LISTEN BELOW: Epilepsy Foundation chief medical officer Professor Sam Berkovic discusses the condition and how everyone can show their support on Purple Day on March 26.

How is epilepsy diagnosed?

Carol says epilepsy can be diagnosed when a person has two or more seizures.

Doctors and specialists will investigate by taking a medical history and through diagnostic tools such as an EEG (electroencephalogram), blood tests, a CT scan (computed tomography) or an MRI scan (magnetic resonance imaging).

What is the treatment for epilepsy?

Medication is the frontline treatment for people with epilepsy, Carol says.

Around 70 per cent of people with epilepsy will be able to manage their seizures by taking anti-seizure medications.

Carol says there are alternative treatment options for serious cases, including neurosurgery, deep brain stimulation and vagus nerve stimulation.

She says medicinal cannabis has proven to help in specific cases.

“The really important takeaway here is to not give up if one medication isn’t working and (to) really explore all the different options for treatment,” Carol says.

Is a febrile seizure a sign of epilepsy?

Prof Berkovic says there is no clear-cut answer.

“About 3 per cent of all children will have a febrile seizure, which is a seizure occurring with a high temperature over 38.5 degrees, typically around 18 months of age,” Prof Berkovic says.

He says most of those are benign and kids won’t usually have further seizures.

“However, there is a proportion of children who have recurrent febrile seizures and then go on to have seizures without fever,” Prof Berkovic says.

Can you drive with epilepsy?

For personal and public safety reasons, people with epilepsy have to meet certain conditions before they are eligible to drive in Australia.

They may need to undertake an assessment where factors such as seizure type and frequency will be considered.

How to help someone who is having a seizure

Carol says the first aid administered depends on the type of seizure.

Generally, the following steps can be helpful:

  • Remain with the person.
  • Time the seizure.
  • Keep the person safe: protect them from injury, and put something soft under their head.
  • Roll the person onto their side after the seizure stops.
  • Monitor their breathing.
  • Gently reassure them.
  • Call an ambulance if you don’t know the person, or if they are injured or have breathing difficulties.

Carol says it’s important not to restrain the person or put anything in their mouth.

International Purple Day is on March 26

Purple Day is a global grassroots campaign dedicated to raising epilepsy awareness and increasing support for people living with epilepsy.

“Epilepsy is not just somebody falling to the ground,” Carol says.

“There are a whole range of seizures and we’d like to improve awareness, understanding and response toward people with epilepsy.

“We believe education and awareness is key.”

Prof Berkovic agrees.

“That’s why initiatives like Purple Day are so important to raise awareness of epilepsy,” he says.

For more information, visit Make March Purple for Epilepsy.

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Written by Bianca Carmona