Epilepsy is a condition defined by unpredictability. Even patients with well-managed seizure control can experience breakthrough seizures—sudden, unexpected events that disrupt perceived stability.1 These seizures can range from focal seizures affecting one part of the brain to prolonged seizures lasting 2 minutes or more, each carrying the potential for serious clinical consequences.2-4 For the 50 million people living with epilepsy worldwide,5 this unpredictability can create a constant state of hypervigilance. Beyond the physical toll, the emotional burden of social isolation, uncertainty, and anxiety about future seizures affects patients and caregivers.6-7
Shelly Meitzler understands this reality intimately. Her long journey of education, marked by self-initiated learning and insights from healthcare providers, illustrates the complex path many caregivers navigate. As a mother of two children with Tuberous Sclerosis Complex (TSC), a leading genetic cause of epilepsy,8 she has witnessed the full spectrum of seizure experiences. “It’s one of the most powerless feelings you can have,” she explains. “A few minutes feels like forever when you’re watching someone you love experience a seizure.”
Her daughter Ashlin experienced a prolonged seizure at age 2 that dramatically altered her developmental trajectory. “She went from hitting all her milestones to losing everything—walking, talking, even sitting up,” Shelly recalls. Years later, when her son Mason had his first prolonged seizure, Shelly recognized the signs and intervened quickly, preventing long-term damage.
Clarifying the Definition of Prolonged Seizures
Historically, the medical community has lacked a unified definition of prolonged seizures, often using the term interchangeably with status epilepticus, or seizures lasting 5 minutes or longer and considered medical emergencies requiring acute treatment.9 However, an initiative led by UCB, a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions, has helped further discussions in the medical community towards reaching consensus on clinical threshold for prolonged seizures. Research suggests 2 minutes for prolonged absence seizures and the convulsive phase of bilateral tonic-clonic seizures and 5 minutes for prolonged focal seizures may be a potential threshold for requiring acute treatment.4
Data presented at the American Epilepsy Society (AES) 2024 Annual Meeting revealed the profound impact prolonged seizures can have, with affected individuals four times more likely to call an ambulance, underscoring both the physical risks and emotional strain associated with seizure emergencies and the urgent need for enhanced support and innovative treatment strategies.7
“Our conversations with patients and caregivers show that the consequences of delayed intervention extend far beyond immediate medical impact. These short timeframes represent critical windows for intervention, where action can mean the difference between recovery and permanent damage,” says Dr. Kate Labiner, pediatric neurologist, epileptologist, and sports neurologist at Child Neurology Consultants of Austin.
The Emotional Toll and Need for Support
The data also highlighted the emotional trauma that compounds with each seizure event. Fear of sudden unexpected death in epilepsy (SUDEP) and long-term developmental consequences were common among participants.7 Equally significant were physiological strain, cycles of helplessness, isolation, and stigma due to lack of awareness.7
“For caregivers, creating safe, controlled environments is paramount, and can create a paradox of visibility. Seizures make the condition undeniably present and stigmatizing, causing isolation when they need help the most,” Dr. Labiner shares. “Having a plan in place can allow those impacted by epilepsy to feel more control in an emergent event. This proactive approach not only supports a structured treatment paradigm but can even reduce the likelihood of requiring emergency room or hospital visits.”
Shelly’s experience underscores this. She educated herself, her children’s teachers, and extended family on seizure recognition and acute medication administration. “There’s still stigma around epilepsy,” she emphasizes. “People fear what they can’t understand and freeze when they don’t know how to help. But you don’t need a medical degree to have basic seizure awareness and understanding.”
Acute Therapies and Seizure Action Plans: A Proactive Approach
When Mason was diagnosed with TSC years after his sister, the family’s care reflected advances in epilepsy management, emphasizing acute therapies and early intervention, and the importance of being informed about treatment options. When infantile spasms appeared on Mason’s 1-year EEG test, Shelly had first-line medication in hand within a week, stopping the spasms. This proactive approach represents the “time to brain” principle: Every second of seizure activity can potentially damage neural tissue, making every second of prevention critical.10
Shelly emphasizes the importance of individualized care. “You know your child’s history. You recognize the patterns. That knowledge can be lifesaving.” Recognizing subtle signs—auras, behavioral shifts, environmental triggers—can inform seizure action plans: personalized protocols detailing when to administer rescue medications and escalate to emergency care.
Empowering Healthcare Providers to Lead the Conversation
Despite progress in epilepsy care, many continue to experience gaps in communication with healthcare providers. Another study sponsored by UCB examined the experiences of people living with epilepsy and caregivers, revealing that while many individuals reported positive relationships with their providers, there remains a strong demand for more in-depth engagement and dialogue about treatment options, including the availability and use of rescue medications.11
“All the things that doctors don’t wind up saying are the things that families draw our own conclusions or assumptions from,” Shelly notes. “And that’s often worse than having the hard conversations.”
The findings underscore the need for a patient-centered approach in epilepsy care, where healthcare professionals actively seek feedback and tailor treatment plans to individual needs. This collaboration not only improves outcomes but also enhances quality of life. Providers play a vital role in normalizing discussions around acute therapies—making clear, proactive communication about seizure types, medications, and action plans standard practice rather than reserved for moments of crisis.
For Dr. Labiner, partnership with people with epilepsy and their caregivers is a cornerstone of seizure management:
“Seizure action plans need input from those who see these patterns daily. Families can identify triggers and warning signs we might miss in a clinical setting, and that information directly impacts treatment decisions. Through collaboration, we can combine these observations with medical expertise to create protocols that work when every moment counts.”
Spreading Awareness and Breaking Down Barriers
Today, Shelly supports other families as the Director of Community Support and Outreach at the TSC Alliance, viewing every interaction as an opportunity to help other caregivers navigate the challenges of epilepsy.
“Our family is one of the lucky ones. The human part of us could never understand why Ashlin’s journey was the way it was, but along the way, it helped me realize she was teaching me things that were going to help save her brother,” she shares. “We have to continue normalizing these conversations and provide widespread education so people can receive the diagnosis and treatment they need.”
Her story is a powerful reminder that every moment counts, and collaboration between caregivers and healthcare providers can transform outcomes. By fostering open communication and providing comprehensive care, we can advance the standards of epilepsy treatment and support the diverse needs of patients and their families.
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