Epilepsy is more than seizures and can impact on many aspects of a person’s life.  The better controlled your seizures are, the less impact epilepsy will have on your life.

Your first point of contact should always be your epilepsy specialist nurse, neurologist or GP if you want to talk about any issues you experience.  Our freephone helpline can also offer you support and more information, as well as a listening ear and an opportunity to talk.

The following explores some of the areas of your life that epilepsy may affect.

Emotional wellbeing

It is completely normal to feel a whole range of emotions after a diagnosis of epilepsy.  Give yourself time to process and adjust, and most importantly time for your treatment to work.  It can take some time to find the right medication or combination of drugs to give you good seizure control, don’t give up.

In the meantime, if you are struggling or feeling low, pick up the phone and speak to our helpline on 0808 800 2200.   Also seek advice from your epilepsy specialist nurse because low mood can also sometimes be a side effect of some anti-epileptic drugs.

Our Emotional Wellbeing publication explains more about the link between epilepsy and mental health.

Memory issues

Memory issues are common for many people affected by epilepsy.  A seizure often affects a person’s short-term memory.  Some people with frequent and uncontrolled seizures can also find it difficult to remember things from their past.

Memory issues often arise from seizure activity in the part of the brain which controls our memory.  People with temporal lobe epilepsy are more likely to experience memory loss as the temporal lobe is where memories are formed.

A person’s memory will usually be directly affected in the run up to a seizure, during and after.  This means that you may not remember any events which happened shortly before a seizure.  It can also be difficult to retain new information given to you immediately after the seizure while you recover.  Memory issues often improve with better seizure control.

Common side effects of some anti-epileptic drugs, like poor concentration or tiredness, can also affect how well your memory functions.

To find out more and for tips on dealing with memory issues, read our Epilepsy and Memory publication.

Confidence and self-esteem

The unpredictability of seizures can knock your confidence in many ways.  It may make you initially reluctant to leave your house on your own.  You might feel safer for now to ask a friend or family member, who knows how to support you if you have a seizure, to go with you.

A medical bracelet or necklace giving information about your epilepsy may also make you more confident.  You can also request from us one of our ‘I have epilepsy’ cards, where you can record details of your epilepsy, the medication you take and who to contact in an emergency.  Better seizure control will over time increase your confidence.

If you need help, talk to us.  Our helpline 0808 800 2200 is always here for you.

Personal relationships

Having a supportive network of friends and family can make a big difference in the first few months after diagnosis.  Your partner, family or friends may also need some time and more information to process your diagnosis.  They may feel unsure as to what to say and do.   Help them by being open and honest about how you feel, and what you need from them.  You may need to become more assertive about what you need from others.

Education

With good seizure control and no other underlying health conditions, epilepsy will not usually have an impact on learning at school.

Children and young people who have frequent and uncontrolled seizures have a right to receive adequate and effective support in their education.  These rights to additional support are covered by various pieces of disability and education legislation.

A child is much more likely to cope with their epilepsy if they are supported by teachers and the other children at school.  Our free schools’ awareness talks can help normalise epilepsy to children.  We also deliver training to teachers and staff.  To find out more, contact us on our helpline 0808 800 2200.

Check out our dedicated resources for teachers, parents and children.  Our Teacher’s guide to epilepsy helps teachers understand epilepsy, what to look out for and how to support a child with epilepsy.  You are welcome to request a free copy of this to hand to your child’s teacher(s).  Schools can also contact us direct and request multiple copies of this publication.

Our storybooks for pre-school to early primary school children provide an age-appropriate context for parents and carers to talk to their child about epilepsy.  Our teen guide, Getting on with life, tackles some of the lifestyle choices in an informative and sensitive way.

Work and career

Anyone affected by epilepsy has a right to be treated fairly when in employment or looking for work.  Epilepsy is a disability as defined by the Equality Act 2010, and this gives you protection against unlawful discrimination.

You have a right to ask your employer for a reasonable adjustment to allow you to safely carry out your duties and tasks in your workplace.

Employers and employees might find our Epilepsy and Occupational Health publication helpful.  It covers basic facts about epilepsy and the workplace, factors to consider when doing a risk assessment, and also makes clear legal responsibilities of employers to comply with the Equality Act and Health and Safety at Work legislation.

Our Equality Act publication has more information for those in work or looking for work and their rights under the Equality Act.

Driving

If you have had one seizure, no matter what kind, including an aura sensation, you must stop driving and by law notify the DVLA (Driving Vehicle Licensing Authority) of this.  Don’t wait until you have a diagnosis of epilepsy, even a suspected first seizure means you must stop driving immediately until further tests and investigations have concluded.

Once you have been seizure free for 12 months (with or without taking medication) you can apply to get your ordinary car licence reinstated.

If you voluntarily surrendered your licence you can usually start driving as soon as you have been seizure free for 12 months even if you haven’t had your driving licence back.  If your licence was revoked, you must wait until you driving licence is returned to you before you can drive, often meaning a further delay before you can drive again.

Other stricter rules apply for PGV and HGV licences.

If you have to give up your licence because of a diagnosis of epilepsy, you will be entitled to a free nationwide bus pass in Scotland.  Contact our helpline on 0808 800 2200 to find out more.

Sport and leisure

Epilepsy does not mean you automatically have to stop being active and doing what you enjoy.  In fact research has shown that being active, often resulting in better physical and mental health, can have a positive impact on seizure control.

Your epilepsy is as individual as you are, just like the sports and activities you enjoy.  Many people with epilepsy have their condition well under control with medication meaning little or no restrictions to their lifestyle and activities.

If you have regular seizures, you may need to take some precautions and check with your doctor or epilepsy specialist nurse before you continue with sports or leisure activities.

Our Epilepsy and Leisure publication provides further general guidance on different sports and leisure activities and what you may need to consider.

Women and epilepsy

Epilepsy can affect a woman at any stage in her life. Some women may experience a change in seizure control at around times of hormonal changes, such as during puberty, pregnancy or in the run up to the menopause.  Some women also find they are likely to have more seizures at around their monthly periods.  This is called catamenial epilepsy.

An epilepsy specialist nurse will help you manage these times when you are at higher risk of seizures such as prescribing additional medication you can take.

Epilepsy does not mean you cannot start a family.  If you are planning a pregnancy, always seek medical advice from your epilepsy specialist nurse before you get pregnant.  This is to make sure your seizures are well controlled and you are on the most suitable anti-epileptic drug to enjoy a healthy pregnancy and healthy baby.  Do not stop taking your medication, even if you have an unplanned pregnancy, as this could put both you and your unborn baby at risk.

For more detailed information, read our Women and Epilepsy publication.

Men and epilepsy

Losing your driving license or not being able to work for the time being can have a huge impact on a man’s self-esteem and confidence.  Of course these issues are of equal concern and importance to women too.  However, many men still find it difficult to open up and talk about how they feel.

The psychological impact of seizures and some anti-epileptic drugs can sometimes affect sex drive.  Some studies also suggest that certain anti-epileptic drugs cause a slight reduction in fertility.

If you are affected by this, please seek medical advice.  Your doctor may be able to switch you to a different medication or suggest other appropriate treatments.

Start talking.  All calls to our helpline 0808 800 2200 are completely anonymous and confidential.   Also have a look at our Epilepsy and Men publication which summarises some of the main issues men have raised when calling our helpline.

Epilepsy in later life

Epilepsy can sometimes follow a diagnosis of dementia or after a stroke.  As more people live longer with these conditions, more older people will develop epilepsy.

Having a diagnosis of epilepsy in later life can hit you hard especially if you have always been healthy and active.  Losing your driving licence and having to rely on others for the time being can affect self-esteem and confidence.

Our Epilepsy and later life publication pulls together information specifically aimed at older people to help you understand epilepsy and make the most of your treatment.

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