Mark says: 'The farthest I’ve been outside is to put the rubbish out, in case I have a seizure.'
Janet says: ‘I have been to see another Neurologist,he thinks I have migraines and NEAD he has put me on Amitrityline however I have been fitting about 30min after taking them and am not sleeping very well.’
Paula says: ‘My daughter has given up college because all her confidence has gone. She is frightened of having an attack whilst there’
Should I stop doing anything?
- Don't put life on hold until after the attacks stop. Plan outings, arrange treats for yourself, do things that are fun and interesting and have things to look forward to, so that life becomes meaningful again. If you feel that you may be at risk of injury during an attack, discuss this with your friends and family. Work out a way to keep yourself safe or choose activities which would not put you at risk if you had a seizure. Try to do as much as possible for yourself and be as independent as you can. It is better if your friends and family encourage you to do things for yourself, and do not become too protective. Try to weigh up the pros and cons of the risk of hurting yourself with the limitations of not doing the things you used to do.
- Don’t let yourself become isolated. Many people with non-epileptic attacks feel embarrassed or ashamed of their attacks. They often don’t know how to explain to people what is happening to them. As a result they may stop seeing friends, avoid going to places where there are people around, or even stop going out altogether. This too will make you feel isolated and depressed.
It is much better for you to carry on seeing people and may well help your recovery. So try to be bold and don’t let embarrassment stop you doing things. Explain to friends and family that you have non-epileptic attacks. You could show them this website to help them understand your condition. Talk to them about your attacks and your worries about them, just as you might with any other medical condition. Tell them what will happen if you have an attack, and what you would like them to do. Go out, see people and enjoy yourself.
- Avoid Medical Treatment. Try to avoid going to hospital for a non-epileptic attack and assure your friends and family that it is not necessary to call an ambulance.
Remember that even if a non-epileptic attack goes on for a long time, unlike an epileptic attack, it will do no damage to your brain like an epileptic attack. If you keep getting rushed into hospital this can interfere with you getting on with your life, creates a lot of anxiety, and may result in you getting wrongly treated for epilepsy which could can be dangerous.
- Avoid seeking more doctors' opinions. People who experience non-epileptic attacks often have unhappy experiences with doctors and other healthcare professionals. It may have taken months or years before you found healthcare professionals who were able to make a diagnosis of NEAs and to explain this diagnosis to you.
This sort of experience can make it difficult for some people to trust doctors. However, once a clear diagnosis has been made, it may be better for you to accept the advice you have been given and to stick with your current doctor rather than seeking further opinions. Seeing different doctors may only increase your confusion about the diagnosis and you may well be put back on antiepileptic drugs which will not help you.
Although making changes to your lifestyle can help, sometimes we need the help of others. To see what other people can do to help you to get better, click here.