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Epilepsy Resources

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Our suite of epilepsy resources have been developed for people living with epilepsy and their families and carers.
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What is Epilepsy?

Around 65 million people in the world live with epilepsy, making it one of the most common neurological disorders. Epilepsy is a medical condition that affects the brain and causes seizures.

Epilepsy is diagnosed by a medical specialist after a person experiences at least two unprovoked seizures.

Everyone’s brain sends electrical messages to their body, which tell the body what to do. Seizures happen because of a disruption to electrical activity in the brain, leading to a change in a person’s movement, behaviour, level of awareness and/or feelings.

Not all people who have seizures are diagnosed with epilepsy. In Australia, around 10% of the population will experience a seizure in their lifetime, but much fewer will be diagnosed with epilepsy. At the moment around 250,000 Australians, or 1% of our population, live with epilepsy.
Epilepsy occurs regardless of age, gender, cultural or socio-economic background. Epilepsy can develop at any stage of life, but it is more common in children, adolescents, and people over 60.

There are at least 40 different types of seizures. A person with epilepsy may experience one or more seizure type. Their behaviour during a seizure depends on the type of seizure and the area of the brain being affected. 

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What is a seizure?

A seizure is a sudden and temporary change in the electrical and chemical activity in the brain which leads to a change a person’s movement, behaviour, level of awareness, and/or feelings.

A seizure is a sign that there has been a disruption to the normal functioning of the brain. Seizures can be either provoked or unprovoked. A provoked seizure is caused by a known event such as an illness, flashing lights, stress, or sleep deprivation.

Unprovoked seizures happen without a known cause. For almost 60% of people diagnosed with epilepsy, the cause of their seizures is not immediately known upon diagnosis, and further investigations are needed to determine the underlying cause.

Seizures differ from person to person, and some people experience more than one type of seizure. Depending on the type of seizure, the following things may be experienced:

  • A loss of consciousness.
  • A range of unusual movements.
  • Odd feelings and sensations, such as an unpleasant taste or smell.
  • A behaviour change.  
  • Loss of bladder control.
  • A change in mood.

Every person's experience with seizures is different

For example, some people will still be alert during a seizure and will be able to remember what happened afterwards. Others will be unaware and unable to respond to those around them during a seizure. They may then not remember the seizure at all, or only remember certain aspects before or after the seizure. A person’s level of awareness can vary greatly and depends on the type of seizure being experienced. Following a seizure the person may feel tired and sleepy, confused, angry, sad or worried. Confusion following a seizure can last several hours, days or sometimes even weeks.

Some people living with epilepsy have seizures every day, while others may only have a seizure occasionally. Some people will notice that their seizures may follow patterns. Some common patterns include nocturnal (night time) seizures, although some people even experience seizures at particular times of the day. 

Types of seizures

The term ‘motor’ and ‘non-motor’ are often when describing seizure types. Motor relates to physical movement or motion, and seizures involving motor activity may include either an increase or decrease in muscle tone, leading to muscle twitches, jerks or contractions. Non-motor onset seizures don’t involve muscle action but may include behavioural, emotional and/or sensory activity or actions.

Some people experience non-epileptic seizures, which don’t fit into these three categories.

Types of seizures can include:

  • Focal onset seizures
  • Generalised onset seizures
  • Unknown onset seizures
  • Psychogenic non-epileptic seizures

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Managing your seizures

Good seizure management involves more than medication. Understanding your seizures, and avoiding your triggers are important parts of living well with epilepsy. 

Understand your seizures

Managing your epilepsy can be challenging. Many people with epilepsy worry that they cannot control their seizures because they often happen without warning. Fortunately, good seizure control is possible for many people if they follow these three important steps:

Epilepsy differs from person to person. Taking the time to understand your epilepsy will help you (and your doctor) better manage your condition.  Here is what to do:

  • Ask your doctor to explain your diagnosis and write down the important information. If you are unsure about something, ask questions. It is in your best interest to fully understand your condition.
  • Keep a seizure diary – Keeping a record of the types of seizures you experience and how long they last is a good idea. You can use a notebook, access our Seizure Record Form, or use an app like Seizure Tracker. You may need to ask someone to write this down for you or take a video of your seizure, which you can show to your doctor during consultations.
  • Talk to a support worker by calling the National Epilepsy Support Service (NESS) on 1300 761 487.

Recognise your triggers

Understanding what brings on (triggers) a seizure can help you predict when a seizure might occur. When you understand your triggers, you may be able to reduce your chances of having a seizure. Your seizure triggers will be unique to you, and some people cannot identify their seizure triggers. As a starting point, look out for these common triggers:

  • Missing your medication
  • Not getting enough sleep
  • Feeling stressed
  • Drinking alcohol
  • Skipping meals
  • Illness and fever
  • Periods and hormones
  • Over the counter drugs
  • Photosensitivity (flashing lights)

Manage your triggers

Once you know what your triggers are, you can take steps to manage them. Below are some common ways in which other people with epilepsy reduce their seizures:

Remember to take your medication

Anti-seizure medications can help prevent seizures; however, you need to take them as prescribed. Skipping or forgetting to take your medication increases your chances of having a seizure. It can also make your seizures more frequent, intense, or longer. If you find it difficult to remember your medication, simple items such as tablet boxes, timers, and alarms can help. If you are worried about your medication, talk to your specialist or pharmacist.

Get enough sleep

Not getting enough good quality sleep increases your chance of having a seizure. Wherever possible, try to reduce your late nights and keep a regular sleep pattern. If you are worried about sleep, talk to your doctor.

Manage your stress

Stress is part of daily life; however, for some people, it can trigger seizures. If you are experiencing high levels of stress or anxiety, talk to your doctor, as they can help you develop a management plan. Other stress management options include:

  • Relaxation and breathing techniques
  • Meditation
  • Exercise
  • Cognitive Behavioural Therapy and other forms of psychology

Reduce alcohol

Alcohol can reduce the effectiveness of your epilepsy medication. It can also interrupt your sleep and lead to missed medication. If you are worried about your alcohol intake, talk to your specialist.

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Eat regularly

Some people have seizures if they miss a meal and their blood sugar drops. Try to eat at regular times and have nutritious snacks throughout the day. Eating after exercise is a good idea. Cutting back on caffeine may also help.

Exercise

Exercise is generally good for people with epilepsy. It can also be good for seizure control. In some rare cases, physical exertion (overdoing it) can trigger a seizure. Talk to your specialist about what exercise is right for you.

Be careful with illness, pain, and fever

Illness, injury, pain, and fever with a  high temperature can trigger seizures. If you are unwell or injured, try to keep your temperature down and talk to your doctor.

Understand your hormones

Female hormones can affect seizures. Some women report having more seizures during certain times of their menstrual cycle, after childbirth and leading up to menopause. If you think this may be happening with you, keep a diary and speak to your doctor.

Talk to your doctor about over the counter drugs: Over the counter medications (those you can buy without a prescription) may affect your epilepsy medication. Make sure your doctor knows all the medications you are taking, including herbs and supplements.

Avoid flashing lights and complex patterns: For some people, especially children, flashing lights (photosensitivity) and visual patterns can trigger seizures. Avoid these triggers wherever possible.

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Epilepsy and Stress

Stress is a normal physical and mental response to life’s challenges.
From day-to-day responsibilities like work and family through to big life
events like the loss of a loved one, stress can affect you at many different
times in your life.

Seizures and Stress

Many people with epilepsy report having more frequent seizures when they are stressed. Others, who have experimented with stress-reduction techniques such as yoga, have noticed that they have fewer seizures. While more research into the relationship between seizures and stress needs to be done, reducing your stress levels will likely result in better seizure management.

Stress management cannot replace medication, but taking steps to reduce stress may help reduce your seizure frequency.

What happens when you feel stressed?

When you feel stressed, your body responds by releasing hormones that increase your breathing and heart rates. Your muscles may tighten, and you may experience chest pain, high blood pressure and digestive problems.

Signs of stress

Stress can sometimes be difficult to measure. This is because what is stressful for one person will not always be stressful for another.

A great way to monitor stress levels is to check if you (or the person you are caring for) is experiencing any physical symptoms such as tense muscles, rapid breathing, or a racing heartbeat.

Stress can also cause irritability, memory loss, and constant worrying. Behavioural changes such as finding it hard to relax, having difficulty sleeping, or increased alcohol use are also signs of stress.

Reducing stress

Understanding what causes you stress and avoiding unnecessarily stressful situations is a good first step.

If spending time with a particular person or visiting particular places is stressful, try to limit the amount of time you spend on these activities. You may also find the following techniques helpful:

  • Exercise –whether gentle or intense, is a great way to reduce stress and improve your mood.
  • Meditation and breathing techniques that slow your breathing rate and quieten your mind can help you to relax.
  • Time management – establishing priorities and routines can reduce stress.
  • Cutting back on commitments can stop you from feeling too rushed.
  • Connecting with other people – can improve mood and enhance well-being.
  • Psychological approaches – assertiveness training, mental imagery, anxiety management, and work on self-esteem issues can reduce stress.
  • Physical approaches – massage, singing, dancing and other enjoyable activities can reduce tension.
  • Talk to a qualified mental health worker.
  • Getting enough, good quality sleep.
  • Taking your medication on time.
  • If ongoing stress is a problem for you, talk to your doctor.

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The information on this page is part of a suite of resources that are targeted for people living with epilepsy, their family, carers, and support workers.

This information provides general information about epilepsy. It does not provide specific advice. Specific health and medical advice should always be obtained from an appropriately qualified health professional.

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Epilepsy Smart Australia

Phone: 1300 761 487 Email: support@epilepsysmart.org.au
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The Epilepsy Smart Australia program received funding from the Australian Government.