Living with epilepsy

Once a diagnosis is made and treatment is implemented, epilepsy will likely become a permanent consideration in a sufferer's daily life. A chronic disorder, it often affects many areas of life. It can impact the ability to drive and influence various areas  of independence.

If you are affected by epilepsy, as far as possible, try to live an independent lifestyle. You can still get around some of the limitations that may affect your daily life. Find ways to help yourself, rather than focusing too much on the restrictions. For instance, you may not be able to drive, but if you live in an area with reliable and relatively safe public transport, you can still lead a normal, active and independent life.

Lifestyle considerations and coping mechanisms can include:

• Keeping a record book or journal: Identifying triggers and detailing seizure experiences as best you can will be helpful for both you and your specialised medical team in effectively treating your condition.
• Wear a medical alert bracelet: This can help people, both known to you and strangers, become aware of your condition should a seizure occur and you are unable to communicate what is happening. In this way, people around you will be able to quickly act to help get you the medical attention you may need following an incident.
• Educate close relatives, colleagues and family: Making those closest to you aware of your condition and teaching them how to handle an incident (should it happen) will help to assist you in the event of a seizure and also help to arm those around you with necessary knowledge that may help keep them calm too.
• Seek out support: If your mental and emotional well-being is affected by your chronic condition, it is best to seek professional help to alleviate the effects of dealing with such an unpredictable illness. Epilepsy may have an impact on some of your daily activities, school work, working environment, relationships or finances. It can be overwhelming at times, causing you to feel stressed. There may be people around you who do not understand your condition who may make fun of you or display negative behaviour. Ignore them. Educate those around you who care and can help and expose yourself to circles of people who can help keep your spirits up and your sense of humour too. It will help you to seek support at times when you feel less able to help yourself. Support groups for people with a variety of different seizure disorders can also be beneficial in helping you cope with your illness. Wherever you can seek healthy support to help you gain a positive hold over your physical, emotional or even spiritual aspects of your life.
• Get enough rest and sleep: For many poor sleep is a trigger for seizures. It is important that you do all you can to get a good night’s rest every day.
• Get active: A healthy amount of exercise can improve your overall physical health. If your condition affects your mental health, exercise is a great way to alleviate symptoms of depression or anxiety and help you manage stress. Whatever exercise activity you choose, it’s important to rest when you get tired and stay sufficiently hydrated.
• Make healthy choices: Refrain from smoking and indulging in aggravating substances such as alcohol that may have an adverse effect on your condition and disrupt the effectiveness of your medication treatment.

The role of diet and nutrition in epilepsy

An important part of taking care of yourself comes down to what you eat. A ketogenic diet may be recommended by your doctor and discussed with you during your treatment plan.

The ketogenic diet is low in carbohydrates and high in fats, but does require a strict balance. The diet is designed to force the body to use fat for energy, instead of glucose. This is known as ketosis. You may be referred to a nutritionist or dietician to help you put together a diet plan. Children, in particular, must be carefully monitored if placed on this diet so as to prevent malnourishment.

The diet has been noted to reduce the frequency of seizures due to the fact that it mimics the metabolic effects of fasting which has proven anti-seizure effects, but the degree of success varies between person to person. A doctor should also be involved in monitoring this diet as potential adverse effects can include dehydration, nutritional deficiencies, constipation, slowed growth (in children), and a build-up of uric acid (which can lead to kidney stones). If the diet is properly managed and medically supervised, side-effects should not occur frequently or at all.

Teens and adults may be recommended to follow a modified Atkins diet instead, which is also high in fat and a controlled carbohydrate intake. A common side-effect of a diet higher in fat and lower in fibre, unfortunately is bouts of constipation.

Behavioural changes to manage epilepsy

Behavioural changes in children with epilepsy can sometimes impact their learning capabilities. There isn’t always a connection to adverse effects, but it can happen that some children with epilepsy will have intellectual disabilities as well. A doctor may be able to determine a cause in this instance.

Children may experience a change in behaviour a few hours and sometimes minutes before having a seizure. They may suddenly become irritable, hyperactive, inattentive or aggressive before a seizure.

The uncertain nature of epilepsy can be a confusing and stressful thing for a child. They may worry about suddenly experiencing a seizure in front of their friends or classmates. This can cause behavioural changes in a child. He or she may act out or withdraw from specific situations on a social level.

Seeking support can help your child to find ways to cope and learn to adjust over time. Behaviours developed in childhood can become habits as an adult which can further impact relationships and social interactions. The knock-on effect may intensify emotional challenges such as anxiety and depression.

Treatment for behaviour may be influenced with medication but typically depends on the nature of the issue. Therapies for the individual child or family can do wonders to help everyone not only cope, but support one another as you deal with this chronic condition.