Epilepsy Diagnosis: A Practical Guide for Australians

How to know if you have epilepsy

Nobody can tell from a checklist, but these steps get you to a proper assessment faster.

• Write down what happened before, during and after each episode, including the time, the place and how long it seemed to last.
• Ask anyone who saw the episode to describe it, because the person having a seizure may not remember it.
• If it is safe and the person agrees, record any future episode on a phone so the specialist can see the movements for themselves.
• Note anything that happened beforehand, and bring a list of everything you take.
• Book a GP appointment and ask for a referral to a neurologist or paediatrician, depending on the age of the person.

Put your notes in a single folder on your phone so you can open them in the appointment.

Epilepsy diagnosis in Australia: the usual steps

The path can vary, but the steps often look like this.

1. 1See your GP and describe what happened. Bring witness notes or video; the doctor will ask for a description of what the seizure looked like (Epilepsy Foundation).
2. 2Have a physical examination and pathology tests. The Epilepsy Foundation lists both among the tests often used.
3. 3Ask for a referral to a specialist. A neurologist, or a paediatrician for children, decides whether the episodes are epileptic seizures.
4. 4Complete the tests your specialist orders. These may include an EEG, a CT scan or an MRI scan.
5. 5Go back to talk through the results. Ask what the results mean for you and what the next appointment will cover.

For adults, see whether you can develop epilepsy later in life.

Epilepsy EEG: what the test shows

An electroencephalogram (EEG) records the brain’s electrical activity through small sensors placed on the scalp.

• Your specialist may ask for an EEG as part of the work-up, alongside other tests.
• If your specialist mentions a temporal lobe epilepsy EEG finding, ask what it means for you.
• Ask the clinic how to prepare, for example whether to wash your hair beforehand or bring a list of medicines.
• Ask your specialist how to read an EEG that looks normal compared with an EEG in someone with epilepsy, because the meaning depends on your history.
• Remember that the EEG is one piece of evidence; your doctor weighs it with the description of your seizures.

Epilepsy MRI and brain scans compared with normal results

Brain scans give your specialist a picture of the structure of the brain, and the Epilepsy Foundation lists both CT and MRI among the tests often used.

A scan is one part of the picture, so ask your specialist to explain what an epilepsy brain scan result means in your case.

TQN Care support workers help with personal care, community access, respite and help around the home across Sydney, Melbourne and surrounding areas (NSW & VIC). Tell us what you need and we will call you back.

Blood test for epilepsy and genetic testing

Pathology tests are on the Epilepsy Foundation’s list of tests often used, but they work differently from the EEG and scans.

• Ask your doctor what a blood test for epilepsy is checking for in your case.
• Epilepsy genetic testing is a specialist decision, so ask your neurologist whether it is relevant to your situation.
• If genetic testing is offered, ask who will explain the results and whether it matters for other family members.
• Ask what each test is for before you have it, so the results make sense when they arrive.

Epilepsy monitoring unit and further investigation

Sometimes the first round of tests does not give a clear answer, and your specialist may suggest further investigation.

• An epilepsy monitoring unit is a specialist hospital service your neurologist may suggest for further investigation.
• Your neurologist decides whether this is needed and which hospital service is suitable.
• Ask what to bring, how the stay works and whether a support person can be with you.
• Ask how long you should plan to be away from work, school or home, since this depends on the service.

Epilepsy misdiagnosis and how many seizures before an epilepsy diagnosis

A specialist reviews the whole picture before making a diagnosis.

• The Epilepsy Foundation says epilepsy is diagnosed after at least two unprovoked seizures, so ask your doctor what a single seizure means for you.
• Ask your doctor whether your episodes were unprovoked or had a cause that can be identified.
• If you are unsure about a diagnosis, ask your GP for a second opinion from another specialist.
• Keep copies of every report and scan so a new specialist can see your full history.

Learn more in our guide on seizure vs epilepsy, and read what epilepsy is for the definition.

Epilepsy diagnosis for children and adults

Who you see depends on the age of the person, but the questions are the same.

• For a child, your GP will usually refer you to a paediatrician; read more in our guide to childhood epilepsy.
• For an adult, your GP will usually refer you to a neurologist for the tests and review.
• Parents and carers can keep a diary of episodes, including what school staff or relatives saw.
• Ask whether a conversation about whether you can grow out of epilepsy is relevant to your situation.

Epilepsy diagnosis under the NDIS

If you meet the NDIS access requirements, the NDIS may fund supports that help with daily life. Your doctor arranges the diagnostic tests.

• Read our guide is epilepsy a disability for how epilepsy relates to the NDIS.
• Keep diagnosis letters, specialist reports and your seizure management plan together as evidence.
• Read about high intensity supports if seizures need trained support during daily tasks.
• Read about related conditions, such as migraine and epilepsy.

When to talk to a GP or specialist

Seek advice early and do not wait for a second episode.

• You or someone you care for has had an episode of unusual movements, staring or loss of awareness that you cannot explain.
• A seizure has happened for the first time, even if the person seems to have recovered.
• Episodes are happening more often, or look different from before.
• You are unsure about an earlier diagnosis and would like it reviewed by a specialist.
• You are worried about safety at home, at work or while driving, and want advice from your doctor.

Call 000 in an emergency, and follow the person’s own seizure management plan if they have one.

TQN Care support workers help with personal care, community access, respite and help around the home across Sydney, Melbourne and surrounding areas (NSW & VIC). Tell us what you need and we will call you back.

Your next step

Once you have a diagnosis, day-to-day support can make a difference too. TQN Care provides practical help at home and in the community, including high-care and complex support for people with higher needs. We follow the person’s own seizure management plan, and you can start with a referral, and we will call you back to talk through what you need.