Epilepsy - lifestyle issues

Living with epilepsy, like many other long-term conditions, may mean adapting some parts of your life. It is common for people with epilepsy and their families to worry about how the condition will affect everyday living.

Just as epilepsy varies from one person to the next, so does the way each person manages and copes with it. The choices you make can influence your seizures, so learning about the circumstances that affect seizures helps you make informed decisions about how to enjoy your life while managing your epilepsy well.

A diagnosis of epilepsy can come as a shock. It may take time to adjust, and it can affect your physical, emotional and mental health. These are often challenging times, especially while you and your doctor work out the best treatment for your seizures.

Understanding your epilepsy means you can take a more active role in managing it alongside your doctor. If you have any concerns, discuss them so you can work together on a treatment plan that suits you.

A diagnosis may lead to some unavoidable changes, ranging from how you travel to adapting your job or daily habits to suit your health. Even though seizures can be disruptive, most people with epilepsy achieve good seizure control with regular medication and a sensible lifestyle. Online support groups can also help, giving you a place to share experiences and ask questions. It can be reassuring to know that others are going through similar issues.

Seizure triggers#

Some people notice a link between certain situations and their seizures. Activities or circumstances that increase the chance of a seizure are called seizure triggers.

Commonly reported lifestyle-related triggers include lack of sleep, overexertion or physical fatigue, physical or emotional stress, alcohol and other drug use, and hormonal changes. Triggers are not the same for everyone, and it may take time to recognise your own, especially if your seizures are infrequent. Keeping a diary of your seizures and what was happening beforehand is a good way to identify patterns.

While reducing your exposure to triggers can help, it is important not to restrict your activities so much that your interests and enjoyment are excluded. Precautions should be sensible, with a balance between risk and restriction.

Driving#

When you first have a seizure, your licence is usually suspended for a period set by the relevant driver-licensing authority. The length of this period depends on factors such as the type of seizure you had, what caused it, and whether your seizures are controlled.

In many places, people with epilepsy can drive if they meet certain criteria, particularly that their seizures are controlled. If you do not meet the required criteria, your licence may not be renewed, or you may be issued a conditional licence.

People who have had a seizure are generally required to notify the driver-licensing authority and to stop driving until a medical report is supplied. The authority considers your doctor’s advice but makes the final decision about your licence. Many people can return safely to driving once their seizures are controlled, though the waiting time varies depending on individual circumstances.

Sport and exercise#

Seizures during sport are rare; only a small proportion of people with epilepsy have seizures triggered by exercise. Most sporting activities should be safe if you avoid overexertion, dehydration and low blood sugar.

As a precaution, let people such as your coach, team manager and team-mates know what to do if you have a seizure. Some sports carry more risk than others, especially if seizures are not fully controlled.

It’s best to assess this risk on an individual basis#

Talk to your doctor about the activities you want to do and the level of risk to you and others. Activities can often be adapted, or extra safety precautions put in place, to reduce the risk to an acceptable level.

Travel#

If you want to travel, plan ahead and consider anything that may affect seizures during your trip. Some key points:

• Take a letter from your doctor confirming your diagnosis and treatment.
• Pack more medication than you think you will need.
• Keep your medications in their original containers showing your details.
• Carry your prescriptions with you, ideally on your person or in your hand luggage.
• Split supplies between different bags so that if one is lost, you still have medication with you.
• Check that your medication is available at your destination in case you lose it all.

If your flight is long, a stopover can help reduce sleep disruption. Where the local water is not safe to drink, avoid tap water and salads, and use bottled water even for brushing your teeth. Vomiting and diarrhoea can reduce the absorption of your medication and lead to seizures.

Consider wearing a medical ID bracelet. Choose travel insurance carefully, as companies vary in how they assess cover and in the charges that apply when you have a pre-existing condition. It is a good idea to read the policy details closely.

Alcohol#

Alcohol and anti-seizure medications do not mix well. Anti-seizure medications can increase the effects of alcohol, making you feel intoxicated faster. Alcohol may also reduce the effectiveness of your medication, making seizures more likely.

Most adults with epilepsy can tolerate a small amount of alcohol, but some find they cannot tolerate it at all.

If you find alcohol is a seizure trigger for you, then it’s best to avoid it#

Heavy or “binge” drinking is not recommended. This pattern is often linked with late nights, sleep deprivation, missed meals and forgotten medication, all of which can trigger seizures. Ask your doctor about how alcohol interacts with the medication you have been prescribed.

Flashing lights (photosensitivity)#

Many people mistakenly believe that everyone with epilepsy has seizures triggered by flashing lights, television or video games (photosensitivity). In fact this is quite uncommon; only a small proportion of people with epilepsy have this response. Photosensitive epilepsy can also be triggered by natural light, such as sunlight reflecting off water or flickering through trees.

Medication can effectively control some seizures#

Wearing wrap-around polarised sunglasses, tinted lenses, or patching one eye can also help some people. Photosensitive seizures should not prevent you from carrying out most normal daily work and leisure activities.

Stress#

There is a strong link between stress and seizures, with stress being a common trigger. A diagnosis of epilepsy can also bring its own stresses, many of them long term. Sources of stress for people with epilepsy may include:

• The type of seizure. Focal seizures often involve unusual behaviours that others may not recognise as epilepsy and may mistake for intoxication, inappropriate behaviour or mental health problems, which can cause embarrassment.
• Reduced independence and the unpredictability of seizures.
• The risk of injury, medication side effects, and social difficulties such as teasing or isolation.

Stress may lead to more seizures, which can in turn increase stress. Ongoing stress has wide-ranging harmful effects on health, so it is important to recognise your own signs of stress and to use strategies that help you manage it.

Relationships#

It is common for people with conditions such as epilepsy to face some challenges and fears in their relationships, especially when forming new ones; this is particularly so if they have met negative reactions in the past. Being open about your condition with those close to you helps them understand what you are going through.

Educating the most important people in your life about your condition is a major step toward successful, happy relationships. Balancing an intimate relationship and a chronic condition takes patience and commitment from both partners.

If you feel that you need some help, don’t be afraid to ask for it#

Taking a proactive approach to the health of your relationship can have positive outcomes for you and your loved one. Epilepsy should not stop you from having an intimate relationship. In some cases, epilepsy or its medication may affect your desire for sex. This is usually manageable, so see your doctor or neurologist for a referral to the right professional.

Contraception and pregnancy#

Some anti-seizure medications and hormonal contraceptives may affect each other’s effectiveness. Used together, this can lead to loss of seizure control, medication toxicity or an unplanned pregnancy.

This does not mean women with epilepsy cannot use hormonal contraception, but it does mean they may need one suited to their anti-seizure medication. Your doctor, neurologist or gynaecologist can help you decide the best form of contraception for you.

Planning is important if you have epilepsy. Speak to your neurologist well before trying to conceive, so you can aim for the best seizure control on the lowest effective dose of the right medication.

By working with your neurologist, you can lessen any risks to you and your baby#

Some forms of epilepsy are caused by genetic differences, but the risk of passing epilepsy on to your child is often low. People with a strong family history are at greatest risk of developing epilepsy. This is a complex topic best discussed with your doctor or a genetic counsellor.

Coping with a diagnosis#

If you or your child have been diagnosed with epilepsy, it is not unusual to feel some anxiety, sadness or concern; this is a very normal reaction.

Whatever your age, you may be wondering how best to manage this new challenge#

Learning as much as you can about your epilepsy may help you feel more confident about managing the condition. A wide range of information and support is available.

Key points#

• Epilepsy is a common condition of the brain in which a person tends to have recurrent, unprovoked seizures.
• Working out the best treatment for your seizures can be a challenging time.
• Activities or circumstances that increase the risk of a seizure are called seizure triggers.
• Commonly reported lifestyle triggers include lack of sleep, stress, and alcohol and other drug use.
• Precautions should be sensible, with a balance between risk and restriction.