If you would like to talk to someone about epilepsy, our trained advisers are here to help. We offer confidential and personal advice and you can tell us as much or as little as you want. No question is a silly question.
Contact our advisers
Epilepsy Action Helpline call 0808 800 5050
We're now open longer:
- Monday to Thursday 8.30am-8.00pm
- Friday 8.30am-4.30pm
- Saturday 10.00am-4.00pm
It’s free to call from all UK landlines and mobiles. (International calls are not free.)
Helpline advice in 150 languages - the Epilepsy Action Helpline offers advice and information in 150 languages.
Email helpline@epilepsy.org.uk - email your question about epilepsy. We aim to reply within 48 hours (on work days).
UK text messages: 0747 963 8071 - we aim to reply to your texts within 24 hours (on work days).
Tweet @epilepsyaction with your question and we will tweet back (on work days). You can also get in touch with us on Facebook and Instagram.
Leaflets, booklets and learning resources
Epilepsy Action shop - we have a wide range of books, booklets and factsheets about epilepsy. Please take a look at what we have available.
Epilepsy and you – our online course gives you the skills and confidence to manage your epilepsy.
Epilepsy Action Learning - has a range of online courses and learning resources to help you understand more about epilepsy. You can work at your own pace and at a time that suits you.
- For people with epilepsy - learn how to manage your condition and improve your wellbeing
- Epilepsy first aid - what to do when someone has a seizure
- For school staff - learn how to support pupils with epilepsy and meet statutory guidance
- For care and support staff - learn how to care for and support people with epilepsy, including risk management and care planning
Epilepsy Awareness training - we deliver training to UK-based groups who want to learn more about epilepsy. These include private employers, healthcare and service providers, colleges and schools.
Contact others living with epilepsy
Our virtual groups are a great way of connecting with others who have experiences of epilepsy, in a safe and relaxed environment. Our virtual groups are open to anyone living with epilepsy in the UK who is over 18 years old. You might be living with epilepsy yourself, or you might be a parent or carer of someone living with epilepsy.
Coffee and chat groups - these give people living with epilepsy the chance to meet each other in ordinary venues like cafes, tea rooms and coffee shops. They offer a relaxed way to meet new people, share experiences and get information on how to learn more about epilepsy.
Local branches – run by volunteers, most local branches hold regular meetings offering a mixture of social events, informative talks and discussions.
forum4e is a free online community for people with epilepsy and carers of people with epilepsy
Epilepsy Action has a very active Facebook page
Comments: read the 9 comments or add yours
Comments
Hi my name is Roseanna I am 46. My struggle is that I cannot get over tired or stress out !!! Plus will i be ever seizure free. I have no other contact with support for Epilepsy. When I was 21 my life was turn upside down. I was at my keep fit class half way thorough it I took a very bad seizure. I had to get stitches etc. From their on my seizures range from bad ones to small ones. Between been in hospital plus had broke my front teeth a few times. But my biggest thing to accept at that time was the driving !!! But as years went on I gradually accept it better. I was very depressed at certain stages. It took along time until they got the right tablets etc. I now am takingTopmax Lamictal and Tegtretol. Another thing that annoys me is that my mood varies plus my memory is not great. Also feel people out their don't want to know me with my condition particularly when your a female. But on the other hand I don't let it beat me just keep going. Disgraced have been refuse a bus pass twice!! The public especially employers should be more aware of epilepsy and what to do! I would like to say it's not an illness it's a condition don't let it beat us.🤗🤗
Hi Roseanna.
It does sound like you’ve had quite a difficult journey. We quite agree that epilepsy needs to be understood as a condition rather than an illness. Epilepsy Action works hard to raise awareness in a whole variety of ways, but there is certainly still a way to go. Maybe you’d like to think about getting involved as a volunteer?
I do hope from our helpline page you have been able to find a way of connecting with other people with epilepsy. Many people find this really useful. If there isn’t a coffee and chat group in your area, then maybe our online community forum4e would work for you. Or our online self-management course Epilepsy and You might be worth taking a look at.
Also we have information on stress, low mood and wellbeing that might also be helpful.
Lamictal and Tegretol are a bit of an unusual combination but hopefully they are working for you. If you are still having seizures then you might want to talk about other options of epilepsy medicines although it sounds like you may have been through quite a few already or for some people surgery or vagus nerve stimulation might be possible.
If you’ve had seizures in the last 12 months then you would be refused a driving licence. Because of this you would be entitled to a free bus pass.
I do hope this information will be useful for you. But If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.
Regards
Cherry
Epilepsy Action Helpline Team
Focal Aware Seizures starting in parietal lobe.
For the past two years I have been having monthly very mild seizures. Each one lasts about 30 seconds and I can have up to 20 over a period of between 24 and 36 hours. Medication seems to make little or no improvement and my neurologist gave me the choice of continuing to try various medicines or just living with it.
For the time being, I am living with it.
During the turns, I am always conscience and aware of my surroundings. My memory suffers during and after each one for an hour or so.
My neurologist does not understand why they come monthly.
I am male, 71 years old, non smoker, no excess weight, low blood pressure and cholesterol is about normal. I walk everyday between one and two miles.
I take no other regular medications.
I am aware that this is just a mild epilepsy but I would like to try and find out why they are monthly and of course find a cure if at all possible.
Hi James
I’m afraid we don’t have an answer as to why your seizures happen every month.
It is not unusual for people to have a particular pattern to their seizures. It seems that yours is a monthly one.
The most reliable way for controlling seizures is with epilepsy medicine. We are a long way from there being a cure for them yet.
I do hope the situation continues to be manageable for you.
Regards
Cherry
Epilepsy Action Helpline Team
Epilepsy and benefits, claiming ESA... Work capability assessments.. Is epilepsy a condition that makes you unfit for work..
Hi Carl, no epilepsy doesn’t make you unfit for work but it might have an impact on whether someone can work or the amount or type of work they can do. We have some information about work and epilepsy (https://www.epilepsy.org.uk/info/employment) here. This might be helpful to read to see the kind of help that could be available if you work or are looking for work.
We have some benefits information that you might like to read (https://www.epilepsy.org.uk/info/daily-life/benefits). We are not trained as benefits advisers so recommend you get advice and help. There is a link to finding a benefits adviser in your area on the webpage.
Just a final thought, we have some information about when epilepsy might be considered a disability. (https://www.epilepsy.org.uk/info/your-rights/equality). But being classed as disabled under the equality laws, is not the same as being classed as unfit for work for benefit reasons.
I hope this helps to make things a little clearer. If you have any questions or think you would like more advice you would be welcome to contact the Epilepsy Action Helpline (https://www.epilepsy.org.uk/info/support/helpline) either by email or by phone (freephone 0808 800 5050). We are open 8.30 – 8pm Monday to Thursday, 8.30am to 4.30pm Friday and 10am – 4pm Saturday.
Regards
Mags
Epilepsy Action Helpline Team
Which sort of seizure do we write for someone who suddenly hugs in a desperate state then cry’s becomes sweaty and grey in colour eyes are blank then becomes giddy. He is my son who is 25 years old also has a severe learning disability. He is on 25mls of Epilepsy and 75mgs of Lamotrigine.
Hi Karen – It could be worth checking this with your son’s epilepsy doctor. In case its helpful I’m linking you to our information about different types of seizures. This explains what someone might experience before and after a seizure as well as during a seizure. I hope you can find an answer to your question.
Regards
Mags
Epilepsy Action Helpline Team.
I've been having what feels like a focal aware seizure for the past hour. These only happen in the early part of the year march to april but had one in jan this year. Its like my mind disappears to somewhere for abit then comes back. not sure what to do . I've been tested twice and negative both times mri and electrodes cant think what its called at the moment. please dont reply on my work email. feel like i'm going in and out of another world then i come bqack and feel faintly sick