About Epilepsy
Epilepsy is a neurological condition that anyone can develop at any time of life. While it can be genetic, it can also be the result of structural changes to the brain either during its growth or because of illness or injury.
A seizure happens when groups of nerve cells in the brain, known as neurons, send out lots of signals at the same time, and much faster than usual. That uncontrolled blast of electrical and chemical communication triggers other parts of the body and brain to react.
When this imbalance happens throughout the brain it's categorised as generalised epilepsy, and when it happens in a localised area it's known as focal epilepsy.
Getting A Diagnosis
While it’s possible to experience a seizure without it being epilepsy (seizures can be ‘provoked’ by certain medical events) experiencing at least two unprovoked seizures more than 24 hours apart is typically grounds for further investigation.
If you’ve presented at the Emergency Department and the attending physician thinks you might have epilepsy, they will usually refer you on to a specialist. If you suspect you’ve had a seizure, make an appointment with your GP to discuss.
The process of diagnosis will normally include a combination of some, or all, of the following:
Epilepsy Treatment
The next step after an epilepsy diagnosis is to explore the best treatment options for your individual circumstances – in the first instance, that typically means medication. Around 60-70% of people will gain seizure control with epilepsy medications but, where at least two drugs have been tried without success, other treatments may be considered.
If, at any stage, you’re looking into alternative avenues, such as complementary therapies, it’s important to discuss with your treating doctor.
While many of the treatment options used today are long established, you may wish to investigate opportunities to participate in experimental trials and research programs. To find out more, visit our Research and Studies page.
Anti-seizure Medications
Epilepsy is usually treated with anti-epileptic drugs (AEDs). While their goal is to prevent or at least decrease the number, severity, and/or duration of seizures, they do not ‘cure’ epilepsy.
Whether you have been prescribed a medication, or a combination, taking them regularly and as prescribed is critical.
Your doctor will select the best drug for you based on not only your seizure type, but on factors including your age, gender, general health and life stage – taking into consideration issues such fertility, pregnancy and menopause.
Many people will only have to work through one or two medications before finding the most effective option for their seizures; for others, it can be a lengthy process of trial and error.
It’s common to experience some side-effects which, depending on the medicine you’re taking, might include:
- Tiredness
- Headaches
- Nausea
- Mood changes
- Dizziness
- Insomnia
In many cases, these side effects will disappear over weeks or months, as your body adjusts to the medication. However, if they’re long-lasting or are having a significant impact on your wellbeing and quality of life, it’s important to talk to your doctor. It may be as simple as an adjustment to your dosage or the timing of doses, or you might need to trial an alternative – there are many options out there, with newer generations of AED often having fewer side effects, so don’t be afraid to ask for a review.
While epilepsy treatment can be lifelong, some people with long-term seizure freedom may be able to adjust or withdraw medication over time. As ever, this should only be done under the advice and supervision of your clinician.
Epilepsy Surgery
When two or more medications have not been successful and seizures are significantly limiting your life, or causing serious injury or risk of death, an evaluation for epilepsy surgery may be considered. Suitability will depend on factors including the cause of your seizures, the size and position of the area affected and any specific risks of complication.
If surgery is possible and something you wish to explore, you’ll undergo extensive testing and counselling to ensure you understand the potential risks and possible outcomes. A range of tests is used to assess suitability for surgery, which can include MRIs, EEGs, PET and SPECT scans and neuropsychology as well blood and genetic testing.
Surgical options for epilepsy include:
- Removing the area of the brain where the seizure originates
- Separating the epileptic region of the brain to stop the spread of seizures
Each surgical treatment carries its own risks and benefits. Your epilepsy team will help you to decide the best option for you.
In some patients who are not suitable candidates for epilepsy surgery, inserting a pacemaker-like implant to modulate electrical activity can help with seizure reduction. These ‘neuromodulatory’ techniques include vagal nerve stimulation and deep brain stimulation.
While epilepsy surgery is suitable for around 30-40% of patients with refractory (uncontrolled) epilepsy, even after surgery you should expect to continue anti-seizure medication in at least the short to medium term.
Want to know more? Get in touch with our Living Well team.
Dietary Therapy for Epilepsy
Epilepsy dietary therapy is now a recognised treatment for epilepsy in both children and adults and is offered by many specialists and epilepsy clinics. These diets should only be initiated under the supervision of a dietitian and with the approval of treating doctors and specialists.
Plans are individually tailored, based on factors such as age, growth (for children) and activity level.
An estimated 40-50% of children who start the keto diet have 50% fewer seizures. And roughly 10- 20% of children achieve more than a 90% reduction in seizures.
Classical Ketogenic Diet
The ketogenic diet for epilepsy is now referred to as the ‘Classical’ Ketogenic Diet, differentiating this carefully ratio-controlled diet from those popular mainstream diets broadly referred to as ‘ketogenic’.
A dietitian devises meal plans that provide exact ratios of the required fat, protein and carbohydrate for each meal. For example, 4:1, 3:1 and 2:1. In a 4:1 ratio, there is 4 times as much fat as there is protein and carbohydrate combined. Recipes indicate the exact amount of each ingredient and food must be strictly weighed and measured.
Modified Ketogenic Diet (MKD)
This is less restrictive than the Classical Ketogenic Diet, allowing all protein-rich foods such as meat, chicken, eggs and fish to be eaten to appetite. Fats are encouraged, food does not need to be weighed and recipes do not need to be precise.
Carbohydrate foods are counted and spread throughout meals with the goal of keeping within the daily gram limit set by the dietitian.
The MKD is often used for adolescents and adults as it allows for more flexibility.
Have more questions? Contact our Living Well team
Medicinal Cannabis for Epilepsy
According to the Therapeutic Goods Administration (TGA) – the regulatory body for prescription medicines in Australia – evidence supporting the use of medicinal cannabis is strongest in the treatment of some childhood epilepsies. Cannabidiol, manufactured as Epidyolex®, is only the second medicinal cannabis drug registered for supply in Australia, and the first one to be subsidised by the Australian Government on the PBS. It is indicated for use, in conjunction with other medications, for seizures associated with Lennox-Gastaut and Dravet syndromes and can be prescribed by any medical practitioner in Queensland.
Most medicinal cannabis products are ‘unregistered products’, which means they are not listed on the Australian Register of Therapeutic Goods (ARTG). Where patients need access to therapeutic goods that are not included in the ARTG, practitioners must apply via the Special Access Scheme (SAS) and Authorised Prescriber Scheme (AP).
You cannot legally produce your own cannabis for medicinal use and there is no amnesty for medicinal cannabis in Queensland. That means you are not exempt from legal prosecution if you obtain illicit cannabis, even for medicinal purposes.
Because the evidence for medicinal cannabis is limited, it is usually only prescribed after known treatments have been tried and failed. Epilepsy Queensland supports the need for further clinical trials to establish the evidence base for effectiveness and safe use.
Interested to find out more? Reach out to our Living Well team.
Epilepsy in Adulthood
While epilepsy is often perceived as a childhood condition, it can persist into adulthood and even develop later in life, bringing with it unique challenges and impacts on daily living.
What You Need to Know
As seizures can cause loss or impairment of awareness and motor control, there are of course risks associated with driving. However, responsible individuals with well-managed epilepsy may be considered fit to drive a private vehicle – dependent on observing the appropriate seizure-free period and compliance with treatment and other recommendations.
Conditional licences rely on individual responsibility for the management of their condition, including compliance with treatment, in conjunction with the support of a health professional and regular review.
Your first seizure
Following an unprovoked first seizure, the Australian recommendation is a driving ban for a minimum of 6 months for private vehicle licence holders.
It’s good medical practice for any person with initial seizures to be referred to a specialist, for accurate diagnosis and treatment. With regard to licensing, the treating doctor/general practitioner may liaise with the driver licensing authority about whether the criteria are met for driving a private vehicle, but only a specialist may do so for a commercial vehicle driver.
You can access additional guidance from Austroads.
Having seizures may make gaining and maintaining employment more challenging, but not impossible. Your epilepsy is only relevant if you have seizures that are likely to interfere with your ability to do your job or if it places you, or others, at risk in the workplace.
Being informed about your options, rights and how to speak about epilepsy (should you choose to) will improve your chances of securing employment.
Disclosing epilepsy in the workplace
Misconceptions about epilepsy and fear of stigma may lead to reluctance to tell your employer that you live with epilepsy and/or experience seizures. While your health is a personal and private issue, if people in your workplace are aware of your condition it may reduce risks associated with a seizure. If your direct supervisor/s are informed, they can then make any necessary accommodations for you, including adjustments to working hours and workload.
To comply with their responsibilities under the Workplace Health And Safety Act 2011, employers need to be aware of any condition that requires them to change working practices or the work environment to enhance safety.
If you do choose to tell your employer, they are legally obligated to keep the information confidential and not reveal that information to anyone else without your permission.
When is disclosing epilepsy lawfully required?
Certain jobs will require an employee to disclose any medical conditions and/or medical history. There may also be a requirement for a health and fitness check before commencing a role. In most cases, this is for jobs that have a legitimate requirement for the person undertaking the position to be physically fit.
Medical forms are legal documents that must be filled out as accurately as possible. In such circumstances, failing to disclose your epilepsy can be genuine grounds for dismissal.
Employment rights for people with epilepsy
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 Australian Human Rights Commission (AHRC).
AHRC undertakes a wide range of activities to assist individuals and organisations 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.
If you believe you have been unfairly treated in the workplace due to your epilepsy, contact our teams for a confidential discussion on 1300 852 853.
Living with epilepsy can be challenging. Sometimes you might feel anxious, irritable or angry, tired or depressed – you might struggle to look after yourself or participate in your usual activities. It’s normal to feel this way sometimes, but it’s important not to ignore these feelings if they’re intense or go on for a prolonged period.
For some people, living with epilepsy can negatively impact self-image and contribute to low self-esteem. That can happen because of fear of misunderstanding or judgement from others, feeling embarrassed or worried about having a seizure in public, the impact of losing independence, changes to your social and workforce participation and sexual problems, or relationship challenges.
Whatever you’re feeling, there’s support available. Seek help from a trained professional, such as a clinical psychologist or a qualified counsellor – ask your GP or neurologist for a referral.
Alternatively, if it would help just to have a chat with someone who understands life with epilepsy, or to connect with a peer support group, reach out to our Living Well team on 1300 852 853.
Certain issues related to epilepsy and its treatment are unique to women.
Your period
Increased seizures around the time of the menstrual period are called Catamenial epilepsy. In some women, there are two peaks in seizure occurrence – one peak at the time of ovulation and another just before or during your period. This occurs because of direct hormone effects on epilepsy and also the effects of cyclic hormones on medication metabolism.
Osteoporosis
Antiepileptic drugs, including phenytoin, carbamazepine and valproate, can increase bone turnover which may lead to osteoporosis and increase the risk of a bone fracture. It’s important to ensure adequate intake of dietary calcium and that Vitamin D levels (normally obtained from exposure to sunlight but can be supplemented if necessary) are sufficient.
Contraception
It’s important to ask your doctor about any possible problems with the oral contraceptive pill or implanted hormones, as some epilepsy medications may enhance metabolic breakdown and increase the risk of an unexpected pregnancy.
Some oral hormones can lower blood lamotrigine levels and may increase the risk of seizures.
Pregnancy
If you’re thinking about starting a family, it’s essential to talk to your neurologist about what your treatment regime might look like throughout pregnancy and when your baby arrives. It’s important to do this before you become pregnant, as you may need to change to a medication that poses less risk to your unborn baby. Valproate, for example, must be avoided in women of childbearing age.
For more information, download the Fact Sheets below.
The impact of epilepsy varies from person to person, and each person’s experience of epilepsy is unique. However, there are often issues and concerns that are specific to age groups and gender.
Sexual Function and Fertility
People living with epilepsy have a lower rate of reproduction when compared to the general population, with men more adversely impacted than women.
Investigations continue into the possible causes for this disparity, but possible explanations include:
- Some men living with epilepsy may have decreased interest in sex, decreased physical arousal and decreased ability to achieve orgasm. This may be affected by hormonal changes (testosterone and others) due to altered brain function related to epilepsy. Research suggests this is particularly evident in focal epilepsy.
- Some epilepsy medications may also decrease circulating testosterone. Especially ‘enzyme-inducing’ medications such as phenobarbital, phenytoin, carbamazepine, and primidone.
- Men living with epilepsy may experience reduced fertility due to lower sperm count or impaired sperm motility.
- Medications to treat depression and anxiety can impair sexual function in men living with epilepsy.
If you have concerns about your sexual functioning or fertility, it is important to discuss this with your general practitioner or neurologist. DO NOT stop taking epilepsy or other prescribed medications until a review has been carried out by your treating doctor- they can best guide you how to make a monitored and careful change, if that is deemed to be necessary.
*This information has been abstracted from the Epilepsy Foundation US.
Epilepsy is very common in people over the age of 60, in fact it affects children under the age of 5 and people over 60 more than any other age group. However, given its clinical presentation can resemble other conditions common in the older population, such as stroke, head injury, brain tumours, cardiovascular disease, or dementia, it can be more challenging to diagnose.
For older people, epilepsy can pose some additional challenges:
- Higher sensitivity to the toxicity of anti-seizure medications
- Medication side effects of confusion, disorientation and tiredness
- Adverse interactions between anti-seizure medications and other medications
- Increased problems with memory due to medication
- Increased risk of falls and injury, depending on seizure type
- Increased home safety requirements.
Download your guide to making the most of later life with epilepsy.
Learning to Live Well with Epilepsy
Developing epilepsy, or caring for a child with epilepsy, affects different people in different ways. Whether you need information, or feel overwhelmed by everything you’ve learned, there is support available.
