Misguided attempts to help can cause more damage than the seizure itself.
By Kurt Eichenwald, Everyday Health
The top fear for people with epilepsy is not necessarily having seizures. For many of us, it is other people: the misinformed and frightened who can injure us or even kill us as a result of their ignorance.
Our teeth are broken, we are suffocated, and our seizures are intensified by the well-meaning people trying to help while relying on old wives’ tales.
This is one of the most frustrating things about living with epilepsy: Before telling anyone what to do for us during a seizure, we first have to explain all the things not to do.
The widely held false beliefs can sometimes cause more damage than the seizure itself, so “don’t do that” is where we have to start.
Don’t Put Anything Hard in Our Mouths
All of you reading this, swallow your tongues, right now. Feel that little piece of tissue pulling from the floor of your mouth to the underside of your tongue? It’s called the frenulum, and it’s why swallowing your tongue is impossible. It does not happen. Yet endless numbers of people believe in tongue swallowing despite the illogic of the idea because they have heard others say it exists, who have heard it from others, who have heard it from others, and on and on.For most people, this ignorance is inconsequential. For those of us with epilepsy, it can be life-changing. The tongue-swallowing myth has been applied almost exclusively to seizures, with the ridiculous and false prescription that an object — such as a spoon — must go in someone’s mouth during a convulsion.
But the reality of a major seizure makes this ignorance dangerous. While we don’t swallow our tongues, our jaws do crush together with a strong and uncontrolled pressure. For me, the crunching sound from my teeth during a convulsion is so loud it can sometimes be heard from another room.
When the reality of jaw clenching is combined with the fiction of tongue swallowing, the result can be brutal.
In my 20s, I met a man whose bottom teeth had been broken during a seizure. The reason? The witnesses were so frightened that he would swallow his tongue that they tried to pry his mouth open with a bottle opener so they could put a spoon inside.
A woman on my Twitter feed told me that others had managed to get a wooden spoon in the back of her mouth before her jaw locked down; her back teeth shattered.
During one of my seizures, someone managed to get a pencil between my teeth before the jaw clamped shut. The pencil lay across my back teeth on both sides, and I bit right through it. Pieces of pencil fell to the ground, and a chunk stayed in my mouth. The witnesses watched, horrified, as they wondered if I would suck the pointy piece of wood into my lungs.
The only reason ever to put something — always soft, like a wallet — into the mouths of people experiencing a convulsion is to prevent them from biting their tongues or lips. If it’s apparent that a seizure is coming, do it then. If the mouth is open when the seizure starts, that also works. Once the jaw has locked down, however, forget it. The biting has already happened and there is nothing to be done.
Don’t Hold Us Down
Even before I experienced my first convulsion at 18, I never understood why people would hold down someone experiencing a seizure. What was the goal; what was the point? I’ve come to believe that witnesses feel they have to do something, and this is their best idea.It’s not. It’s the worst. The first time I saw someone experiencing convulsions, a bunch of people piled on top of the poor teenager to hold him down. They gripped his arms and legs, pushing them to the floor, all while exerting so much pressure on him that the boy was struggling to breathe.
Also, remember: This is not pushing back on someone who is choosing to, say, move their arm. No matter what you do, the neurons controlling the motion are still firing, so the best your actions can accomplish is nothing, and the worst is breaking bones or killing someone.
Holding someone down, essentially fighting with their brain, causes an even more perverse outcome: It can make the seizure worse. The actions of someone gripping a person during a convulsion send signals to the brain while it is firing uncontrollably that cause it to fire even more.
Bottom line: Don’t do anything that has no purpose. Holding us down accomplishes nothing and can hurt us badly.
Seizure ‘Dos,’ Starting With ‘Don’t Panic’
Those are the most important “don’t dos.” So what should be done? What’s amazing is that there is so little for bystanders to do that I can sum it up with fewer words than it takes to dismiss all the myths.First of all, don’t panic. Watching someone experience convulsions is like watching someone fall off a cliff: Once it starts, there is not much to do but wait for it to end. But a few small things help:
Move People Out of Dangerous Positions
I have experienced seizures facedown in gravel and in the middle of a row of immovable wooden chairs. In both of those situations, the seizure was injuring me, and so I should have been moved, if possible. The gravel experience was the easiest to remedy: Just flip me over. But no one did, so my face was cut up.Place Something Soft Under Their Head
Having a seizure on a hard surface can hurt the head. So grab a blanket, jacket, pillow, or something else soft and put it under their head.Turn Them on Their Side
Some people who have seizures can throw up or generate significant amounts of saliva, both of which can choke them. If they are on their side, any potential obstruction pours onto the ground and doesn’t go down the throat.If You Know They Have Epilepsy, Don’t Call an Ambulance ...
No emergency room has ever done anything for me. When the medical staff hear that someone with epilepsy has arrived, they push the stretcher into a corner so the person can sleep it off.Because emergency rooms work on triage, tending to the most-urgent medical problems first, and people with epilepsy get progressively better as more time passes from the seizure, we can wait for as long as a day to be seen.
I have repeatedly been forced to contact friends or family to come get me and then sign myself out against medical advice. And that little nap costs many thousands of dollars.
… Unless the Seizure Lasts Longer Than Four Minutes
When someone falls into a convulsion, check your watch, and start timing. There is the possibility of status epilepticus — a nonstop seizure that can cause significant damage and even kill.Ambulances have drugs on board that stop those types of convulsions instantly. But because those kinds of seizures are relatively rare, there is no reason to call an ambulance unless four minutes have passed. At that point, play it safe, and bring in the professionals.
Just Do These Few Things, and We’ll Be Fine
There are a few more details I could give, but in truth, if people could simply remember these dos and don’ts, those experiencing a convulsion should be fine.And if only everyone in the world knew these rules, those among us with epilepsy would not have to be so frightened whenever we leave our homes that we might be killed or injured that day because of uninformed best intentions.
