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Time to break out the ribbons again.

November 29, 2011
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We are all more than the sum of our fatness, which is why we have Temperist Tuesday, to share those intersecting interests that we believe others would benefit from understanding better. Today, erylin shares her newfound understanding of epilepsy after experiencing her first seizure three months ago.

I love seeing what various ribbons mean in activism awareness circles. Everyone knows pink is for breast cancer, yellow is for supporting our troops or those missing in action, green is for the environment, and red is for anti-drug campaigns. But did you know that teal is the symbol for ovarian, cervical, and uterine cancers, as well as sexual assault, polycystic ovarian syndrome, and tsunami victims? Or how about grey being the symbol for asthma? Today, I am here to talk about one specific color and one specific disorder.  The lavender ribbon is the symbol for epilepsy awareness, and I bring this up because November is National Epilepsy Awareness Month.

I know, I know, I am coming late to this awareness month, but as you fellow readers may or may not know, I have recently been diagnosed with epilepsy. You may have also noticed that I have sort of been absent this month. The bad news: I had two more tonic-clonic (the technical term for grand mal) seizures on November 5. This time I was totally by myself and had a stomach bug to boot. I managed to get pretty bruised up, but am otherwise intact.

The good news: we are that much closer to understanding my seizure trigger, which, in my case, is low blood sugar. It’s a common trigger, but difficult and scary as hell for my eating disordered-ass to manage. But I digress. I come late to this awareness month because I have been dealing with the disease itself.

Epilepsy awareness has several goals: they want people to understand what epilepsy is, who can have it, what can cause it, and what to do in case of a seizure. Epilepsy is a common, chronic neurological disorder characterized by seizures. There are several types of seizures: some involve muscle spasms, while some involve blanking out for anywhere from a few seconds to a few minutes. Depending on where the electrical spark is going off in the brain, the seizure can also be an hallucination — a smell or a sight that isn’t real.

For me, my seizures start out as an odd smell that isn’t there, followed by a strong sense of déjà vu combined with nausea. This is known as a complex partial seizure. At that point, if Idon’t listen to my body and get food into my system stat, I may go into a larger tonic-clonic seizure, which lasts about five minutes and makes me sleep for at least an hour afterward.

Anyone can have a seizure, and many people will have at least one at some point in their lives. Currently 1 in 10 people will have one seizure at some point in their lives, and 1 in 100 people will have recurrent seizures, which is then classified as epilepsy. Would you say that you walk past 100 people every day? Sit in class with at least 100 people? Ride the train with 100 people? Would 100 people be in the mall while you’re shopping? At least once every day you walk past someone with epilepsy.

So, what are you supposed to DO if you see someone have a seizure?  Here are some seizure first aid tips directly from the Epilepsy Foundation:

First aid for epilepsy is basically simple. The goal is to keep the person safe until the seizure stops naturally by itself. It is important for the public to know how to respond to all seizures, including the most noticeable kind — generalized tonic-clonic seizures, or convulsions.

When providing seizure first aid for generalized tonic-clonic seizures, these are the key things to remember:

  • Keep calm and reassure other people who may be nearby.
  • Don’t hold the person down or try to stop his movements.
  • Time the seizure with your watch.
  • Clear the area around the person of anything hard or sharp.
  • Loosen ties or anything around the neck that may make breathing difficult.
  • Put something flat and soft, like a folded jacket, under the head.
  • Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers. It is not true that a person having a seizure can swallow his tongue. Efforts to hold the tongue down can cause injury.
  • Don’t attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
  • Stay with the person until the seizure ends naturally.
  • Be friendly and reassuring as consciousness returns.
  • Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.

As  someone who does have the big, generalized tonic-clonic seizures, I can’t tell you how important it is to know what to do. KEEP STUFF OUT OF MY  MOUTH. So many people seem to think that you have to keep an epileptic from swallowing their tongue. This is BS. I will just hurt myself on whatever is in my mouth. Get me on my side, get everything out of my way, and be patient. I will be super-confused and ask if I had a seizure about 34 times. Just keep saying yes.

Now that you are in the know, the Epilepsy Foundation has even designed a nifty little quiz to see if you learned anything. And thanks for taking the time to learn about something that really could help save a life. And dust off that lavender ribbon people!

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8 Comments leave one →
  1. November 29, 2011 10:08 am

    Oddly enough, on Saturday we went to the Chinese Buffet and saw a woman have a tonic-clonic seizure. Veronica, who should have been a doctor, snapped into action and covered all of the first aid information you provided. She even prevented people from putting anything in the woman’s mouth. Hell, even the police officer who had been eating at the restaurant didn’t seem to be aware that you need to keep the person on their side during a seizure.

    Awareness raising is important and can save lives, so thanks for sharing this info, erylin!

    Peace,
    Shannon

    • November 29, 2011 10:16 am

      im really glad that the information helped someone so soon! The only reason i knew what to do before i had seizures is i worked in group homes for the mrdd population…seizures are far more common with the mentally retarded and developmentally disabled. basically just think of an epileptic as a blackout drunk….get them away from stuff. get them on their side so they don’t puke and choke themselves themselves. not everyone does, but i know i sometimes vomit when i seize.

      • November 29, 2011 10:38 am

        I used to work with MRDD adults too! Ours was home-based, though. Most were fairly high functioning, but needed support with day-to-day living (cooking, cleaning, paying bills, etc.). It was the best job I’ve EVER had. We had extensive training on seizures, CPR and the rest, but I have since forgotten all of it. Thankfully, V is a wealth of medical information.

        Peace,
        Shannon

  2. Fab@54 permalink
    November 29, 2011 1:01 pm

    I am very thankful for the information and “first aid” instructions about what to do for someone having a seizure. We should all commit them to memory and refresh that memory periodically.

  3. November 29, 2011 4:06 pm

    I will definitely remember this stuff! I’m also glad that there’s an “awareness month” that seems to be bringing good to someone. April is Autism Awareness Month, complete with stupid puzzle piece ribbons. It’s spearheaded by Autism Speaks, which is an organization basically devoted to showing the world What Terrible Burdens Autistic People Are. As someone who can basically function, I find their bullshit offensive in the extreme.

    At the very least, though, I can remember to basically think of an epileptic like a blackout drunk, at least in terms of treatment. If, G-d forbid, someone has a seizure in front of me, hopefully I can help!

  4. Emerald permalink
    November 29, 2011 4:15 pm

    I was once in a theater company with a young man who had epilepsy, and while most of us knew what to do (I saw him have a couple of fits during rehearsals, never actually on stage though), we did have the odd misunderstanding – someone who was under the mistaken impression he was diabetic (he said he thanked his lucky stars she wasn’t ever the only person around to tell a paramedic that), and, yes, people who’d assume they needed to put something in his mouth (he’d broken teeth before because of people trying to do that). The biggest issue, given that stress was a big trigger for him, was our director at the time, who thought it was great to motivate people by yelling at them. Acting itself didn’t stress him out that much, and I’m pleased to say he’s still in the business.

    Your advice is invaluable for anyone who doesn’t know what to do in those circumstances – thank you.

  5. Tyesha permalink
    June 6, 2012 11:07 am

    “For me, my seizures start out as an odd smell that isn’t there, followed by a strong sense of déjà vu combined with nausea. This is known as a complex partial seizure.”
    THAT STATEMENT HELPED ME A LOT AND EVEN MADE ME FEEL GOOD. WHEN PEOPLE WOULD ASK ME HOW DOES IT FEEL WHEN HAVING A SEIZURE OR HOW DO I KNOW I AM GOING TO HAVE ONE I NEVER REALLY KNEW HOW TO EXPLAIN IT BUT I ALWAYS SAID THAT IT FELT LIKE DEJA VU. KNOWING THAT SOMEONE ELSE FEELS THE SAME WAY MADE ME NOT FEEL DIFFERENT IN A BAD WAY. YOUR BLOG REALLY HELPED ME UNDERSTAND SOMETHING THAT I DIDNT FOR 15 YEARS. THANK YOU!

    • June 6, 2012 11:39 am

      oh you are SO welcome. its good to know i too am not the only one that feels this way.

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