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 - 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.)
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: 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 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
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 20 comments or add yours
Comments
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
Hi, Last Saturday night I went to bed at 8.30pm as I had only had 2 hours sleep the night before following an all night Christmas party. I am 48 years of age. I also had terrible heartburn. I awoke approximately one hour later to two paramedics staring at me! My husband said he had heard 4 bangs and when he investigated, found me hanging off my bed (he thought I was choking). I went to A &E and my bloods and ECG were normal. I have been given an appointment at Neurology Outpatients for 10 Jan 17. I was told I had had a Grand Mal but I thought that if an adult had a seizure they should be seen sooner. I'm very scared. Did I just overdo it?
Thank you.
Susan
Hi Susan
Having a seizure can certainly be a very unsettling experience. It’s not surprising you’re feeling scared.
We all have a seizure threshold. Some people have a lower threshold than others. And there are things that can bring down your seizure threshold and so make a seizure more likely. Alcohol and lack of sleep can both do this. And here are some other possible triggers for seizures.
The more common term for a grand mal seizure is now a tonic-clonic seizure. Many people only ever have a single seizure in their lives. So this may be what had happened for you.
Although I’m sure January feels like a long way away, it would be unusual to be seen much sooner, particularly if you were seen by a neurologist in A&E. And there is an advantage to that passage of time. Epilepsy is usually defined as more than one seizure. So if you were to have another seizure before January that would make it more likely for you to be diagnosed with epilepsy.
The most important thing to bear in mind during this difficult waiting time is ways to keep yourself safe and as relaxed as possible.
Here’s all our information about safety. In particular do look at the guidance on having a bath and on swimming.
It’s quite natural to feel anxious during this time. But anything you can do to limit that anxiety will be really helpful for you. We have information on wellbeing which has some useful tips in it.
It is also important if you drive, that you stop driving and tell DVLA about your episode.
Hopefully you have also seen the various types of support we offer.
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
Hi my name's leanne
I have only just found this website tonight don't know why but I needed too funny how fate can bring you to what you need to cope with a condition such as epilepsy
I've had it ever since I can remember and even though my mum and dad are not my biological parents they knew but because they had waited so long for me the doctors called my mum a erotic mother trying to find fault in a child when there wasn't one but I'm sure you agree a mother knows very she gave birth to you or not she knows I think if I remember rightly I was nine or 10 months old when the sign started like the little convulsions that we're not classed as epilepsy until you were between four to 4 1/2 years old pence preschool illness my mum always drummed into me is not an illness is a bloody nuisance to you can imagine as a child going round telling everybody I've got epilepsy is not an illness is a bloody nuisance like you to do that when I started mainstream school I was victimised over it what it took my mum to teach me that I wasn't any different you only took the school one day to destroy all of that and she worked hard she was the best mum in the best dad I can't forget dad I have ever have we have to stand together and make it clear to the politicians that it should be part of the school curriculum like asthma and like diabetes and any other conditions that can affect a child's day-to-day life at school so they don't feel isolated they don't feel I am the only one who can I turn to when we can make a change change coming I hope my seizures used to be quite horrible it was so scary as I only had my wright eye the other eye all I could see was psychedelic colours end I could see people in little bubbles two or three or four nil circles bouncing around after I would lose sight in it when I was younger but as I got older I used to just get the headaches I wouldn't lose my eyesight which was a little easier to take but the last 14 possibly 15 years I have been clear because of the medication on 750 mg of the stuff oxer oxcarbamazepine is the name I hope some of you who is left messages on this site have been as lucky as I have medication wise
Hi there support. Can you tell me how I can print off my certificate for completing the epilepsy course. My Boss wants a copy to justify the funding. Great and informative course by the way. Many thanks, Andrew.
I wondered if someone could help. I have had epilepsy since I have been 18months old and I'm not 28. I have been on topamax for nearly 8 years I am taking 500mg am and pm. I have recently had a very long seizure that ended me in hospital. I have never been so scared in all my life. I don't know if anyone else feels the same I just feel every day like I'm not a normal person and hate the unexpected has anyone got any advice would love to hear from you All x
Hi. It must be really scary to have a long seizure that you need to go to hospital for. I’m not surprised it has knocked your confidence.
You are really welcome to talk to us on the Epilepsy Helpline freephone number, 0808 800 5050. And you might want to join our online community forum4e.
I wonder if the doctors have suggested any possible reason why this seizure might have happened? They may want to consider you taking an extra epilepsy medicine.
Many people find that even a breakthrough seizure can make you feel less confident for a good while. Hopefully as time passes, things will start to feel a little easier.
But talking to other people who know something of what you’re going through, is a really good idea.
Regards
Cherry
Epilepsy Action Helpline Team
my mother has epilepsy and recieves dla benefits can she claim motability as i have my passed my driving and my mother needs to get every with transport as she cant walk for to long.
Hi Farzana
Here is all the information about the Motability scheme. I have linked you to the page that says if you can join. It will depend on exactly which benefits your mother is getting.
You might also want to check if she can get a Blue Badge.
Regards
Cherry
Epilepsy Action Helpline Team
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