Guest Post: On Epilepsy by Kirsten Kowalewski

 Kirsten is the co-EiC of MonsterLibrarian.com and also a kick-ass librarian in real life. I asked her to write a post for me after being left a the caretaker of a epileptic dog made me realize I had no idea how to help the dog, or people, having a seizure. -ML

There are a lot of misunderstandings about epilepsy. It’s an invisible condition, except when it’s not. Most people, including ER doctors, can only identify convulsive, or grand mal, seizures. However, there are many other kinds that manifest themselves in completely different ways. Mine do, and I’ve been refused treatment in the ER in the past because doctors didn’t believe me.

The silence of public figures with epilepsy doesn’t help. Supreme Court Justice John Roberts has never spoken about his; John Bryson, the Secretary of Commerce until just recently doesn’t even have a diagnosis and resigned less than two weeks after he had a simple partial seizure while driving (he caused two car accidents). It is actually possible to work in a position of high responsibility in government with epilepsy; former Senator Tony Coelho advocated for people with epilepsy and all kinds of disabilities. By refusing to speak out, and by resigning, Roberts and Bryson are implicitly suggesting that there’s some reason to feel ashamed and to remain silent. And that makes dealing with seizures when they happen much more difficult for everyone.

So what do you do to keep a person who is having a seizure safe? It can depend, since there are different kinds. For a convulsive seizure, also known as a grand mal or tonic clonic seizure, here’s what you do:

-Clear the area. Someone in the middle of a grand mal seizure is not conscious, but is still making jerky, uncontrolled movements Clutter and sharp corners are not a good combination with that.

-If there’s something soft you can put under the person’s head, like a pillow or jacket, that’s excellent. Banging your head on a hard floor hurts.

-The biggest worry during a seizure is difficulty with breathing. Turning the person on her side can help keep the airway clear. Loosening clothes (like ties) that could cause difficulty with breathing is also a good idea.

-Don’t try to hold the person still, unless you want a black eye. Someone in the middle of a convulsion does not have control over their body, and can pack a surprisingly powerful punch.

-Never, ever, try to force something into the person’s mouth. It is NOT TRUE that a seizing person can swallow her tongue. If you try sticking your fingers in, you WILL be bitten. If you try sticking anything else in, you will be obstructing the person’s airway. It’s crazy, but there are still people who think it’s a good idea to stick a wallet or a tongue depressor in the mouth of a person who is having a seizure to keep her from swallowing her tongue. I repeat, it is NOT TRUE that a seizing person can swallow her tongue.

-Don’t attempt to start artificial respiration unless the person actually stops breathing.

-Stay with the person until the seizure ends, and offer to call a friend or relative if the person seems disoriented. As long as you can determine that it was an epileptic seizure (which can be done by checking for medical ID indicating that the person has epilepsy), unless the seizure lasts for more than five minutes or the person stops breathing there is probably no need to call an ambulance. It’s an added expense, and chances are that once the seizure has stopped, the folks at the ER won’t do anything else. There are circumstances that warrant calling an ambulance, though:

-If the seizure DOES last more than five minutes or the person is having difficulty breathing.

-If another seizure started immediately after the first one ended.

-If the seizure happened in the water

-If the person is pregnant, injured, or diabetic.

-If the person does not regain consciousness.

Partial, psychomotor, and temporal lobe seizures, are nonconvulsive and may be harder to identify. They’re often characterized by blank staring, chewing motions, drooling, facial twitching, fumbling with clothes, wandering, shaking, and confused speech. People who have had nonconvulsive seizures in public are sometimes arrested for drunk and disorderly conduct. It’s important to remember that even though the person may be walking and talking, perceptions of what is going on are way out of whack. It can be a gradual thing or happen suddenly. I’ve held long phone conversations and packed suitcases while on the verge of a partial seizure. Some people smell strange things, like bananas. Other people do things that seem reasonable that they won’t remember later. I’ve personally been caught typing on an invisible typewriter- in public places the weaving back and forth and nonresponsiveness are not necessarily identified as seizures by members of the general public. If you do see this kind of seizure the best thing to do is speak calmly and gently try to lead the person out of harm’s way (so that they don’t walk into a busy street. When I say gently I mean VERY gently– again, a person who is having a seizure is very strong, doesn’t know their strength, and has altered perceptions, so grabbing on could mean getting decked pretty hard. Sometimes, rather than guiding the person, it might be easier to move hazards out of the way- clear space so that the person doesn’t trip or run into things. If you see that it is part of an escalating situation do your best to explain what is going on. Again, most people just don’t know, and it may even take time to convince them that what they are seeing is a seizure.

If you’re able to time the seizure, that’s great. It is important to notice when it started because a seizure that lasts more than five minutes can be an emergency, especially if the person stopped breathing. Wait for the person to return to consciousness before leaving. Make sure he or she knows the date, where they are, and where they’re going next. If it’s possible you might want to see if the person has an emergency contact that you can notify about the seizure. The confusion that follows the seizure can last a long time, and the person can still end up hurting themselves or doing unexpected things if there’s no one there to make sure the person is fully aware.

There are more people with epilepsy than there are with autism, multiple sclerosis, Parkinson’s, and cerebral palsy combined, so chances are good that you know someone who has seizures. If you are ever present when one occurs, I hope this information helps you handle the situation, and keep that person safe.