Epilepsy is a common neurological condition in which a person has a tendency to have recurring seizures. For those people who are at risk of recurring seizures, approximately 70 per cent can usually control their seizures with medication. People who continue to have seizures are more vulnerable to the potential risks associated with seizures, especially when seizures occur without warning and impair awareness. Good seizure control is the first step in reducing the risks associated with epilepsy.
The cause, type and frequency of seizures vary. Assessing potential risks and how to manage them will involve considering all aspects of a person’s seizures, such as seizure type, frequency, severity, when they occur and what impact they have on the person’s awareness. The person’s lifestyle, including occupation and leisure pursuits, will need to be considered as part of the safety assessment.
Many people who witness a seizure fear that the person may be harmed by the event, especially if they witness a tonic-clonic seizure (formerly known as a ‘grand mal’ seizure). However, the risk of brain damage or death from a seizure is low. A person is most at risk of harm if they are doing something dangerous when a seizure occurs, especially if their awareness is impaired during the seizure.
Epileptic seizure first aid
If you are with someone having a tonic-clonic seizure (a generalised seizure in which the muscles suddenly stiffen and the person may fall), you should try to:
- Stay calm and remain with the person
- Time the seizure from the beginning until it has ended
- Protect the person from injury – remove any hard objects that are near the person in preference to moving the person
- Place something soft under their head and loosen any tight clothing at their neck
- Gently roll the person onto their side as soon as it is possible to do so and firmly push the angle of the jaw forward to assist with breathing. A person cannot ‘swallow their tongue’, but the tongue can move back to cause a serious blockage to breathing. Establish communication with the person so you know when they have regained consciousness
- Reassure the person and minimise embarrassment during recovery
- Stay with them until they recover – this may range from five to 20 minutes or longer.
- Force anything into their mouth
- Restrain the person unless they are in danger
- Give pills, food or drink until recovery is complete.
Epileptic seizure emergency response
You should call triple zero (000) if:
- The seizure lasts for five or more minutes or a second seizure quickly follows the first
- The person is not conscious within five minutes of the seizure stopping
- The person does not fully recover after the seizure or has trouble breathing
- The seizure occurs in water
- The person is injured
- The person is pregnant
- You believe it is the person’s first seizure or you do not know – this applies regardless of how long the seizure lasts
- You are in doubt.
Call an ambulance for any type of seizure lasting five
minutes or longer, unless you have that person’s epilepsy management plan that gives other instructions.
If the person is in a wheelchair
If the seizure occurs in a wheelchair, car seat or stroller, leave the person seated as long as they are secure and safely strapped in. Support their head until the seizure has ended. Sometimes, they may need to be taken out of the chair at the end of the seizure, for example, if the airway is blocked or they need to sleep. If there is food, water or vomit in their mouth, remove the person from their seat and roll them onto their side immediately.
If it is not possible to move them, continue to support the person’s head to ensure it does not tilt backward, then remove the contents of their mouth when the seizure is over.
Seizures in water
If the seizure occurs in water, support the person in the water with their head tilted so it stays above the surface. When jerking stops, remove the person from the water and check to see if they are breathing. If they are not breathing, start CPR immediately, then call an ambulance.
Even if the person appears to be fully recovered, you should still call an ambulance. The person should have a full medical check-up as inhaling water can cause lung or heart damage. The person should not continue with swimming or water sports that day, even if the person appears to be fully recovered.
Epilepsy in the workplace and at school
Employers, schools and other organisations in the community are sometimes concerned about the safety of people with epilepsy. Policies should acknowledge that epilepsy and the associated risks vary from person to person diagnosed with epilepsy. Safety strategies need to be realistic, appropriate and practical, allowing for individual differences.
Epilepsy and employment law
A diagnosis of epilepsy does not automatically exclude people from most jobs. Most employers are interested in your skills, abilities, qualifications and experience. Your epilepsy is only relevant if you have seizures that are likely to interfere with your ability to do your job.
The Equal Opportunity Act and the Disability Discrimination Act legally protect people with epilepsy from discrimination.
In some cases, there are laws that would prevent you following a particular career. If the work is dangerous and your seizures are not well controlled, you could be at risk of injury.
Epilepsy and your safety
Anything that affects a person’s conscious state, awareness or judgement can increase the risk of accidents. Following a seizure, the doctor will make recommendations in relation to driving, the use of dangerous machinery, working above ground level and general safety issues. The advice will be based on the person’s medical assessment.
Some people choose to wear a specially designed medical alert bracelet or pendant with epilepsy information, in case of an accident. Another option is to carry medical information in your wallet.
Epilepsy and driving
If you have epilepsy or seizures, you can hold a learner’s permit or driver’s licence for private vehicles as long as your seizures are well controlled. National medical guidelines have been developed by specialists to assist with the assessment of applications from people with epilepsy or seizures. Each application is considered individually.
If you hold a current learner’s permit or driver’s licence, you are required by law to notify VicRoads if you have or develop any serious chronic medical condition such as seizures and epilepsy. In most cases, people who have had a seizure are required to notify the licensing body and stop driving until a medical report is supplied.
Epilepsy and water safety
Water safety is particularly crucial, because a person who experiences a seizure while alone in water will almost certainly get into difficulty and may even drown.
- Be alert – showers, baths, pools, spas and the ocean are problematic for anyone experiencing seizures.
- Have a shower instead of a bath and take special care when you use hot water. Good safety hints for any home are to turn on the cold tap first in the shower or basin and lower the temperature of the hot water service.
- Swim with companions who are aware of your condition and who are physically strong enough to support you and know what to do if you have a seizure.
- Swim in supervised areas, such as in a public pool with an attendant or at the beach between the flags, where lifeguards are on patrol.
- Tell the pool attendant or lifeguard that you have epilepsy and the type of seizures you experience. You may need to brief them on how best to help you, if they don’t already know.
- People with epilepsy, even if well controlled, should never swim alone.
Epilepsy and general hazards
Take the time to think about your home, work and leisure activities. What are the potential dangers if a seizure occurs? How can you reduce the risk of harm to yourself or others?
There are many general safety strategies that can help, such as:
- Use smoke alarms
- Install fireguards
- Get an electrician to install a circuit-breaker
- Use anti-slip mats in the shower and shower screens designed to minimise injury if someone falls in the bathroom. You may also consider using a shower chair
- Wear a bicycle helmet when riding.
You may find it helpful to work through a checklist from the Epilepsy Foundation of Victoria or community safety organisation.
Prolonged epileptic seizures
Most seizures are spontaneous, brief and self-limiting. Status epilepticus refers to a prolonged seizure, or cluster of seizures, which occur one after the other in quick succession without recovery between the episodes. Status epilepticus is uncommon but can be life-threatening or cause brain damage, especially in a case of convulsive status epilepticus.
This is a medical emergency and must be treated urgently
. Dial triple zero (000) to call an ambulance if a seizure continues for five minutes or more, unless the person has an epilepsy management plan that advises you to do something else.
Sudden unexpected death in epilepsy (SUDEP)
In recent years, there has been increasing awareness of sudden unexpected death in epilepsy (SUDEP). The cause of SUDEP is not well understood and it is difficult to estimate the incidence. SUDEP is rare in people with new onset epilepsy and also in people in remission who no longer have active epilepsy. The higher overall risk appears to relate to people with chronic epilepsy.
Some key risk factors for SUDEP are:
- The 20 to 40 age group is at greatest risk
- Generalised tonic-clonic seizures
- Seizures at night
- Poorly controlled seizures
- Abrupt and frequent changes of medication in people whose seizures are not well controlled or who do not take their medication as instructed by their doctor.
Reducing the risks of SUDEP
Some prevention strategies include:
- Have regular medical reviews of your epilepsy, especially if you experience ongoing seizures.
- Learn about your epilepsy.
- Tell your doctor if you are having seizures.
- Follow your treatment plan and tell your doctor if you are having unpleasant or serious side effects. A rash can be a sign of a serious allergic reaction.
- Identify and avoid any seizure triggers, such as lack of sleep or excessive alcohol intake.
- Adopt good general safety strategies.
- Identify and reduce potential hazards where possible.
- Give detailed first aid instructions to those who might support you.
- Consider using a seizure alarm for nocturnal convulsive seizures.
- Never abruptly stop taking your medication unless advised by your doctor.
- Showering is safer than bathing.
- Never swim alone and always ensure you are swimming with someone capable of rescuing you.
- Cease driving if you have a seizure until you have been cleared by your doctor and VicRoads.
Where to get help
- Your doctor
- Epilepsy Foundation of Victoria Tel. (03) 8809 0600
- Epilepsy Helpline Tel. 1300 852 853
- Children’s Epilepsy Program, Royal Children’s Hospital Tel. (03) 9345 5661
Things to remember
- Epilepsy is a common neurological condition in which a person has a tendency to have recurring seizures.
- Risk management for people with epilepsy needs to take into account the unique circumstances of each person.
- Good seizure management will help reduce epilepsy risks.