Epilepsy is so much more than seizures and can often impact on many aspects of a person’s life. The better controlled your seizures are, the less impact epilepsy is likely to 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 concerns you may have. Our freephone helpline 0808 800 2200 can also offer you support and more information, as well as a listening ear and an opportunity to talk.
Emotional wellbeing
A diagnosis of epilepsy can trigger a whole range of emotions. This is completely normal. 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-seizure medication.
Our Emotional Wellbeing publication explains more about the link between epilepsy and mental health.
Memory issues
Memory issues are common for many people with 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 can improve with better seizure control.
Common side effects of some anti-seizure medication, 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. You may be reluctant to leave your home on your own. Ask a friend or family member to initially come with you to give you a bit more confidence.
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.
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 often 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-seizure medication 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-seizure medications can sometimes affect sex drive. Some studies also suggest that certain anti-seizure medications cause a slight reduction in fertility.
If you are affected by this, please seek medical advice. Do not stop taking your medication without 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.
For more detailed information, read our Men and Epilepsy publication.
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 more on others 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.
Publications
- Epilepsy and memory
- Emotional wellbeing
- Information for teachers
- Brian learns about Epilepsy
- Farah and Ted visit the hospital
- Happiness Heroes
- Teen Guide – Getting on with life
- Epilepsy and Occupational Health
- Equality Act – summary of key rights
- Epilepsy and leisure
- Epilepsy and driving
- Women and epilepsy
- Epilepsy and later life
