Epilepsy & Seizures

What is a seizure?

The brain is made up of millions of nerve cells called neurons, which generate electrical impulses and messages to produce thoughts, feelings and control body functions.

Consider a seizure like a short circuit. It happens when there are sudden discharges of abnormal electrical activity in the brain, which fire rapidly and excessively, disrupting the normal communication between brain cells and the body. The seizure is the body's response to this.

There are many different types of seizures and they vary greatly. What a seizure looks like will depend on where its location is in the brain. Seizures can cause changes in:

• Sensation and feeling
• Awareness and consciousness
• Behaviour or
• Movement

Most seizures are over in less than two minutes. Seizures can range from severe to very subtle.

Some seizures can be a "one-off" event and not diagnosed as epilepsy.

For more information about seizures click here.

Seizure signs and symptoms can range from mild to severe and vary depending on the type of seizure. They may include:

• Temporay confusion
• A staring episode
• Unusual or repetitive behaviour
• Rhythmic jerking movements of the arms and legs
• Loss of consciousness or awareness
• Confusion, disorientation
• Emotional symptoms, such as fear, anxiety, or deja vu

They are generally classified as either focal or generalised onset, based on where the seizure begins.

What can trigger seizures in people with epilepsy?

Some people may find that there are patterns to their seizures, or the seizures are more likely to happen in certain circumstances. Factors that can provoke a seizure are called seizure triggers.

Knowing, managing or avoiding seizure triggers is important for people with epilepsy because this can reduce the risk of having a seizure. Some commonly reported seizure triggers include:

• Missed medication
• Sleep deprivation
• Stress
• Illness and fever, including vomiting and diarrhea, colds and flu or viral illnesses
• Hormonal influences
• Alcohol and drugs especially with bingeing and stimulant drugs
• Heat
• Metaboic changes wth illness or dehydration. Examples include renal failure, low blood sugars
• Flashing lights or geometric patterns - this occurs in about 5% of people with epilepsy

A good way to establish what your seizure triggers may be is to keep a diary of your seizures and what is happening around the times of the seizures. You can contact us for a seizure diary found here, or download an app here.

What is epilepsy?

Epilepsy is the fourth most common disease of the brain after migraine, stroke, and dementias.  Someone with epilepsy has a tendency to have recurrent seizures and approximately 250,000 Australians currently live with epilepsy.

Epilepsy can start at any age although it is more likely to be diagnosed in childhood or senior years. It is not necessarily lifelong. Some epilepsies are age related and seizures stop by a certain age. There are many different types of epilepsies and people's experiences differ greatly.

Seizures are mostly managed with medication. About 2 in 3 people with epilepsy become seizure free with medication. This means that 1 in 3 people with epilepsy will continue to have seizures.

What causes epilepsy?

Anyone can get epilepsy - any age, gender, race or social circumstance. There are many different causes of epilepsy, but not everyone will find out the cause of their epilepsy.

About half of the people with epilepsy never know the cause of their epilepsy.

Known casues include:

• Head injury
• Stroke
• Lack of oxygen to brain (such as drowning, drug overdose, cardiac arrest or birth difficulties)
• Brain tumours
• Brain abnormalities (present at birth)
• Genetic factors are involved with some types of epilepsy
• Drug and alcohol use can lead to brain damage and seizures
• Alzheimer’s Disease

For more information about epilepsy click here.

Epilepsy, like other long-term conditions such as asthma or diabetes comes with certain risks. Whilst seizures can sometimes lead to accidents, injuries or falls, occasionally, they can also contribute to, or cause death.  A condition which affects people with epilepsy is Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is an uncommon condition where a person with epilepsy dies suddenly and prematurely, and no reason for death can be found.

Anyone having seizures, whether one or two a year or several a week, is considered to have ‘active epilepsy’. Having active seizures can slightly raise the risk of seizure or epilepsy related death. The risk is not equal for all people with epilepsy. Some people will have a very low risk due to their seizure type and when they occur, whilst others may be considered to have a higher risk.

There are also certain types of seizures which may increase your risk. These are:

• Tonic clonic seizures

        These seizures are what most people picture when they think of a seizure. It is when a person loses consciousness, becomes stiff (falls if standing) and then the muscles begin to jerk rhythmically. They mostly last               less than 2 minutes. The risk of seizure related injury or death is highest in people who have these seizures.

• Nocturnal seizures

        Nocturnal seizures are seizures that happen during sleep. They are a risk factor for seizure related death especially if the person lives or sleeps alone.

• Prolonged or cluster seizures, or status epilepticus

        There are a small group of people with epilepsy who have severe or even life-threatening seizures. These seizures are either longer than usual (prolonged seizures) or happen in short succession one after the other              (cluster seizures) with little or no recovery in-between. Both situations can lead to a medical state called status epilepticus which is an ongoing seizure state. These situations are considered seizure emergencies and           early treatment is vital to stop them. Emergency medication can be given outside the hospital setting to stop these seizures.

When there is a risk of these seizure types, a seizure management plan or seizure emergency plan is usually prepared.

Knowing about risks means you can take action against them

Life will never be risk-free, but taking positive action to reduce your seizures, thinking about risks specific to you and discussing with your doctor are a start to reducing some of your seizure related risks. Some steps you can take to reduce seizure related risks, injury or death are:

1. Get the best seizure control possible.

    a. Take your medications as prescribed

    b. Speak to your doctor if you are not happy with your current medication or side effects

    c. Have regular reviews with your doctor

    d. Ask your doctor to go through the SUDEP and Seizure safety Checklist with you

2. Be involved in managing your epilepsy

    a. Avoid any known seizure triggers for you

    b. Avoid drinking too much alcohol

    c. Know when your seizures are most likely to occur

    d. Get enough sleep

    e. Be healthy

    f. Manage stress

3. Make sure those close to you know what to do in case of a seizure

For more information about epilepsy and risk click here.

Your doctor can go through the SUDEP and Seizure Safety Checklist with you. For more information click here.

Getting diagnosed

If you have had a seizure it is likely you will be referred for a test called an EEG (electroencephalogram) and possibly a neurologist appointment. Sometimes you may be referred to other specialists or appointments to rule-out other medical conditions that can cause seizures.

The neurologist appointment

An important part of epilepsy diagnosis is an eyewitness account – a good description of the seizure(s) and your symptoms. If possible, take someone who has seen the seizure(s) or events when visiting the doctor, so they can also be asked questions.

A video recording can sometimes be helpful, other times it is not because it is very important to capture the beginning of a seizure and this rarely happens, usually only by chance.

Try to find out if anyone in the family has ever had seizures before.

Questions to ask your doctor click here.

Tests for epilepsy

What tests are ordered for you depend on the circumstances of your seizure(s). Not everyone will need every test.

Sometimes, all or many tests for epilepsy can return normal. This does not mean you didn’t have a seizure or don’t have epilepsy. These tests are done over a short time period, and because seizures are short-lived, the tests can be normal in-between seizures. Tests you may have to diagnose epilepsy include:

• EEG – This is a non-invasive test used to look at the electrical activity of the brain
• Neuroimaging – These are types of brain scans you are most likely to have an MRI or CT scan

For more information about diagnosis click here.

For more information about episodes that could be misdiagnosed or confused with seizures click here.

Treatments for epilepsy

Medication

Epilepsy is initially managed with medication. Two out of three people with epilepsy will gain seizure control with antiseizure medication. For people who don’t gain seizure control, depending on the type of epilepsy, there may be other treatment options.

Surgery

Epilepsy surgery can offer some a chance to be seizure free or considerably reduce the number of seizures. Only certain types of epilepsy are suitable for this treatment.

Vagus Nerve Stimulation (VNS)

VNS uses a pacemaker-like device to regularly stimulate the vagus nerve in the neck to reduce the frequency and intensity of seizures. Only a small number become seizure free but the response to this treatment improves over time. Most people report seizures become less severe, they have improved alertness, mood and a better quality of life.

Deep Brain Stimulation (DBS)

DBS uses a pacemaker-like device implanted in the chest and connected to electrodes in the brain. This sends a pulse stimulus from the device to the brain to help manage seizures. For many people, deep brain stimulation doesn’t completely stop the seizures, but it can significantly reduce them. Again, response to this treatment improves over time.

Dietary Therapies – Ketogenic and Modified Atkins Diet

The ketogenic diet was originally developed for controlling seizures, particularly in children with poorly controlled epilepsy. The modified Atkins diet is a less restrictive diet that also seems to help with seizure control in adults and children. Many people who try this diet have fewer seizures, and some will become seizure free.

For more information about epilepsy treatments, click here https://www.epilepsy.org.au/about-epilepsy/managing-epilepsy/treatment/

You should consult your doctor for more information and not commence or modify any epilepsy treatments without seeking medical advice.

What can I do to help?

You can make changes in your life to take control of your health, help manage seizures and the impact they can have. Some useful tips:

• Learning more about your type of epilepsy. This can really help you understand about your seizures and how to manage them. It can also help with communication with your doctor and knowing what questions to ask

• Taking your medications as prescribed and be familiar with their side effects. It is important to take your medication regularly to keep constant blood levels, and it is also valuable for you to understand their side effects so you can recognise them. Sometimes the effects of seizures and medication side effects can be confused

• Checking before taking other medications or supplements. Many other substances can interact or mix poorly with your medication. It is always best to speak to your doctor before taking other medications or supplements

• Understanding your seizure patterns and what can trigger your seizures. By having this knowledge, you can recognise what may trigger your seizures and make necessary lifestyle changes to try to avoid or manage them to reduce the risk of seizures happening. Keeping a seizure diary can help recognise patterns

• Managing stress and mental health. Stress and poor mental health can increase the risk of seizures. Seizures and mental health can also worsen stress and mental health. Identify your sources of stress and find ways you can manage it that works for you

• Avoid large amounts of caffeine, alcohol or drugs as these substances can interact with anti-seizure medication and can impact on seizures. Caffeine and alcohol can be consumed in moderation, but you should avoid illicit drugs or discuss their use with your doctor to understand the impact they may have on your seizures

• Sticking to a healthy diet and regular exercise can have positive effects on seizures and your physical and mental health

• Join a support group to connect with others and share experiences https://www.facebook.com/groups/epilepsyactionandfriends

Take action:

Go to the EAA website for more information

Resources and online tools

Or do our online course

Keep a seizure diary

Call the Epilepsy Nurse Line on 1300 37 45 37, to discuss your epilepsy

Seizures, medications, and even other health conditions bear potential risks for many people. So, if you have seizures, it’s worth thinking about risks that may potentially arise for you. Learning to reduce risks is a critical part of living safely with seizures.

Just imagine, one minute you are carrying out your usual daily activities, and then next, you are temporarily unaware of what is happening around you. It’s hard to imagine, but this is what many people with epilepsy must live with. Unfortunately for people with epilepsy, their risk of harm can increase just by doing ordinary things like making a cup of tea, cooking a meal, crossing a road, catching a train, or having a bath. Depending on what you are doing or where you are, a seizure causing loss of awareness can pose significant risks to safety, especially if falls are also associated with seizures.

People have different experiences

• Some people have enough warning that their seizures are going to happen to get themselves to a safe place

• Some people have identifiable seizure patterns for example, seizures only happen first thing in the morning. This means they are more predictable and can give more flexibility to work around safety issues

• Some women can have hormonal related seizures, so take more precautions at this time

Click here for information and ideas about how to reduce your risks and safeguard your home.

Click here to learn more about safety products, alarms and monitors that are currently on the market.

Not everyone has to follow strict safety measures, and it is all relative to your situation. Do not put restrictions on yourself that reduces your quality of life or the things you enjoy.

Seizure first aid

First aid

It is important that people close to you understand how to manage your seizures.

Seizures mostly run their own course but there are a few things that can help.

Animated Seizure First-Aid video

Animated Seizure First-Aid video for Children

Follow this link to download and print first aid for seizures posters and to watch more video animations about seizure first aid.

Youth transition

Epilepsy Action Australia have developed resources to help youth with epilepsy to transition to adult healthcare services.

Moving from paediatric to adult health services is a gradual process, and generally involves a team of people. Young people find themselves in an adult environment where they need to take charge with discussing their health and take control over their health-related decisions, so being prepared is essential. Without good planning, a negative transitional experience can lead to poor health and social outcomes due to barriers, fragmented care and lack of access or engagement.

We hope these resources will better prepare the young person for transition and facilitate a positive and more collaborative and smooth transition. To use or view these resources, click here. They include:

• A Transition Checklist for you to download and fill out.
• An online Interactive Quiz which takes you through the checklist questions online and provides you with a personalised action plan.
• A video resource “It’s Hard for Parents too!” from psychologists from Macquarie University for your parents.
• A video of young people’s experiences and tips

 The above resources were funded under the joint Australian Government – NSW Government Disaster Funding Arrangements 2018.

Drug resistance epilepsy

About 1 in 3 people with epilepsy continue to have seizures despite treatment. This is often called medication or drug resistant epilepsy. Having drug resistant epilepsy can be a heavy burden and very much affect quality of life.

What is drug resistant epilepsy?

Drug-resistant epilepsy (DRE) is when seizures are not fully controlled after trying two appropriately prescribed anti-seizure medications and used for an amount of time as determined by the specialist.

The effects of drug resistant epilepsy on quality of life

^{Figure 1. Living with medication resistant epilepsy. Tang, F., Hartz, A., & Bauer, B. (2017). Drug-Resistant Epilepsy: Multiple Hypotheses, Few Answers. Frontiers in neurology}

Why are the medications not stopping the seizures?

The aim of anti-seizure medication is the best seizure control with the lowest dose and fewest number of medications, and the least amount of unwanted side effects.

If your seizures are continuing despite taking anti-seizure medication, sometimes, it does not mean you have drug resistant epilepsy. It may be because:

• The medication is not the right choice for your seizure or epilepsy type
• Your lifestyle may be affecting your seizures (eg stress, poor sleep, alcohol) or you may not be aware of all your seizure triggers, or not avoiding them as best as you can
• The diagnosis is wrong. Misdiagnosis is relatively common

People with drug resistant epilepsy often experience:

• Frequent medication changes,
• Taking two or more medications at the same time,
• Unwanted medication side-effects,
• More frequent visits to the doctor, emergency department or hospital

All of which can take a physical and emotional toll.

When seizures don’t respond to medication, what’s next?

Firstly, if you haven’t already done so, get a referral to a specialist epilepsy centre

There you will see a doctor called an epileptologist (a neurologist that specialises in epilepsy) who may be able to:

• Suggest a more appropriate medication or trial a newer epilepsy medication
• Investigate if epilepsy surgery is a possible option. Some epilepsy types are suitable for surgery to help control or stop seizures. See also Epilepsy Surgery
• Find out if vagus nerve therapy (VNS) is an option. VNS is a form of neuromodulation to manage seizures that don’t respond to medication or when surgery is not possible. It has other additional benefits. For more information go to What is VNS Therapy™
• Consider dietary therapies. Examples of diets currently being used are the ketogenic diet, Modified Atkins Diet, or low glycemic diet. See Dietary Therapies

There is no one treatment that’s right for everyone. People respond differently to medication and other forms of treatment.

If you have trouble with seizure control, seeing an epileptologist is a good step to finding out what other treatment options may be suitable for your type of epilepsy.

For more information

Drug Resistant Epilepsy

Is epilepsy common?

An estimated 65 million people worldwide have epilepsy. In Australia, over 12,000 people a year are diagnosed with epilepsy and approximately 250,000 Australians are currently living with epilepsy.

What does a seizure look like?

What you see will depend on the seizure type. Some signs of seizures include confusion, loss of awareness, staring, changes in behaviour, changes in muscle tone, muscle twitches or jerking movements, repetitive behaviours, unsteadiness, and convulsions.

Different seizure types have a wide array of symptoms and what the person may be experiencing includes hallucinations (visual, taste, smell), difficulties with speech, abnormal sensations such as numbness or tingling, nausea or butterflies in the stomach. Although seizures vary greatly from person to person, usually the features are consistent for each individual. Seizures can be very brief, a few seconds or may last a two to three minutes. Most seizures are over in less than two minutes and after most seizures the person will be temporarily confused and tired.

What causes epilepsy?

There are many possible causes of epilepsy, and anyone can develop epilepsy. There are also situations where the cause is just not clear. In about half of people diagnosed, they will never know the cause of their epilepsy.

Firstly, anything that causes damage to brain tissue, no matter how big or small, can cause seizures because it can affect how the brain cells send and receive messages.

People can have epilepsy from birth, inherit it or develop it from injury, disease, or infection.  Some events that can cause epilepsy include:

• Head injury or brain trauma
• Stroke or brain haemorrhage
• Lack of oxygen to the brain for instance during birth trauma, heart attack or drug overdose
• Brain infections
• Brain tumours

In other circumstances, epilepsy may be caused by:

• Brain abnormalities present at birth
• Genetic factors
• Conditions that affect the brain such as Alzheimer’s Disease
• Alcohol or drug abuse

Sometimes there may be more than one cause of the epilepsy. Many times, there is no known cause.

If I have a seizure does that mean I have epilepsy?

Having a seizure doesn't necessarily mean you have epilepsy. Many seizures can be a “once-off” and only happen in specific circumstances such as fever, injury, or illness. These seizures do not usually recur and are not diagnosed as epilepsy. They can include febrile convulsions (seizure in an infant or child with a fever), concussive convulsions (a seizure immediately following a concussion or head knock), convulsive syncope (jerky movements associated with fainting), and seizures with brain infections such as meningitis and encephalitis.

Is epilepsy life-long?

Some types of epilepsy last for a limited time or are 'age-related' and the person eventually stops having seizures. For others, epilepsy is a life-long condition. More than two thirds of people with epilepsy become seizure free with medication.