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My goal for every patient with epilepsy is to improve their quality of life. So, it’s been gratifying to see more treatment options become available in recent years and help patients live longer, healthier lives.
But even as we learn more about epilepsy, patients and providers continue to face many challenges:
- Epilepsy remains incurable but can be treated and managed.
- Stigma surrounds the condition, causing a lack of understanding in the general public and reluctance in some patients to discuss their symptoms or seek treatment.
- The risk of sudden unexpected death in epilepsy patients (SUDEP) persists with no identifiable cause, and families are often unaware of this risk.
SUDEP refers to the death of a patient with epilepsy that is not caused by a known incident, such as drowning or an injury. It most often occurs during sleep. Studies have indicated that breathing, heart rate, or brain function complications during or after a seizure may contribute, but we still have more questions than answers.
Here’s what we do know about SUDEP:
- Frequent generalized tonic-clonic seizures are a risk factor. These are what typically come to mind when you think of a seizure: You lose consciousness for a minute or two and your limbs stiffen and jerk.
- Uncontrolled seizures increase your risk. This is why it’s important to seek treatment or to consistently take your medication if that is your primary treatment method. Seizure management is the best way to prevent SUDEP.
In the U.S., nearly 3.5 million people have epilepsy. At least 1 in 1,000 of these patients will die from SUDEP, likely between age 21 and 40. I’ve seen patients who have had epilepsy for 10 or 20 years before hearing about SUDEP for the first time. It’s an uncomfortable topic, but talking about it can help.
As providers and scientists continue to seek a cure for epilepsy, I’m very passionate about what I can do now: increase awareness and understanding of basic epilepsy knowledge—especially about SUDEP.
Defining epilepsy.
Anyone can have a seizure—when electrical activity in your brain “short circuits” and behaves abnormally. The types of seizures are categorized as either generalized, involving the entire brain, or focal, involving a specific area of the brain.
During a seizure, some patients lose consciousness and experience rapid muscle contractions. Others stop whatever they’re doing and stare for several seconds, appearing “out of it.”
Patients are diagnosed with epilepsy after they have experienced two or more seizures. In half of these patients, the cause is unknown. Commonly known causes include:
- A head injury
- A brain condition, such as a stroke or tumor
- Birth complications
- Infection in the central nervous system
Epilepsy typically is diagnosed in children and in adults over 65. Some children grow out of it, but for others epilepsy is a lifelong condition. Our goal is to help these patients limit or eliminate their seizures through treatment, which often involves one or more of the following options:
- Medication
- Brain surgery to remove tissue where seizures occur
- Surgical implantation of a device to help prevent seizures
How to respond to a seizure.
In over one-third of SUDEP occurrences, someone had recently witnessed the patient have a seizure. Educating more providers and loved ones about the risk of SUDEP may increase the likelihood of preventing possible deaths; if someone they know recently had a seizure they’ll be more likely to check on them as they sleep.
If you or a loved one have epilepsy, record notes about what happens before each seizure to help recognize patterns and track triggers, such as lack of sleep, specific times of the day, alcohol use, or stress. Share this information with people you frequently spend time with to alert them to warning signs as well.
Seizure alert devices can act as an additional layer of awareness. Many watches, mobile apps, and even mattress devices will measure your movement and alert others when you are having a seizure. However, these tools cannot prevent a seizure from happening and only work for seizures that involve a lot of movement.
If you see somebody having a seizure, ensure they have plenty of space, free of sharp objects. Wait calmly for the seizure to end; it shouldn’t be more than a couple of minutes. When the seizure is over, turn them on their side and loosen any clothing around their neck so they can breathe more easily. Do not stick anything in their mouth (they won’t choke) or let them drive or operate equipment following the seizure. Let them rest. If their behavior does not return to normal within an hour, call for emergency care.
ERASE SUDEP.
I’m working on an ERASE SUDEP (Evaluating and Raising Awareness of SUDEP in Epilepsy Patients) initiative to help educate MedStar Health providers, patients, and local communities. I want to understand what people know about SUDEP and develop ways to fill the knowledge gaps.
Many caregivers take a cautious approach to sharing information about SUDEP with patients. They may want to avoid triggering anxiety and depression, which are prevalent in many people with epilepsy.
However, research shows that providing SUDEP information to epilepsy patients can improve medication adherence without negatively affecting their mood or quality of life. Better adherence means lower risk of seizures. A 2018 survey of adult epilepsy patients revealed that 100% of respondents wanted to be informed of their SUDEP risk because it motivated them to better manage their seizures.
Controlling seizures with customized treatment.
Several medications can minimize seizures in patients with epilepsy. But about one-third of patients do not respond to medication. This is called refractory or drug-resistant epilepsy. Providers at MedStar Washington Hospital Center can monitor patients’ seizures over the course of a few days to better understand their seizures and recommend more effective treatment.
If medications alone do not control seizures well enough, surgery may be a possible option. Surgery can be resective at times and may involve removing a part of or an entire lobe within the brain where seizures typically start. Other times, it might be possible to implant an epilepsy device that can detect abnormal electric activity in the brain and send electric signals to stop it before a seizure occurs.
Advances in technology continue to make surgery safer and more effective. Our epileptologists and surgeons will partner with you and your care provider to discuss your health and determine which type of surgery may be best for your type and pattern of seizures.
Epilepsy can be frustrating and confusing, but it doesn’t have to control your life and it is nothing to be ashamed about. Understanding its risks and prevention strategies can help you better control future seizures and improve your quality of life.
