What is epilepsy?

Epilepsy is a neurological condition that impacts millions of people worldwide. In Australia, there are over 151,000 people living with the condition.

Despite its prevalence, many misconceptions and questions about the condition remain.

We’ll explore what epilepsy is, what causes it, how it’s diagnosed, and the ways it can be managed effectively. 

Whether you or someone you know is living with epilepsy, understanding the condition is a key step toward empowerment and effective management.

Understanding epilepsy

What is epilepsy? Epilepsy is a chronic brain disorder characterised by recurring, unprovoked seizures.

Seizures are sudden bursts of abnormal electrical activity in the brain, disrupting the way it functions. These seizures can vary in type, frequency, and severity, depending on the individual and the area of the brain affected.

Epilepsy is not a singular condition but a spectrum of disorders. This means it can look very different from person to person, symptoms can vary, and treatments often need to be tailored to an individual’s specific circumstances.

How common is epilepsy?

Epilepsy is one of the most common neurological conditions globally. It is estimated that one in 26 people will be diagnosed with epilepsy during their lifetime.

It affects people of all ages, genders, and backgrounds, with two peak periods for diagnosis: early childhood and late adulthood.

What causes epilepsy?

There is no single cause of epilepsy, and for many people, the exact cause remains unknown. However, research has identified several factors that may contribute to the development of epilepsy:

• Genetic factors: Some forms of epilepsy run in families, suggesting a genetic predisposition. Scientists have identified specific genes linked to certain types of epilepsy.
• Brain injuries: Trauma from accidents, falls, or sports can lead to epilepsy, sometimes years after the injury occurred.
• Infections: Infections and conditions like meningitis or encephalitis can cause inflammation in the brain, increasing the risk of epilepsy.
• Stroke: As a leading cause of epilepsy in older adults, strokes can damage brain tissue and lead to seizures.
• Developmental disorders: Conditions like autism and neurofibromatosis may include epilepsy as a symptom.
• Brain tumours: Abnormal growths in the brain can disrupt its electrical activity, leading to seizures.

It’s important to note that epilepsy can occur in people without any of these risk factors, highlighting the complex nature of the condition.

Types of epilepsy and seizures

Epilepsy is not a one-size-fits-all condition. There are many different types of seizures and epilepsy syndromes, classified based on their characteristics.

Focal epilepsy

Focal epilepsy occurs when seizures originate in a specific area of the brain. These seizures can be further divided into:

• Focal aware seizures: The person remains conscious but may experience unusual sensations, such as tingling or a strange taste or smell.
• Focal impaired awareness seizures: Awareness is affected, and the person may perform repetitive movements or appear confused.

Generalised epilepsy

In generalised epilepsy, seizures involve the entire brain. Types include:

• Tonic-clonic seizures: These seizures are the most recognisable type, involving stiffening and jerking of the body.
• Absence seizures: Often seen in children, these involve brief lapses in awareness, such as staring into space. They are often undetectable, only lasting a few seconds.
• Myoclonic seizures: Sudden, brief jerking movements that may involve the arms or legs.
• Atonic seizures: A sudden loss of muscle tone, causing falls or head drops.

Combined epilepsy

Some individuals experience a mix of focal and generalised seizures, which can complicate diagnosis and treatment.

How to recognise the symptoms of epilepsy

While seizures are the defining symptom of epilepsy, they can manifest in various ways beyond the physical convulsions typically associated with the condition.

Other symptoms might include:

• Episodes of confusion or ‘blanking out’
• Sudden, unexplained emotions such as fear or joy
• Repeated movements, like lip-smacking or hand-rubbing
• Temporary loss of awareness or responsiveness
• Unusual sensory experiences, such as smelling something that isn’t there

Recognising these less obvious symptoms can be crucial in identifying epilepsy early.

How is epilepsy diagnosed?

Epilepsy can be challenging to diagnose, as many other conditions mimic seizures. A proper diagnosis often requires a combination of tools and evaluations, including:

• Medical history and symptom description: Doctors will ask detailed questions about the seizures, including what happens during and after the episode, frequency, and potential triggers.
• Electroencephalogram (EEG): This test records electrical activity in the brain, helping to identify abnormal patterns associated with epilepsy.
• Imaging scans: MRI or CT scans are often used to check for underlying structural causes like tumours or brain injuries.
• Blood tests and genetic analysis: These can help rule out other conditions or identify genetic causes.

Diagnosing epilepsy accurately is vital for determining the best treatment plan.

What triggers epileptic seizures?

For people with epilepsy, seizures can sometimes be linked to specific triggers. Common triggers include:

• Sleep deprivation: A lack of quality sleep can significantly increase seizure risk.
• Stress: Emotional or physical stress can act as a catalyst.
• Alcohol or drug use: Some substances can lower the seizure threshold.
• Flashing lights: For those with photosensitive epilepsy, strobe lights or certain visual patterns can induce seizures.
• Skipping medication: Stopping anti-epileptic drugs without medical advice can result in breakthrough seizures.

Identifying and avoiding triggers is an essential part of epilepsy management.

How is epilepsy treated?

Epilepsy treatment aims to control seizures while minimising side effects. The main treatment options include:

Medication

Anti-epileptic drugs (AEDs) are the most common form of treatment. These medications help reduce the frequency and severity of seizures for most people. Finding the right medication and dosage can take time, as it often depends on the type of epilepsy and individual response.

Surgical interventions

For people whose seizures are not well controlled with medication, surgery may be an option. This often involves removing the area of the brain causing the seizures.

Vagus nerve stimulation (VNS)

This treatment involves implanting a device that sends electrical impulses to the vagus nerve, helping to reduce seizure activity.

Ketogenic diet

Dietary therapies, such as the ketogenic diet can be used to treat epilepsy. This high-fat, low-carbohydrate diet has been effective for some people, particularly children with medication-resistant epilepsy.

Lifestyle changes

Managing stress, maintaining a consistent sleep schedule, and avoiding triggers are all essential for living well with epilepsy.

How to live well with epilepsy

Epilepsy can pose challenges, but with the right strategies and support, individuals can lead fulfilling lives. Some key considerations include:

• Work and education: Many people with epilepsy can pursue careers and education with appropriate workplace accommodations.
• Driving: Regulations regarding driving vary by region, but many people with well-controlled epilepsy can obtain a license.
• Social life: Maintaining an active social life is possible with epilepsy, though certain situations (like attending events with flashing lights) may require precautions.

Support networks, including family, friends, and epilepsy organisations, play a vital role in helping people navigate life with epilepsy.

The social impact of epilepsy

Living with epilepsy can sometimes lead to feelings of isolation or stigma. Misconceptions about the condition can affect relationships, job opportunities, and self-esteem.

Raising awareness and understanding in the broader community is critical to reducing stigma and creating a more inclusive society.

How to support someone with epilepsy

If someone close to you is living with epilepsy, understanding their condition is crucial. Here are some ways you can help:

• Learn seizure first aid
• Be patient and understanding about their limitations or triggers
• Encourage them to stick to their treatment plan
• Offer to attend medical appointments with them

How APM supports people with epilepsy in employment

Finding and maintaining meaningful employment can be challenging for people living with epilepsy, but APM Employment Services is here to help.

At APM, we believe that epilepsy does not define a person’s potential, and we are dedicated to creating pathways to employment that recognise and accommodate the unique needs of individuals with epilepsy.

Through Disability Employment Services, we support eligible people with epilepsy by providing personalised employment plans, matching them with suitable roles, and advocating for workplace accommodations.

Understanding epilepsy and empowering change

Epilepsy is a complex and varied condition, but with increased awareness, understanding, and support, individuals living with epilepsy can lead fulfilling lives.

Whether you are seeking a diagnosis, exploring treatment options, or supporting a loved one, knowledge is a powerful tool in managing epilepsy effectively.

If you’re concerned about epilepsy or need more information, speak with a healthcare provider or reach out to organisations that specialise in epilepsy care.

Resources and further reading

• What is epilepsy? - Epilepsy Foundation
• Epilepsy in Australia factsheet – AIHW
• Epilepsy - Health Direct
• Newly diagnosed with epilepsy toolkit - Epilepsy Foundation
• Understanding epilepsy - Epilepsy Action Australia
• Managing epilepsy - Epilepsy Foundation Australia

About this article

APM supports people with disability, injury, or a health condition through various programs and services across its businesses, including Disability Employment Services in Australia.

The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.

When discussing disability, APM’s copy style is to use person-first language and the social model of disability in the first instance. Some articles may use identity-first language or refer to the medical model of disability for clarity or to better suit a specific audience.

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