Epilepsy

Know your triggers
The more you understand what triggers your seizures and how to avoid these, the less debilitating your epilepsy will be. Keep a seizure diary to help you work out if you have any triggers.

Take your medication
Anti-epilepsy medication controls seizures in around 70% of people. Working with your specialist to find the medication that suits you best, and taking it exactly as prescribed, is probably the single most effective way of living well with epilepsy.

Regular reviews
You will have regular reviews of your epilepsy and your treatment. This is usually carried out with the GP, but sometimes it’s done with your neurologist and their team. Sometimes, if your epilepsy is not well-controlled, you will have reviews more frequently.

Self care
Self care is an integral part of daily life and is all about you taking responsibility for your own health and well-being with support from the people involved in your care. Self care includes the actions you take for yourself every day in order to stay fit and maintain good physical and mental health, prevent illness or accidents and care more effectively for minor ailments and long term conditions. People living with long term conditions can benefit enormously from being supported to self care - they can live longer, have less pain, anxiety, depression and fatigue, have a better quality of life and be more active and independent.

Want to know more?

• Common health questions: epilepsy reviews.
• Life after diagnosis.
• Your health, your way: what is self care?

Many children with well-controlled epilepsy are able to learn and participate in their school’s activities completely unaffected by their condition. Others may need some extra support to get the most out of their time at school. You should ensure that your child’s school knows about their condition and the medication they need to control it.

Epilepsy is more common among children with learning disabilities and special educational needs. These children are entitled to extra help to overcome their difficulties. Each school will have at least one member of staff with responsibility for children with special educational needs. The law says that all state schools must do their best to meet special educational needs, sometimes with the help of outside specialists.

If your child needs a lot of extra help, the local education authority may carry out an assessment. This will outline the help your child needs, set a number of long-term goals, and ensure that your child is regularly reviewed.

Want to know more?

• The National Society for Epilepsy: children and education.
• The National Society for Epilepsy: young people.
• Directgov: special education needs assessments.
• Skill: National Bureau for Students with Disabilities
• The National Society for Epilepsy: epilepsy and learning disability.

If you have epilepsy, you have the right to live a full and independent life. Services and legislation to help you live independently include:

Disability Discrimination Act (DDA)
People with epilepsy, even if their seizures are controlled by medication, are covered under the DDA. This prevents employers and providers of goods and services from treating people with disabilities unfairly.

Want to know more?

• Directgov: Disability Discrimination Act (DDA).
• The National Society for Epilepsy: employment.

Free prescriptions
If you take anti-epileptic drugs, you're entitled to get all your prescriptions (not just those for AEDs) free of charge. Ask your doctor how to obtain an exemption certificate.

Want to know more?

• Help with health costs.

Disabled Person's Railcard
This is available to all people with epilepsy who still have seizures. It entitles you to discounts on rail tickets.

Want to know more?

• More information on the Disabled Persons Railcard.

Access to work
This scheme can help if your epilepsy affects the way you do your job. It gives you and your employer advice and support with extra costs, which may arise as a result of your needs.

Want to know more?

• Directgov: access to work.

Disability Living Allowance (DLA)
Children and adults aged 64 and under may be eligible for DLA if they need help with personal care, or if they have walking difficulties because they're physically or mentally disabled. If you're aged 65 or over, you may be able to get Attendance Allowance.

Want to know more?

• Directgov: Disability Living Allowance (DLA).
• Directgov: Attendance Allowance (AA). 

Anybody who has had an epileptic seizure is prohibited from driving for at least a year after the seizure. If you've had any kind of epileptic seizure, you must tell the Driver and Vehicle Licensing Agency (DVLA).

Once you've been seizure-free for one year, you can apply to the DVLA for a new licence. If you only have nocturnal seizures, you may apply for a new licence after three years as long as you haven't had a day-time seizure in that time. Before issuing a new licence, the DVLA may contact your doctor. Initially, you'll probably be issued with a three-year licence. If you remain seizure-free for seven years, you should receive a full licence that's valid until you're 70.

The DVLA recommends that you don't drive for at least six months after stopping or changing medication.

Want to know more?

• DVLA: fitness-to-drive standards (PDF).
• National Society for Epilepsy: driving and transport.
• National Society for Epilepsy: car insurance.

When somebody with epilepsy dies and no apparent cause can be found, it is known as sudden unexpected death in epilepsy (SUDEP).

SUDEPs are rare, affecting only 0.5% of people with severe epilepsy. What causes SUDEPs is unknown, but one theory is that seizures could affect the person's breathing and heart beat.

The risk factors for SUDEP are:

• poorly controlled epilepsy, and
• having a history of seizures occurring during sleep.

If you are worried that your epilepsy is poorly controlled, contact your epilepsy specialist. It may be possible to refer you to a specialist epilepsy centre for further treatment.

Want to know more?

• Epilepsy Action: SUDEP.