Frequently Asked Questions

Epilepsy is a medical condition that affects the brain and causes seizures. There are many different types of seizures but they are due to abnormal electrical activity somewhere in the brain. Everyone’s brain sends electrical messages to their body, which tell the body what to do. Seizures happen because of a disruption to electrical activity in the brain, leading to a change in a person’s movement, behaviour, level of awareness and/or feelings.

We know that structural abnormalities in a developing brain; lack of oxygen during birth or a stroke; brain tumours; head injuries and infections such as meningitis or encephalitis can cause epilepsy. We know that diabetes and Alzheimer’s disease can lead to epilepsy and it can be hereditary. However, we don’t know yet what causes epilepsy in 50% of people with the condition.

There are over 114 different seizure types and over 100 different syndromes associated with seizures. Some of them are commonly known as: Focal seizures, Focal awareness seizures, Focal seizure with impaired awareness, Generalised seizures, Absence seizures, Tonic- clonic seizures, Myoclonic seizures, Atonic seizures, Tonic seizures.

Seizures can be irregular and unpredictable. This means they can occur as frequently as every day, or just occasionally in a lifetime. Medication is the most effective way to prevent or reduce the number of seizures you have.

This will depend on the individual circumstances and is a judgement call that should be made with the safety of the person experiencing the seizure and the person assisting kept in mind.

It is advised that you roll a person experiencing a tonic-clonic (convulsive) seizure on their side as soon as it is safe to do so.

The key Seizure First Aid steps are the following:

1. Time the seizure
2. Protect the person from injury
3. Roll onto side if unconscious
4. Support head if seated
5. Redirect if confused
6. Reassure and re-orientate
7. Stay with the person

DO NOT restrain the person

DO NOT put anything in their mouth

DO NOT give food or drink until they have recovered

Intranasal and Buccal Midazolam are used for the Emergency Management of prolonged seizures. Midazolam (Hypnovel) is a short acting benzodiazepine medication like Diazepam (Valium, Antenex, Ducene) and Clonazepam (Rivotril, Paxam). The prescribing doctor will write an emergency plan to be followed.

Midazolam used for:

• Emergency treatment/management of prolonged seizures
• Sedation during medical procedures

Midazolam may be prescribed for people with epilepsy who:

• Often have seizures that last longer than 5 minutes
• Have a cluster of seizures that recur close together
• Have a history of seizures lasting longer the 5 minutes
• Live a long way from emergency services
• History of recurrent prolonged febrile seizures/convulsions and are triggered by fever.

Parents and carers should complete education in the administration of midazolam to ensure they are confident in their ability to do so.

Midazolam can be given in the following ways:

• Buccal – Trickled inside the cheek between the lower gums and inner cheek area of the mouth
• Intranasal – Dripped slowly into the nasal passage or sprayed into the nose using a nasal atomiser device. Midazolam is absorbed rapidly via mucosal membranes in the nose or mouth and directly into the bloodstream. It does not need to be swallowed. If swallowed it will be less effective (swallowing is not harmful). Ambulance officers and medical practitioners are able to give midazolam intramuscularly (into the muscle) or intravenously (into the vein).

Epilepsy is not contagious (you can’t catch it from someone who has it). It’s not passed down through families (inherited) in the same way that blue eyes or brown hair are. But someone who has a close relative with epilepsy has a slightly higher risk for it than somebody with no family history of seizures.

There can be many reasons why you’ve started having seizures at age 45. if you’ve had a diagnosis of epilepsy, your neurologist or your GP will have an answer for you. It could be from a brain injury or some structural damage to the brain.

With regards to age of onset, anyone can be diagnosed with epilepsy at any age and the cause is not always clear. Epilepsy is most commonly diagnosed in those aged under five years and those over 60 years. Call our client services team on 1300 850 081.

Driving with epilepsy is dependent on whether your seizures are well-controlled. After your first seizure, a compulsory six-month driving ban is the recommendation in Australia. This does not necessarily mean you will not drive again – although unfortunately for some people with epilepsy this may be the case.

In general, responsible individuals with well-managed epilepsy may be considered by the relevant driver licensing authority to be fit to drive a private vehicle. This is dependent on observing the appropriate seizure-free period and compliance with treatment and other recommendations.

mylicence.sa.gov.au – fitness-to-drive

Dietary therapy is now a recognised treatment for epilepsy in children and adults and is offered by many specialists and epilepsy clinics. This can be beneficial for some people with uncontrolled seizures, however there is no guarantee or way to predict successful treatment prior to trying this method.

You cannot get assistance or seizure alert dogs here in South Australia. There is no governing body that we are aware of for seizure dogs, unfortunately, we can’t vouch for their standards, costs or levels of service. There is:

• Assistance Dogs Australia -1800 688 364 / assistancedogs.org.au
• Centre for Service and Therapy Dogs Australia- 61 458 458 541/www.cstda.com.au

Your GP will refer you to a neurologist to have some tests done and confirm the diagnosis. They often hand your treatment back to your GP to manage and co-consult with you.

Epilepsy and alcohol don’t always mix well. Some medications become ineffective when mixed with alcohol. Sometimes memory is more affected when alcohol is consumed, then medications get missed or sleep becomes interrupted. Some people are fine to have one standard drink a day, while others are not. It is best to ask your doctor for advice or call our Client Services team on 1300 850 081

For most people, missing one dose on a rare occasion is unlikely to cause a seizure. However, the following general recommendations apply:

1. Check the patient information leaflet for instructions
2. In general if usually taken:

Once a day – take the forgotten dose as soon as you remember it; or

Twice a day – take within six hours after it was due

1. DO NOT take twice as much at the next dose time.

Taking a larger dose than normal could cause side effects.

If too much is taken, please call the Poisons Information Centre 13 11 26.

(Please note this varies between medications, so please seek further information from your doctor or pharmacist)

Many people may appear to stop breathing during a tonic-clonic seizure and sometimes do. If it is safe for the person and yourself, you can put them in the recovery position. When the movements stop and seizure is ending, you may need to deliver some rescue breaths until help arrives. If someone always stops breathing when they have a seizure, it is good practice to call an ambulance as soon as possible, don’t wait for the five-minute rule.

It can happen that someone stops breathing while they are convulsing. If it is safe for you to do so, then you may be able to give assisted breaths until the ambulance arrives.

The key Seizure First Aid steps are the following:

1. Time the seizure
2. Protect the person from injury
3. Roll onto side if unconscious
4. Support head if seated
5. Redirect if confused
6. Reassure and re-orientate
7. Stay with the person

DO NOT restrain the person

DO NOT put anything in their mouth

DO NOT give food or drink until they have recovered

Please give the Client Services Team a call on 1300 850 081 and we can clarify any concerns you might have.

In comparison to the general population, the increased prevalence of epilepsy in those with autism (and vice versa) is well established. Whilst statistics can differ according to the source, a recent study estimates this rate of occurrence at approximately 20%.

As epilepsy is a highly individualised, there is no one definitive answer to this question.

There are many contributing factors which may include:

• Seizure type and how frequently they occur
• Occurrence of severe or prolonged seizures
• Type of epilepsy and region of the brain affected
• High doses of medication or multiple medications
• Existing brain damage
• Head injuries related to seizures

Overall, it is known that sustained and repeated seizures affect a person’s quality of life and may negatively affect brain function in the long term. Prolonged seizures are the most dangerous, with possible permanent brain damage. Good seizure control where possible is the best measure against negative impacts to the brain.

Because absence seizures can present as staring episodes it can be quite difficult to determine this type of seizure from daydreaming.

Generally speaking:

• Absence seizures usually start and end suddenly, whilst for daydreaming the mind and attention may wander off gradually.
• Awareness is impaired in an absence seizure, so a child will not be aware they have had a seizure, but are usually aware if they have simply been daydreaming.
• The child won’t respond during an absence seizure and cannot be roused by a gentle touch whereas these actions will bring a daydreamer back to attention.

The response to this depends on the individual as medication suitable for one person, may not be the best option for another person with epilepsy. It is always best to discuss this with your doctor or specialist. Two emergency medications for seizures that are most commonly used in Australia are midazolam and diazepam. Midazolam is preferable because it is shorter-acting than diazepam and can be easily administered via the mouth or nose.

The Epilepsy Centre of SA & NT delivers “Understanding epilepsy and the administration of Midazolam” training to individuals and groups. Contact us on 1300 850 081.

There is a transport Taxi Subsidy Scheme for people with severe disabilities. Your doctor needs to apply for you.  There is a Companion Card for public transport for people with disabilities, if you would like to contact the Client Service Team they can step you through those applications. Call 1300 850 081

In January 2020, the National Disability Insurance Scheme (NDIS), implemented changes to the transport funding under the NDIS, whereby, participants will be able to flexibly use their plan’s core support funding to include costs associated with transportation needs.

As a result of this flexibility, participants should consider whether the option to have their transport funding directly deposited into their bank account is the right option for them.  This option would reduce the flexibility of how the transport funding is accessed.

NDIS participants should direct specific questions about this to their NDIS Planner or speak with our Client Services Team on 1300 850 081.

Most people with epilepsy live a full life. However, the risk of early death is higher for some. We know that the best possible seizure control and living safely can reduce the risk of epilepsy-related death.

Factors that increase the risk of early death include:

• More serious health problems, such as a stroke or a tumor. These conditions carry an increased risk of death and may cause seizures.
• Falls or other injuries that happen because of seizures. These injuries can be life-threatening.
• Seizures that last over 5 minutes. This is a condition called status epilepticus. Status epilepticus can sometimes happen when a person suddenly stops taking seizure medication.

Rarely, people with epilepsy can experience sudden unexpected death in epilepsy (SUDEP). SUDEP is not well understood and experts don’t know what causes it, but they suspect that it is sometimes due to a change in heart beats (rhythm) during a seizure. Sudden death due to heart rhythm changes also happens in people who do not have seizures.

Sometimes people with epilepsy worry that exercise or sports may worsen their seizures.

Exercise is rarely a “trigger” for seizure activity. In fact, regular exercise may improve seizure control. Safely playing sports can also be great for your physical, mental, and emotional well-being.

It is always important to avoid sports-related injuries that can increase the risk of seizures.