Epilepsy nurses can spend time with you discussing your epilepsy, your treatment and any problems you may have that are related to your epilepsy. They may be able to talk to you over the telephone or visit you at home.
You may have already seen a specialist epilepsy nurse. If not, your family doctor, epilepsy specialist or Epilepsy Action can tell you if there is one you can get in touch with.
Coming to terms with epilepsy
Being diagnosed with epilepsy at any time in life can come as a shock. Some people find it difficult to come to terms with, and there can be all sorts of reasons for this. If you are an older person, you may remember how people with epilepsy were treated years ago, when there was a lot of stigma associated with epilepsy.
The good news is that over the years, many things have changed. There are many more anti-epileptic drugs available, which are more effective at controlling seizures and have fewer side-effects. Doctors’ knowledge about epilepsy and how to treat it is increasing all the time.
General attitudes towards people with epilepsy have definitely changed for the better. You may still come across misunderstanding about epilepsy, but there is no doubt that public attitudes to epilepsy are changing – for the better – all the time.
Some people find that talking to other people with epilepsy can help them. This could be with other people with epilepsy at an Epilepsy Action local branch meeting. Or, it could be on Epilepsy Action’s on-line community, forum4e, where people with epilepsy from all over the world can meet.
We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
This information has been produced under the terms of The Information Standard.
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Updated January 2011To be reviewed January 2013
Comments: read the 2 comments or add yours
Comments
what a load of rubish i was told in april 2011 I am epileptic Im 36years old and that da I was told it was a case of this is what you have got take these tablets and get on with, I have never seen a nurse i have no one to talk to my meds dont work i have suffer headaches everyday i cant sleep my speach is terible i cant remember words and just look like a fool all the time there is NO HELP FOR PEOPLE WITH EPILEPSY YOUR ON YOUR OWN
Hi. Sorry to hear about your experiences and that you feel you’re on your own.
As your tablets don’t work and you have headaches and problems with sleep, speech and memory, it would probably help to speak to an epilepsy specialist. They might be able to make changes to your tablets to improve things for you.
If you’re not due to see an epilepsy specialist in the near future, you could ask your GP to arrange a referral for you. Advisers on the Epilepsy Helpline, freephone 0808 800 5050, can give you details of epilepsy specialists in your area. They can also let you know if there are any epilepsy nurses near you.
If you’d like to get in touch with other people with epilepsy, you can do this on Epilepsy Action’s on-line community, Forum4e. You could also see if there is an epilepsy support group in your area.
Advice and Information Team