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Older people and epilepsy

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 (AEDs). Professionals involved in your epilepsy care may include a neurologist ( a doctor who specialises in conditions of the brain and nervous system) or a geriatrician (a doctor who specialises in the medical care of older people) 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). Having epilepsy means that you tend to have seizures that start in the brain.

We understand more about epilepsy these days than we used to. 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 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?' below). When we use the word ‘seizure' we mean an epileptic seizure.

See more about what epilepsy is.

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. The type of seizure someone has depends on which area of their brain is affected and what this part of the brain controls.

See more about different types of seizures.

Having a seizure

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. Find out more in our first aid section.

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 repeated seizures, so a single one-off seizure is not usually classed as epilepsy. However it is recommended that any single suspected 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 of the brain and nervous system), or a geriatrician (or 'care of the elderly physician' - 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. If you can't remember what happened, someone else who saw what happened may be able to give a description. This person could either come with you to the appointment or write down the description for you to take with you. It may be possible for the specialist to speak to the person on the phone during your appointment. See our guide to recording information about your seizure for diagnosis.

What will the specialist ask about?

  • How were you feeling before the seizure? Did you feel tired?  Had you eaten or drunk anything? Had you been unwell? Had you been stressed or worried about anything?
  • What happened during the seizure itself? Did you feel strange? Did you move in an unusual way? How long did the seizure last?
  • How did you feel afterwards? Were you confused? Did you feel tired? Did you have a headache or need to sleep?

If neither you nor anyone else can describe your seizures, 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) or 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 try to rule out causes other than epilepsy. They may ask you to have blood tests, an electrocardiogram (ECG), or other tests to check how your heart is working. If another condition is found at an early stage, this may help you and your doctors to manage it.

Why have I developed epilepsy now?

There are many possible causes of epilepsy but some causes are more common in later life. 

As we get older 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.

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, 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 have a full life with epilepsy. However, some people find it hard to come to terms with their 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 developing epilepsy. These feelings can affect self-confidence and quality of life. This may or may not be true for you, and your feelings about epilepsy may change over time.

Self management UK  runs free courses for anyone with a long term health condition. Courses cover issues such as relaxation and coping with tiredness, and may help you feel more in control of how epilepsy affects you.

If you are worried about seizures happening, there may be ways to 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.

See more about exercise and diet and nutrition.

See more about epilepsy and mood.

How might my family and friends react?

If 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. If your family and friends understand how your epilepsy affects your life, they may more easily support you in making decisions.

Taken from our Later life booklet. Order this booklet from our online shop as part of our 'first five free' offer, or download the pdf using the link below.