This article originally appeared in The Neurotransmitter, Dr. Grunch’s weekly newsletter.
Picture this. You’re in the checkout line, at your kid’s soccer game, or at the office, and the person next to you suddenly drops to the ground. Their body stiffens, then starts to jerk. Somebody yells, “Hold them down!” Somebody else yells, “Don’t let them swallow their tongue!”
Both of those are wrong. And they’re two of the most common things people try.
About 1 in 10 people in the United States may have a seizure at some point in their lives [1]. That means you will very likely be standing near one someday. November is Epilepsy Awareness Month, so this week I want to give you the simple steps that actually help, plus the one number every person should know: five minutes.
What Is a Seizure, Really?
Your brain runs on electricity. Billions of nerve cells send tiny electrical signals to each other all day long, in a careful, organized rhythm. That rhythm is how you think, move, talk, and feel.
A seizure is a sudden burst of disorganized electrical activity in the brain. Think of a power surge in your house. Normally each light switch controls one room. During a surge, lights flicker everywhere at once, the TV turns itself on, and the garage door starts opening and closing. Nothing is broken for good, but for a minute or two, nothing works the way it should.
Where the surge happens decides what you see. If it stays in one area, it’s called a focal seizure. The person might stare, smack their lips, pick at their clothes, or not answer you, even though their eyes are open. If it spreads across both sides of the brain, you can get a generalized tonic-clonic seizure (the older name is “grand mal”). That’s the one most people picture: the body stiffens (tonic), then jerks rhythmically (clonic).
One seizure doesn’t mean someone has epilepsy. Epilepsy is the diagnosis when a person has had at least two unprovoked seizures more than 24 hours apart, or one unprovoked seizure plus a high chance of more, or a known epilepsy syndrome [3]. “Unprovoked” means there wasn’t an obvious short-term trigger, like a very low blood sugar or alcohol withdrawal.
Who It Affects
Epilepsy is far more common than most people realize. About 2.9 million U.S. adults reported having active epilepsy in 2021 and 2022. That’s roughly 1% of all adults. Another 456,000 children and teens have it too [2].
It can start at any age. In kids, genetics and differences in brain development play a big role. In adults, I pay close attention to what might be underneath a first seizure: a stroke, a head injury, an infection, or a brain tumor. In neurosurgery, a first seizure is sometimes the very first clue that something is growing in the brain. That’s one reason a new seizure in an adult always deserves a workup.
Seizure First Aid: Stay, Safe, Side
This is the part I want you to remember. The Epilepsy Foundation teaches three words: Stay, Safe, Side [11]. The CDC’s first-aid steps follow the same idea [1].
Stay. Stay with the person and look at your watch or phone. Start timing the seizure right away. Most seizures stop on their own within a couple of minutes.
Safe. Keep them safe. Gently ease them to the floor if they’re falling. Move furniture and sharp objects out of the way. Put something soft and flat, like a folded jacket, under their head. Take off their glasses and loosen anything tight around the neck.
Side. If they’re not awake and aware, roll them gently onto their side with their mouth pointed toward the ground. This helps saliva drain and keeps the airway open.
Now the don’ts. These come straight from the CDC [1]:
Don’t hold them down or try to stop their movements. You can hurt them, or yourself.
Don’t put anything in their mouth. Not a spoon, not a wallet, not your fingers. A person can’t swallow their tongue. Objects in the mouth can break teeth, cut the gums, or block the airway.
Don’t give mouth-to-mouth breaths during the seizure. Most people start breathing normally again once it ends.
Don’t offer food or water until they’re fully alert.
When it’s over, stay with them. People are often confused, tired, or embarrassed afterward. Speak calmly, tell them what happened, and offer to call someone to help them get home [1].
When to Call 911
Many seizures, especially in someone with known epilepsy, don’t need an ambulance [1]. Some do, and the clock is how you tell the difference.
When a tonic-clonic seizure keeps going for 5 minutes or more, experts treat it as a medical emergency called status epilepticus. After about 5 minutes, a tonic-clonic seizure is less likely to stop on its own. After about 30 minutes, it can start to cause lasting brain injury [4]. That’s why I want you to time it, and not guess.
Call 911 right away if:
The seizure lasts longer than 5 minutes.
Another seizure starts soon after the first one.
The person has trouble breathing or doesn’t wake up afterward.
They were injured during the seizure.
The seizure happened in water.
It’s their first seizure ever, they’re pregnant, or they have diabetes [1].
If you’re not sure, call. Nobody on the other end of that line will be upset that you did.
After a First Seizure: What Happens Next
If you or someone you love has had a first seizure, you’ll likely have a brain scan (usually an MRI) and an EEG, a painless test that records the brain’s electrical activity through small sensors on the scalp. Bloodwork checks for things like low sodium or low blood sugar.
The big question is always, “Will it happen again?” The American Academy of Neurology and the American Epilepsy Society looked at the research. For adults with a first unprovoked seizure, the risk of another one is highest in the first two years, somewhere between 21% and 45% [5]. Starting medicine right away probably lowers the chance of a second seizure over those two years. It doesn’t seem to change the long-term outlook after three years or more [5].
So not everyone needs medicine after one seizure. That decision depends on your EEG, your MRI, your job, whether you drive, and how you feel about the risk. It’s a real conversation, and you get a say in it.
Treatment: From Medicine to Surgery
Most people with epilepsy do well with medicine. In a 30-year study of almost 1,800 people with newly diagnosed epilepsy, about half became seizure-free on the very first medicine they tried. By the end of the study, about 64% had been seizure-free for at least a year [6].
But that also means more than one-third of people keep having seizures despite treatment [6]. When two well-chosen medicines, taken the right way, haven’t controlled the seizures, doctors call it drug-resistant epilepsy [7]. Trying a third, fourth, or fifth medicine helps fewer and fewer people [6].
This is where my world comes in. Epilepsy surgery works, and it’s underused. In a landmark trial, people with drug-resistant temporal lobe epilepsy were randomly assigned to surgery or to keep trying medicines. One year later, 58% of the surgery group were free of seizures that affected awareness, compared with 8% of the medicine group [8]. A later trial that offered surgery earlier found 11 of 15 surgical patients seizure-free, compared with none of the 23 who stayed on medicine alone [9].
Surgery isn’t one single operation. Depending on where the seizures start, options can include:
Resection, removing the small area of brain where the seizures begin
Laser ablation, using a thin laser probe guided by MRI to treat that spot through a tiny opening
Neuromodulation, devices like vagus nerve stimulation, responsive neurostimulation, or deep brain stimulation that calm the brain’s electrical activity
Not everyone is a candidate, and every option has real risks that your team should walk you through. But if you’ve tried two medicines and you’re still having seizures, ask for a referral to a comprehensive epilepsy center. You deserve that evaluation.
Why Seizure Control Is Important (and What You Can Do)
There’s one hard topic I want to cover, because knowing about it helps you protect yourself or someone you love. SUDEP, or sudden unexpected death in epilepsy, affects about 1 in 1,000 adults with epilepsy each year [10]. The biggest risk factor is having generalized tonic-clonic seizures, and the risk goes up the more often they happen. Being seizure-free is strongly linked to lower risk [10].
That’s why controlling seizures is critical, and much of it is in your hands. If you have epilepsy, or love someone who does:
Take medicine on schedule. Missed doses are one of the most common reasons seizures come back. Phone alarms and pill boxes help.
Protect your sleep. Being short on sleep is a well-known trigger.
Be careful with alcohol and talk with your doctor about how it interacts with your medicine.
Make a seizure action plan and share it with family, teachers, coaches, or coworkers. Ask your doctor if a rescue medicine, such as a nasal spray, makes sense for you.
Wear a medical ID. It tells strangers what’s going on.
Know your state’s driving rules. Every state requires a seizure-free period before you can drive again. Ask your doctor what applies to you.
Questions to ask your doctor:
What type of seizures do I have, and where in my brain do they start?
What should my family do if a seizure lasts more than 5 minutes? Do I need a rescue medicine?
How many medicines have I tried? Would I count as drug-resistant?
Should I be evaluated at a comprehensive epilepsy center for surgery or a device?
When is it safe for me to drive, swim, or go back to work?
Key Takeaways
About 1 in 10 people may have a seizure in their lifetime, so seizure first aid is for everyone [1].
Remember Stay, Safe, Side: time it, clear the space, and roll them on their side. Never hold someone down or put anything in their mouth [1, 11].
Call 911 if a seizure lasts longer than 5 minutes, if seizures repeat, if the person is injured or has trouble breathing, or if it’s their first seizure [1, 4].
Most people with epilepsy do well on medicine, but more than one-third don’t, and they should ask about an epilepsy center [6, 7].
Surgery and devices can stop or reduce seizures for the right person, and they’re underused [8, 9].
If you take one thing from this week’s issue, let it be this: you don’t have to be a doctor to help someone having a seizure. You just have to stay calm, keep them safe, roll them on their side, and watch the clock.
And if you live with epilepsy, you’re not alone, and you may have more options than you’ve been told.
Learn more about how Dr. Grunch approaches brain surgery on our Craniotomy page, and browse everything we treat on our Conditions We Treat page.
References
1. Centers for Disease Control and Prevention. First Aid for Seizures. Updated May 15, 2024. https://www.cdc.gov/epilepsy/first-aid-for-seizures/index.html
2. Centers for Disease Control and Prevention. Epilepsy Facts and Stats. Updated May 15, 2024. https://www.cdc.gov/epilepsy/data-research/facts-stats/index.html
3. Fisher RS, Acevedo C, Arzimanoglou A, et al. ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014;55(4):475-482. doi:10.1111/epi.12550
4. Trinka E, Cock H, Hesdorffer D, et al. A definition and classification of status epilepticus: report of the ILAE Task Force on Classification of Status Epilepticus. Epilepsia. 2015;56(10):1515-1523. doi:10.1111/epi.13121
5. Krumholz A, Wiebe S, Gronseth GS, et al. Evidence-based guideline: management of an unprovoked first seizure in adults: report of the Guideline Development Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology. 2015;84(16):1705-1713. doi:10.1212/WNL.0000000000001487
6. Chen Z, Brodie MJ, Liew D, Kwan P. Treatment outcomes in patients with newly diagnosed epilepsy treated with established and new antiepileptic drugs: a 30-year longitudinal cohort study. JAMA Neurol. 2018;75(3):279-286. doi:10.1001/jamaneurol.2017.3949
7. Kwan P, Arzimanoglou A, Berg AT, et al. Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010;51(6):1069-1077. doi:10.1111/j.1528-1167.2009.02397.x
8. Wiebe S, Blume WT, Girvin JP, Eliasziw M. A randomized, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med. 2001;345(5):311-318. doi:10.1056/NEJM200108023450501
9. Engel J Jr, McDermott MP, Wiebe S, et al. Early surgical therapy for drug-resistant temporal lobe epilepsy: a randomized trial. JAMA. 2012;307(9):922-930. doi:10.1001/jama.2012.220
10. Harden C, Tomson T, Gloss D, et al. Practice guideline summary: sudden unexpected death in epilepsy incidence rates and risk factors. Neurology. 2017;88(17):1674-1680. doi:10.1212/WNL.0000000000003685
11. Epilepsy Foundation. Seizure First Aid Resources. https://www.epilepsy.com/recognition/first-aid-resources
Schedule an Appointment with Southern Neurosurgery
Have questions about your brain or spine health? Dr. Betsy Grunch and the team at Southern Neurosurgery are here to help. Call us at 470-293-9800 to schedule an appointment, or reach out through our Contact Us page.
Disclaimer: This article is for educational purposes only and is not medical advice. It does not replace individualized care from a licensed physician. If you have symptoms or questions about your own health, please consult your healthcare provider. If you think you are having a medical emergency, call 911.
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