We exist to improve the lives
of everyone affected by epilepsy

Need information, advice, support or training?

If you would like to talk to someone about epilepsy, our trained advisers are here to help. We offer confidential, personal advice and you can tell us as much or as little as you want. No question is a silly question.

Contact our advisers

Ring us Epilepsy Action Helpline call 0808 800 5050 - it’s free to call from all UK landlines and mobiles. We are open from 8.30am to 5.30pm Monday to Friday. (International calls are not free.)

Ring us Helpline advice in 150 languages - the Epilepsy Action Helpline offers advice and information in 150 languages.

Email us Email helpline@epilepsy.org.uk - email your question about epilepsy. We aim to reply within 48 hours (on work days).

UK text messages: 0753 741 0044 - we aim to reply to your texts within 24 hours (on work days).

Tweet @epilepsyadvice with your question and we will tweet back (on work days).

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 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.

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

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 12 comments or add yours

Comments

hi i got diagnosed with epilepsy a year ago an its been real scary its making me loose control of my bladder even wen im not having a sezuire can this happen

Submitted by emma on

Hi Emma

Thank you for your question.

Loss of bladder control generally happens during a seizure when the muscle tone is affected.

Some epilepsy medicines, as a side-effect, can affect the bladder. You may wish to check if this may be possible with your medicine. You can either look at the patient information sheet, talk to your chemist or contact our helpline team with the name of your medicine. You can either email helpline@epilepsy.org.uk or freephone helpline 0808 800 5050.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane-Epilepsy ... on

I have tried several drugs over the last 15 year's. But have had serious side effects.I am on a new pill I have every side effect. I feel I'll and everyday now have seizures. Today had nasty injuries. Its getting me down. My teenage son lives with me it's getting to much for us both. Not sure what to do.

Submitted by Lynn Cowley on

I was on dla and recently had to apply for pip. I had an assessment in my home as I rarely go out as my seizures are uncontrolled sometimes without warning. Itsgrand mal I have .i often am bruised and injured my son often cooks and cleans for me as I am often sleepy and confused afterwards. Is there any reason they should have refused me? I have other illnesses too. At my wits end, haven't been out in 10 weeks. I never go out alone.

Submitted by paula murphy on

I have been redundancy since end of April . I have my reason to leave for redundancy. My mum's passed away in 2004 and I have no pets since 2013. My dog Randy had to put to sleep. Randy got cancer but he's never get better . I was too upset after I put Randy to sleep. After Randy's gone, it was so quite. I am alone in my own home. I love to visitors in London in each month for opera. I stay up to 2 nights. I'm not interested for another job. I have been to keep in touch about my pension. I won't be retired till 2032. I have so many books to read but I am to become a writer. Well, who know? I am not joker!!

Submitted by Joseph Maguire on

Hi Joseph
It sounds as though you have had a challenging few years. It is great to hear you have ambitions of becoming a writer. Good luck with your writing.

If you enjoy meeting other people, you may be interested in going to one of our local events. You may also be interested in joining our online community forum4e, which is a great place to connect with other people who have epilepsy.

If we can be of any more help, please feel free to get in touch with us

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Please please please can someone help me I am desperate ? I'm going to explode .in August 2014 my 15 year old daughter was diagnosed with epilepsy .While being on medaction she's had three eegs ,the results have come back clear . Her consultant ask us to video the seizures to which we have , the seizures are not as severe as what they were because she is on 550 mg of topiramate a day .once I showed the consultant the video clips her reply was great news it does not look like epilepsy but wouldn't tell me what she thought it was as she didn't want to lead me down the wrong road .I was then asked to try to forward the video clips to the epilepsy nurse so the consultant could show a colleague of hers .once that was done we were going to be told what they thought it is .My daughter has been having two different types of seizures ,one where she stares into space and don't respond to you ,one where her whole body shakes ,lips turn blue ,saliva coming from her mouth ,her body shakes for a few minutes but it takes her 45/50 minutes to come around to understand who you are while being sick . like I said further on up the seizure are not that severe now but she is still having them ,at night , in the day while at school , anytime of the day .We have had meeting at school to see if they could help us by informing us when ,what has happened by writing all the information in my daughters school planner to which has not happened .There is a first aider at the school who seems to think that sending my daughter out side to get a bit of fresh air ,or to tell my daughter to get something to eat/drink when she's not feeling well . if my daughter has had a space out seizure at school the first aider asks what has brought this on you were OK a minute ago , may be its because you are hot ? may be its because you are cold, may be its your period . she is making my daughter feel like she is faking the seizures . My daughter is already being treated for depression ,also being given medication for sleeping . today while my daughter was at school in an exam she had a shaking seizure on a chair to which she nearly fell off which lasted 10 minutes , an ambulance was not called , I then had a phone call saying that my daughter has had a funny turn , it wasn't until I took my daughter home that I found out off her what actually happened . we feel that the hospital and school are not listening or helping us in any way and we do not know where to turn anymore please please please HELP US

Submitted by Diane Mountford on

Dear Diane
That sounds like a really upsetting situation. You don’t mention exactly what the hospital has said to you. So I am guessing from your information that your daughter has been diagnosed the dissociative seizures. These are also called non-epileptic seizures. I have linked you to our information on this. But for much more in depth information I suggest you follow the link to the non-epileptic attack disorder website.

If I am right about the diagnosis, it sounds like this information would also be valuable for the school. I’m afraid this type of seizure is very poorly understood by many people.

If I have misunderstood and you need different information then do feel free to get back to us.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

I have a daughter with seizures and she has the flu what can i give her

Submitted by Norma Ramos on

Hello Norma
Most cold remedies are OK. Check the patient information on the box or patient information sheet inside the box. You could also check with your chemist if you are concerned.

I hope she feels better soon.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

I am having episodes where my head hurts spins abd disorentation .numbness to the face and periods of being semi conscious and unable to move is this a fit of any kind

Submitted by Helen on

Hi Helen

I don’t know if this is a fit or not. But I would strongly suggest talking to your doctor about it.

I hope you get some answers soon.

 

Regards

 

Cherry  

Epilepsy Action Helpline Team

 

Submitted by Todd at Epileps... on