By Annette M. Boyle
PROVIDENCE, RI—For many veterans, the onset of epilepsy is terrifying, and a confirmed diagnosis does little to provide relief. The VA aims to reduce the fear associated with seizures and encourage more veterans to seek help with the “Veterans and Epilepsy: Basic Training” series of videos.
“There is a culture of stoicism in the military, which prevents veterans with epilepsy from reaching out to get more information about their epilepsy. Hopefully these videos will show veterans and all individuals living with epilepsy they are not alone,” explained Stephanie Chen, epilepsy nurse practitioner with the San Francisco VAMC.
“The VA Epilepsy Centers of Excellence have a mission of improving the health and well-being of veteran patients with epilepsy and other seizure disorders through the integration of clinical care, research, and education,” Paul A. Rutecki, MD, national director, Epilepsy Centers of Excellence, William S. Middleton Memorial Veterans Hospital, told U.S. Medicine. “The Basic Training videos were produced to help educate patients and their care givers as well as de-stigmatizing epilepsy. We wanted veterans with epilepsy to give their personal experience with epilepsy and how they have dealt with issues that relate to the condition. Also, the goals are to help patients and caregivers better self-manage epilepsy and its co-morbidities”
The videos directly address the challenges veterans with epilepsy face, but they also provide hope by showing how patients who choose treatment can live productive and successful lives.
- The first video, released in October 2015, follows an Army Ranger, Matthew, as he and his wife wrestle with the sudden onset of nighttime seizures and come to terms with an epilepsy diagnosis. The segment presents the questions asked to get a good description of a seizure and imaging and other tests commonly used to determine whether a veteran has epilepsy rather than syncope, sleep problems, migraine headaches or other issues. It also reviews when an epilepsy monitoring unit might be used. In the video, Matthew candidly discusses how frightening it was to find out he had epilepsy and his concerns about discrimination arising from the diagnosis.
- Another video in the series describes the psychosocial issues associated with epilepsy. It features a veteran, Luke, who suffered a closed head injury as a paratrooper at Fort Bragg. During his grand mal seizures, he has been restrained by the police, robbed, had four bikes stolen and had several accidents of increasing severity before he stopped driving. For individuals like Luke, epilepsy reduces their ability to travel, hold jobs, pursue hobbies, see friends and can often lead to isolation, loss of independence, loss of self-worth, stigmatization, anxiety and depression. The fear of when the next seizure would be was “worse than the seizures themselves,” he said, and the anxiety crippled him emotionally for years. With therapy, though, he is now volunteering and seeking other ways to “push back” against his epilepsy.
Luke’s experiences are common for veterans with epilepsy, according to W. Curt LaFrance Jr., MD, MPH, principal investigator for a pilot study of veterans with epileptic seizures at the Providence VAMC.
“Veterans present unique challenges because their seizure-related psychosocial difficulties are often amplified by post-traumatic stress disorder and traumatic brain injury,” LaFrance noted. “Among our goals of caring for veterans with epilepsy is developing effective treatments for these psychosocial comorbidities.”
A 12-session cognitive-behavioral therapy (CBT) intervention tested by LaFrance and his colleagues resulted in a reduction in seizures in veterans with epilepsy and other types of seizures disorders, as well as a reduction in anxiety and depression and improved quality of life. Currently, the team is conducting a study with 20 veterans that will compare the effect of the intervention on those who receive CBT as an adjunct to their usual care vs. the outcomes for those who receive usual medical care alone based on seizures, comorbidities, functioning and quality of life.
- One video explores the use of medications to control seizures through a Navy veteran’s experiences over his 28 years with epilepsy, including the impact on his family, social life and work as his care team tries a variety of drugs to bring his seizures under control while minimizing adverse effects. The short film discusses how medications suppress the excessive electrical activity in the brain characteristic of the disorder, as well as their side effects, including memory issues, sedation, fatigue, depression and confusion, as well as physical issues such as rash, liver failure and bone-marrow suppression. Physicians discuss the impact of skipped medications and ways to ensure that medications are available and taken as needed.
- Another video follows Holly, an Army veteran who sustained a combat-related traumatic brain injury from a gunshot wound to the head in Iraq which resulted in epilepsy. TBI is the leading cause of epilepsy and other seizure disorders in veterans. The physicians in the film outline the issues common to patients with TBI and epilepsy, including cognitive problems, relearning to walk, needing a caregiver and facing the loss of the vision they had for their lives.
- The seizure first aid video presents the variety of ways seizures can present, including confusion, loss of vision, numbness and headaches, as well as focal seizures with or without loss of consciousness and how they may progress. It highlights ways to keep the individual safe during a seizure and how to know when a seizure becomes a medical emergency. It also emphasizes the importance of wearing a medical alert bracelet so that others realize that their condition results from epilepsy rather than drugs or alcohol.
- The latest video, released in January, introduces epilepsy and the VA’s 16 Epilepsy Centers of Excellence. The segment notes that stroke, infection and traumatic brain injury are the most common causes of the neurological disorder, which will affect one in 26 people over their lifetime. Medications successfully control seizures in about 70% of epilepsy patients, according to Karen Parko, MD, inaugural director of the Epilepsy Centers of Excellence.
The centers can help patients “live their best possible lives,” Parko said. Information about and access to the new videos is at http://www.epilepsy.va.gov/.