For many people, epilepsy treatment begins with medication. For some, it brings lasting seizure control. For others, seizures continue despite treatment, and the next steps can be harder to see. Epilepsy Awareness Month is a chance to share an important message: Medication is not the only avenue available, and knowing basic seizure first aid can help keep someone safe.
The International League Against Epilepsy defines drug-resistant epilepsy as seizures that continue after adequate trials of two appropriately chosen and tolerated medication schedules. “Intractable epilepsy” is still familiar to many, but doctors increasingly use “drug-resistant.” The term does not mean a person has run out of options. It can be a reason to ask about evaluation at a comprehensive epilepsy center, where specialists can review the diagnosis and discuss a broader range of treatments.
Those options depend on the person and the type and location of their seizures. They may include epilepsy surgery, dietary therapy or a device that delivers electrical stimulation. For some patients whose seizures begin in a specific area of the brain, surgery may be considered. Others may be evaluated for a device or another approach. A specialist can help determine what is appropriate.
Two devices people may hear about are vagus nerve stimulation, or VNS, and responsive neurostimulation, or RNS. They work differently, and neither is a cure.
A VNS device is implanted under the skin in the chest and connected to the vagus nerve in the neck. It sends regular electrical signals that may reduce how often seizures occur, how long they last or how severe they are. Some VNS systems can deliver additional stimulation when they detect a rapid increase in heart rate; a person may also use a magnet to trigger stimulation when they sense a seizure coming. VNS is generally used along with medication.
RNS is designed for people whose seizures begin in one or two identifiable areas of the brain. The implanted device monitors brain activity and delivers brief stimulation when it detects seizure-related patterns. It is also used alongside medication, and candidacy requires specialized evaluation. Both therapies can reduce seizures for some people, but their effects vary.
I have watched the difference that access to treatment options can make in my own family. My daughter has lived with difficult-to-control epilepsy and has received both VNS and RNS therapy. Since her RNS was activated in 2023, she has been seizure-free. That is her experience, not a promise of the same outcome for someone else, but it has shown me why families should know they can ask about more than the next medication.
Another difficult subject that deserves an honest conversation is sudden unexpected death in epilepsy, known as SUDEP.
It is rare, but the risk is higher for some people, particularly those with uncontrolled or frequent generalized seizures. The Centers for Disease Control and Prevention estimates that each year SUDEP affects about one in 1,000 U.S. adults with epilepsy and one in 4,500 children with epilepsy. Those are population estimates; an individual’s risk can differ. The CDC advises people with epilepsy to ask their health care provider about their risk and ways to reduce it.
Not every seizure looks the same. Some cause a person to fall and shake; others may involve staring, confusion or a brief loss of awareness. If someone is having a seizure, stay with them, remain calm and time it. Move nearby objects that could cause injury, cushion their head with something soft and loosen tight clothing around the neck. If they are on the ground and not awake or aware, gently turn them onto their side when possible.
Do not hold the person down or try to stop their movements. Do not put anything in their mouth; a person cannot swallow their tongue, and an object can injure their teeth or jaw. Do not offer food, water or pills until the person is fully alert. If they have prescribed rescue medication and you know how to use it, follow their seizure action plan.
Call 911 if the seizure lasts longer than five minutes, another seizure begins before the person has recovered, the person has trouble breathing or waking afterward, is injured, is pregnant, or the seizure happens in water. Emergency help is also recommended for someone’s first known seizure. A person who has epilepsy may have an established plan for their usual seizures, so, when possible, check for a medical ID or ask them or their caregiver what help they need.
After a seizure, stay nearby while the person recovers.
They may be confused, tired or embarrassed. Give them room, offer reassurance and explain what happened when they are ready. The CDC says most seizures do not require emergency medical care, but knowing when they do can make a critical difference.
For a patient or caregiver unsure where to begin, one question may be: “Would an evaluation at a comprehensive epilepsy center help us understand our options?” Epilepsy centers bring together specialists who can review seizure history, testing and treatment. The national Epilepsy Foundation provides information about treatment options, seizure first aid and guidance for people seeking local referrals.
Epilepsy can affect far more than the moments when a seizure happens. It can shape a person’s independence, a family’s routines and the questions they carry into every appointment. Awareness means knowing how to respond when someone has a seizure. It also means knowing that when medication alone is not enough, patients and families can ask what else may be possible.