Melbourne, Australia, 17 July 2025 – The Australian epilepsy community is urging healthcare professionals and the general public to do more to support people living with epilepsy. The call follows new survey findings showing that many people living with epilepsy report high levels of anxiety and depression — conditions that are neurologically linked to stress, exhaustion and sleep deprivation, which are among the top reported seizure triggers.1,2 This contributes to what is often described as a 'vicious life loop', where mental health challenges and seizure activity continually reinforce one another.
According to the data collected from the survey:
- Around 20% of respondents reported living with depression.1 This suggests the prevalence of depression among people with epilepsy is almost twice as high than that reported in the general population.3
- Approximately one in six (15%) respondents reported living with an anxiety disorder.1
- Around 62% of respondents reported stress as the primary trigger for their seizures.1
- Over half (55%) of respondents also reported sleep deprivation and exhaustion among the top causes for seizures.1
- Approximately four in 10 (39%) respondents were under-informed on their condition.1
- Over half (51%) of respondents reported living with low-to-average quality of life.1
The ongoing cycle of these challenges creates a 'loop' that is difficult to break without proper treatment and emotional support. The combined effect of these issues can be even more pronounced in people living with drug-resistant epilepsy.
Drug-resistant epilepsy (DRE) is defined as failure of at least two appropriately chosen anti-seizure medications to achieve sustained seizure freedom.4 Around one in three Australians diagnosed with epilepsy have tried two or more appropriately chosen anti-seizure medications and still have not achieved seizure freedom, classifying them as living with DRE.5
Associate Professor Lata Vadlamudi, a Neurologist specialising in epilepsy at the Comprehensive Epilepsy Program at the Royal Brisbane and Women's Hospital, says that seizures are just the visible part of a much larger issue.
"Beneath the surface lie critical and often overlooked challenges — mental health struggles, stigma, reduced productivity and employment, diminished quality of life, and most tragically, an increased risk of death," said A/Professor Vadlamudi.
She emphasised that for people whose seizures are not well controlled with anti-seizure medications, early referral to a Comprehensive Epilepsy Program is crucial.
"To break the 'vicious life loop' so many people with epilepsy experience, we need to provide holistic care and support across multiple areas. That's what the survey findings make clear," she said.
A/Professor Vadlamudi added that Comprehensive Epilepsy Programs offer timely specialist review, a multidisciplinary team approach, and access to treatment options beyond anti-seizure medications.
Carol Ireland, Chief Executive Officer at Epilepsy Action Australia, said despite epilepsy being one of the most common brain disorders, there is little understanding of the 'vicious circle' of complex challenges that can be caused by epilepsy.
"The emotional and psychological toll of epilepsy extends far beyond what most people imagine. Particularly for those with more complex forms of epilepsy, like drug-resistant epilepsy," said Ms Ireland.
"There are a lot of efforts taken by the epilepsy community and our partners, like LivaNova, to address the gaps in our current understanding and treatment of people with epilepsy and drug-resistant epilepsy. We hope that by bringing these challenges to public attention we can foster a deeper understanding of this condition and the support it requires," said Ms Ireland.
Angela Spencer, clinical nurse consultant for the Comprehensive Epilepsy Program at Metro North Health, reiterates the importance of tailored care in efforts to break the cycle of seizures, stress and fatigue in people living with DRE, and ultimately improve patients' quality of life.
"Each patient I support has a unique experience with their DRE. That's why developing personalised treatment and care plans is so critical," said Ms Spencer.
"At a comprehensive epilepsy centre, I work closely with patients to understand their specific needs. It can be helping them to manage seizure triggers, address the emotional and psychological toll or educate them on therapies, like Vagus Nerve Stimulation Therapy, to help them break the grip of DRE."
The survey findings reinforce LivaNova's Mind the Treatment Gap initiative launched last year, which focused on addressing the significant treatment gap in drug-resistant epilepsy (DRE) management. The campaign emphasised the importance of early referrals to comprehensive epilepsy centres, where alternative treatments like Vagus Nerve Stimulation (VNS Therapy™) can be explored for those who have not responded to anti-seizure medications.
Earlier data indicated people were somewhat under-informed about alternative treatment options, including epilepsy surgery, VNS Therapy, ketogenic diet and other therapies.3
Epilepsy experts recommend that Australians with drug-resistant epilepsy should be referred to comprehensive epilepsy centres for diagnostic, re-evaluation and targeted management as soon as possible, to optimise their treatment response. These centres are best equipped to evaluate people that are not responding to anti-seizure medications and have better chances at bridging the treatment gap.
