This post is part of the Epilepsy Blog Relay™. Follow along all month!
For people with epilepsy, uncontrolled seizures (seizures that continue even while you’re on medication)1 can be a source of constant anxiety – wondering when and where one may happen.
Busy schedules, side effects and rigid medication schedules can make keeping seizures under control extremely challenging.2-4 Poor seizure control can lead to severe consequences, such as shortened lifespan, a higher risk of fractures and head injuries and ER visits, and the risk of emotional and cognitive difficulties in both adults and children.5-7, 8,9
Setting goals is a key step in taking charge of your epilepsy care.2,3 Susan Woolner, CPXP, is a Neuroscience Patient and Caregiver Support and Community Manager at Mercy Health Hauenstein Neurosciences based in Grand Rapids, Michigan. She works with adult patients in support groups for those living with epilepsy as well as other conditions. “Seizure freedom is more than just freedom from seizures,” she says. “It’s freedom from the stigma, shame and blame that come with epilepsy.”
The Quest for Seizure Freedom
Although seizures can occur for a number of reasons, a significant number of people reported experiencing seizures—including convulsive seizures—after missing a dose.10,11 According to one survey, nearly 50% of people with epilepsy report having a seizure following a missed dose.11
In one survey, two thirds of patients missed doses due to “forgetfulness,” and 37% of patients with epilepsy missed a dose once a month on average.2 For many, the goal of living seizure free can feel impossible. But it doesn’t have to be.
“It’s critical that patients take their medication exactly as directed, at the right times, and at the right doses, otherwise you increase the risk of having a seizure,” said Dr. James Wheless, Professor and Chief of Pediatric Neurology, University of Tennessee Health Science Center.2 “Though treatment lapses are a part of life with this disease, as physicians, we should be doing all we can to make treatment regimens as simple as possible, which could mean fewer daily doses, fewer pills, once-daily dosing and giving patients the tools they need to aim for seizure freedom.”12
Treatment Options and Reducing Missed Doses
When doses are missed or the medicine isn’t taken as prescribed, the level of medicine in the body decreases. Studies have shown that certain medications that are long acting may reduce the impact of missed doses.13 Different treatment options may help minimize the risk of seizures.
“Medications that are designed for sustained release can stay in the body longer, which may help patients better manage their treatment regimen,” said Dr. Wheless. 13
People with epilepsy and their caregivers who struggle with uncontrolled seizures and have a hard time taking treatment as prescribed should ask their healthcare provider about strategies for keeping their treatment on track. These may include10,14,15:
- Devise a comprehensive, realistic plan of action for improving adherence
- Develop reminders to help increase adherence
- Adjust treatment regimen to your daily lifestyle
- Consider medications that offer once-daily dosing in the form preferred and are effective at treating convulsive seizures.
To learn more about the importance and possibility of preventing breakthrough seizures, visit https://www.epilapsey.com/patient.
- Bonnett LJ, Powell GA, Smith CT, Marson AG. Breakthrough seizures—further analysis of the standard versus new antiepileptic drugs (SANAD) study. PLoS ONE. 2017;(12): e0190035. https://doi.org/10.1371/journal.pone.0190035
- Paschal AM, et al. Factors associated with medication adherence in patients with epilepsy and recommendations for improvement. Epilepsy Behav. 2014;31:346-350.
- O’Rourke G, O’Brien JJ. Identifying the barriers to antiepileptic drug adherence among adults with epilepsy. Seizure. 2017;45:160-168.
- Epilepsy Foundation. Noncompliance. https://www.epilepsy.com/learn/professionals/refractory-seizures/potentially-remediable-causes/noncompliance. Accessed May 28, 2019.
- Devinsky O, Hesdorffer DC, Thurman DJ, et al. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol. 2016;15(10):1075-1088.
- Friedman DE, et al. Recurrent seizure-related injuries in people with epilepsy at a tertiary epilepsy center: A 2-year longitudinal study. Epilepsy Behav. 2010;19(3):400-404.
- Divino V, Petrilla AA, Bollu V, et al. Clinical and economic burden of breakthrough seizures. Epilepsy Behav. 2015;51:40-47.
- Manjunath R, Paradis PE, Parise H, et al. Burden of uncontrolled epilepsy in patients requiring an emergency room visit or hospitalization. Neurology. 2012;79:1908-1916.
- Thompson PJ, Duncan JS. Cognitive decline in severe epilepsy. Epilepsia. 2005;46(11):1780-1787.
- Hovinga CA, Asato MR, Manjunath R, et al. Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: Survey of patients with epilepsy and physicians. Epilepsy Behav. 2008;13(2):316-322.
- Cramer JA, et al. The relationship between poor medication compliance and seizures. Epilepsy Behav. 2002;3(4):338-342.
- Eatock J, Baker GA. Managing patient adherence and quality of life in epilepsy. Neuropsychiatr Dis Treat. 2007;3(1):117-131.
- Wheless JW, Phelps SJ. A clinician’s guide to oral extended-release drug delivery systems in epilepsy. J Pediatr Pharmacol Ther. 2018;23(4):227-292.
- Osterberg L, Blaschke T. Adherence to medication. N Engl J Med. 2005;353(5):487-497.
- Medic G, et al. Dosing frequency and adherence in chronic psychiatric disease: systematic review and meta-analysis. Neuropsychiatr Dis Treat. 2013;9:119-131.
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Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.