Confronting the challenges of Prolonged Seizures

Prolonged seizures (PS) present a significant and often underrecognized challenge for people living with epilepsy and their caregivers. Not only do these episodes disrupt daily life and cause seizure worry, but they also carry risks of injury, loss of independence, and long-term neurological consequences.

In 2024, an expert group known as the Seizure Termination Project, supported by UCB,  formulated a robust and uniform definition framework for different types of seizures, including PS and status epilepticus (SE), a medical emergency which can lead to brain damage and even death. These were the first international evidence-based clinical definitions to support decision-making to 
reduce the risk of episodes becoming prolonged or of SE.

However, there is still much more to be done to address the unmet needs in PS. New research by UCB recently presented at the International Epilepsy Congress (30th August – 3rd September 2025) highlights the need to re-examine definitions, management strategies, and support systems for those affected by PS—especially as many continue to face unnecessary barriers to timely, 
effective care.

Understanding the burden of prolonged seizures

It’s critical that we listen to those living with PS to understand the challenges. UCB data from a large Global Real-World Point-in-Time study demonstrate the scale of the impact the condition has on people living with it. In a cohort of 2,454 people living with epilepsy who had experienced at least one PS in the prior 12 months, 49% of the sample had experienced SE in the past.

• 27% called emergency services
• 71% required ER admission
• 26% were hospitalized
• 12% were admitted to an Intensive Care Unit (ICU).

Beyond the immediate medical risks, a new survey and series of interviews, conducted with 25 people (≥18 years; ≥3 PS lasting ≥2min within last 3 years) living with epilepsy and 25 caregivers, demonstrates that the impact of PS extends into every aspect of life, including seizure worry, work, social life and relationships.

The research shows that  prolonged seizures are not just longer episodes—they are more severe, less controllable, and more frightening, often resulting in persistent confusion, memory loss, and heightened anxiety or depression. The loss of control can erode independence, restrict social participation, and disrupt personal relationships. Caregivers, too, face emotional and practical burdens, frequently limiting family activities for fear of triggering another emergency.

Identifying gaps along the emergency pathway

If we are to effectively tackle the burden faced by people experiencing PS and their caregivers, we need to address gaps in how they are managed.

The Seizure Termination Project defined seizures lasting more than 2 minutes (for tonic-clonic) or 5 minutes (for focal seizures) as PS. While a definition of PS is getting clearer, in the real world, patients and caregivers don’t routinely time seizures as they may lose consciousness or the caregiver may prioritise assistance. However, new analyses suggest that many seizure types may become abnormally prolonged well before these thresholds, with statistical definitions indicating cutoffs as short as 1–3 minutes for focal seizures and about 1 minute for generalized absence seizures.

This finding calls into question whether current guidelines are sufficiently sensitive for early intervention and whether some emergencies could be avoided with a lower threshold for action.

A key opportunity lies in adopting the principle of Rapid and Early Seizure Termination (REST) - a proactive approach emphasizing immediate intervention with a fast-acting treatment at the first signs of a PS. As yet, REST has not been widely incorporated into national or regional guidelines, but its inclusion could empower patients, caregivers, and first responders to stop seizures quickly, disrupting the path to escalation.

Towards Holistic, Person-Centered Care

Prolonged seizures are more than isolated medical events - they are life-altering crises with wide-reaching effects. Patients and families need accessible information, emotional and practical support, as well as coordinated care that recognizes the complexity of their experience. By closing the gaps in understanding, care pathways and support systems, we can move closer to a future where every person with epilepsy is recognized, supported, and protected from unnecessary harm.