I’m well over 60 and just been told I have epilepsy. Why now?
One in every 4 people who are newly diagnosed with epilepsy is over the age of 65.
No cause is found for around half the people. But the other half may have had strokes or some other medical condition that puts them at a high risk of developing epilepsy.
What happens during a seizure?
Seizures come in many different types. In some, such as tonic-clonic seizures (convulsions), people lose consciousness and fall to the floor. Others, such as focal (partial) seizures can be difficult to recognise. This is because they are more likely to cause you to have things like confusion or memory problems. And some might cause you to have a strange taste or smell something that isn’t there.
People over 60 who develop epilepsy don’t usually have tonic-clonic seizures. They usually have focal seizures, which can be hard to recognise and take some time to diagnose. Occasionally, a focal seizure can turn in to a tonic-clonic seizure.
Sandra became very unwell, and it was unclear what was wrong with her. All her tests came back clear, but she was feeling dizzy and unsteady quite often. Eventually, she was seen in a falls clinic and diagnosed with epilepsy. This is what she said about getting the diagnosis:
“It was a shock being told I had epilepsy, but I was also relieved that it wasn’t a stroke or heart condition, which were two possibilities. And I knew there was treatment to stop the seizures. I was upset about losing my driving licence, but I’ve rediscovered public transport. It isn’t the quickest way to get to see my family, but I’m due to get my licence back soon, which is a relief.”
How is epilepsy treated?
Epilepsy is usually treated with epilepsy medicines. There’s a large range available. The right one for you will depend on your age, the types of seizure you have, and any other medical conditions you’re being treated for.
With the right dose of the right epilepsy medicine or medicines, around 7 or 8 out of every 10 people with epilepsy can get their seizures completely controlled. This means they no longer have seizures.
I’m worried about taking epilepsy medicines. How will they affect my other medicines?
Some people have interactions between their epilepsy medicines and treatments for their other conditions. And some people seem sensitive to side-effects from different medicines. But, as long as the doctor who prescribes your epilepsy medicines knows about everything else you are taking, the risk of these things happening is small. You could always double check your prescriptions with a pharmacist.
If you do feel you are having any side-effects, which could be related to your medicines, talk to your family doctor or pharmacist.
The important thing about taking epilepsy medicines is you need to take them every day, exactly as your doctor prescribes. It’s also important not to stop taking them without medical advice, as this could make you have more seizures
Some people find pill-box reminders useful. Alternatively, you could set up an alarm on your phone to remind you when your medicines are due.
Is it true that some epilepsy medicines can affect my bones?
It is true that taking some epilepsy medicines can cause your bones to become thinner. This puts you at risk of breaking bones, and is more likely if you are a woman over 70. Talk to your family doctor about this. They may be able to offer you some advice about keeping your bones as healthy as possible.
My memory is very poor. Is it because of my epilepsy?
Poor memory might be related to your epilepsy or side-effects from your epilepsy medicines. But there are lots of different reasons why you might be having memory problems, including other medical conditions and treatments. Epilepsy Action has information about epilepsy and memory problems.
Can I still drive with epilepsy? I can’t walk very far.
There are some driving regulations for when you have had seizures. These say that, once you have had a possible seizure, you need to stop driving and tell the DVLA or DVA. It’s likely that you will be able to re-apply for your driving licence once you have been free of seizures for one year.
Always talk to the driving agency if you are unsure whether you are allowed to drive.
Although it may seem hard, the driving agency won’t take into consideration whether you can walk. Their concerns are all about your safety and that of other people.
Will I have to make changes at work?
It really depends on the type of work you do, and the types of seizure you have. Some people will have to have some changes made to their work, but many won’t.
As a person with epilepsy you are likely to be protected by the disability section of the equality laws. And if you do need to have changes made, this is called reasonable adjustment under the equality laws.
In the UK, equality laws exist to protect you from unfair treatment (discrimination) because of your epilepsy. They protect you in different areas of life, such as when you are at work or when you are using services.
If you live in England, Scotland and Wales, you are likely to be covered by the Equality Act. If you live in Northern Ireland, you are likely to be covered by the Disability Discrimination Act.
In terms of being an older employee, you also have some protection from age discrimination by the equality laws.
I’ve had epilepsy all my life, but my seizures are happening more now. I’m still taking my epilepsy medicines. Is there anything I can do?
As we get older our bodies deal with medicines differently to when we were younger. Talk to the doctor who is caring for your epilepsy. They might be able to change your treatment, to get your seizures under control again. If you’re not currently seeing a doctor for your epilepsy, you could ask for a referral to one. You could also double check with a pharmacist to make sure that medicines you take to treat any other conditions you have are not affecting your epilepsy medicines.
Can I drink alcohol with my epilepsy tablets?
This is what we know about drinking alcohol when you have epilepsy:
- Alcohol can reduce the amount of some epilepsy medicines in your body. This can make you more likely to have seizures
- Alcohol can increase the side-effects of epilepsy medicines
- Some people say that drinking alcohol when they are taking epilepsy medicine makes them feel drunk quicker
- If you are, or have been alcohol dependent, it means you are likely to drink heavily at any time and for days at a time. There is a real risk of having seizures if you stop drinking suddenly after a long session of heavy drinking. There is the same risk if you have been alcohol dependent in the past.
Many people with epilepsy find that they can drink small amounts of alcohol without any problem. But you still need to take your epilepsy medicine.
I’m worried what people will think, if I tell them I have epilepsy?
It can be difficult deciding who to tell about your medical conditions. In days gone by, children with epilepsy often went to different schools to other children. And some people lived in residential homes throughout their lives. But it’s different now. This is because society’s attitudes to epilepsy and other health conditions have changed, alongside improved treatments.
Older people who do have seizures, tend to have focal seizures, which don’t make someone fall down. But other people don’t always know that and, hearing the word epilepsy, may worry about seeing someone fall down and convulse on the floor.
You may feel comfortable talking to people about your health, including your epilepsy. If you can do that in a very matter-of-fact way, you will be educating people at the same time. Tell them:
- What happens to you during a seizure
- What help, if any, you might need
- Whether you need any time to recover afterwards
It might give them the confidence to keep you safe, should you have a seizure when you are with them.
You could also show people information about first aid for seizures.
Can I still live by myself, or will I need to go into a home?
If you lived by yourself before you were diagnosed with epilepsy, there’s no reason why you have to move now. You might be worried about the risk of having more seizures. But if you’ve been given epilepsy medicine, you are probably less likely to have seizures than before you knew your diagnosis.
If you have developed epilepsy after a stroke, or because of some other condition affecting your brain, you might need some support to live at home. This support is likely to come from the people around you, and social services. See information and support and epilepsy and safety.
What about looking after my friend’s grandchildren?
Unless your ability to look after your friend’s grandchildren has changed since you were told you had epilepsy, looking after them should be the same as it was. You will still have to think about what you need to be able to do to look after them, and consider things like:
- How old they are
- What level of supervision and care they need
- What happens to you during a seizure
- How you would be affected by a seizure
- How they would be affected, should you have a seizure
- How long you would be looking after them for
- Where you would be looking after them
- Whether any other adults would be around, or easily contactable
You might find our tips for looking after a baby or young child when you have epilepsy interesting.
Joan was 70 when she was diagnosed with epilepsy. This is how she changed the things she did at the beginning of her epilepsy treatment.
“I had always taken my little granddaughter cycling down the road to the park. For a little while after starting to take my epilepsy medicines, I felt a bit wobbly. So, instead of both cycling, we walked to the park, or she used her scooter or roller boots. I’m back cycling with her now though.”
How about other sports and leisure activities?
With the right support and the relevant safety precautions, there is little that someone with epilepsy should need to avoid. Many people with epilepsy have their seizures completely controlled by epilepsy medicine and don’t need to take any greater safety precautions than anyone else. However, it is always a good idea to follow the rules and recommendations in terms of safety equipment.
Some people say that when they are active, they are less likely to have seizures. So, for some people with epilepsy, taking part in sport and leisure activities can really benefit their epilepsy. A very small number of people with epilepsy find that doing strenuous exercise increases their likelihood of having seizures.
There’s more information about different types of sports and leisure activities on our website.
Help and support
If you need help financially, there is some help and support that some people with epilepsy are entitled to. The help available will depend on how old you are, what your epilepsy is like, and how it affects you.
How we can help
You might want to talk to some other people with epilepsy. Epilepsy Action has an extensive network of branches and coffee and chat groups throughout the UK. These provide local support to people with epilepsy, their family and friends and carers.
Help from your local authority
Depending on your care or supervision need, you might be entitled to some help from social services.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Freephone Helpline on 0808 800 5050.
Epilepsy Action would like to thank Dr Aza Abdulla, Consultant Physician, Princess Royal University Hospital, Bromley Hospitals NHS Trust, London for his contribution to this information.
Dr Abdulla has no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated October 2016To be reviewed October 2019