The Youth Disability Advocacy Service (YDAS) is seeking young people aged 12-25 to help co-design an online hub that will assist disabled young people learn about and understand their rights, develop their confidence and ability to raise any concerns they may have with their NDIS supports and services, and work with their providers to make sure their voice is heard and needs are understood. Register your interest here….

Sydney University Lambert Initiative for Cannabinoid Therapeutics and Epilepsy Action Australia have joined forces to better understand the lived experience of Australian adults and parents/guardians of a child or person with epilepsy who have tried using cannabis product(s) – illicit and/or prescribed – to treat epilepsy. Read more or complete the anonymous and confidential survey here….

The Centre was opened in October 2023 and is calling for people with an intellectual disability interested in joining the Centre’s Council, making sure that the Centre is doing a good job. More information about the Council and what it means to be a Council Member can be found here…. 

Todd’s paralysis is a neurological condition experienced by people with epilepsy, in which they have a brief period of temporary paralysis following a seizure. Listen to the podcast here….

Perampanel (Fycompa) is currently being assessed in a pilot study of women with perimenstrual catamenial epilepsy. Read more….

This research greatly advances our knowledge of why epilepsy develops and may inform the development of new treatments. Read more….

This review discusses the evidence for possible negative (or positive) interactions between the ketogenic diet and antiseizure medications. Read more….

Researchers have identified new regions of the brain crucial to the formation of long-term memory. Read more…

When it comes to travel insurance, epilepsy is regarded as a pre-existing condition. This may mean that you will pay a higher insurance premium, or you may find it difficult to obtain insurance that will cover your health related needs. This can be very frustrating.

It is best to shop around and do some research before applying for insurance. If you put in an application to an insurance company for cover and get knocked back, that will count against you in applying to other insurers. Have a look at different companies online or phone them direct. You may prefer to use an insurance broker to try to get you the best arrangement. Sometimes you can get travel insurance from your credit card company, union, bank, or even your superannuation fund.

Most have Product Disclosure Statements (online or you can ask for them to be sent to you) which set out the terms and conditions, what cover is included, and the exclusions. It is very important to look at the definition of pre-existing conditions (PEC).

Be sure to discuss your specific circumstances with potential insurers to learn about their insurance coverage terms and conditions. Non-disclosure of pre-existing conditions such as epilepsy may invalidate your insurance policy. Being without travel insurance for health can have significant financial implications and it is important to check your coverage.

It may also be helpful to ask your doctor to write a letter outlining your condition.

Here is some further information that may be of help: The Chronic Illness Alliance has a lot of useful information about travel insurance for people with chronic health disorders. More information about travelling with disabilities and how this may impact on travel insurance can be found on the Compare Travel Insurance website. Plus Travel Insurance That Covers Epilepsy | finder.com.au

During this first appointment the neurologist will mostly like try and obtain as much information about you and your seizures as possible. It is best to go prepared. To prepare for this consultation:

• Write down your symptoms and seizure patterns and keep track of anything that seems to trigger them. This is best done by keeping a diary. Include:
  • What you experience or feel before, during and after a seizure
  • If you have an eyewitness description, describe to the neurologist what you do during a seizure
  • When seizures are most likely to occur – are there any patterns or specific triggers?
  • How often your seizures occur and how long they last,
  • If there have been any changes that might be relevant.
  • Is there anyone else in the family that has seizures?
• Bring along your other health information including medications, allergies, other health conditions.
• Make a list of questions and don’t be afraid to ask questions if you’re confused about something. See our factsheet You and Your Doctor for suggestions.
• Have your previous test results sent to the neurologist or take them with you.
• Bring a friend or family member to help explain about your seizures and make sure you don’t miss anything. The neurologist will probably give you a lot of information, so you may want to take notes.
• Ask about a follow-up appointment so that you know when you’ll next see the doctor and can be prepared.

Make sure you understand your diagnosis and treatment and any further steps you need to take.

Not always. Seizures can also happen related to other medical problems. These problems can include:

• A high fever (children under 6 years)
• Low blood sugar
• Alcohol or drug withdrawal
• Concussion
• Fainting

It can be hard to diagnose epilepsy quickly because other conditions, such as fainting, migraine and panic attacks, can cause similar symptoms. Plus, seizures or similar events are sporadic and often diagnostic testing doesn’t catch these events.

It can really help to document exactly what happened (you will most likely need to get an eyewitness description) so it can be clearly described to the neurologist. Even then, it may not be 100% clear. Unless your EEG shows activity that is consistent with epilepsy or there are other findings from tests that indicate it is clearly epilepsy, your doctor may not be able to give you a clear answer. If this is the case, you will still need to refrain from driving for the specified time period you have been told.