Misconceptions about Epilepsy

Over the weekend, my sisters and I attended a health talk about nutrition for people with Alzheimer’s. Since the speaker was talking about the brain, one of the participants went up to him with a question about epilepsy or how to handle someone in a seizure because she had seen her neighbour having one.

Sad to say, many people still have misconceptions about it or do not know much about epilepsy. She was talking rather excitedly.

“Its Gila Babi.” ; “We put a spoon in his mouth.” ; “He’s an electrician, I think it must have affected his brains.”

I wanted to tell her what to do and what not to do when you see someone in a seizure but although she was asking that very question “What to do when you see someone in a seizure.” I felt that her mind was closed to the replies.  She was talking agigatedly rather than listening.

I guess that this misconception about epilepsy compared to other disorders is because of the nature of it. A seizure is very frightening to watch. The person loses conciousness and loses bodily functions and controls, eyes may be jerked upwards, face may turn blue, person may lose bladder control, hands and legs jerking uncontrollably, teeth biting down very very hard on the tongue, frothing around the mouth. Horrible isn’t it? Perhaps that is why people who don’t know much about it call it gila babi! Literally translated that means mad pig. Or they might think that the person has gone into a trance or is possessed by some devil. For it may appear that way.

When I was young, I was told by classmates and teachers (yes, teachers too, teachers who tried to pry a spoon into a poor epileptic girl’s mouth each time she had a fit. I think the teachers shouldn’t have been this disinformed. If you have a child who has epilepsy you should make sure his/her teachers know what to do and what not to do), I was told that if you get bitten by a mad dog thats what will happen to you because when you have a seizure you sometimes foam at the mouth. Have you ever heard that one before? Of course the one about being possessed by spirits is a common one too leading to many drinking “fu” drinks instead of getting the proper medication for it.

So am I a mad pig? Well, I may be a bit mad at times and I am a pig when I see food but I don’t have gila babi. I have epilepsy. It was diagnosed when I was 41 (yeah yeah, I’m that old). I have only had about 5 seizures in all. 3 of them occured on the same day. I am taking medications and my seizures are under control. Besides medication, I try to eat well, sleep well, exercise and not get stressed up over little things. The stress part is harder to control because I have poor emotional intelligence. Emotional Intelligence is a very nice word for someone who likes to scream and shout over small small things. 😉

So tell me, what do you know about epilepsy? Have you ever witnessed anyone having a seizure? How did you feel? Helpless, scared or afraid? If you don’t know much,  you can read my previous post Epilepsy as explained by MG or this one What is Epilepsy from eHealthMD or this interesting one Many “believe myths” on Epilepsy. By knowing what to do to help someone in a seizure, you may be helping someone tremendously so do read up if you have the time.

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  1. kate says:

    Thx for the info. My son has had 3 epileptic fits over the past 2 years. In all these times, he had them within an hour after he fell asleep. The first time, it was scary and we (the family) did all the wrong things – we tried to wake him up, we sat him up, shook him, my husband hurt his hand when he tried to pry open his mouth… We were so ignorant. The medication made him ‘dopey’ – slow response and generally spaced out. So we stopped and I make sure he has enough sleep, exercise and nutrition. Thanks again for the info. I also feel that excessive PS2 gaming stimulated the brain too much and could have caused these episodes. What do u think?

    The best thing to do is not to do anything accept to make sure that the person will not hurt himself. Remove any hard objects that they could knock into. Make them lie in the recovery position afterwards, which would be lying on the side to prevent anything from blocking their airways and so that they don’t swallow any vomit etc that could cause pneumonia and other complications. As for medication, I think it would be best to check with your child’s doctor before stopping. There are many drugs out there, some of which may be more suitable and not cause those side effects. The best person to check with is still the doctor. There is one type of epilepsy that is brought on by flashing lights which is called photosensitive epilepsy. Those who have that may perhaps need to take rests in between using the tv, pc etc. However the best person to tell if your son is affected by those is yourself and the doc. The best way to help a doc diagnose is to give the doc a good description of the seizure. You should never stop a medication on your own without the doc’s approval. I read somewhere that the meds is like the dam that holds the seizures at bay. Stopping the medication suddenly would be like releasing the dam and increase the chances of a seizure so always consult your doc first. I know it doesn’t sound very reassuring but I hope that helps. And if you ever need to talk to someone, you can write to me. I’m a mother too and I think it’ll be more frightening for me to witness my kids having a seizure than for me to have one! My only fear is scaring the kids but we talk about it openly so they won’t be scared.

  2. henny says:

    Thanks MG for your information (I had been to your previous post about it). I remember when I was in Elementary school one of my friend got her seizure and as a little kid I was so so affraid like my other friends. Until this time I’ve never had the same experience like that. Now I think I know what I’ve to do when someone around me get seizure.
    Take care and hope you always be in good health 🙂

    Thanks. 🙂

  3. blurqueen says:

    Thanks for sharing your experience and information. Very enlightening.

    So you know what to do now to help someone in a seizure hopefully. 🙂

  4. Moomykin says:

    Once in my late teens I helped out at a camp for younger teens and befriended a girl who told me she has epilepsy. On the second night, I slept beside her, it happened after lights out, one moment she helped me pick up my glasses and the next her whole body was shaking.

    I knew it was nothing that would endanger others, but I really didn’t know how to help her because she did not tell me what to do if she does get an attack. So I called a coordinator, and she tried to put a spoon into he mouth but could not. It was actually quite short seizure. And after she calmed down, she was asleep again, as if nothing had happened.

    The next day I talked to her about it. She called home and got her medication from her mom. But for the rest of the camp she was fine. The good thing was she was still accepted by many and made many new friends.

    That’s my one and only actual encounter of someone with epilepsy.

    Take care, MG. Glad I found out more about this.

    Now you know that putting a spoon or other object in the mouth is actually the wrong thing to do. It might block up the person’s airways or break their teeth or cause them to accidentally swallow the object which is much worse than just letting the seizure pass and making sure they lie down on their side and recover on their own afterwards. It is also not necessary to call the ambulance etc unless the person cannot recover after 5 minutes in which case it will then be a medical emergency. Otherwise like your friend they will just fall into a deep sleep afterwards and the worse that they feel is a hurt tongue and tiredness.

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