Having epilepsy, like many other long-term conditions, can impact on lifestyle, and you may have to make some changes when you are diagnosed.
Making changes after a diagnosis is common with all health conditions. Talking with others and being informed is often found to be helpful.
The lifestyle choices you make will impact on your epilepsy and the management of your seizures. So learning about lifestyle issues related to epilepsy will help you to make informed choices about how you can enjoy your life and manage your condition well.
Many people who have seizures live alone or may live alone at some point. If you do live alone, consider your plan for when you have a seizure, how best to keep yourself as safe as possible and any plans that can be put in place for support from others. Seizures at night hold a high risk, and having assistance nearby might be protective (in case of injury or emergency). This is not always possible for everyone, but speak with your clinician about what steps you could take to help minimise these risks.
Discuss your seizures with your clinician and consider alarm / monitoring device options. This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety of a person experiencing seizures. They may be helpful to you as part of a wider care plan but they should not be relied on as the only method for reducing risks.
See our Epilepsy Safety Devices page
Alcohol and substance use
Research has shown that people with epilepsy who abuse alcohol and other substances are at an increased risk of injury and death. It can make some people more likely to have a seizure, forget to take their epilepsy medication or affect how the medication is absorbed in your body. So, it is important you consider this when deciding whether to drink or take illicit drugs.
Cannabis has been in the UK news recently as a possible treatment for epilepsy and research trials are happening to see if in future it may become available as an epilepsy medication for people with frequent, treatment-resistant seizures. It is important to remember however that there is currently very little scientific evidence to support cannabis (oil or otherwise) as a treatment for epilepsy; particularly any cannabis based products available in shops, online or illegally.
If you are worried about your seizures and want to know more about this - it is vital that you talk to your clinician who looks after your epilepsy before making any changes or additions to your epilepsy medication. You should never stop taking epilepsy medication without speaking to your clinician first. Find out more about our stance on cannabis derived medicinal products here.
It is thought that 1 in 4 people will have a mental health condition at some point in their lives (World Health Organisation). For people living with long-term conditions such as epilepsy, this risk is thought to be higher.
If you have any concerns over your mental health, your clinician can give you advice on what services or treatments may help. Sometimes your epilepsy or antiepileptic medications can affect your mood and mental health or vice versa, so it is helpful to know the signs to look out for which may mean you need to seek advice:
- Feeling sad or low for long periods of time
- Feeling hopeless or helpless
- Feeling anxious or worried
- Feeling irritable
- Feeling guilty
- Feeling tired all the time, with no energy
- Sleeping more or less than usual
- Having no motivation or having trouble concentrating
- Losing interest in things you normally enjoy
- Losing interest in sex
- Eating more or less than usual
- Thinking about harming yourself or suicide
Research has shown that people who are depressed are at an increased risk of injury and death. Noting your feelings and talking to your clinician about them can open up options for support that may be helpful.
Contraception and Family-Planning
Women and girls with epilepsy should speak with their clinician about the best methods of contraception to use as some antiepileptic drugs (AEDs) can interact with some types of contraception (and vice versa). This could result in contraception failure or perhaps a worsening of seizures. It is important you find the right method for you so that you are prepared for a sexual relationship.
Unplanned pregnancy should be avoided. If you do unexpectedly find that you are pregnant it is vital you do not stop taking your epilepsy medication. See your doctor immediately to ensure the safest possible care for both you and your baby.
It is really important that women with epilepsy plan their pregnancies to
ensure that the medication they are taking is the safest possible option for when they become pregnant. This helps to minimise any risks to both mother and child.
It is important to talk to your clinician about how Epilepsy can impact on contraception and pregnancy. Even if you are not planning on having a baby any-time soon the information will prepare you to make informed decisions when the time comes.
Having a baby may mean your medications or their dosage need to change, and your seizures may change too. These changes will continue once the baby is born until you are stabilised again post pregnancy. Your clinician can help with advice on this.
Continuing to take your medication as prescribed by your Clinician is important at all times, but especially during pregnancy, because keeping control over your seizures is one of the best ways to keep both yourself and your baby safe.
For more information and tools to help you specifically during pregnancy, check out the website Women with Epilepsy created by Epilepsy Specialist Midwife, Kim Morley.
There are also Pregnancy Registers available where women with epilepsy can share information about their pregnancy to help inform future research.
People who have an intellectual disability and epilepsy, and their carers, need to be provided with suitable information to assist their risk and lifestyle choices. SUDEP Action has developed information booklets about epilepsy and risk which may be of assistance.
Building a good routine for taking your epilepsy medication is one of the most important steps you can take to help control your seizures and reduce your risks. Take the time to learn about your medication and talk to your clinician about any worries.
Always check with your doctor before taking any other medications or supplements and always report unwanted side effects or medication reactions to your clinician or pharmacist immediately. Keep your medication in a safe place away from children.
If you have trouble remembering to take your medication, ask your clinician for advice and resources to help you with this. Check with your pharmacist or doctor about what to do if you miss a dose of your medication.
Long term treatment
Some antiepileptic drugs (AEDs) are known to affect bone strength over time. Other long term effects may also occur. This is one reason why it is important to continue having annual reviews of your epilepsy and your medications with your clinician - even where your epilepsy has been stable or you are seizure free.
Your clinician can continue to monitor both your medication and your general health over time and to recommend any tests, diet, exercise, supplements, or changes that might be beneficial for you. As knowledge increases and new medications become available your epilepsy treatments can be reviewed so you have the best care available.
You may also want to consider if Epilepsy Safety Devices are suitable for you.
If you have active seizures, there will be certain rules and restrictions which may affect if you can drive. It is important to ask your clinician for specific advice on this and they will be able to direct you to the right places for information on what you are able to do, and what support you may be able to receive if you cannot drive.
It is vital that if you are told not to drive by your clinician, that you do not drive. This can seem really restricting, but it is the best way to keep yourself, passengers and members of the public safe as you could have a seizure while driving.
Attending regular reviews with your clinician means this can be assessed regularly to see if any restriction can be lifted or changed over time.
Recreation brings a great deal of pleasure to our lives. If you have epilepsy you might worry that many activities will be unsafe, or no longer open to you, but this is often not the case. Where an activity appears to carry risk, discuss this with your clinician before you begin and seek advice on any steps you can take to reduce any risks you might face because of your epilepsy.
Discussing your epilepsy with the activity leader can also help, or consider taking someone who knows about your epilepsy to support you in case you have a seizure.
In some cases, activities can be modified and common sense safety steps can help you participate safely. Because epilepsy varies so much between individuals many questions about taking part in activities are best answered on a case by case basis.