Spencer’s Story: What to Know About Seizure Clusters
Posted: December 05, 2019 | Word Count: 1,017
At just one day old, Spencer, born in Greenville, South Carolina, had his first seizure, a sudden, uncontrolled electrical disturbance in the brain that usually causes a change in behavior.1,2 Spencer experienced the seizure along with other serious health issues, and nurses didn’t think he’d make it through the night. Against all odds, Spencer survived. Three years passed and Spencer’s parents noticed he was having strange body movements, like twitching and jerking. Shortly thereafter, Spencer began experiencing seizures again and doctors diagnosed him with epilepsy, a disease of the brain characterized by recurrent, unprovoked seizures.1,2
But Spencer’s road to diagnosis and treatment plan was not easy. Once the seizures began, they happened one after another, and wouldn’t stop. Doctors soon realized Spencer was having seizure clusters, a type of seizure emergency, where patients experience multiple seizures.3
Spencer is not alone — it is estimated that more than 150,000 people in the U.S. with uncontrolled epilepsy also experience seizure clusters.4,5,6 While a seizure may only last one to two minutes, a seizure cluster can typically last for hours, and if left untreated, can have potentially serious consequences including hospitalization, mortality, physical injury, neurological damage and status epilepticus.3,7-15
“When I’m having a seizure it’s like my body is out of my control, and if I try to fight it, my body fights back,” Spencer shared while explaining his fear of having another seizure. Spencer’s parents also felt overwhelmed with information, unknown terminology, and misconceptions about epilepsy, and were concerned about Spencer’s future, worrying whether they would find an effective way to treat his seizures. Spencer’s seizure emergencies often ended in visits to the emergency room, which could be quite costly. For patients with commercial insurance, the average cost of an epilepsy-related ambulance ride is about $4,000 and, if a patient is hospitalized, the average cost increases dramatically to about $38,000 per hospitalization.16
After many hospitalizations, a doctor finally prescribed Spencer a rescue medication, which is taken as needed and is commonly used to treat seizure clusters.17 However, the standard of care for rescue medications was a rectally administered gel, which made it burdensome and embarrassing for patients like Spencer to use.18-21 In fact, data suggests only one in five patients with seizure clusters report using a rescue medication.3
While Spencer and his family were thankful to have a treatment option for him to take at the start of a seizure emergency, they were desperate to find a rescue treatment that didn’t leave him feeling embarrassed.
After struggling for many years, Spencer finally found the right mix of daily medications to regularly avoid seizures, and for the last seven years, he has had seizure control. Spencer is pursuing his studies in journalism as a sophomore in college, and while his parents are extremely grateful for his current seizure control, they still worry about the possibility of another seizure emergency and have continued to seek out other rescue medication options. With promising new rescue medications being developed for the treatment of seizure clusters, Spencer and his parents are hopeful one will enable other patients like Spencer to confidently manage their seizure clusters and allow them to live their best lives.
This article is sponsored by UCB, Inc.
- The Epilepsy Foundation of America. About epilepsy basics. http://www.epilepsy.com/learn/about-epilepsy-basics. Accessed 22 November 2019.
- The Epilepsy Foundation of America. What is epilepsy? http://www.epilepsy.com/learn/epilepsy-101/what-epilepsy. Accessed 22 November 2019.
- Penovich PE, Buelow J, Steinberg, et al. Burden of seizure clusters on patients with epilepsy and caregivers survey of patient, caregiver, and clinician perspectives. The Neurologist. 2017;22:207–214.
- Zack M, R Kobau. National and State Estimates of the Numbers of Adults and Children with Active Epilepsy. CDC MMWR. 2017. 66:821-825.
- Kwan P, M Brodie. Early Identification of Refractory Epilepsy. NEJM. 2005. 342:314-319.
- Chen B, Choi H, Hirsch L, et al. Prevalence and risk factors of seizure clusters in adult patients with epilepsy. Epilepsy Res. 2017;133:98-102.
- Jafarpour S, Hirsch LJ, Gaínza-Leina M, et al. Seizure cluster: Definition, prevalence, consequences, and management. Seizure. 68:9-15.2019.
- McKee H, A Bassel. Outpatient Pharmacotherapy and Modes of Administration for Acute Repetitive and Prolonged Seizures. CNS Drugs. 2015. 29:55-70.
- Ferastraoaru V. Termination of seizure clusters is related to the duration of focal seizures. Epilepsia. 57(6):889–895, 2016.
- Haut SR, Shinnar S, Moshé SL. Seizure clustering: risks and outcomes. Epilepsia. 2005;46(1):146-149.
- Sillanpää M, Schmidt D. Seizure clustering during drug treatment affects seizure outcome and mortality of childhood-onset epilepsy. Brain. 2008;131(Pt 4):938-944.
- Haut S. Seizure clusters: characteristics and treatment. Current Opinion Neurology. 28:143–150, 2015.
- Status Epilepticus. Epilepsy Foundation. Accessed November 4, 2019. https://www.epilepsy.com/learn/challenges-epilepsy/seizure-emergencies/status-epilepticus
- Buck D, et al. Patients' Experiences of Injury as a Result of Epilepsy. Epilepsia. 38(4):439-444, 1997.
- Cereghino JJ, Mitchell WG, et al. Treating repetitive seizures with a rectal diazepam formulation: a randomized study. The North American Diastat Study Group. Neurology. 1998;51(5):1274-1282.
- Data on file. UCB, Inc. IBM MarketScan Commercial Claims research database (CCMC 2008-2018 v0.1).
- Using Rescue Treatments. Epilepsy Foundation. Accessed September 24, 2019. https://www.epilepsy.com/learn/managing-your-epilepsy/using-rescue-treatments
- Holsti M, Dudley N, Schunk J, et al. Intranasal midazolam vs rectal diazepam for the home treatment of acute seizures in pediatric patients with epilepsy. Arch Pediatr Adolesc Med. 2010;164(8):747-753.
- de Haan GJ, van der Geest P, Doelman G, Bertram E, Edelbroek P. A comparison of midazolam nasal spray and diazepam rectal solution for the residential treatment of seizure exacerbations. Epilepsia. 2010;51(3):478-482
- Nunley S, Glynn P, Rust S, Vidaurre J, Albert DVF, Patel AD. A hospital-based study on caregiver preferences on acute seizure rescue medications in pediatric patients with epilepsy: intranasal midazolam versus rectal diazepam. Epilepsy Behav. 2019;92:53-56.
- Bhattacharyya M, Kalra V, Gulati S. Intranasal midazolam vs rectal diazepam in acute childhood seizures. Pediatr Neurol. 2006;34(5):355-359.