about perhaps writing a book about what we go through. Dont know exactly how to go about it yet and what to do but i really want to do it. What we have is really rare and there is really not alot of information about it out there. Not even on the internet.
Was thinking about something on the lines of maybe anonomyus write ins of what an episode is like. And how it effects your life.
What do you guys think? Just throwing it out there.

Wisdom literature can't emerge before we are 75+.

LOL

Told you I was just throwing it out there. LOL

i think its a great idea !!!!!

I think it's a great idea also!  I thought about that too, but I'm a horrible writer.  One thing is for sure, we need more attention to this issue so that more doctors/other people take us seriously.

the more that is put out there the more research will hopefully be done, which means hopefully one day there will be a cure. fingers crossed

The more we can get noticed the better our chances of someone taking notice.......wokka wokka wokka. If you need some stories I gotcha back! Knock yourself out

If you're looking for thoughts and ideas, go to Youtube and search "Cluster Headaches".  There's stuff in there would make a CHead cry.

You may also consider some of the great quotes that have turned up here over the years (which would make a nice thread in itself).

Thanks for your support everybody. I have been getting a lot of yes...let's do this . And a few.... No.. You are letting this rule your life and you need to just live it and quit harping on it.

I came up with a. Name for the book though...

Dancing with the Devil.


Talked with a few publishers and they seemed interested.

Have been toying around with it.

Three men stalk the gloomy back-alleys of the city's notorious slums. Spiderman, a 28-year-old drug lord, embarks on a routine patrol through the shadowy streets of Coréia, the sprawling slum he controls. Inspector Leonardo Torres, a muscle-bound operative from Rio's drug squad, inches through the alleys of another shantytown, shots ringing out around him. And Pastor Dione, an evangelical preacher intent on ending Rio's drug conflict, trawls the slums for lost souls.
Dancing With The Devil.

so i am taking it there is another book called this already?

Bonnie lee wrote on Aug 5^th, 2012 at 6:25pm:

so i am taking it there is another book called this already?

Ya really should use Google.

           Potter

The idea is the thing, Bonnie, and the details can look after themselves later. As to the title,  I'm sure there's many here only too happy to help.

I'll kick it off with "Beating Beasties".

   You should name it Stealer of dreams

living the devils dance


we dont just dance.  we live this $^%$