A seizure diary is a good way of recording information about your epilepsy.
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What are seizures?
Electrical activity is happening in our brain all the time, as networks of tiny brain cells send messages to each other. These messages control all our thoughts, movements, senses, and body functions.
A seizure happens when there is a sudden, intense burst of electrical activity in the brain. This causes the messages between cells to get mixed up. The result is an epileptic seizure.
What happens during a seizure?
Seizures come in many different types. In some, such as tonic-clonic seizures (convulsions), you lose consciousness and fall to the floor. This is because there is electrical activity in both halves of your brain.
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.
Older people who develop epilepsy are more likely to have focal seizures than tonic-clonic seizures.
Occasionally, a focal seizure can turn in to a tonic-clonic seizure. This is when the electrical activity has spread to both halves of the brain.
Why have I developed epilepsy now?
You’re not alone being diagnosed with epilepsy later in life because it’s very common. In fact, one in every 4 people who are newly diagnosed with epilepsy is over the age of 65.
In around half of people, no cause can be found. Some people develop epilepsy because they have had a stroke or some other condition that affects their brain. Your doctor should be able to tell you whether there’s a known cause for your epilepsy.
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 wobbly 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?
The usual treatment is epilepsy medicines. For 5 in every 10 people with epilepsy, the first epilepsy medicine they try will stop their seizures.
But some people need to take 2 or more different epilepsy medicines. These are usually medicines that work in different ways but work well together.
The right epilepsy medicine for you will depend on your age, the types of seizure you have, and any other medicines you are taking.
Will my epilepsy medicines affect my other medicines?
Some epilepsy medicines affect treatments for other conditions. If the doctor who prescribes your epilepsy medicines knows about everything else you are taking, the risk of this happening is small. Your pharmacist can double check your prescriptions and any side-effects for you too.
Epilepsy medicines need to be taken every day, exactly as prescribed. It’s important not to stop taking them without medical advice, as this could make you have more seizures. Some people find pill-box reminders useful.
Or you could set an alarm on your phone to remind you when your medicines are due.
Is it true that epilepsy medicines can affect my bones?
Some people who take epilepsy medicines are at risk of decreased bone mineral density. This condition is called osteoporosis.
It’s a condition that can weaken bones, making them fragile and more likely to break. It can happen over a length of time. Your GP 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?
There are several reasons why you could have memory problems, including:
- Developing epilepsy following a stroke or other serious medical condition which itself can also affect memory, learning and understanding
- Having had poorly controlled or long seizures from a young age
- As a possible side-effect from your epilepsy medicines
- Having another medical condition, or taking medicines for other conditions
If you have concerns about your memory, talk to your GP, epilepsy nurse or epilepsy specialist.
Can I still drive with epilepsy?
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 driving agency. 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.
Will I have to make any changes at work?
Whether you will need to make changes at work depends on the type of work you do, and the type of seizures you have. Some people will have to change some of the work they do, but many won’t.
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.
As a person with epilepsy you are likely to be protected by the disability section of the equality laws. And if you need to have changes made, this is called reasonable adjustment under the equality laws.
In terms of being an older employee, you also have some protection from age discrimination by the equality laws.
If you need some time off work, you might be eligible for certain benefits. If you have problems getting to work, you might be eligible for Access to Work.
Can I still drink alcohol?
Drinking small or modest amounts of alcohol is unlikely to make you have more seizures. But moderate to heavy drinking over a short space of time can make you more likely to have a seizure. These are most likely between 6 and 48 hours after you have stopped drinking.
You still need to take your epilepsy medicine even if you drink alcohol. If you don’t, you are more likely to have a seizure.
I’m worried what people will think if I tell them I have epilepsy
It can be difficult deciding who to tell about your epilepsy. Older people who have seizures, tend to have focal seizures, which don’t make them fall down. But other people don’t always know that and, hearing the word epilepsy might worry them.
But if you tell them about what happens to you, you will be educating them 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 could give them the confidence to keep you safe, if you have a seizure when you are with them.
You could also show people information about first aid for seizures.
Support for you
Take a look at how Epilepsy Action can support you
How can I keep myself safe?
A safety check helps you decide whether something is safe for you, or not. It considers your epilepsy and any other medical conditions you have. If there are risks, it helps you work out what could be done to make an activity safe enough for you to do. It doesn’t need to be complicated.
All you need to do is:
- Think about your seizures – what happens, how often they happen, are there any specific triggers?
- Keep a seizure diary or download an app to your phone or other device. This can help you see if you have a pattern to your seizures or anything that triggers them. Knowing about triggers and patterns can give you some useful information about how to make an activity safe for you
- Think about what the risks would be if you had a seizure
- Make a plan to do things that reduce those risks
Can I still live independently?
If you lived by yourself before you were diagnosed with epilepsy, there’s no reason why you shouldn’t do now. You might be worried about having more seizures. But if you’re taking epilepsy medicine, you’re less likely to have seizures than before.
If your epilepsy started after a stroke, or 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 young children?
You will need to think about things like:
- How old they are
- How much care and supervision they need
- What happens to you during a seizure
- How you would be affected by a seizure
- How they would be affected, if you had 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 useful.
Joan was 70 when she had her first seizures. This is how she changed the things she did until her seizures were controlled.
“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 safety precautions, there’s little that you should need to avoid. Some people say that when they are active, they are less likely to have seizures.
So, for some people, taking part in sport and leisure activities can really benefit their epilepsy.
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 Epilepsy Action can help
You might want to talk to some other people with epilepsy. Epilepsy Action has an extensive network of support groups throughout the UK. These provide local support to people with epilepsy, their family and friends and carers.
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