Epilepsy and lifestyle issues
Many people have concerns about the practicalities of everyday life with epilepsy.
Each person experiences epilepsy in quite a different way depending on the type, frequency and predicability of their seizures. In most cases, medication can stop seizures occurring or at least, reduce them dramatically. Many factors will affect the choices you make about adjusting your lifestyle.
The issues in this brochure are among those commonly raised by people with epilepsy. You may wish to discuss these or other issues in more detail with your doctor or a trained counsellor from the Epilepsy Foundation of Victoria.
Sport and Leisure
When people are busy and active they are less likely to have seizures. Some activities involve a greater risk than others. Explore your sport and leisure interests freely. With appropriate safety precautions most risks can be minimised.
Here are some basic safety guidelines for common sport and leisure options.
Swimming and other water sports
Try to always swim with someone else, making sure that your companions know you have epilepsy and how to help if you have a seizure. If you are at a public swimming pool, tell the attendant how to assist you if the need should arise.
Always wear a life jacket when boating or windsurfing.
Team and contact sports
Your epilepsy should not be affected by playing team and contact sports unless the epilepsy was caused by serious head injury. Some people choose to wear head protection while playing.
When cycling take normal safety precautions such as wearing a helmet, wearing easily visible clothing and using lights at night. Ride on designated bike paths to avoid the traffic.
Wear a riding helmet and try to ride with other people.
High risk activities
- Scuba diving
- Bungy jumping
These are not recommended
Climbing ladders, using power tools, taking overly hot showers, ironing and standing by the fire are some of the everyday activities that may pose a risk.
However the potential risk in everyday activities depends very much on the individual nature of your epilepsy. The patterns of your seizure-type, frequency, potential triggers, presence of an aura - need to be taken into account so that you can make informed choices.
Night clubs and Computer Video Games
Some people find flashing lights uncomfortable. Closing or covering one eye will lessen this discomfort. A small number of people can have seizures that are triggered by strobe lighting, flickering televisions or computer screens. This is known as photosensitivity. You can easily enjoy television and computer video games by remembering to sit in a well lit room and not directly in front of the screen.
Most people with epilepsy enjoy the occasional drink with friends, although some choose not to drink alcohol at all. Over indulgence in alcohol is unwise and may trigger seizures.
Medication and alcohol do not mix.
SUDEP (Sudden Unexplained Death in Epilepsy)
Sudden death may occur, however risks appear to be negligible for those whose epilepsy is well controlled.
Research is in place and there is a commitment to find any relevant information to explain this phenomenon.
Refer to our SUDEP kit for more information.
It is widely accepted that we live in a stressful society. The pressures of financial survival, work, travel in crowded cities and meeting our responsibilities are just some of the stresses that everyone may experience in their daily life.
For people with epilepsy there may be additional, associated stresses. In an international survey [MITTAN], people with epilepsy identified a number of anxieties that could add to the stress in their lives. These included the need to take medication regularly, uncertainty about seizure occurance, difficulties gaining and retaining a driver's licence and dependency on others.
The effect of this stress, and the anxiety and emotion that accompany it, may trigger a seizure. An Australian study [HAYDEN] found that 63 per cent of respondents believed there was a relationship between stress and seizure control.
As well as compliance with prescribed medication, stress management techniques may enhance seizure control.
How stress develops and how it affects the body
Stress is a natural physical response. When confronted by a challenge, the body responds by releasing the hormone "adrenalin" which gives extra strength to the muscles and sharpens responses.
This physical reaction is designed to provide a quick response to a challenging situation. The stress reaction can become a problem, however, if there are too many challenges to the body at any one time.
Just how much stress is too much varies for each individual. You can recognise when you have too much stress in your life by watching for certain changes in your behaviour. These changes might include missing meals, drinking too much alcohol or being unable to rest and relax.
[MITTAN]. R. Mittan et al, Fear of Seizures, published in Advances in Epileptology, X111th Epilepsy International Symposium, California, 1982
[HAYDEN]. Hayden, Penna and Buchanan, Epilepsy: Patient Perceptions of their Condition, Westmead, Sydney, published in Seizure, 1992.
Techniques that help to reduce stress
These techniques may help you to manage and reduce stress.
- Relaxation and breathing
These techniques involve focusing on your body and your breathing, consciously relaxing your muscles, deepening your breathing and allowing your thoughts to emerge without attempting to control them.
Meditation emphasises relaxing the mind, using techniques such as observing thoughts and emotions, and focusing on breathing.
Regular exercise enhances personal fitness and may induce better sleep and a healthy appetite. It often contributes to a sense of well-being by providing a break from day-to-day worries. Gentle movement, like simple stretching, can relax and calm the body.
- Time management
This involves techniques such as establishing priorities, using lists, notes and a diary, taking time for yourself and rewarding yourself for a job well done.
- Assertiveness training
Assertiveness is an approach that may help you communicate your feelings and needs, without aggression, in all areas of your life. This technique also emphasises the importance of listening to and respecting others.
- Improving self-esteem
This technique builds positive thoughts and reduces negative ones. It involves actively learning about yourself and appreciating all your achievements.
- Anxiety management
Anticipating problems can also cause stress. Identifying your fears and learning to take better control of your life may help to diminish anxiety.
Where to learn stress management techniques
The Epilepsy Foundation of Victoria offers regular workshops which introduce people to stress management techniques. Workshops can be designed for special groups such as the elderly or families. Contact your nearest EFV office for details.
The Foundation can also direct you to other stress management training providers who offer follow-up courses in these techniques.
- Relax and breathe easily
- Exercise your mind and body
- Stay "on top" of your schedule
- Be assertive, not aggressive
- Make self-esteem a priority
- Seek help to manage anxiety
Skills, abilities, qualifications and experience are the qualities that employers are most interested in when considering someone for employment. Your epilepsy is only relevant if you have seizures that are likely to interfere with your ability to do your job.
Both the State Equal Opportunity Act and the Federal Disability Discrimination Act legally protect people with epilepsy from discrimination. You are entitled to take legal action if you believe you have been discriminated against because of your epilepsy.
However, some areas of employment are denied to people with epilepsy. These include the Armed Forces, the Police Force, the driving of heavy goods or passenger vehicles and flying aeroplanes.
In Victoria, each individual licence application is considered by a panel of neurologists. The panel can evaluate your particular circumstances instead of applying blanket criteria. Conditional licenses and much shorter seizure free periods are now options in some circumstances. See our "Driving" information page for more details.
If you are going overseas, pack enough of your normal medication to last throughout your holiday. Running out could be a problem because the medication overseas may not be exactly the same as yours. If you are going for a long time, talk with your doctor about how to get an adequate supply of medication. Remember that there are epilepsy organisations in many countries if you need advice or referral.
Ask your doctor for a statement of the prescribed drugs you will be carrying.Take a written record of your diagnosis, history and treatment, in case of an emergency.
Epilepsy is largely irrelevant when having sex, however, lots of people worry about it and this in itself can lead to sexual problems. Just occasionally the anti-epileptic drugs (AEDs) may contribute to a reduced desire for sex but usually this effect is easily treated.
Discuss any sexual concerns you have with a trusted professional such as your doctor or a counsellor.
The contraceptive pill
Some medications for epilepsy can reduce the effectiveness of the contraceptive pill so make sure the doctor who treats your epilepsy knows you are taking the pill.
Most women with epilepsy are able to have children without complications. Careful medical management is important because seizures during pregnancy and anti-epileptic medication may pose a risk to the baby's health. So if you are planning to become pregnant, we strongly recommend that you discuss pregnancy with your doctor prior to conception. See also the Australian Pregnancy Register.
Some forms of epilepsy are inherited but most are not. Your neurologist or a genetic counsellor can give you information about epilepsy and inheritance.
The decision about whether to wear some form of medical identification is a very personal one. Usually in the form of a bracelet or necklace stating your name, address and medical condition, medical identification can improve your chances of accurate medical treatment in the event of a seizure occurring outside your home.