I think you make a lot of sense, Svenn.  Just because someone else hurts differently than I do doesn't make their pain any less important.  I think sometimes we tend to feel that because our pain is labeled as the most severe known to neurology that everyone else is beneath us and should be ignored.  Yes we do need more attention given to CH, but that can be accomplished more easily through cooperation than through pushing others aside.

JMHO
Jerry

Quote:

It ain't a contest.

My point exactly.

Quote:

You don't say.

Nobody's saying it is, but how on earth do you even propose to try to describe this level of pain to someone who doesn't experience it? Just think about it - you don't have to answer.

If we hitch our cart to a big, running horse (i.e., the migraine horse), we're going to get where we need to be faster. Period.

As far as the "my pain's bigger than your pain" BS, you ever hear the phrase "You catch more flies with honey than you do with vinegar?"

There's nothing archaic about an organization having a focus.  Most maladies have a dedicated organization that works specifically for their own cause.  OUCH (the Organization for Understanding CLUSTER HEADACHE) was started to be something that did not exist anywhere else: an organization dedicated solely to cluster headache sufferers and their supporters. That is what the founders started. That is what the incorporation paperwork says. That is what our tax exemption paperwork says. That is what the mission statement says. Nowhere in there does it state that we will work to cure tension headache or migraine. 

That being said, we have never refused to work with other organizations.  OUCH is a member of the World Headache Alliance.  Helen represented OUCH at their annual meeting and let them know we would work with them in any way we could.  We have an ongoing relationship with the National Headache Foundation in which we have agreed to work together whenever possible.  We can and will work with other organizations towards our common goals, but that doesn't mean we should change our focus or mission or dilute our message.

I have nothing against migraineurs.  Cluster headache sufferers have indeed benefited from research into migraines, but people don't join an organization and donate money to it if they are not going to get something out of it.  If migraineurs become a large part of the OUCH membership and a major financial source for the organization, then they will demand that the focus of the organization shift to migraine and that any money they donate be spent on migraine research. OUCH will become just another migraine organization.  That is just how things work and you all know that.

The world doesn't need yet another migraine organization.  Almost every other headache organization out there is a migraine organization. They are all out there raising awareness of migraines. There are a vast number of experts telling people how to treat and live better with migraine.  All their money, time and effort goes into migraines. The government, the university hospitals, the pharmaceutical companies all spend most of their headache research money on migraines.

If we are not going to focus on our needs, then why bother at all? If we were going to become just another generic headache organization, we might as well shut down totally and donate all our resources to an existing, well-established organization such as the National Headache Foundation or the American Headache Society that is

already

working "for the benefit of all headache sufferers" (but focuses mainly on migraine) and has all the connections in government and in the National Institutes of Health and similar organizations.

OUCH was created and exists solely for cluster headache. People with tension headache or migraine or hemorrhoids for that matter are welcome to join OUCH if they wish.  OUCH will work together with other organizations towards our common goals, but the focus of OUCH should remain cluster headache.

Mike Day
President
Organization for Understanding
Cluster Headache

Nevermind, Phil. My bad for even trying.

Quote:


I'm going to make a suggestion, my friend, don't ever tell me something like that after I've come off a 5 day straight migraine.  I might just  be tempted to shove your oxygen tank where the sun don't shine.   Pain is relative to the person experiencing it.  I am a supporter to a ch'er and I also have a daughter that has certain conditions that cause her chronic pain.  Neither has ever told me that their pain is greater than mine and I would be extremely hurt if they did.

karma wrote on Oct 5^th, 2008 at 9:29pm:


Thank-you karma.

And for the record, I don't think that ch'ers and meegrainers (as Chuck would say) should be grouped together.  They are still vastly different and with migrainers being the largest of the two populations, ch'ers would end up getting lost in the mix.  Also, what works for one, doesn't necessarily work for the other and vice versa (oxygen has NO effect on my headaches, and trust me, I've tried).

'darlin who doesn't feel so 'darlin right now

Delta, I'd like to direct you back to Phil's post, in which he explains, he is both a meegrainuer as well as a CH'er. He also, in the not-too-distant past, stated he made the mistake ONCE .
Pain is pain, gang, maybe for once, I am in a position where I can speak. Big picture, pain is pain! I've always believed tht noone, but NOONE can quantify someone else's pain. Have I learned from this place? Yes!!!! I would NEVER get into a mine-is-bigger- than- yours match.
As for Svenn's dream, ANYTIME more people can become aware of CH, it's a step forward! Tell Migraine sufferers! Tell ANYONE who will listen, this is an affliction that NEEDS attention...and money, and research........and, ultimately, a cure.  When voices join in chorus, the music gets louder.
I've seen the destruction caused by CH. I don't want to see any more!
And, no, I am not a sufferer, nor am I a direct supporter. I'm someone who has come to care about this cause, I speak of it daily, I tell people about it and ask them to meet my friends here. Don't ask me to differentiate the pain, beause this is simply, one of my causes........ and.........pain is pain....this is ONE pain I just might see ended in my lifetime........
Cathi

BUMP!
You want Svenn back?
Have a productive, non-judgemental open forum regarding the focus of Svenn's Dream.
Cathi