1. Epilepsy is a brain disorder that causes seizures, which are basically like electric storms in your brain.
2. Not everyone with epilepsy has convulsive, jerking seizures.
In fact, most people with epilepsy experience "partial" (or focal) seizures. These affect one area of the brain and can result in an aura, physiological reactions, or motor and sensory changes. They can cause a person to stare blankly and/or smack their lips, pluck at their clothing, wander around, or perform other bizarre (but involuntary) actions.
The dramatic convulsions that most people associate with epilepsy are a result of a seizure affecting both sides of the brain at once. These "generalized" seizures can also cause "staring spells," brief body jerking, and "drop attacks" (suddenly falling to the ground).
3. When someone's having a convulsive seizure, keep them safe, supported, and on their side.
When a person is having a convulsive seizure (or you know/they have indicated they are about to), gently roll them on one side (to allow any fluids to drain out of their mouth and keep their airway open), support their head, remove any dangerous objects nearby (including their glasses), and time the seizure.
If a seizure lasts longer than five minutes, call 911.
"Seizures usually end within a few minutes and keeping a person safe from injury during a seizure and paying attention to the seizure duration are the best first aid," Dr. John Stern, director of the Epilepsy Clinical Program at UCLA, tells BuzzFeed. "If a seizure is longer than five minutes, then the risks may be greater and emergency care may become more important. If a person is not known to already have epilepsy or has a complicated medical condition, then emergency care may be needed sooner.”
For other types of seizures, it is important to remain with the person, gently guide them from danger (but avoid restraining them), and call 911 if the seizure lasts longer than five minutes.
4. NEVER force something into the mouth of someone having a seizure.
It’s physically impossible to swallow your tongue, and a “bite block” (wooden spoon, wallet, etc.) could cause serious injury.
A person having a convulsive seizure may briefly stop breathing and have a blue skin color, but Stern explains that "this is mostly due to the diaphragm becoming stiff along with the other muscles for breathing."
This is normal and brief, and the person will start breathing normally again as soon as their muscles relax. Do not attempt mouth-to-mouth or CPR during a convulsive seizure. Positioning the person on their side with their mouth pointed downward is the best way to keep their airway open.
5. Please remain with the person after they have a seizure to calm and reassure them.
They will be very confused and disoriented (after my first seizure I believed I had been in a plane crash!), and usually surrounded by frightened faces. It is extremely helpful if you are direct and candid and explain what just happened, who and where you are, and try to give them as much privacy as possible.
And if a person has urinated (which can happen with some seizures), cover that up to help limit any embarrassment, suggests Sander. Because after reassuring us and making sure we’re safe, the best thing you can do is help us restore our dignity.
6. Seizures are scary!
Seizures are truly terrifying, whether you're the person experiencing an aura or someone witnessing a grand mal seizure with convulsions. During a seizure, you lose consciousness, your muscles violently contract (I once broke a bed frame during a seizure), and your skin often turns blue from lack of oxygen.
Although we aren’t awake for the convulsions (and don’t remember them afterward), the aura preceding them (which is actually a seizure itself) is frightening for a host of other reasons: We could just be enjoying a hilarious kitten video at home or out running errands when suddenly we’re overcome by one or more of these unnerving sensations: a feeling of dread, déjà vu, blurry or tunnel vision, a strange sensation in our bellies, and/or the inability to speak.
Fortunately, my own auras last long enough that I’m able to text people to alert them about what’s happening (I have aphasia so I can't actually tell them) but that also means that I have longer to experience the terrifying knowledge that my brain is about to fuck me up big time.
7. Epilepsy is actually not unlike The Wizard of Oz.
Picture yourself fleeing an evil witch who wants to take your little dog Toto when suddenly a tornado strikes and you’re tossed around in a twister. Then you wake up and don’t know where you are (it’s definitely not Kansas) or why the fuck you’re surrounded by diminutive townspeople singing your praises in an absurdly bright, colorful, and unfamiliar place.
8. Seizure “hangovers” are the absolute worst.
Imagine the worst hangover of your life, combined with food poisoning, a migraine, sore muscles, and memory loss. Like Dorothy in Oz, you don’t just have a seizure and automatically return to normal.
“A seizure consists of a wave of abnormal electrical activity spreading through different parts of the brain," explains Dr. Jacqueline French, a neurologist and the chief scientific officer for the Epilepsy Foundation. "Once the ‘wave’ of electricity goes past, the brain that it affected becomes exhausted, and often is unable to function." That fog and confusion can last anywhere from a few minutes to a few days.
9. Seizures aren't just triggered by flashing lights.
In fact, less than 2% of people with epilepsy have photosensitive epilepsy, says Sanders. They're more commonly triggered by stress or being overtired.
Other common triggers include specific times of day or night (for instance, I’ve had most of my seizures just before sunset); sleep deprivation; stress; illness; flashing bright lights or patterns; caffeine, alcohol, or drug use; menstrual cycles or other hormonal changes; poor diet; and certain medications.
“Epilepsy affects everyone differently,” emphasizes Sander. “Although there can be similarities, people tend to have different triggers for their seizures, while some have none. Recognizing those triggers and trying to avoid them is an important part of self-management."
10. Having a seizure isn't the same as having epilepsy.
Seizures are symptoms of epilepsy, and you can have a seizure (or seizures) without being diagnosed with epilepsy. A diagnosis usually comes when someone has two unprovoked seizures (meaning it wasn't caused by an injury, infection, drug or alcohol withdrawal, or other health condition) or one unprovoked seizure with the likelihood of more, says Sander.
11. Medications can control seizures in most people with epilepsy.
Anti-epileptic drugs (AEDs), aka anticonvulsants, taken daily can control seizures “by reducing the excessive electrical activity in the brain that causes the seizures,” explains Sander. “The exact mechanism of AEDs is not well understood, but it is likely that different AEDs work in slightly different ways. The aim of optimal therapy is to get maximum seizure control with minimum side effects.”
According to the Epilepsy Foundation, medication controls seizures in about 7 out of 10 people with epilepsy.
12. Even though there are risks associated with taking anti-seizure medication during pregnancy, for many it would be riskier to stop treatment.
"Although there is no anti-seizure medication that is proven safe during pregnancy, the risks for several are low and are believed to be reasonable in the context of the risks of seizures during pregnancy if treatment is stopped,” says Stern. “Pregnancy is overall safer when the seizures are best controlled, and this should be considered in the planning.”
Faye Waddams, who has documented her experience in the award-winning blog Epilepsy, Pregnancy, Motherhood and Me, tells BuzzFeed, “My neurologist advised me that although there is a risk with any anti-epileptic drug, my epilepsy was so uncontrolled that the risks of not taking it and having a seizure, causing harm to myself and the baby, was greater than any risk from the medication.”
And although Waddams unfortunately did have seizures during her pregnancy despite the medication and was hospitalized several times, she is happy to report that she has “a healthy, happy, perfect baby boy who turns 1 this week." (Waddams also ran a half marathon “nine months to the day” after giving birth to Noah!)
13. People with epilepsy can lead very active lives.
Eric Wheeler is a marathoner and triathlete who — like many other athletes — also happens to have epilepsy. According to Stern, "A healthy lifestyle is important for everyone and it should not be avoided because of epilepsy. Moreover, some people with epilepsy find their seizures are better controlled when they are active. Exercise and recreation can help reduce stress, improve mood, and help brain health, which can benefit seizure control."
Of course, seizures should be well-controlled — through medication, healthy habits (like avoiding known triggers), and sometimes even brain surgery — before a person with epilepsy participates in sports like triathlons.
As Stern emphasizes, "the activities need to be safe ones with regard to the person's seizure risk."
14. Driving is...complicated.
State laws require that most people with epilepsy be seizure-free for six months to a year before they can drive again.
"The driving restrictions vary among the states, but six months is a common period of restriction after a seizure," says Stern. "This time period is somewhat arbitrary, but it relates to the fact that the likelihood of a seizure decreases as time passes after a seizure. Most of the risk is in the first year and much of it is in the first six months. The six-month period is intended to reduce the risk of injury at the time when the risk of a seizure is highest.”
The Epilepsy Foundation of America has a helpful database of state driving laws pertaining to epilepsy.
15. Epilepsy is probably more common than you think.
According to the World Health Organization, "Approximately 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally."
Many epilepsy advocacy organizations cite a startling statistic: One in 26 people will develop epilepsy in their lifetime. That number, based on a life expectancy of 80 years, "seems inaccurate because people do not talk about epilepsy even when they have it. In actuality, epilepsy is more common than Parkinson's disease, multiple sclerosis, ALS, and cerebral palsy combined,” asserts French, the Epilepsy Foundation's chief scientific officer.
16. And we're in good company with lots of famous people.
Celebrities with epilepsy include Prince (who referenced his childhood epilepsy in the song “The Sacrifice of Victor”), the Beastie Boys’ Adam Horovitz, Danny Glover, Lil Wayne, Neil Young, NFL twins Tiki and Ronde Barber, and Harriet Tubman.
17. People with epilepsy are strong and resilient as hell.
It's easy to get caught up in the things that people with epilepsy lose: our dignity, our independence (especially when our driving privileges are revoked), and, for many, our ability to participate in certain activities ranging from scuba diving to bathing (because of the risk of drowning).
That's why we appreciate every moment we have without a seizure, finding an anticonvulsant that is effective without debilitating side effects, and victories like being seizure-free for six months and longer.
We're fighting like hell to not only manage this disease but also dispel the stigma associated with epilepsy. We are people to admire, not fear, and the best thing you can do for us is to learn more about this disease and first aid guidelines. Don't be afraid to ask us questions — we want to talk about it!