Using Facebook to start getting the word out.

Many have FB accounts with at least 100 or more friends. This is a way to start some critical thinking and maybe some conversation about migraines and the hell they put us through. Future research is only going to happen when we get the public thinking and talking about this problem.

Facebook is a very unique and effective way to use viral dynamics to get some info out. Maybe get your friends and contacts talking.

So very often I will have someone respond to me with "really? I never knew that about migs". They may google your question and end up learning something else also.

The question can cause several things to happen whether people post an answer or not. Your friends will all read it. Your friends will also see that nobody else knows either. Your friends may have to admit they either don't know or care. There will be so many different dynamics in play just by having the question hanging out there.

All of us with fellow mig FB friends should post a comment to keep it on the main page. Otherwise it will just hang on your wall.

In the last 24 hrs I found out all of my friends that are in EMS don't know the difference between a tension headache and a migraine attack. I suspected a couple wouldn't.

My wife does and has found the drug Inapsine does a great job of helping at least until she gets them to the hospital. She also knows which doc is on in the two local hospitals. She can advise the patient which ER will give them better care at that given day.

So she will post that under my question to "smoke out" the others as to maybe think about using it on the next mig patient they transport.

Here is a link to where I posted this questions on another forum I participate in. It isn't just other people, fellow migraineurs have no clue. Read NickyBlade's post.

http://www.homesteadingtoday.com/showthread.php?p=4489812&posted=1#post4489812

I don't mind my migraine situation being discussed on FB. Some migraine friends I have do mind, though. Please be careful not to bring the topic up about someone else unless you are sure he/she is cool with it.

The FB posts are just a question to stimulate thought amongst your FB friends. There would not be any reason to name other people. We want some discussion to take place and it doesn't need to involve any one person other then yourself.

I am trying some tactics I remember from back in a communications class I took in school. Questions open up our brains. A Statement immediately puts us on defense as to whether we agree with it or not. Think about the commercials on TV that start with a question. They always get your attention better then a snippet of info. or a statement.

Oh my!!!. Well I just hope she always has medication that works.....
We are never going to get anywhere whilst we have people with attitudes like this.

I used to get a migraine a month. Now I have one most days.
I never lie in a dark room, I dont know anyone who does, not in that sense.
Who in their right mind would not treat a migraine if they could??

Our task is huge.
I wonder how many people on this forum have similar attitudes?
My neighbour gets migraines....if she drinks too much wine.
She is not stupid, she doesnt often do that, and she knows the difference between that an a headache.
So what does it take??

We certainly do have our work cut out. Not only to educate but tear down the misinformation and stereotypes that are out there. Our FB friends responses or lack there of will give us a better idea where to start.

We don't want it to deteriorate into a debate or for us to be up on a soap box lecturing. Just post questions and stimulate thought.

You can lecture to a group of people in room and know a number of them will be distracted or daydreaming. But on FB people will read your posts. And they will then have to ponder if or how to answer. That then triggers more thought.

It's also a way of "calling them out" without saying anything.

Even if no one comments they will see "Slappy Bob" has 193 friends and none of them knows or cares. How come?

I'm in! My FB page is always covered in Migraine links. I just posted the question, "Do you now the difference between a headache and a Migraine?"

Teri

Thank you Teri. I posted about not having any dedicated preventatives/treatments as well.

And we need to cross comment to keep the post active. That will also reveal how many of us are out there to the rest of our friends.

My question is not getting much activity. But my friends know me well enough to sense a possible trap. They also know a debate would be a losing proposition.

So I had to smoke them out some more by focusing on the health care providers on my friends list. I have many more tactics to use to shake things up a bit according to my particular collection of FB friends. I have several chiropractors on my list and I know I can elicit some feedback from them.

Even if one of our posts gets a little heated that will only get more attention. As long as we don't call names or insult we can keep it moving.

More people will slow down to look at a car accident then a commercial billboard.

If anyone on here hasnt yet joined and wants to join my page on FB for migraine/fibro/IBS (the so called co morbids).
All are very welcome and perhaps we can stir up some of the quiet members on there.
We are small, but we do get some good comments. I have 3 or 4 doctors on there also.
Absolutely no pressure of course......just a welcome.

This forum is a great place for support, info and networking but it's mostly preaching to the choir. That is why when we can we should be "Takin' it to the streets" and make sure the people around us in our lives know what we are dealing with. Just dispelling the myths and stigmas will make our lives a bit easier.

It's not like an STD, reproductive/plumbing or horrible digestive problems that we would rather not talk about. We do have a wide latitude with when and where we can discuss it. Lets start doing it. Nobody else is going to do it for us.

Brent,

I know that some of us here have forum "identities" and for whatever reason dont want them blown, nor do they want to discuss migraines on FB. I dont see how what we are trying to do should encroach on their privacy,but perhaps it could, and if they are concerned we should probably address that?

My situation is I use my real name, and everyone knows about my crap anyway.
I havent been able to work for 20 years (not totally migraines...IBS and FMS too), and therefore nothing can be compromised.
Clearly not everyone is the same. Some people manage to work, and also have friends and family they don't wish to reveal their migraines to. Me, I have NOTHING to lose. But what do you say....

Pen

I dont know this band over here, but you might like to read his story.
The band is Wilko...I posted this on my FB page too.

http://migraine.blogs.nytimes.com/2008/03/05/shaking-it-off/

I understand the anonymity issue completely. With FaceBook it's just an option to use to increase awareness. There may be some members that just don't have time or energy to exploit it also. It's an idea that some of us might explore and some not. Nobody should be exposing other mig patients in the process. If a mig patients wants to add to a post that helps but it's not needed to keep the process going.