We fight to improve the lives
of everyone affected by epilepsy

Being diagnosed with epilepsy when you’re over 60

What is epilepsy?

If you have epilepsy, it means you have a tendency to have epileptic seizures.

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.

If you are not allowed to drive because of your epilepsy, you may be entitled to free bus travel (in England, Scotland and Wales) or half price bus travel (in Northern Ireland)

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

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 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. You could also join our on-line forum for people with epilepsy.

Help from your local authority

Depending on your care or supervision needs, you might be entitled to some help with looking after people.

Useful information

The NHS website
Website: nhs.uk

Carers UK
Website: carersuk.org

Useful organisations

Age UK
Website: ageuk.org.uk

Independent Age
Website: independentage.org

 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.

Code: 
F152.05

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated July 2020
    To be reviewed July 2023

Comments: read the 6 comments or add yours

Comments

I have epilepsy and have since the 80s when I had a brain virus, which left me with it. It destroyed my marriage, ive not seen my daughter in 38plus years.
Ive had all my benefits taken off me one by one, even tho I went the first 22 years without DLA. Ive recently considered suicide as im being made to look for a job, nothing is done face to face anymore and all applications come back as not suitable, I cant even get a job sweeping the streets, and currently live off £38 a fortnight, minus 10 council tax, you do the maths.
robert day nr 63. dunstable beds

Submitted by robert on

Hi Robert

It really sounds like things have been tough for you for a long time.

On a practical level if you have had seizures in the last 12 months then you would be entitled to free prescriptions and a free bus pass.

And if you haven’t already done so, it might be worth talking to a welfare rights unit such as Citizens Advice. They could check whether you’re getting all the benefits you would be entitled to.

More importantly, It would be worth talking to your family doctor about how you’re feeling.  And if you feel you need to speak to someone in the middle of the night, then do remember that Samaritans is open 24 hours a day. Their helpline number is freephone 116 123.

Meanwhile you could have a look at our information on epilepsy and depression.

I do hope this information is useful and that things start to improve for you soon.

Regards

Mags

Epilepsy Action Helpline Team

Submitted by rich on

Hello.

Ive had epilepsy since i was 7 ( probably because of a surgery when i was born, had a bleeding because the doctor cut me .. still havnt figured that part... ) I stopped using the drugs when i turned 12ish.. i was epilepsy free for around 3-4 years without drugs, it was 2009 when i had a epi attack again and i continued using drugs. After 5 years without a seizure i had some problems with my teeth and for some stupid reason i didnt take my pills 2 days in a row and i've got a grand mal... Thats when it started... I've reached partcial epilepsy .. Happend a few times without me even knowing it.. my girlfriend figured out that i talk random stuff which i was unaware, and then it hit me, i figured out that i have a so called partcial epilepsy. The grand mals stopped but the annoying partcial continued from 2015 to 2018 the doctors described me more and more pills but they never tested anything. They say what is my condition without checking anything further in, they only ask me questions and from these answers of mine they tell me what is wrong with my brain.. No testing no anything? However i am mad at the doctors because i have no solution to cure my epilepsy. They increased my pills to 750g ( 2 tegretol and lywam 750g each) After 6 months after they increased it NOTHING helped my particial epilepsy ( because i would activate the attack with my toughts, i was scared... so a panic attack led to a seizure).

So after some depressing days and troubles with breathing and psycho stuff ive found a solution by my self. I went to a gym, i cut off sugar and i am eating clean, like a bodybuilder. The only problem i have is that i still use these drugs, when i said to my neuro doctor that i've changed my diet and all he says ITS BECAUSE OF THE DRUG INCREASE from 500mg to 750mg.. But its been over half a year and i didn't feel anything ! and only after 2 weeks of diet change and gym i FELT that im better.

So i have a few questions for you guys. (keep in mind i wont stop my drugs by my own, i will always listen to the doctor no matter what advice you give me)

* Can i heal my damaged brain anyhow ? *
* Can i know which side of my brain is damaged ?*
* How to know where did the doctor cut me on birth?, since i dont know anything about that and these is no scar, im the only one in the family with epilepsy it must be the cut..*
*Can amino taurine or any other food, diet help me and how?*
*Also can you recommend me any brain check, doctor or whatever in europe, i had a brain picture which says my brain is healthy but the EEG is not that the doctor said - is there any other testing beside that EEG?*

Thanks for reading
best regards

Submitted by Tomi on

Hi Tomi

It’s great that you’re feeling so much better. We’re not medically trained. My best guess is that the reason you’re feeling better is possibly a combination of your epilepsy medicine and the way you’re looking after yourself now.

Stress can certainly be a seizure trigger. I’ve linked you to the rest of our information about possible seizure triggers.

  • The only way to heal a damaged brain is with brain surgery. This is suitable for some but not all people with epilepsy.
  • If there is damage to your brain it would normally be visible on a CT or MRI scan. And if this damage is causing seizures, sometimes it’s also possible to see this on an EEG.
  • Trying to find out what happened to you at birth may not be easy. The best place to start is to ask your GP whether your notes go back that far.
  • I don’t know anything about taurine. But I would strongly advise you to check with your epilepsy doctor or at least a pharmacist before deciding whether to take this. It may not interact well with your epilepsy medicine. Anecdotally some people with epilepsy say that they feel better for removing caffeine and related drinks from their diet.
  • The EEG and MRI are the standard tests connected with epilepsy. Sometimes a more detailed, longer EEG can give more information. We have general information about consultants in the UK but not the rest of Europe.

I hope there is something here you find useful.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry - Epilep... on

I suffered from severe soreness in my right knee and swollen joints which eventually developed into such a painful condition, I could not lift my leg or put weight on it to walk. After trying several treatments, I finally went to a care clinic where x-rays showed advanced Arthritis/OA. My condition worsened with severe pains and stiffness, so a friend introduced me to Herbal Health Point (ww w. herbalhealthpoint. c om) and their Arthritis Formula treatment protocol, I immediately started on the treatment, few weeks into the treatment the pain and stifness were completely gone and I had regained complete use of my leg. The treatment totally reversed my Arthritis condition, since I completed the treatment 11 months ago I have not had any symptom or pain

Submitted by keitacosgrove on

I'm 69 and have had epilepsy since I was approx 4 years old. When I was about to go to Secondary School my parents were told I was unable to do so and I would have to go to special school but they argued and finally I went to a normal school where I did fine although leaving at the age of 15 and being told by the lady who's suppose to help us get jobs that I didn't need a job and could stay at home and be paid to do so! After crying I became so angry that I was determined to find a job no matter what it was and if took 1000 or more vacancy forms to be filled in I would do so. I was very lucky and found a job in a Finance Company copy typing where I was determined not to be as good as any of the other employees but better as I was certain if there was somebody who was going to be made redundant it would be me. The one thing I did do is tell my employer that I was Epileptic as I didn't want anybody to be scared as and when I has a seizure (which was anything from 1-10 a week). After working for approx a year the copy typing was going as a Computer was being put in but I was kept on as I had proved that I could work as well as any normal person and I continued to work there for 17 years the system being updated several times.
My seizures continued and have never got any better, I have burnt myself by falling under a hot top so was in hospital for 4 weeks followed by a nurse coming in on a daily basis for another 5 weeks and my face and has neck had scars, woke up in hospital and had lost 6 weeks of my life and still don't know what happened, burnt 2 fingers and had to have rings cut off and hospital care followed by nurse, but I'm still determined it won't beat me, I will work and have as near to a normal life as I can continually saying Epilepsy is not going to beat me as I'm fighting back no matter what.
Therefore think positive and never give in as together we can show everyone that we can work the same as they can. We can't drive but now we can all say Think Climate Change.

Submitted by Denise on

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