Epilepsy in later life
Epilepsy can happen to anyone and can start at any age, but is most common in people who are over 60. We use the terms ‘later life' and ‘older people' to refer to people aged 60 or over.
There are many possible causes for developing epilepsy in later life. An important part of investigating epilepsy involves checking for other conditions that may look like epileptic seizures. Most people who are diagnosed with epilepsy are prescribed anti-epileptic drugs, and those involved in your epilepsy care may include a specialist and your GP. A diagnosis of epilepsy may affect your life in various different ways, or not at all. You may wonder how your family and friends will react, or how epilepsy might affect your daily life, leisure activities or your living arrangements. Some simple measures can help improve your safety at home and when you are out and about.
What is epilepsy?
Epilepsy is a neurological condition (affecting the brain and nervous system). If you have epilepsy it means that you tend to have seizures that start in the brain.
We understand more about epilepsy these days. We know that many old misunderstandings about epilepsy are not true. Epilepsy is not something you can catch from another person. It is not a mental health problem and it does not cause dementia.
There are many different words used for seizures, such as ‘fits', 'attacks' or ‘funny turns'. Some people have episodes that look like seizures but that are not due to epilepsy (see Epilepsy or something else?). When we use the word ‘seizure' we mean an epileptic seizure.
Are there different types of seizure?
We often think of seizures as convulsive, where someone collapses and their body jerks, but there are different types of epileptic seizure.
What to do if someone has a seizure
See our 10 first aid steps when someone has a seizure.
Should someone call an ambulance for me?
Most seizures happen without any warning, last for a short time and stop without needing any special treatment. Usually you won't need to have an ambulance called for you, but there are some times when an ambulance should be called.
After a seizure
It can take some time to recover after a seizure. You may have a headache or feel very tired and want to sleep. You may have a ‘post-ictal' (after seizure) period where you feel confused or lose some memory for a while. Very rarely, you may have some numbness in part of your body for a while (called Todd's paralysis). You may feel back to normal again after a short time, or it may take you hours or days to feel fully recovered.
How is epilepsy diagnosed?
Epilepsy is a tendency to have seizures, so a single seizure is not usually classed as epilepsy. However it is recommended that any single seizure is investigated by a doctor,as there may be various possible causes.
If you have had one or more seizures, your GP should refer you to a specialist. This will usually be a neurologist (a doctor who specialises in conditions or the brain and nervous system), or a geriatrician (a doctor who specialises in the medical care of older people). Ideally this will be someone who also specialises in epilepsy.
Much of how epilepsy is diagnosed is based on finding out what happens during the unusual events you have had, so your specialist may ask you to describe in detail what happened before, during and after the event.
What will the specialist ask about?
If you can't remember what happened, someone else who was with you may be able to give a description. They could either come with you to the appointment, or write the description down for you to take with you.
If you do not remember what happens during your seizures, or if no one else can describe them, your specialist may suggest a short stay in hospital for investigation.
Tests to help diagnose epilepsy
There are tests that can help to diagnose epilepsy. The tests alone cannot confirm or rule out epilepsy, but they can give extra information to help find out why you are having seizures.
Epilepsy or something else?
Not all 'funny turns' are due to epilepsy. Some other medical conditions may look like epileptic seizures. Also seizures themselves can vary. For these reasons, epilepsy can sometimes be hard to diagnose.
Other conditions that can look like epileptic seizures include fainting (syncope) which has many possible causes including a drop in blood pressure. Other conditions also include very low blood sugar which may happen in people being treated for diabetes. Problems with blood circulation and the heart can also look like epilepsy. The symptoms of a transient ischaemic attack (TIA or 'mini-stroke') may sometimes be confused with a seizure, because they affect one side of the body or the person may be temporarily unable to speak.
Your doctors may therefore do tests to rule out other causes.
If another condition is found at an early stage, this may help you and your doctors to manage it.
What might have caused my epilepsy?
There are many possible causes of epilepsy, and some causes are more common in later life. As we get older our bodies start to change. The blood vessels that supply blood to the brain may become narrower and harder, which can affect the flow of blood, and therefore oxygen, to the brain. The most common causes of seizures starting in later life are cerebrovascular, which means changes or damage to the blood vessels around the brain.
Some people who have had a stroke may have one or more seizures. However, this does not necessarily happen, and in many cases seizures are not linked with strokes.
Your doctor or specialist may be able to tell you what has caused your epilepsy, although the cause cannot always be found. Finding out what type of seizures you have is useful for both you and your doctors. This is because decisions about treatment are partly based on the type of seizures someone has.
How is epilepsy treated?
Most people with epilepsy are prescribed anti-epileptic drugs (AEDs). The aim of AEDs is to prevent seizures from happening. AEDs do not stop seizures while they are happening, and they do not cure epilepsy.
Most people stop having seizures stop once they are a drug that suits them. However, for some people their seizures will not stop completely, so the aim is then to reduce their seizures as far as possible, while avoiding unwanted side effects.
Although your specialist may recommend you start taking medication, you can discuss the risks and benefits of taking, or not taking, medication with them.
Starting treatment
AEDs are normally started at a very low dose to allow your body to get used to them. The dose is gradually increased until it reaches a level that controls your seizures.
The dose at which an AED will control seizures varies from one person to another and will depend on the type of seizures you have and how your body responds to the drug.
Will my treatment work immediately?
For most people, the first AED they try will work well for them,once they are on the right dose. The aim is to stop your seizures without the AEDs having too much effect on your everyday life. This can sometimes be a difficult balance. It can take time to find the right AED at the right dose. It is often necessary to try different AEDs, or different combinations, to get the best seizure control.
What side effects might the drugs have?
Like all drugs, AEDs can cause side effects in some people, depending on their individual reaction to the drug and the dose they are taking. Many people do not have side effects because they are on the right dose of a drug that suits them. Possible side effects vary between different AEDs and from person to person.
Because AEDs work on the brain to prevent seizures, some may affect memory and your ability to think quickly. Some AEDs may make you feel sleepy, (which may also affect your memory). However, if your memory is affected by seizures, your memory may be improved by taking AEDs if they are controlling your seizures.
A list of possible side effects is included on the patient information leaflet (PIL) that comes with the medication. If you need a large print copy of a PIL you can ask your pharmacist.
If you have side effects with one AED, it does not necessarily mean that you will have side effects with other AEDs. If you are having side effects, your doctor may suggest adjusting the dose or trying a different AED.
The Yellow Card scheme (opens in a new window) is a way of reporting side effects. This helps to identify potential problems with a drug.
Are AEDs taken everyday?
To work best, AEDs need to be taken regularly. Some drugs are taken once a day and others are taken twice or three times a day, although the aim is to keep the routine of taking drugs as simple as possible. Some AEDs are in a slow-release form, called 'chrono' or 'retard'. In a slow-release form, the drug is released into your system gradually so that there is a steady level of the drug in your body. This means you take fewer doses per day of a slow-release drug, than a drug that is not slow-release.
Missing an occasional AED dose does not usually cause a seizure. But if AEDs are not taken at regular intervals the level in the body varies and you are more likely to have a seizure. AEDs are likely to work best if you follow the instructions on the label and ask your doctor if you have any concerns.
AEDs are not usually taken as an emergency treatment for seizures as they do not usually stop a seizure once it has started.
Will I need to take AEDs for life?
How long you will need to take AEDs varies from person to person. For some people their epilepsy stops of its own accord, but it may not be possible to say if this will happen for you. Because AEDs do not 'cure' epilepsy, if they are stopped, the seizures may come back. So many people do take AEDs for life to stop seizures happening and for peace of mind. You can talk to your doctor if you are concerned about this. If you have had no seizures for at least two or three years, it is worth discussing with your docotor the risks and benefits of gradually stopping your AEDs.
AEDs and other medication
Sometimes AEDs can affect other medication, and other medication can affect AEDs, so it is important to tell your specialist about all the medication you take. They can then see which AEDs will be best for you, to avoid the different medications affecting each other and how well they work.
What might help me take my medication?
Taking medication regularly can be easier if your treatment plan is easy to follow and fits into your lifestyle. For example, taking your AEDs at a regular time that links into your existing routine, such as with a regular early morning drink.
AEDs come in different forms, such as tablets that you swallow, tablets that can be crushed or mixed with water, granules that can be sprinkled onto food or in syrup form. You can ask your specialist or pharmacist about forms you would find easiest to take.
A pill box or drug wallet can help remind you which tablets to take and when. These usually have compartments for each day of the week, with sections for the morning, afternoon and evening. You can get drug wallets from NSE and from many pharmacies.
What happens if my AEDs don't work?
If your AEDs do not help control your seizures, your doctor may look at your diagnosis again to check that you do have epilepsy, and to find out as much as possible about your seizures. They may also ask you about any other medication you are on, as some medication may interfere with your AEDs.
Your doctor may also check that your treatment plan is easy to follow, and that it suits your lifestyle. They may ask you if you find it easy to remember to take your medication, and about other things that could affect your seizures, such as alcohol or lack of sleep.
Therapeutic drug monitoring (TDM) - measuring the level of AED in the blood - may be useful for some people whose seizures are not responding to treatment. The way drugs are broken down and absorbed by the body can change as we get older, and TDM may help to see if this is why seizures are still happening. TDM can also look at interactions between medications, and help work out the best dose to reduce side effects.
Who will be involved in managing my epilepsy?
Those involved in your epilepsy care may include a neurologist or geriatrician, who may have a special interest in epilepsy. Between appointments with your specialist, your GP is normally responsible for your prescriptions and for your general medical care. You can tell your GP if you have concerns about your epilepsy or its treatment. They may be able to help you with drug dose changes, or refer you back to your specialist if necessary.
Part of managing epilepsy includes looking at whether your epilepsy could affect, or be affected by, other conditions or medication for other conditions. For example, osteoporosis (where bones become fragile and are more likely to break) is common in later life, due to many factors. Epilepsy and taking AEDs may contribute to the risk of developing osteoporosis, but how much they contribute to this risk is not clear, and will vary from person to person. Osteoporosis can be diagnosed with a bone density scan, and can be treated.
You may see other medical professionals such as an epilepsy specialist nurse (ESN). ESNs can talk to you about your epilepsy, liaise with your specialist or GP, and answer any questions you have. Your specialist will know if there is an ESN working at your clinic.
Other professionals who can provide help or support may include a community nurse, an occupational therapist or a social worker.
Working with your doctors
GPs and specialists often encourage people to become more involved in their own healthcare. Doctors understand that you might have questions about your epilepsy, how it affects you and how it is treated.
By asking questions, you can understand more about your condition. This can help you make decisions about your health and your treatment options.
What are epilepsy reviews?
It is recommended that you have a review of your epilepsy every 6 or 12 months, with someone who has an expert knowledge of your epilepsy. This may be your GP or specialist. You can also ask for a review at any point if you would like one. Your review looks at how well your seizures are controlled by your AEDs, whether you are having any side effects, how you feel generally, and any concerns you may have.
Some pharmacies also offer a free Medicines Use Review to look at any concerns you have about your AEDs and any other medication you take.
Preparing for appointments
You may find it useful to make a list of what you want to talk about before you see any professional involved in your care. Appointments can be short, so it can help to focus on what is most important to you.
The following questions are just suggestions. Writing your own questions on a separate sheet means you can write the answers down as well.
To ask yourself before the appointment
To ask at the appointment (if necessary)
- How and when should I take this medication?
- How do I know this medication is helping?
- How long will I need to take it?
- Why do I still need to take it if I am seizure-free?
- What if I stopped taking it, or took a lower dose?
- Can I drink alcohol with this medicine?
- Can this medication affect my other medication?
- Will this medication affect me if I'm on it for a long time (many years)?
- What can help to remind me to take my medication?
- What should I do if I miss a dose, or take too much?
Reacting to a diagnosis
When diagnosed with epilepsy, you may have many emotions. The experience of epilepsy is different for everyone, and it may affect your life in various different ways, or not at all. You may feel shocked and angry, numb or disbelieving. You may remember a time when epilepsy was not as well managed as it is today. You may even feel relieved: what's been happening to you has a name and a treatment.
Coming to terms with epilepsy
Most people aim to carry on a normal life with epilepsy. However, some people find it hard to come to terms with a diagnosis. They may avoid doing the things they would normally do, in case they have a seizure. They may feel isolated or depressed if they feel life has changed since they developed epilepsy. Any of these feelings can affect self-confidence and quality of life. This may not be true for you, and your feelings about epilepsy may change over time.
The Expert Patients Programme (EPP CIC) (opens in a new window) runs free courses for anyone with a long term health condition. It may help you feel more in control of how epilepsy affects you.
If you are worried about seizures happening, it may help to think of ways in which you can adapt your lifestyle while still being able to do the things you would normally do. Many activities can be made safer by having someone with you who knows how to help if you have a seizure. Keeping mentally and physically active may help to make epilepsy just part of your life and not the most important part.
Driving and travel
Often the first impact of having seizures is that you have to stop driving. If your seizures are controlled and you are seizure-free for one year, you can apply to get a new driving licence. Until then, you may be able to get help with travel costs.
The Disabled Persons Railcard gives you, and someone travelling with you, up to a third off train fares. You can get information and an application form online (opens in a new window), from railway stations or by calling 0845 605 0525.
A National Bus Pass (opens in a new window), is free for people over 60, and for those who are unable to drive due to a condition such as epilepsy.
Financial help
Anyone over 60, and those under 60 with epilepsy, can get free NHS prescriptions. You may also be able to claim help with travel costs to hospital appointments (opens in a new window) as well as some disability benefits. This depends on what your epilepsy is like and how it affects you. If another person gives you care and support for at least 35 hours a week, they may also be able to claim benefits.
How might my family and friends react?
When you are diagnosed with epilepsy, the reaction of family and friends can vary. They may be concerned and want to offer support. Some people may not understand epilepsy, or may become overprotective.
Epilepsy in itself should not affect your ability to make your own decisions. It may help if your family and friends understand what your epilepsy is like for you, and how it affects your life. They may then more easily support you in making decisions.
Will I need more support or care?
Some people with epilepsy find that they need support or care from a partner or others around them. Whether you need support may depend on whether you are having seizures, and whether seizure or other medical conditions affect your independence or safety.
Support from others may include giving first aid, noting any trigger or pattern to your seizures, listening and emotional support, providing transport, household tasks, or helping you adapt your home or lifestyle.
You may also be aware that others who support you have their own health or social needs. They may feel isolated, tired, or under pressure. There is information and support available for anyone in a caring role.
Will I need to change my home environment?
The majority of older people with epilepsy live in their own homes, and many live on their own. For most people, having epilepsy does not mean they are less able to look after themselves, or that their living arrangements needs to change.
Depending on their situation, some people may choose somewhere with extra support, such as sheltered housing. In most cases, this is not likely to be just because they have developed epilepsy. Before making quick decisions about your home, it may be useful to give yourself time to see how your epilepsy will affect you in the long term, especially if your medication reduces your seizures or stops them completely.
Whatever your home situation, there may be support available or safety ideas that can help you live as independently as possible.
Epilepsy and safety at home
Some simple safety measures can make accidents and injuries less likely if you have a seizure. For example using a microwave or having a guard on your cooker hob so you can avoid touching hot surfaces; having a shower rather than a bath; and having a shower when someone else is around so they can help you if needed.
If you feel you need help or support at home, you can ask your local social services for a 'needs assessment'. This involves an occupational therapist visiting you at home to see what might help you, for example safety equipment. You can also ask your GP for help. They may be able to arrange for a community nurse to visit you or find out about other support or services in your community.
Safety alarms
Some people with epilepsy choose to have an alarm that is set off if they have a seizure. Some alarms work by pressing a button if you feel a seizure coming on. Others sound automatically if you fall with no warning. Some alarm systems go through to a call centre, while others alert someone you have identified, such as a family member or neighbour.
Medical jewellery
You may choose to wear or carry with you something that says you have epilepsy. This might be an 'I have epilepsy' ID card, or a medical bracelet or necklace. This means that if you have a seizure, people around you and medical staff will know that you have epilepsy. 'I have epilepsy' ID cards are available from NSE.
Epilepsy and leisure
Alcohol
The decision to drink alcohol is a personal choice. How alcohol affects someone with epilepsy depends on the individual, whether they are taking AEDs, and how much alcohol they drink. Alcohol can be a trigger for seizures for some people, particularly in the hangover period. Alcohol can also disrupt sleep patterns, which can make seizures more likely. It is often recommended that someone with epilepsy has no more than 1-2 units of alcohol a day.
If you take AEDs, the patient information leaflet that comes with your AEDs may say whether you can drink alcohol with that medication. Your doctor may also be able to advise you.
Gardening and DIY
Gardening or home improvements may be made safer by thinking about the type and frequency of your seizures, as well as the tools you may be using for each job, and the space you will be working in.
If you are in doubt about doing a job yourself, you may want to use a professional tradesman.
Computers, TV and cinema
Most people with epilepsy have no problems with using computers, watching TV, or going to the theatre or cinema. Photosensitive epilepsy, where seizures can be triggered by flashing lights or contrasting patterns, affects up to 5% of people with epilepsy. Photosensitive epilepsy is rare in later life, but it is usually tested, with your consent, during a routine EEG test.
Exercise and keeping active
Many activities can be made safer by taking simple safety measures. For example, cycling with a helmet can help prevent head injuries, and cycling with someone who knows about your epilepsy means that if you do have a seizure help is at hand. Swimming with a friend, and telling the lifeguards at the pool what your seizures are like, means they can see quickly if you have a seizure in the water.
Travel
Most people with epilepsy travel with no problems, especially if they are with someone who knows what to do if they have a seizure. Informing airlines or other travel representatives that you have epilepsy can be useful for them and for your peace of mind.
Other organisations
(opens in a new window). Working to improve the lives of older people.
NSE is grateful to Professor Raymond Tallis for his guidance on this information.
© The National Society for Epilepsy
Information produced in February 2010
