NSE : Information on epilepsy : Does my epilepsy put me at risk?

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Information on epilepsy: Does my epilepsy put me at risk?

What is risk?

In all areas of our lives, we take risks. Risk is the chance of something happening such as loss or injury, and so it is about uncertainty. Sometimes taking a risk can mean trying something new and challenging yourself in a positive way. However, risks to safety can mean the chance of injury, danger or damage to someone’s health.

How does epilepsy affect risk?

People with epilepsy may face specific risks because of their epilepsy. These may include the chance of injury or accidents, as well as risks to health or wellbeing, due to having seizures. Looking at possible risks to your health and safety can be difficult or frightening, and it may not be something that you are ready to think about. But being aware of possible risks and ways they might be managed can help to put some of the risks around epilepsy into perspective.

This page looks at some of the specific issues around risk and epilepsy, including safety, risk assessments, and how serious the risks can be.

Are risks the same for everyone with epilepsy?

The risks around epilepsy vary from person to person, and depend on what their epilepsy is like.

The risk of someone having an accident or injury in any area of life may depend on many things, including: the activity they are doing, the environment they are in, the choices they make, and their abilities. For people who have seizures, the risk of accidents or injury may also depend on the number and type of seizures they have, and how their seizures affect them. Many people get little or no warning that a seizure is going to happen, which may add to the risk of accident or injury.

Different types of seizures may have different risks to safety. Some people have seizures where they are unconscious and they may go blank for a while or fall down. In a tonic clonic seizure the person is unconscious and shakes (a convulsive seizure). Other types of seizures include complex partial seizures where the person is only partially aware and may show repetitive or confused behaviour. Some people have seizures when they are asleep (nocturnal seizures). If someone has a seizure where they are not fully aware of what they are doing, their surroundings could be a risk to their safety. For example, if they have a seizure near water, at a height, or while using tools or machinery.

For people whose seizures are controlled (stopped) by medication, there will be no specific risk of injury or accident due to seizures.

More information on epileptic seizures

Managing risk

The risks to people because of their seizures vary. Looking at ways of managing risk can help people to do the things they enjoy, keep them safer, and be as independent as possible.

Everyone is different

As everyone is different, it helps if each person looks at their own life to see what they think the risks are for them. This helps people to be independent and make their own choices.

If you are involved in making choices which affect you, especially when you are young, this can help you become confident about making your own choices in the future. In some cases, looking at the best choices for you may involve input from parents, carers, or social or healthcare professionals.

Everyone is different

As everyone is different, it helps if each person looks at their own life to see what they think the risks are for them. This helps people to be independent and make their own choices.

Getting the best seizure control

The best way of reducing risks due to seizures is to stop seizures happening. In most cases this is done by taking anti-epileptic drugs (AEDs).

To work well, AEDs need to be taken every day. Some people find that drug wallets, which have spaces for each day of the week, help them to remember to take the right dose at the right time.

Some medications do not mix well with other medications, and this can cause seizures. It is a good idea to check with a doctor or pharmacist before taking other medications.

Like all medication, AEDs can cause side effects. Possible side effects include drowsiness, confusion and changes in mood. For some people side effects can have a big impact on their life and general wellbeing.

If seizures are still happening even with AEDs, or if you are having side effects from your medication, it may be helpful to discuss this with your doctor or specialist. With medical guidance, AEDs can be changed or the dose adjusted.

Some people can identify triggers, such as being tired or stressed, that may make them more likely to have a seizure. Knowing what these triggers are, and trying to avoid them, can help reduce or stop seizures happening. If stress is a trigger, finding ways to relax, like breathing exercises, may help.

Drug wallets are available from pharmacies and from the NSE online shop
More information about medication for adults
More information about medication for children
More information about epilepsy and complementary therapie

Staying safe

By making an activity or environment safer, the risk of injury during seizures can sometimes be lowered. How you can make things safer may also depend on how your seizures affect you.

Safety measures may include looking at your home environment; issues around cooking; fire safety; the possibility of having a seizure in or near water, including when bathing at home; and whether you do activities on your own or are able to have someone with you who knows what to do if you have a seizure.

Talking to the people that you spend time with about how your seizures affect you can mean they are more able to help you to stay safe. For example, some people choose to carry an ID card that says they have epilepsy. This tells other people how they can help you if you have a seizure. There are also several companies that make ID bracelets and other medical jewellery.

Safety aids and equipment

There are various safety aids and equipment that may be helpful for some people with epilepsy. Altering or replacing equipment may make home or work safer. Again, what is useful will vary from person to person and depends on what they feel would help them.

Alarms

People who have seizures when they are asleep (nocturnal seizures), and those who live alone, may like to think about whether having an alarm would be useful. Alarms can be used to get help if a person has a seizure. There are many different types of alarm. Some are set off by the person themselves if they know they are going to have a seizure. Some are set off when the person has convulsions (shaking movements) or if they fall down.

Safety pillows

Some people who have seizures while they are asleep use safety or ‘anti-suffocation’ pillows. The pillows have small holes in so that if someone is lying face down during a seizure they should still be able to breathe.

What are risk assessments?

One way to look at reducing risks is to do a risk assessment. This may be useful in a work or school environment, when taking part in a leisure activity, or looking at ways to make your home safer. Those doing the risk assessment may be an employer or organisation, or an occupational health worker. A risk assessment may also done by an individual about themselves or by a carer.

A risk assessment for someone with epilepsy would look at whether they have seizures, how their seizures affect them, the environment they are in and the activity. Risk assessments should involve the person with epilepsy wherever possible. Helpful questions to ask during a risk assessment may include the following.

What is the activity?
What are the risks to safety for anyone doing this activity?
What is it about the person’s epilepsy that may put them or other people at risk (for
example, the type of seizures they have and how often they happen)?
What can be done to make this activity safer?

A risk assessment can suggest practical and safe choices where risks can be reduced and each situation can be explored on an individual basis.

Are there specific risks for women?

For a woman with epilepsy there may be specific risks to consider. This depends on her age, the type and number of seizures she has, and the medication she takes.

A woman’s hormone levels change during puberty (when her periods start), during periods, if she is pregnant or when she goes through the menopause. For some women with epilepsy there is a link between their hormones and having seizures. This may mean they have more seizures at these times and so may be more at risk of injury.

If a woman has seizures when she is pregnant there is also a risk of injury to her baby.

Around 95% (95 in 100) of pregnant women with epilepsy have a normal pregnancy and a healthy baby. However, some AEDs that some women take during pregnancy can affect an unborn baby. Sometimes risks can be reduced by lowering the dose or changing the type of drugs being taken, although there is a risk that making these changes to medication might cause seizures to happen. So this is usually done very slowly, with guidance from a doctor.

If you take AEDs and are thinking of having a baby, talking to your specialist before you become pregnant can help make sure your AED treatment is right for you and your pregnancy. This is called preconception counselling.

Quality of life

For many people with epilepsy, their general quality of life is not affected by their epilepsy and they enjoy a full and active life.

For some people however having epilepsy may bring risks to their health and quality of life beyond the risks of having seizures. These may include having anxiety, stress, or depression. Although many people with epilepsy do not have these problems, anxiety and depression are the most commonly reported psychological problems among people with epilepsy.

Not knowing when seizures may happen; concerns about AEDs or side effects; feeling isolated; and attitudes of other people towards epilepsy may add to these feelings. While everyone is different in how they cope with anxiety or depression, in some cases this may increase the risk of long term effects on mental health, or even suicide.

If you feel your quality of life or wellbeing is affected by epilepsy, there may be support available through your GP, a counsellor or epilepsy specialist nurse; or through talking to friends, a support group or a helpline.

The Expert Patients Programme (EPP CIC) run free courses across the UK for anyone living with a long term condition. The courses look at common quality of life issues such as wellbeing, self-esteem, depression and anxiety.

Expert Patients Programme (EPP CIC)

Can seizures damage the brain?

Everyone has some amount of brain cell loss as they get older. Whether seizures cause any more loss of brain cells is not clear. This may depend on the type and length of the seizures a person has. As everyone's epilepsy is different it may be helpful to discuss this with the consultant.

How serious can the risks be?

As with many other medical conditions, for some people there is a risk of dying because of their epilepsy. In the UK there are around 1000 epilepsy-related deaths per year, most of which are caused by complications during or after a seizure (see status epilepticus and SUDEP, below). Other deaths related to epilepsy may be due to accidents, suicide or to an underlying cause for the epilepsy.

What is status epilepticus?

Usually seizures stop by themselves. Occasionally this does not happen and a seizure is very long, or one seizure happens after another without the person recovering in between. If this continues for 30 minutes or more, it is called status epilepticus (often just called status).

If status happens in a convulsive seizure (where people collapse, are unconscious and shake), this is an emergency and an ambulance needs to be called. Emergency medication may need to be given to stop the seizure. If the seizure doesn’t stop it could cause lasting damage to the brain, or even death in some cases.

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 has stopped;
a convulsive seizure lasts two minutes longer than usual for that person;
a convulsive seizure lasts for five minutes and you do not know how long their seizures usually last; or
one convulsive seizure immediately follows another with no recovery in between.

This gives enough time for medical help to arrive and for treatment to be given to try and stop the seizure.

More information on first aid

What is SUDEP?

On rare occasions people die suddenly and for no clear reason. When this happens to people with epilepsy, it may be called Sudden Unexpected Death in Epilepsy (SUDEP).

SUDEP is when a person with epilepsy dies suddenly and where no other cause of death is found. It may be that a person has died during or after a seizure. Because SUDEP often happens when the person is asleep and it is not witnessed, it is hard to be sure why it happens. It may be that during a seizure the person’s breathing or heartbeat have been affected.

Research shows that SUDEP is related to seizures. So a key way to reduce risks of SUDEP is to try to get the best seizure control possible, usually with AEDs.

The number of people who die of SUDEP is thought to be around 600 per year in the UK. Compared to the 456,000 people in the UK who have epilepsy, the number of cases of SUDEP is relatively low.

These figures do not show the risk of SUDEP for any one person as everyone’s individual level of risk will depend on how their epilepsy affects them.

Some factors that may increase the risk of SUDEP include poor seizure control (especially tonic clonic or complex partial seizures), having seizures during sleep, not taking AEDs as prescribed, or having abrupt changes to AEDs.

Taking medication as prescribed, looking at ways to monitor seizures during sleep, and having regular reviews with your doctor or specialist can all be ways to reduce the risk of SUDEP.

If you are concerned about SUDEP, it may be helpful to talk to your doctor about your own situation, and what the possible risks of SUDEP actually mean for you.

Risk and me – who can I talk to?

You may have concerns or worries about the risks mentioned on this page.

It is worth remembering that each person with epilepsy has their own level of risk. This depends on various factors such as their seizure type and frequency and any underlying cause for the epilepsy. Talking to your doctor or specialist about the risks relating to your epilepsy may help to keep concerns in perspective.

You can talk to someone in confidence about any of the issues on this page by calling the Epilepsy Helpline.