Epilepsy is a common condition of the brain in which a person has a tendency to have recurrent unprovoked seizures.
Approximately 70 percent of people with epilepsy gain control of 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.
Epilepsy, like other long-term conditions such as asthma or diabetes, comes with certain risks. If left unchecked these can become very serious.
Seizure-related risks are higher when people have poorly controlled seizures. Good seizure control is the first step in reducing seizure-related risks.
Seizures can sometimes lead to injuries or falls, and they can occasionally be more serious – even contributing to, or causing, death. Different types of seizures carry different risks.
Your risk level depends on the type of seizures you have, and your lifestyle. For instance, poorly controlled tonic-clonic seizures pose the highest safety risk, and if you take part in activities such as mountain climbing, this risk is increased.
Life is never risk-free, but taking positive action to reduce your seizures, thinking about risks specific to you and discussing seizure management with your doctor are a start to reducing some of your seizure-related risks.
Epileptic seizure first aid
If you are with someone having a tonic-clonic seizure (where the body stiffens, followed by general muscle jerking), try to:
- Stay calm and remain with the person.
- If they have food or fluid in their mouth, roll them onto their side immediately.
- Keep them safe and protect them from injury.
- Place something soft under their head and loosen any tight clothing.
- Reassure the person until they recover.
- Time the seizure, if you can.
- Gently roll the person onto their side after the jerking stops.
Do not put anything into their mouth or restrain or move the person, unless they are in danger.
If a person having a seizure is in a wheelchair
If a person has a seizure when they are in a wheelchair, car seat or stroller:
- Leave the person seated with the seatbelt on (unless it is causing injury).
- Put the wheelchair brakes on.
- If it is a tilt wheelchair, tilt the seat and lock in position.
- Support their head until the seizure has ended.
- Lean the person slightly to one side to aid drainage of any fluid in the mouth.
After the seizure, if the person is having trouble breathing or they need to sleep, take them out of the chair and put them in the recovery position.
If their breathing difficulties continue, call an ambulance and closely monitor the person. Be prepared to perform CPR if they stop breathing.
Be aware that the CPR technique for adults is different to the CPR technique for young children and infants.
Seizures in water
If a seizure occurs in water:
- Support the person's head so their face is out of the water.
- Tilt their head back to ensure a clear airway.
- If the person is in a pool, remove them from the water when the jerking stops.
Note: In the rare circumstance the jerking does not stop, seek help from others if possible, and remove the person from the water at the shallowest end of the pool.
- If the person is in the surf, remove them from the water immediately.
- Flotation devices may be useful when removing someone from water.
- Seek help if possible.
Once out of the water:
- Call triple zero (000) for an ambulance immediately. (Do this even if the person is breathing, as they may have inhaled water.)
- Place the person on their side.
- Check to see if they are breathing.
- If they are not breathing, or they are not breathing normally, reposition the person onto their back and begin the appropriate form of CPR: CPR for adults or CPR for young children or babies.
When to call an ambulance for an epileptic seizure
Call triple zero (000) for an ambulance if:
- the seizure lasts for five or more minutes or longer than what is normal for the person
- a second seizure quickly follows
- the person is not responding for more than five minutes after the seizure ends
- the person has breathing difficulties after the jerking stops
- it is the person’s first known seizure
- the seizure occurs in water
- the person is injured
- you are in doubt.
Epilepsy and your safety
Anything that affects a person’s conscious state, awareness or judgement can increase the risk of accidents.
If you have a seizure, your doctor will advise you in relation to driving, the use of dangerous machinery, working above ground level and general safety issues.
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
Seizures can affect your ability to drive safely.
If you have a seizure or are diagnosed with epilepsy, your doctor will inform you that you cannot drive. How long this period will last will depend on many things including:
- what caused the seizure
- what type of seizure you had
- if it is epilepsy, and if so, what type of epilepsy.
If you meet certain criteria later on, you will be able to drive again – safely and legally. If you do not meet those criteria, your licence may not be renewed, or you may be issued a conditional licence.
It is your responsibility to inform the driving authorities about having epilepsy or a seizure. In Victoria, this means informing VicRoads.
Driving against medical advice is illegal and dangerous to you, your passengers and the general public. There are many safety factors to consider as seizures often occur without warning.
If you continue to drive and are involved in a motor vehicle accident during the recommended non-driving period, and it is found that a seizure was a contributing factor, you may be prosecuted and charged or even jailed.
Learn more about seizures and driving in Victoria.
Epilepsy and water safety
If a seizure happens in water it can lead to a life threatening situation. It is important to think about water safety, recognise risks and what steps to take if a seizure may happen in the water.
Some simple suggestions include:
- Never swim alone.
- Wear an approved life jacket for water activities, including boating and fishing.
- Avoid water sports such as scuba and high board diving.
- Have a shower rather than a bath, as showers pose less risk. If you only have a bath, use a hand-held shower attachment.
- Do not shower or bathe while alone in the house, if possible.
- Shower at a time when seizures are less likely to happen.
- Preferably have outward opening doors, sliding doors, half doors or doors that are easily removable fitted to the bathrooms.
- Keep bathroom doors unlocked.
Epilepsy and general hazards
People take risks every day, but people who have seizures may have to deal with different risks. By becoming aware of potential risks and ways these can be lessened, activities can be safer and most people with epilepsy can live full and active lives.
Injuries and accidents tend to occur more around the home than anywhere else. There are many ways you can make your home safer. Try doing a few things like:
- Arrange your home and, if possible, other areas such as your work or study space to be safe in the event you have a seizure. For example:
- pad any sharp corners
- use non-slip flooring
- always have good barriers in front of fireplaces or heaters
- have a door that opens both ways into your bathroom and toilet.
- If you wander or are confused during or after a seizure:
- pay special attention to heights, railings, stairs, swimming pools and other bodies of water
- shut your door when you are home alone, so you are less likely to wander outside or into dangerous areas
- make sure someone else has a key to get in and check on you
- consider wearing some form of medical ID.
- If you are likely to fall during seizures, ‘fall-proof’ your home and other areas as much as possible. Put in carpets, cover sharp corners, and avoid glass tables and shower screens.
- Consider wearing a protective helmet if you have frequent falls.
Keep your safety precautions sensible and relevant, with a balance between risk and restrictions. Enjoy life as much as you can and don’t restrict activities to a point where you exclude interest and fun.
Take the time to think about your home, work and leisure activities. What may be potential dangers if a seizure occurs? How can you reduce the risk of harm to yourself or others?
There are many practical ways you can easily improve the safety of your environment. For example, take a look at Epilepsy Action Australia’s safety checklist.
Most seizures last less than two minutes. However, some people with epilepsy tend to have severe or life-threatening seizures. For these people, seizures may be prolonged or happen in clusters. In some people these severe seizures can happen regularly.
These situations are considered seizure emergencies. They can lead to brain injury, so it is important to recognise and treat these seizures quickly.
Fortunately, it is possible to administer out-of-hospital medication in a way that is likely to stop a severe seizure. This medication can be prescribed by your neurologist.
Sudden unexpected death in epilepsy (SUDEP)
Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no reason for death is found.
SUDEP deaths are often unwitnessed, with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.
The cause of SUDEP is not yet known. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart.
SUDEP occurs in approximately 1 in 1000 people with epilepsy (1 in 4,500 children).
Having active or poorly controlled seizures can put you at risk of injury and death. Research has shown that there are certain types of seizure that increase your risk of SUDEP. Ask your doctor for more information about SUDEP.
Reducing the risks of SUDEP
Knowing about epilepsy-related risks of injury and death means you can take action against them. Steps you can take to reduce seizure-related risks, injury or death are:
- Get the best seizure control possible.
- Take your medication as prescribed.
- Speak to your doctor if you are not happy with your current medication or side effects.
- Have regular reviews with your doctor.
- Be involved in self-management.
- Avoid any known seizure triggers for you.
- Avoid drinking too much alcohol.
- Know when your seizures are most likely to occur.
- Get enough sleep.
- Be healthy.
- Manage stress.
- Make sure those close to you know what to do in case of a seizure.
Where to get help