Living with Epilepsy

On this page you will find information on:

Depending on your type of epilepsy, frequency and predictability of seizures, you may have to make adjustments to your present lifestyle.

On this page you will find information on:

Career Options and Employment

A diagnosis of epilepsy can sometimes mean you have to change your career. In some cases, you can stay in the industry and retrain for another area, while in other cases, you may have to abandon your chosen field altogether. The loss of your job or career can make your diagnosis harder to bear.

Skills, abilities, qualifications and experience are the qualities that employers are most important to any potential employer. Your epilepsy is only relevant if you have seizures that are likely to interfere with your ability to do your job.

The Disability Discrimination Act 1992 makes disability discrimination unlawful and aims to promote equal opportunity and access for people with disabilities. Under the Act, individuals can lodge complaints of discrimination and harassment with the Human Rights & Equal Opportunity Commission (HREOC). HREOC undertakes a wide range of activities to assist individuals and organizations to understand their rights and meet their legal responsibilities.

Federal and State anti-discrimination laws 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.

For more information about employment see our workforce publication Epilepsy and the workplace: a guide for workers and employers (2011) [pdf]

For information about Australia’s anti-discrimination laws see Fair Work Australia.

Epilepsy in the Workforce: Supporting Successful Careers – Webinar hosted by Epilepsy ACT in Feb 2022

1 in 10 Australians will have a seizure in their lifetime. 1 in 25 will develop epilepsy. Would you know what to do, if someone in your workplace had a seizure?

Or maybe you have epilepsy and worry about how your colleagues would handle one of your seizures at work?

Whether you have epilepsy, or work with someone who has epilepsy, the stigma and anxiety surrounding seizures can sometimes make it a difficult topic to navigate.

Click the video below to join us as we facilitate a one hour virtual information session, aimed at supporting and empowering people with epilepsy in the workplace.

The webinar is part of the ACT Government’s support for The International Day of People with Disability, a United Nations sanctioned day that aims to increase public awareness, understanding and acceptance of people with disability and celebrate the achievements and contributions of people with disability. Even if a person with epilepsy does not consider themselves as having a disability, and do not experience any significant limitations or their epilepsy is completely controlled by medications, they are still protected by the Disability Discrimination Act of 1992 (DDA).[ESW1]

Young Adults

If you’re a young adult with epilepsy, it’s important to learn about your own epilepsy. Understand the type you have, any triggers that might cause a seizure, and any signs that a seizure may be coming. Knowing this can help you take steps to prevent seizures. You should also know about the medicines prescribed to you, including the right amount to take, possible side effects, and why it’s important to stick to your management plan. Remember that certain lifestyle factors like stress, sleep patterns, and alcohol can affect your seizures. It’s a good idea to talk openly with your doctor and keep up with regular check-ups to monitor your condition and make any necessary changes to your treatment. Having a support system of friends, family, or people in epilepsy support groups can be really helpful – they can provide emotional support and understanding.

Lastly, it’s great if you can educate yourself and others about epilepsy. By doing this, you can help reduce stigma and misunderstandings while raising awareness and promoting inclusivity. By managing your epilepsy and staying informed, you can live a fulfilling life.

Transitioning from a paediatrician to the adult medical world can be hard. It is a good thing to get help when you need it, Epilepsy ACT can be a great source of information to help you through this transition.

Podcast:

Available from Spotify, Apple Podcasts, or directly from at IveGotThis.one, I’VE GOT THIS! OWNING MY EPILEPSY is a podcast series that delves into the experiences and challenges of young adults living with epilepsy. Meet two such young adults, Rosie and James, as they team up with Neurologists Professor Scheffer and Dr Parratt to share insights and answer your questions about epilepsy in this 8-episode series.

Podcast links:

Alcohol

Epilepsy shouldn’t stop you from having the occasional beer or two or a glass of wine with dinner. Most people with epilepsy can drink a moderate amount of alcohol. Moderate drinking means having 2 standard drinks a day.

A standard drink is equal to:

Be aware of the quantity of alcohol you drink and don’t let anyone persuade you to drink more. Alcohol and antiepileptic medications interact in specific ways. AEDs can make you more sensitive to the sedating effects of alcohol while alcohol reduces the effectiveness of AEDs making seizures more likely.

For more information on safe alcohol consumption and standards drinks please see the

Australian Guidelines to Reduce Health Risks from Drinking Alcohol and the relevant FAQ’s.

Driving

If you have epilepsy, you will be able to hold a driver’s licence or learners permit as long as your seizures are well controlled. National guidelines have been developed by epilepsy specialists to assist with the assessment of applications from people with epilepsy. These guidelines are intended to protect your safety and the safety of the community. Each application is considered individually. The period that you must be seizure free before driving depends upon your type of epilepsy and the circumstances surrounding any recent seizure you might have had.

For up to date driving regulations in the ACT contact Access Canberra, Tel: 13 22 81
https://www.accesscanberra.act.gov.au/app/answers/detail/a_id/1581 – Medical Conditions

For more information on driving in Australia please see – Assessing Fitness to Drive – section 6.2 – pg/s 83 to 96

Sex and Family Planning

Lots of people of people worry unnecessarily about whether or not it is safe to have sex when they have epilepsy or when their partner has epilepsy. Millions of people living with epilepsy either their own or that of a partner will happily attest to the fact that their sex lives are just fine.

For most of us sex is an important part of our lives and worrying about our sexual abilities or about our sexual performance can lead to sexual problems. So if you do experience a loss of libido or sexual energy speak about it with your doctor. It may just be that the AEDs you are taking are contributing to a reduced desire for sex. If this is the case it is usually easily remedied. There is evidence that some epilepsy syndromes can reduce libido. It may not be a great worry to some people, but it can be for others. It’s possible that a person with epilepsy will feel less like sex than their partner. It is therefore important that partners talk openly and supportively to one another about this.

For some men, there is evidence that actual arousal rather than desire can be adversely affected. This was once thought to be a direct outcome of particular anti-epileptic drugs (AED’s) for the particular people taking them. It is now understood that for some people it is a direct consequence of their epilepsy. If you have experienced this, tell your doctor. While it is not necessarily something that can be fixed instantly, it is certainly possible that some of the newer AED’s might be more helpful or that some of the newer medications available for rectifying sexual dysfunction might be of help.

Sex is a big part of our lives. Sexual thoughts and feelings are a constant part of normal adult life. It is nevertheless, for many of us, a difficult matter to raise with a doctor or counsellor. Nonetheless, if you have concerns about your sex life and the impact of any aspect of epilepsy upon it, talking about it with your doctor or epilepsy counsellor may be the best thing you can do. If they cannot help you they can certainly support you in finding the solutions that you would want.

If your doctor or epilepsy counsellor dismisses your concerns as ‘nothing to worry about’ because you are too old or too young, or because they feel that sex really isn’t such an important thing in our lives, then tell them that you disagree. Tell them that you are expecting their support and if they feel unable to assist you with your concerns ask them to refer you to someone who can. If you live in a remote area and specialist services are limited, an epilepsy counselor at your local epilepsy association can help you find out what your options are for seeing another specialist.

Source: Epifile: An Epilepsy Management Manual. Epilepsy Australia Ltd. Updated June 2013

Family Planning

Some drugs for epilepsy can reduce the effectiveness of the contraceptive pill and increase the risk of unwanted pregnancy. Your neurologist, gynaecologist or general practitioner can help you decide what is the best form of contraception for you.

If you are a female with epilepsy and planning to become pregnant, pre-pregnancy counselling is very important.

A successful pregnancy will depend on:

Most types of epilepsy are not inherited therefore the risk of passing it on to a child is small. See an epilepsy or genetic counsellor for further information and advice.

Stress

Stress is a normal part of life. In fact we need a certain amount of stress to motivate ourselves and to stay healthy. It’s how we manage the stress in our daily lives the pressures of financial survival, work, travelling in crowded cities and fulfilling our personal responsibilities that is so important in keeping balance in our lives.

For people with epilepsy there will be additional, associated stresses. These include the need to take medication regularly and the unpredictable nature of seizures, and there may be any number of difficulties to overcome in gaining and retaining a driver’s licence, dependency on others for transport and other help, difficulties with work, difficulties with memory and so on.

As well as taking your prescribed medication, stress management techniques including relaxation and breathing, exercise, time management, assertiveness training and anxiety management may help you better manage your seizures by better managing your general levels of stress.

Extreme stress, however, may lower your seizure threshold and trigger seizures. It is important to recognise the signs and symptoms of harmful levels of stress and to employ strategies that you find helpful in reducing it.

Such strategies can include:

A variety of relaxation techniques exist which aim to relieve the stress and tension and tension in our lives. However certain relaxation techniques (namely meditation) have been reported to be potentially dangerous for people with epilepsy. Lowered blood pressure and brain electrophysiological arousal can be triggered which are associated with triggering seizures in some people.

Reporting for The Epilepsy Report, Michelle Bellon, PhD, from the Department of Disability Studies at Flinders University, SA reviewed popular relaxation techniques for people with epilepsy, looking at the benefits, as well as the potential risks, of the various techniques.

You can read the article by clicking here.

Sports and Leisure

When people are busy and active they are less likely to have seizures. When choosing a sport or leisure activity, give some consideration to your type of epilepsy and your degree of seizure control. Some activities involve a greater risk than others but with appropriate safety precautions most risks can be minimised.

High risk activities

Scuba diving and boxing are considered to be high-risk activities and should only be considered if your seizures are very well controlled. Activities such as bungy jumping are probably best avoided.

Night clubbing

If you enjoy the social atmosphere of nightclubs, being diagnosed with epilepsy does not mean you have to give up going out with your friends. Strobe lighting or flashing lights can in some people, trigger seizures. This is known as photosensitive epilepsy. However it is quite rare and affects only a very small number of people with epilepsy. Nightclubs and DJs generally display warnings if strobe lighting is used. If this is a trigger for you it would be advisable to avoid such clubs. If flashing lights make you feel uncomfortable, closing or covering one eye can lessen this discomfort.

Travel

Any holiday requires planning. Having a regular supply of medication is most important for anyone travelling away home for any period of time. Always carry a copy of your prescription with you. If something unforseen happens to your medication you can have it replaced immediately.

Travelling overseas requires some extra planning:

Take enough of your medication in its original packaging to last your holiday
If you are going for less than six months, you should take enough medication to last the whole time
Pharmacists are able to dispense the full amount of the script, including all the repeats at once if the script is endorsed by the doctor with the words Regulation 24 or Reg 24
Carry a letter from your doctor listing your medications, including their generic (chemical) names, since brand names may vary between countries. This is useful for customs and in case you need to get tablets while you are away
If your seizures are not fully controlled and/or you are travelling alone, ask your doctor for a brief letter about your condition in case you need to see a doctor while you are away
Always carry extra medication in your hand luggage in case your main luggage is lost or delayed
Find out if vaccinations are recommended for the country or countries you intend to visit. Most vaccines are safe for people with epilepsy with the exception of malaria. Your doctor will be able to discuss your options with you
Avoid excessive alcohol during the flight
Take out travel insurance for the duration of your trip. While epilepsy is considered a pre-existing condition, seizure control can be taken into account. Even if a higher premium is charged, it will be far less than paying for medical treatment overseas

Taking medication on long haul flights

Long distance travel can disrupt your sleep pattern and your medication routine. What to do when changing time zones depends on how many hours the change will be. Former President of the Epilepsy Society of Australia Dr Ernie Somerville offers the following advice based on medications taken twice a day:

If the time at your destination is less than 4 hours ahead of or behind your home time take your medication in the normal way
While on the plane, take your medication about 12 hours apart. This applies if your destination is between 8 and 16 hours ahead or behind your home time. The easiest way to figure this out is to compare the time at home and the time at your destination, ignoring whether it is am or pm. If you take your medication more than twice a day, talk to your neurologist
There are epilepsy organizations in many countries if you need advice or referral. Epilepsy ACT will be able to give you the relevant contact details

Team and contact sports

Your epilepsy should not stop you from playing team and contact sports unless the epilepsy was caused by serious head injury. Some people choose to wear head protection while playing regardless of whether or not they have epilepsy. It is always a good idea to wear protective headgear in contact sports regardless of your health status.

Watching TV

Unless you have been diagnosed with photosensitive epilepsy, watching television, using a computer or playing video games should not affect you. However, if your seizures are triggered by photic stimuli there are things you can do to minimise the risk of seizures. Watch TV in a well-lit room and do not sit too close or directly in front of the screen. When playing computer games, sit 2.5m from the screen, again in a well-lit room and reduce the brightness of the display. If a seizure is to occur it is more likely to happen within the first 30 minutes of play. Generally, playing the game for prolonged periods doesn’t pose a risk unless it is for so long that you become sleep deprived. Sleep deprivation is a recognised seizure trigger.

Source: Epifile: An Epilepsy Management Manual. Epilepsy Australia Ltd. Updated June 2013