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.
Get in touch
Epilepsy Action Helpline call 0808 800 5050, (international: +44 113 210 8800) UK calls are free and we're open from 8.30am to 5.30pm Monday to Friday. Read more.
Email helpline@epilepsy.org.uk
Email us your question about epilepsy. We aim to reply within 48 hours (on work days).
Other ways to get in touch
UK text messages: 0753 741 0044
We aim to reply to your texts within 24 hours (on work days).
Helpline advice in 150 languages: The Epilepsy Action Helpline offers advice and information in 150 languages.
Epilepsy Action has a very active Facebook page
Tweet @epilepsyadvice with your question and we will tweet back (on work days).
forum4e is a free online community for people with epilepsy and carers of people with epilepsy
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Coffee and chat groups
We have coffee and chat groups all across England, Northern Ireland and Wales. They offer a warm welcome to people living with epilepsy and the opportunity to meet in a relaxed environment.
Local Branches
Run by volunteers, most local branches hold regular meetings offering a mixture of social events, informative talks and discussions.
Epilepsy Action Learning
Epilepsy Action Learning has a range of online course and learning resources to help you understand more about epilepsy. You can work at your own pace and at a time that suits you.
Comments: read the 20 comments or add yours
Comments
I HAVE GOT GRAND MALL EPILEPSY AND I WOULD LIKE TO KNOW IF THERE IS ANY OPERATION FOR IT THOUGH IAM A 48 YEARS OLD WOMAN AND IF THERE IS ANYTHING YOU CAN DO FOR ME PLEASE YOURS FAITHFULLY MRS ADEBIMPE ADEFUNKE METCALFE
Hi Adebimpe
Surgery is an option for a small number of people with epilepsy. Doctors will usually only consider it if you’ve tried a number of different medicines but are still having seizures. It’s not suitable for everyone or for all types of epilepsy. You might like to read through our information on the different types of surgery for epilepsy. Then if you think it’s an option for you, you could talk to your doctor about it at your next appointment.
Living with epilepsy can be really hard, but you might find it helps to talk to other people with epilepsy. You could login to our online forum for people with epilepsy, Forum4e. Or you could join one of our local coffee and chat support groups.
Grace
Epilepsy Action Advice and Information Team
Hi my bother is 39yr old he has grand-mall seizures and has for the last 9yrs he has been claiming dla but it ran out he didn't return it in time and had to claim pip he got refused and told he's got 1 point for epilepsy and 1 for depression how can this be ? Six months ago he lost his sick money also he gained no points and was told to claim jsa he didn't obviously and managed to get bk on sickness 3 month later but meanwhile he got evicted and the stress is tremendous he is very depressed now and still only receiving 56 pads a week what can he do please help
Hi Julie
It sounds like your brother is in a difficult situation.
It would be advisable to talk to your brother’s local Citizens Advice. They are able to offer advice on benefits and housing issues.
http://www.adviceguide.org.uk
Some people with epilepsy will be entitled to benefits so you may wish to view our information on benefits and epilepsy. https://www.epilepsy.org.uk/info/benefits
We have specific advice on the Personal Independent Payment and epilepsy.
https://www.epilepsy.org.uk/info/help-support/personal-independence-payments-pip.
You or your brother are welcome to download any of our information to take to the Citizens Advice.
I hope things work out for your brother.
Regards
Diane Wallace
Epilepsy Action Advice and Information Team
Hi
Has anyone else had a similar problem
the fear of having a work based seizure and your employer finds out you have epilepsy that they will let you go /dismissed.
Hi Paul
Many thanks for your message. Some people do tell us that this is a worry for them.
Deciding whether to tell people in the workplace about your epilepsy can be a tough decision. You do not have to tell you employer about your epilepsy, as long as you don’t believe it will affect your ability to do your job safely and effectively.
It is worth noting that if you don’t tell your employer about your epilepsy, and it does affect your ability to do your job safely, your employer may be able to dismiss you.
If you are employed and have epilepsy, you are protected by equality laws. These equality laws mean employers must not treat you unfairly because of your epilepsy. Employers must also consider making reasonable adjustments within the workplace to support you to do your job.
It may be worth you looking at our online community Forum4e. You may find people on here who have been in a similar situation to you, or who have similar concerns.
If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.
Karen
Epilepsy Action Advice and Information Team
Hello There,
I'm Kavya, mother of a 5 year old epileptic boy. Came from USA some time ago.
We are currently in London UK and his medication is about to finish trying to get a refill but my GP said the amount of medication is too much so they need doctor's letter to give the prescription here.
I tried contacting my son's pediatric neurologist but he is out on vacation so unable to get the letter from him.
My problem is I'm having really small quantity of medicine and requesting for medication since last week but couldn't get it.
I went to get it without prescription but the medication is too expensive for me. Need suggestion how to get the medication here if I do not have any letter from old doctor. Here is pic of my son's medication for your information..
I Will appreciate Any kind of help and suggestion .
Hi Kavya
I am not entirely sure what your situation is. Are you talking about a paediatrician in the UK or the USA?
If you are talking about someone in the USA my suggestion would be contact NHS Choices on 111 who may be able to help you with your problem.
And I strongly suggest getting your son into the NHS system as soon as possible then you won’t have this problem in future.
And if the doctor thinks the amount is too high, this is another reason it would be really good to be able to see an epilepsy specialist who could then sort and authorised prescription a for you.
If I have misunderstood and you are not entitled to access the NHS, then I would guess you have health insurance to cover your son’s condition.
If your son is already within the NHS and it is a UK paediatrician who is on holiday, then there will be someone else who is covering their work. You would need to contact this person to authorise a prescription.
I hope this goes some way to answering your question. 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.
Cherry
Epilepsy Action Advice and Information Team
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
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
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.
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.
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!!
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
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
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
I have a daughter with seizures and she has the flu what can i give her
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
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
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