After diagnosis, there are decisions to make about treatment and emotional effects to cope with.
When you're diagnosed with epilepsy, your doctor or specialist epilepsy nurse will discuss your treatment options with you and how the diagnosis will affect you.
“We have a lengthy discussion with the patient because we need to understand their particular situation so that we know what it'll be like for them,” says Dr Chris Clough, consultant neurologist (brain specialist) at King’s College Hospital, London.
There's no cure for epilepsy, but there is treatment that can stop seizures. Some people decide to live with their seizures and not to take medication. Others want to stop having seizures. Find out about epilepsy medication and side effects.
Some anti-epileptic drugs are harmful to a baby during pregnancy. For more information, see epilepsy and pregnancy.
Don’t suddenly stop taking your medication as this can cause a seizure. If you decide to stop your medication, talk to your doctor or epilepsy nurse as they can assess your chances of having further seizures.
Coping with diagnosis
“Epilepsy affects people in several ways,” says Kim Morley, a specialist epilepsy nurse in Hampshire. "It's not just seizures. There can be social consequences, including bullying or stigma, low self-esteem, fear of unexpected seizures or making a fool of yourself, and concerns about the effects that your medication may have.”
This can be a lot to deal with. Don’t be afraid to talk to your GP or epilepsy specialist about any problems you may be having. If they can't help you, they'll be able to put you in touch with someone who can. You can also see if there's a local Epilepsy Action group in your area.
Children and young people with epilepsy can have difficulties at school if their seizures or medication make them feel tired or it affects their concentration. Epilepsy Action has more information about epilepsy and education, including who to talk to at your child's school.
Avoiding triggers
Some people have seizures that are triggered by something specific, such as tiredness, stress or alcohol. Treatment often involves making changes to your lifestyle to avoid the trigger – for example, by making sure you get enough sleep. Sometimes this is enough to stop seizures altogether, but you may need to take anti-epileptic medication as well.
Driving
If you have any kind of seizure, you need to tell the DVLA (Driver Vehicle and Licensing Authority). You won’t be allowed to drive again until you have been free from seizures for a set period of time, depending on the kind of vehicle you drive (for example, a car or a heavy goods vehicle). Directgov has more information on epilepsy and driving.
Work
Having epilepsy doesn’t mean you can’t work. However, you won't be able to do some jobs. For example, being a driver, pilot or paramedic.
You don't usually have to tell your employer or potential employer that you have epilepsy, unless you haven't fulfilled your responsibilities under the Health and Safety at Work Act (see the Epilepsy Action website for more information).
However, there could be benefits in letting your employer know. If you tell your employer, they must make reasonable adjustments to accommodate you. According to the charity Epilepsy Action, this could include allowing you to start work later if you know you have a seizure every morning.
Businesslink offers information for employers, including health and safety information.
