Looks like epilepsy but isn’t: The disease that is deadly, largely undiagnosed and untreated

One in four people admitted to hospital for uncontrolled seizures 
do not have epilepsy. Image: Shutterstock

One in four people who are tested for epilepsy do not have the disease, but instead have a psychological condition called psychogenic non-epileptic seizures (PNES).

Today (21 July) in the prestigious journal, Neurology, Monash researchers explain the disease, which if it goes undetected can be deadly.

About one quarter of people who are admitted to hospital for an epilepsy evaluation because they are experiencing uncontrolled seizures do not have the disease. Instead, what they have is psychogenic non-epileptic seizures (PNES), which manifests with what appear to be epileptic seizures and actually but have a psychological rather than a neurological basis, with the patients often having a history of early life abuse. These events, also known as “functional seizures” were recognised as “hysteria” by Sigmund Freud in Viennese women, and formed the basis for his psychodynamic theories.

This disorder has been poorly understood, researched and treated by the medical profession, and is often associated with significant stigma. However, new research reveals that patients with PNES have an almost three times increased risk of dying, with for people under 40 years this risk being approximately 8 times increased.

According to Professor Terry O’Brien, Head, Department of Neuroscience & Head, Central Clinical School, Monash University, PNES is often misdiagnosed by clinicians because of the similarity of their attacks to epilepsy, and treated inappropriately with anti-epileptic drugs and even on occasions ICU admissions. Their management “falls between cracks” between neurologists and psychiatrists, and they often end up poorly managed by the health care system.

“Patients present to neurologists clinics and when diagnosed as not having epilepsy are usually discharged, but most psychiatrists are also unwilling to manage them because of its physical manifestations such as seizures,” he said. “The condition is often under diagnosed, often inappropriately treated and those with it can struggle to find someone to treat it. To further confuse matters, up to one in five people with PNES also suffer from epilepsy.”

Professor O’Brien works with Dr Toby Winton-Brown, a neuropsychiatrist at Monash University and Alfred Health, who has started Australia’s first PNES Clinic in Australia at the Alfred Hospital. The clinic is so over-subscribed that it already has a greater than 6 months waiting list despite only being started for the last year.

The study, led by Professor O’Brien with colleagues from the Royal Melbourne, St Vincent’s, Alfred and Austin Hospitals and The University of Melbourne, found that while mortality is raised in people with epilepsy - having a PNES increases the risk of death in both those with just PNES and those who also have epilepsy.

The study looked at over 5500 patients admitted into the video epilepsy monitoring units in three metropolitan Melbourne hospitals over a 20-year period from 1995. Mortality was determined in patients diagnosed with PNES, epilepsy or both conditions, by linkage to the Australian National Death Index (NDI). Lifetime history of psychiatric disorders in PNES was determined from formal neuropsychiatric reports.

Of the 5,508 patients enrolled one in 8 (674 or 12.5%) were diagnosed with PNES, slightly more than half (3064 or 55.6%) with epilepsy, while 175 (3.2%) were found to have both conditions, and 1,595 (29.0%) received other diagnoses or had no diagnosis made.

The researchers found that patients with PNES are 2.5 times as likely to die early that the general population at their age, while people less than 30 years of age had an 800% increased risk of dying. Amongst deaths in patients diagnosed with PNES, 20% of deaths in those younger than 50 years attributed to suicide, and “epilepsy” was recorded as the cause of death in 24%.

According to Professor O’Brien, people with PNES have a similar mortality rate to those with drug-resistant epilepsy. “This emphasises the importance of prompt diagnosis, identification of risk factors, and the implementation of appropriate strategies to prevent potential avoidable deaths,” he said.=

Learn more:

• Nightscales R, McCartney L, Auvrez C, ... O’Brien TJ, Mortality in patients with psychogenic nonepileptic seizures. Neurology® 20 Jul 2020;00:1-10. doi:10.1212/WNL.0000000000009855
• Podcast: 11 Aug Neurology interview with Terry O'Brien

For Media Enquiries please contact:
E: media@monash.edu
T: +61 (0) 425 725 836