risks with epilepsy
In the UK there are around 1,200 deaths related to epilepsy a year. Some of these deaths are caused by complications during or after a seizure. Other deaths may be due to accidents, such as falls, drowning or suicide. Recent studies show that the majority of premature deaths in people with epilepsy may be caused by another condition the person has alongside their epilepsy. These include underlying neurological problems which may have caused the epilepsy, heart or breathing conditions, anxiety, depression or other mental health conditions, and some cancers. Other deaths in people with epilepsy relate to drug or alcohol abuse.
Safety aids and equipment
There are various safety aids and equipment depending on what your epilepsy is like and your situation.
Seizure alarms and monitors
Some people choose to have an alarm, which is set off when they have a seizure, to get help. This can be helpful if you have seizures during the night or if you live alone.
There are different types of alarm for different types of seizure. Some are set off when someone falls in a seizure or has a convulsive seizure in bed. Others can be set of by the person themselves if they feel a seizure coming on.
Safety helmets help to protect someone from injury if their seizures cause them to fall suddenly. Some helmets have face guards to protect the face if the person falls forwards.
Risk assessments may be useful at work or school, for leisure activities, or for ways to make the home safer.
You might want to do a risk assessment yourself, or it may be appropriate that a carer, an employer, an occupational health worker or social services do this with you.
A risk assessment normally would include looking at whether you have seizures or not, how your seizures affect you and what the environment or activity is. It might include the following:
- What is the activity?
- What are the risks to safety for anyone doing this activity?
- What is it about your epilepsy that may put you, or other people, at risk (depending on the type of seizure you have)?
- What would make the activity safer?
Risk assessments can help to identify practical ideas for reducing risk to make situations safer.
Download our risk assessment forms.
Women and risk
Some issues around risk are specific to girls and women with epilepsy. This depends on their age, type and number of seizures and any medication they are on.
Hormone levels change during puberty, periods, pregnancy and through the menopause. For some girls and women, there is a link between hormones and when they have seizures. This means that they may be more likely to have seizures, and be at greater risk of injury because of seizures, at these times.
There are specific issues around pregnancy for women with epilepsy. Most pregnant women with epilepsy have a normal pregnancy and a healthy baby. However, some anti-epileptic drugs (AEDs) can cause birth defects or developmental problems. This risk can sometimes be reduced by lowering the dose or changing the AED. This risk needs to be balanced with the risk of injury to the mother and baby if seizures are not controlled with medication. In rare cases, risks of uncontrolled seizures can mean serious injury, or even death.
Because these issues are often complicated and specific to each woman, it is important that women can talk to their epilepsy specialist before becoming pregnant. This is often called 'preconception counselling' and focuses on making sure AED treatment is right, for the mother to get the best seizure control, and for the baby.
Can seizures damage the brain?
Everyone has some brain cell loss as they get older. Whether seizures cause any extra loss of brain cells is not clear. This may depend on the type and length of seizure that the person has.
Memory may be affected during or after a seizure. This can be because the brain cells in parts of the brain responsible for memory can be sensitive to the effect of seizures. How long it takes to recover can vary from one person to another, and even after fully recovering from a seizure, some people's memory might be permanently affected. If you are worried about this, you might like to talk to your neurologist or doctor about how your epilepsy might affect you.
How serious can risks be?
As with many other medical conditions, for some people there is a risk of dying due to their epilepsy. In the UK there are around 1200 deaths related to epilepsy a year. Some of these deaths are caused by complications during or after a seizure. Others may be due to accidents such as falls, drowning, suicide or they may be linked to another condition that a person may have alongside their epilepsy.
What is status epilepticus?
Usually a seizure will stop by itself. Sometimes this does not happen and a seizure is very long or one seizure happens after another without the person recovering in between. If this carries on for 5 minutes or more, it is called status epilepticus (or 'status').
If status happens in a convulsive seizure (where people fall down and shake), this is a medical emergency and an ambulance needs to be called. Emergency medication may need to be given to stop the seizure. If a convulsive seizure goes on for 30 minutes or more, this could cause lasting damage to the brain, or even death.
An ambulance should be called if:
- it is the person's first seizure
- they have injured themselves badly
- they have trouble breathing after the seizure
- one seizure immediately follows another with no recovery in between
- the seizure lasts two minutes longer than usual for that person
- the seizure lasts for five minutes and you do not know how long their seizures usually last.
What is SUDEP?
On rare occasions people die suddenly for no clear reason. When this happens to someone with epilepsy it may be called Sudden Unexpected Death in Epilepsy (or SUDEP).
SUDEP is when a person with epilepsy dies suddenly and where no other cause of death is found. It may be that they died during or after a seizure. Because SUDEP often happens when the person is asleep and is not witnessed, it is hard to be sure why it happens. It may be that the person's breathing or heartbeat have been affected. In the UK around 600 people die from SUDEP each year. This is 1 in 1000 people with epilepsy, so SUDEP is relatively rare.
But these figures do not show the risk of SUDEP for an individual because everyone’s individual level of risk will depend on their epilepsy, lifestyle, any conditions they have alongside epilepsy and other factors, such as their age and sex.
Research shows that SUDEP is related to seizures. So a key way to reduce the risk is to try to get the best seizure control possible, in particular for convulsive seizures.
Things that can help reduce risks of SUDEP include:
- taking your AEDs as prescribed
- avoiding sudden changes to your AEDs
- having good seizure control especially at night, and using a seizure alarm if you have seizures at night
- having regular reviews with your doctor or specialist to monitor your epilepsy and your general health
Your specialist can discuss with you your individual epilepsy, and whether these risks apply to you.
Epilepsy deaths are not common but do happen, and while not all deaths are avoidable, some are. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy. If you have been affected by an epilepsy death please visit www.sudep.org or contact the SUDEP Action support team on 01235 772852.
Quality of life
Many people with epilepsy enjoy a full and active life. But for some, epilepsy may affect their health and quality of life more than just the effect of having seizures: their epilepsy may come alongside anxiety, stress, or depression.
Not everyone with epilepsy has anxiety or depression but they are the most commonly reported mental health problem for people with epilepsy. Epilepsy can make anxiety or depression worse due to not knowing when seizures will happen, concerns about side effects of medication, or feeling isolated. Everyone is different in how they cope with anxiety or depression but this may increase the risk of long term problems or even suicide.
Read more about epilepsy and mood.
Talk to someone
To talk about concerns around epilepsy and premature mortality, please call the Epilepsy Society helpline on 01494 601 400.
If you would like to contact other people who have epilepsy, there are some support groups in the UK, call our helpline for details.
Self management UK runs free courses in the UK for anyone living with a long term condition. The courses cover quality of life issues such as wellbeing, self-esteem, depression and anxiety.
If you are concerned about anything you have read on this page, it is worth remembering that not all of the risks may apply to you. Risks depend on the type and number of seizures you have and how they affect you. There may also be things you can do to help reduce your risk. You could also talk to your doctor or specialist about any concerns.