1. Epilepsy is a brain disorder that causes seizures, which are basically like electric storms in your brain.
Epilepsy, also known as a seizure disorder, is a disorder of the brain that causes recurrent, unprovoked seizures. Those seizures are caused by surges of electrical activity in the brain, often compared to an electric storm.
In most cases, the cause of epilepsy is unknown. “Our challenge now is to understand the genetic architecture underlying each individual epilepsy,” Dr. Ley Sander, medical director at the Epilepsy Society in the U.K. and professor of neurology at University College London, told BuzzFeed. “We are also trying to understand why some people will respond well to a certain drug while others won’t.”
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.
For more on how to care for someone during a seizure, check out this video featuringStar Trek stars Zachary Quinto and Chris Pine for Talk About It.
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.