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 often about uncertainty. Sometimes taking a risk can mean trying something new and challenging yourself in a positive way. But, risk can also mean the chance of injury, danger or damage to someone’s health.
Epilepsy is a condition that varies greatly from person to person, so risks due to epilepsy depend on what someone's epilepsy is like.
We face risks every day, but some risks we worry about more than others. Looking at possible risks to your health and safety can be difficult or frightening. But looking at risks can also be positive because you might then be able to find ways of reducing risk or making activities safer. It may also make you feel more in control and able to put risk into perspective about what might, or might not, affect you. Looking at ways of managing risk may also help you do the things you enjoy and be as independent as possible while still keeping safe.
How does epilepsy affect risk?
Some activities, such as swimming or going out alone, may be more of a risk for people with epilepsy. People may also face specific risks because of their epilepsy, such as the risk of injury or accidents, as well as risks to their health or wellbeing.
Whether your epilepsy carries a risk depends on what your epilepsy is like: the number and type of seizures you have, and how your seizures affect you. Here are some examples.
If you have a seizure warning (when you know that a seizure is going to happen), this might mean that you can get to a safe place before a seizure happens, and so reduce the risk of an accident or injury.
If you have seizures where you become unconscious (for example, going 'blank' or falling down), or you become confused or are only partly aware of what is happening around you, your surroundings could be a safety risk. This could be important if, for example, you are near water, at a height, or using machinery.
If your seizures are controlled (stopped) with medication then there will be no specific risks to you related to having seizures.
Making choices about risk
Everyone is different. You may find it helpful to look at your own situation to see what you think the risks are to you because of your seizures. Being involved in making choices about things that affect you may help you to feel more in control of your epilepsy and confident about making choices in the future.
Depending on your age and situation, you might include other people when making choices, such as your parents, partner or carer, and your social care or healthcare professionals.
Getting good seizure control
Often the best way to reduce risks due to seizures is to stop seizures from happening. For most people this is by taking anti-epileptic drugs (AEDs).
To work best, AEDs need to be taken every day. Some people find that pill boxes help them to remember when to take their medication. These boxes have compartments for individual doses of medication throughout the day. Drug wallets are available from Epilepsy Society.
Some medication affects how other medications work, which can affect seizures. So it is often a good idea to check with your doctor or pharmacist before taking other medications alongside your AEDs. As with any medication, AEDs can have side effects. Possible side effects include tiredness, confusion and changes in mood. For some people these side effects mean that they don't want to continue taking AEDs. But suddenly stopping AEDs can cause seizures to happen again.
If you continue to have seizures even with AEDs, or if you are having side effects, you could talk to your doctor or neurologist about it. There may be other AEDs or doses you can try or other types of treatment may be an option.
Some people have triggers for their seizures: situations that bring on a seizure, such as stress or tiredness. If you know you have a trigger for your seizures you might be able to avoid the trigger so that you have fewer seizures.
Staying safe
How to make your surroundings or an activity safer for you will depend on what your seizures are like and how they affect you. It also depends on what your surroundings are like or what the activity is. It is often worth remembering that some surroundings or activities may have risks whether you have epilepsy or not. This might include some leisure activities such as mountain climbing or skiing.
Safety measures at home might include looking at risks around cooking, fire safety and around bathing. Outside of the home, this might include looking at activities such as cycling or swimming, and whether you can have someone with you who knows how to help if you have a seizure.
Telling people how your seizures affect you may mean they feel more confident in knowing how to help you to keep safe, and also if you have a seizure. Some people carry an ID card that says they have epilepsy and how to help during a seizure. There are also companies that make ID bracelets and other medical jewellery.
Safety aids and equipment
There are various safety aids and equipment that may you may find helpful. Again, this depends on what your epilepsy is like and what the situation is.
Alarms
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, and other can be set of by the person themselves if they feel a seizure coming on.
Safety pillows and helmets
Some people who have seizures during the night use safety or ‘anti-suffocation’ pillows. These pillows have small holes in them so that if someone is lying face down during a seizure they should still be able to breathe.
Safety helmets help to protect someone from injury if their seizures cause them to fall suddenly. Some helmets may also protect the face if the person falls forwards. See our page on personal safety equipment and alarms for suppliers of safety pillows and helmets.
Risk assessments?
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 would normally 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.
Women and risk
Some issues around risk are specific to girls and women with epilepsy. This depends on her age, type and number of seizures, and any medication she is 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 she 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 affect an unborn baby. This depends on the AED and the dose, and the risk can sometimes be reduced by lowering the dose or changing the type of AED. This risk often needs to be balanced with the risk of injury to the mother and baby if seizures are not controlled with medication.
Because these issues are often complicated and specific to ecah women, it is important that women are given the opportunity to talk to their epilepsy specialist before becoming pregnant. This is often called 'preconception counselling' and focuses on making sure AED treatment is right, to get the best seizure control, for both the mother and 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 the 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 1150 deaths related to epilepsy a year. Some of these deaths are caused by complications during or after a seizure), but others may be due to accidents, suicide or an underlying medical reason why someone has 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 30 minutes 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 the seizure doesn’t stop it 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 convulsive seizure immediately follows another with no recovery in between;
- a convulsive seizure lasts two minutes longer than usual for that person; or
- a convulsive 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 (SUDEP).
The number of people who die from SUDEP is thought to be around 600 per year in the UK. There are around 456,000 people with epilepsy in the UK so the numbers are relatively low. But these figures do not show the risk of SUDEP for an individual as everyone’s individual level of risk will depend on how their epilepsy affects them.
If you are concerned about SUDEP you might like to talk to your neurologist about what the possible risks of SUDEP mean for you.
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 cause anxiety, stress, or depression.
Not everyone with epilepsy has anxiety and 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.
If you feel your quality of life or wellbeing is affected by epilepsy, there may be support available through your GP, a counsellor, epilepsy specialist nurse, a support group or a helpline. Epilepsy Society runs a confidential helpline providing emotional support and information.
If you would like to contact other people who have epilepsy, there are some support groups in the UK or you can make contact through the forum on our website.
The Expert Patients Programme (EPP CIC) run 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.
Who can I talk to?
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.
If you would like to talk in confidence about risk, you can contact our confidential helpline on 01494 601 400 (Monday-Friday, 9am-4pm, national call rate).
© Epilepsy Society
Information updated March 2012.
