Epilepsy

Epilepsy is a type of brain disorder where a person has recurrent seizures (sometimes called fits or convulsions).

A seizure is a sudden burst of uncontrolled electrical and chemical activity in your brain. This disturbs its normal pattern of activity, causing strange sensations, emotions and behaviour or sometimes jerking or twitching of the body or limbs, muscle spasms and loss of consciousness.

Key points

  1. Epilepsy is common. About 1–2 in 100 people in New Zealand develop epilepsy at some stage in their life.
  2. Epilepsy often starts in early childhood. However, anybody at any age can develop epilepsy. Some people are born with epilepsy, while others develop it as children or adults.
  3. Most epilepsy is genetic meaning that it is due to changes in the DNA that directs brain cell function. Sometimes it can be due to damage to the brain cells such as after a head injury or illnesses such as a stroke.
  4. Epilepsy is not a type of mental illness or intellectual disability. Most kinds of epilepsy do not affect how well you think or learn but some may be associated with mental health disorders and cognitive and behavioural problems.
  5. There are many kinds of epilepsy. With treatment, most people with epilepsy live normal, full lives. Famous people who have had epilepsy include Julius Caesar, Thomas Edison and Handel.
  6. Regular contact with your doctor or nurse is important to help keep you well and seizure-free.
  7. If you have epilepsy, it’s important to learn about possible triggers such as lack of sleep, stress and drugs.

What is epilepsy?

If you have epilepsy it means you experience recurrent seizures (sometimes called fits). A seizure is a sudden burst of uncontrolled or erratic electrical and chemical activity in your brain.

  • Many people have a single seizure in their lifetime caused by injury, illness or fever. Having a seizure does not mean you have epilepsy.
  • Epilepsy is diagnosed in individuals who have recurrent seizures or if they have only had a single seizure and have a high likelihood of having more.
  • The frequency of seizures in people with epilepsy varies. For some people, there may be years between seizures. At the other extreme, some people have seizures every day. For others, the frequency of seizures is somewhere in between these extremes. 

What causes epilepsy?

Most epilepsy is caused by genetic changes in the cells of the brain. When people have other family members with epilepsy this seems very obvious but many types of genetic epilepsy are not inherited (are not passed on from parents to child). The genetic change may only be in the person with epilepsy. Sometimes a person needs multiple genetic changes to develop epilepsy. Each individual genetic change may not cause epilepsy and can be inherited from either parent who does not have epilepsy. The combination of changes from both parents together combine to cause epilepsy. The abnormal bursts of electrical activity in the brain occur due to these genetic changes but we do not yet understand exactly why in many cases. It is unclear why seizures start at different ages or continue to occur.

Other causes of epilepsy include anything that injures the brain cells such as a  head injury, a growth or tumour in your brain, a stroke and previous infections of your brain such as meningitis and encephalitis. Epilepsy can also be associated with other brain disorders such as Alzheimer’s disease, cerebral palsy, intellectual disability or autism spectrum disorder. If you start getting seizures this will need to be fully investigated by your doctor.

What triggers a seizure?

Some people with epilepsy find that certain triggers make a seizure more likely, but often there is no obvious reason a seizure occurs at one time and not at another. These are not the cause of epilepsy but may trigger a seizure on some occasions.

Possible triggers
  • forgetting to take your epilepsy medication 
  • stress or anxiety Read more
  • lack of sleep or extreme tiredness
  • irregular meals (or skipping meals), which may cause low blood sugar level
  • heavy alcohol intake or using illicit drugs
  • flickering lights, such as from strobe lighting or video games
  • periods (menstruation) or hormone changes
  • illnesses that cause fever (high temperature), such as flu or other infections
  • some medicines such as antidepressants or antipsychotic medication (as these lower the seizure threshold in the brain)

What are the symptoms of epilepsy?

The symptom of epilepsy is seizures. There are many different types of seizure, depending on the area of your brain that is affected. In general:

  • Most people have a consistent pattern of seizures.
  • Seizures can occur when you are awake or asleep.

People experience seizures differently:

  • Some have episodes where they ‘go blank’ for a few seconds or minutes.
  • Others remain fully conscious during a seizure and can describe their experience.
  • For others, consciousness is affected and they are confused when the seizure ends.

A seizure may involve the whole brain (generalised seizure) or part of the brain (focal seizure). In some types of seizures, individuals may lose consciousness and fall, with their limbs initially stiff and then jerking. This type of seizure is called a tonic-clonic seizure (previously known as grand mal).

What are the different types of seizures?

There are two main types of seizures – generalised and focal (which used to be called partial). The type is determined by how the seizures start.

Types of seizures Description
Generalised seizures
  • Generalised seizures result from abnormal brain activity on both sides of your brain at once.
  • These seizures may cause momentary stares, loss of consciousness, falls or repetitive muscle jerks.
  • There are 6 main typesofgeneralised seizures:
    • absence seizures (previously called petit mal)
    • myoclonic seizures
    • generalised clonic seizures
    • generalised atonic seizures (or 'drop attack')
    • generalised tonic seizures
    • generalised tonic-clonic seizures (previously called grand mal).
Focal seizures (previously called partial)
  • Focal seizures start in one part of your brain. The sensations or feelings you experience during a focal seizure depend on which part of your brain is affected.
  • Focal seizures can be classified in many ways. The most important way is related to the level of awareness the person has during the seizure:
    • focal aware seizures
    • focal impaired awareness seizures.
  • Focal seizures may spread to affect both sides of your brain and result in bilateral body and limb stiffening and jerking. When this occurs, the seizure is called a focal to bilateral tonic-clonic seizure.

Read more about the symptoms of the different types of seizures.

What to do if someone has an epileptic fit?

Having the right assistance and support during a seizure can help prevent people serious injuries.

  • Stay with the person until the seizure ends. Keep onlookers away.
  • Prevent injury by moving any nearby objects out of the way. If the person is close to a wall or hard furniture, pad the area with clothing or a pillow to avoid further injury.
  • Do not hold the person down. This may result in a broken bone or soft tissue injury.
  • Do not put anything in the person's mouth. This may damage the tissues in their mouth or cause them to choke.
  • Do not give the person water, pills or food until they are fully alert.
  • If the seizure continues for longer than 5 minutes, call for an ambulance.
  • Be sensitive and supportive and stay calm.

Read more about what to do if someone has an epileptic fit – the do's, the don'ts and when to call an ambulance.

How is epilepsy diagnosed?

The most important tool for diagnosing epilepsy is your history. Your doctor will want to know what happened, whether anyone else saw you, whether there were any triggers, how you felt afterwards, if you had any previous symptoms or any family history of epilepsy, any infections, your birth history and so on. 

It is extremely helpful for your doctor to see videos of your seizures. If at all possible it is great to give your permission for other family members or friends to video you having a seizure on their phone so that you can show this to your doctor. Any possible seizure-like symptoms need to be discussed with your doctor right away. You must not drive until a doctor says it is safe for you to drive again. 

Some of the tests that are used to help diagnosis epilepsy are: 

How is epilepsy treated?

The most common treatment for epilepsy is medication, called anti-epileptic drugs (AEDs). While AEDs do not cure epilepsy, many people have their seizures successfully controlled with anti-epileptic medication.

Anti-epileptic drugs (AEDs)

These work by stabilising the electrical activity of your brain, and successfully control seizures for many people. There are several different AEDs available. Your health professional can inform you as to the best medication for you. Deciding on which medicine to prescribe depends on many things such as:

  • your type of epilepsy
  • your age
  • other conditions you have
  • other medicines that you may take for other conditions, and their possible side-effects
  • whether you are pregnant – read more about epilepsy and pregnancy
  • whether you are planning a pregnancy – read more about epilepsy and contraception.

It may take some time to find the medication that works best for you. In most cases, only one AED is needed to prevent seizures, but some people may need two or more medicines. When starting your AED, your doctor will start you on a lower dose and may increase it if this fails to prevent seizures.

The decision when to start medication can be difficult. A first seizure may not mean that you will have a second seizure and a second seizure may not occur for years later. The decision to start medication should be made by thinking about the benefits and risks of starting, or not starting, the medicine. In children, it is unusual to start treatment after a first seizure. A common option is to wait and see after a first seizure. If you have a second seizure within a few months, more are likely, so it may be a good idea to think about starting medication.

Read more about anti-epileptic medication and the risks and benefits of taking antiepileptic medicines if you are pregnant or thinking of getting pregnant.  

Other treatments for epilepsy

  • Surgery to remove the cause of seizures in your brain is an option in a small number of individuals with focal epilepsy. It may be considered when medication fails to prevent seizures. It is only possible for certain causes in certain areas of the brain, so, only a small number of people are suitable for surgery. Also, there is risk involved in brain surgery. However, techniques continue to improve and surgery may become an option for more people in the future.
  • The ketogenic diet, which needs to be supervised by an experienced dietitian, is useful for some children and adults with particular types of epilepsy that will not respond to medication. Read more about ketogenic dietary therapies
  • Complementary therapies, such as aromatherapy, may help with relaxation and relieve stress but have no proven effect on preventing seizures.

What self-care can I do if I have epilepsy?

Healthy eating, regular exercise, being a non-smoker, taking your medications correctly, having a positive attitude and seeing your healthcare team regularly, are all very important steps you have control over for keeping well. Here are a few tips on what you can do to live well with epilepsy.

Tip Description
Know your triggers Some people can identify certain events, lights, stress or foods that can trigger a seizure. Keeping a diary can be a good way to help work out what these may be for you. Read more about mobile apps for epilepsy that can help you keep track of your seizures and medication.  
Take your medication Take your medication exactly as prescribed. If you have any questions or are unsure of what to take and when check with your pharmacist or doctor. This is probably the most effective way to live well with epilepsy. Missing out doses of medication increases the risk of more seizures.
Regular reviews with your GP/nurse team Regular reviews of your epilepsy and treatment with your GP/nurse team are very important to help pick up problems early and prevent other problems arising. Often people with epilepsy are also under a hospital specialist team (neurologist or clinical nurse specialist) when expert input is needed. 
Eat a balanced diet Eat a balanced diet, containing all the food groups, to give your body the nutrition it needs.
Exercise regularly  Exercising regularly can increase the strength of your bones, relieve stress and reduce fatigue, which can reduce the likelihood of seizures. Read more about epilepsy, sports and leisure
Limit alcohol Heavy drinking can cause seizures, as well as interact with your medication, making side effects worse and the medication less effective. Heavy drinking also upsets sleep patterns and this can increase your chances of having a seizure. 
Create a safe environment Be aware of how to reduce injuries and accidents caused by seizures. Read more about safety around the home.
Become an expert self-manager Become an expert self-manager. You are the most important person to keep yourself well and your epilepsy well controlled. Self-care involves taking responsibility for your health and wellbeing with support from those involved in your care. Also, talk to your healthcare provider about any aspect of your care that you are not satisfied with. Together you can find support and solutions. Read more about how to communicate with health professionals.

People with long-term conditions such as epilepsy can benefit enormously from being supported to self-care. They can live longer, experience less pain, anxiety, depression and fatigue, have a better quality of life and be more active and independent.

If you want to find out more about epilepsy self-management, you may want to talk to your GP or specialist about participating in a self-management programme. (NHS Living with epilepsy)

Sudden unexpected death in epilepsy (SUDEP)

If a person with epilepsy dies and no other cause of death can be found, this is called SUDEP (sudden unexpected death in epilepsy).

How common is SUDEP?

SUDEP is less common in children than in adults.

  • In one year, SUDEP typically affects about 1 in 1,000 adults with epilepsy; in other words, 999 of 1000 adults will not be affected by SUDEP
  • In one year, SUDEP typically affects about 1 in 4,500 children with epilepsy; in other words, 4499 of 4500 children will not be affected by SUDEP.

Who is at risk of SUDEP?

The cause of SUDEP is unknown but there are some things that can increase the risk of SUDEP:

  • having tonic-clonic seizures (previously call grand-mal seizures)
  • having seizures at night or seizures when asleep
  • having poorly controlled epilepsy, usually because of not taking medication regularly as prescribed.

Can I change the risk of SUDEP?

The best way to lower your risk of SUDEP is to minimise the number of seizures you have. See the information above about what self-care can I do if I have epilepsy?

Support

While epilepsy cannot be cured, most people who have it live full, normal and happy lives. However, epilepsy can be difficult and frustrating if you cannot drive or do your favourite activities or sports.

  • Contact Epilepsy NZ 0800 20 21 22 (Epilepsy NZ) and online support groups to talk with families who know what it's like.
  • Make sure children are supported and not getting teased or bullied at school. 
  • Look out for emotional or behavioural problems especially in children which can be more common in those with epilepsy. 
  • In New Zealand there are numerous social supports available through social services.Read more   

Learn more

Epilepsy FAQ Epilepsy New Zealand
Epilepsy and newborn babies Epilepsy New Zealand
Epilepsy and children Epilepsy New Zealand
Epilepsy and teens Epilepsy New Zealand
Epilepsy and women Epilepsy New Zealand
Epilepsy and men Epilepsy New Zealand
Epilepsy and memory Epilepsy New Zealand
Are you taking medicines for epilepsy, mood or pain? (For women and their families/whanau) ACC, New Zealand 
Sudden Unexpected Death in Epilepsy Brain Health Research Centre, University of Otago
SUDEP Epilepsy Foundation, US
SUDEP Epilepsy Society, UK

References

  1. Epilepsy Ministry of Health, New Zealand
  2. Epilepsy guidelines and pathways for children and young adults Starship, NZ 2017
  3. What is epilepsy? Epilepsy Society, UK
  4. Epilepsy Better Health Channel, Australia

Reviewed by

Lynette Sadleir photo
Associate Professor Sadleir is a physician-scientist with expertise in epilepsy phenotyping. She is the Director of the Epilepsy Research Group, a group which is committed to improving the quality of life for individuals with epilepsy and their families.
Credits: Health Navigator Editorial Team. Reviewed By: Associate Professor Lynette Sadleir, Paediatric Neurologist, University of Otago, Wellington Last reviewed: 03 Dec 2017