Hello friends
I chose Martin Luther King`s famous words in this thread in hope that OUCH start look in other directions in their work.

I have since Nashcon 04 i Nashville told you that there is no way you can get something done standing alone.You got to start work together with other headaches-organitations.If you all remember the last slide in my speach at milcon06,those figures are still valid and should speak for themself and tell you what to do.

Now both Pete Batcheller and Chuck Setsco say more or less identical things about our symposiums.

I have to admit that its kind of frustrating to see how OUCH has been developing or should i say more or less standing still since Nashcon04.

And i still say that all the "secrecy"in what OUCH are doing does not help either.

I do NOT say that Clustercompagniet is perfect,not in any way,but we have acheaved a lot more then OUCH has since Nashcon04 it seems.

OUCH and my good family and friends at ch.com just got to learn to work together with other headaches sufferers.
Statically spoken you should have more then 99000000 peoples with different kind of headaches in USA,and only around 270000 clusterheads there is around 250 different kind of known headaches out there according to Professor Emeritus Dr,Med Ottar Sjaastad.So what is the problem?

Is it time to start listen to folks from outside??

Thanks friends and family


Svenn





Batch wrote on Sep 24^th, 2008 at 7:06am:

Sailpappy wrote on Sep 23rd, 2008 at 9:58am: 8-) 8-)very Professional Looking presentation---Were all the people in the audiance Clusterheads?  Nice looking group!                                                            John As an attendee and presenter in Haugesund, please let me try to answer that question... There were over 70 folks in attendance at the Clustersymposium.  I didn't take a poll, but it appeared nearly half were migraine sufferers...  That's a very impressive attendance given the population of Norway is less than 5 million... The US has a population of over 300 million... What I found most impressive was the fact that Professor emeritus Dr. Ottar Sjaastad and Dr. Inge Monstad were in attendance at the Clustersymposium from the early "Hello and hugs" greetings on Friday, all the way through to the long "Goodbyes and Farewell Hugs" on Sunday.  They made themselves available to every attendee from breakfast each morning to late into the evening each night and no questions were off limit... V/R, Batch

ClusterChuck wrote on Sep 24^th, 2008 at 1:17pm:

Having been to two of these symposiums, let me add my thoughts on it. One of the great things that this group does, is NOT exclude other types of headaches.  They welcome those that have migraines.  They work TOGETHER to get results, and they DO get results!  So although many in the group do not have cluster headaches, they all work together to get results for whatever type of headache that you are suffering from. Also, I agree with Batch's assessment of the two doctors, they are WONDERFUL human beings!  When I was there last year (with Tony) we got to know Dr. Sjaastad better than I got to know Dr. Monstad, yet BOTH were very open to questions, and WANTED to get to know, and talk to, as many people there as they could. They are two VERY learned, and compassionate men!  Svenn's group is very lucky to have these two pioneers in their midst. Chuck

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

Perhaps you're right Svenn. Am I right in thinking that every group meeting seems separate with new information not necessarily widely shared other than amongst themseleves? It would seen to be easier for us to get doctors to put CH a bit higher on their list of things that they can sometimes treat if they didn't have to hunt around several different groups. It might not seem so rare and it's certainly not the case with migraines and other medical horrors.

I'm not much help either.

Charlie

I am surprised to see that this topic isn't given more discussion.  I, and others, feel that we could get a lot more accomplished if we were to team up with other headache organizations, and groups, to exchange information and ideas.

The more voices we can gather, the more we will get listened to, in my opinion.

OUCH needs to move away from the archaic thought that ONLY clusters are worth being associated with.  This is detrimental to our goal of finding a cause, and eventually a cure.  

Remember, many of our medications were first designed to help migraine sufferers.  That would tend to tell me to pay close attention to what is happening in THAT sphere of research.  It can only help us, to widen our field of research and study.

I am not saying to become anonymous, and loose our identity, just to add others into our activities.  O.U.C.H. still, and should always stand for: Organization for Understanding Cluster Headaches.

What say you, officers, BoD, and members of OUCH?

Chuck

Organization for Understanding Cluster Headaches/migraine, just by adding that "M" word would add a million hits a day on a web site.

wrote on Oct 5^th, 2008 at 8:24pm:

Organization for Understanding Cluster Headaches/migraine, just by adding that "M" word would add a million hits a day on a web site.

I am not sure we should do that.  We might loose our precious, hard worked for,  identity.  We DO need to stay as an individual organization, but we need to reach out and associate, work with, and combine resources with other organizations.

Those are MY thoughts, but thank you, and glad to hear other views on this (in my mind) important subject.

Chuck

Sory Chuck I agree I just wanted to see the reactions from that I am one of the bad ones I have even pissed my mother in law off because I said migraines are for whimps ;D.  All that needs to be done is what already is we need to watch the new migraine threapies very close.
 Phil

It ain't a contest.

Maybe it's not a contest but many consider the description  of "most excruciating pain known to man" as a license to feel superior to other headache sufferers and treat other malady's as inferior and not worth taking seriously.
Folks need to learn that that someone elses pain is just as serious as CH to them.

My point exactly.

I am blessed with migraines and CH, while the throbbing pain of a migraine hurts but it is nothing compaired to a CH over a kip 7.  It is like comparing apples and oranges they are not the same that is all,  as soon as we get put in the catagory as all other HA's it will impede all progress for CH treatment.  I dont go around calling people with migraines whimps there pain is very real,  but its not the same.

wrote on Oct 5^th, 2008 at 9:51pm:

...but its not the same.

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?"

a migraine and Ch sufferer would be the ideal type to help researchers and doctors understand the differences in symptoms and affectiveness of treatments.

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

OOOH  Brew why do you like to argue,  no matter what we do we will allways be a small group and if we grouped up with the migrainers we will be pushed in a corner and over looked.  Its all about the money Brew we Clusterheads are a small group and no big business is going to invest the money for us.  So wheather we hitched to the "migraine horse" or we are watching the horse race from the side lines, its not going to be any differant.
   As far the Quote "my pain's bigger than your pain"  I have no idea where that came from because it wasn't me.   The only thing that I my have said one time when I was out to dinner with the in laws while I was going through a kip 7-8 and some one asked me if I had a migraine I replied "no migraines are for pussies" and I have never said it again because it really upset my mother in law.

Nevermind, Phil. My bad for even trying.

karma wrote on Oct 5^th, 2008 at 10:16pm:

a migraine and Ch sufferer would be the ideal type to help researchers and doctors understand the differences in symptoms and affectiveness of treatments.

I would be willing to help with any research I have applied for several clinical studies only to be kick out for being a chronic sufferer with more than 15 ha a month.

wrote on Oct 5^th, 2008 at 8:42pm:

I said migraines are for whimps ;D.   Phil

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:

Maybe it's not a contest but many consider the description  of "most excruciating pain known to man" as a license to feel superior to other headache sufferers and treat other malady's as inferior and not worth taking seriously. Folks need to learn that that someone elses pain is just as serious as CH to them.

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

Quote:

ch'ers would end up getting lost in the mix.

   Bingo.

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  

Aren't migranes and clusters vascular headaches?  The causes vary from circadian clock to hormones to who knows what.  Degree also varies.  

I know with clusters we even need to determine definitive cause.  Hooking up with and communicating with an organization that is better funded because of sheer numbers is a good idea.  Cluster headaches are not migranes and they will never be.

JMO

Mike, thanks for your response.  It is good that OUCH has offered to work with other headache organizations, but in my mind, that is not enough.

OUCH needs to AGGRESSIVELY get involved with these organizations.  Attend ALL of their meetings (if at all possible).  ACTIVELY pursue the combining of forces to get more attention and research done.

Saying that we are available ... Or willing to help ... is not enough.

We CAN do this without loosing our identity.  We CAN do this without getting swallowed up and forgotten.  We CAN do this, and still keep clusters as our main force, and ONLY goal.

Isolationism could be our downfall in reaching OUCH's goals in a realistic time frame.  I am not saying that by actively joining forces that a cure will be found next week.  Next month.  Next year.  Next decade.  But guess what!?  If we DON'T try this route, we will never know if the cause and cure COULD be found next year or next decade!

I just feel that we need to more aggressively, publicly, and openly work with other organizations.

Chuck

That is a nice sentiment, Chuck, and I wish there was a way to make it happen, but there is no way for OUCH to do what you are proposing on a skeleton crew of people with limited budgets who work full time jobs.  OUCH doesn't have the money to fund it and I certainly can't afford to drive to Arizona or fly to New York for a meeting on my own - assuming I can get the time off in the first place.  It's pretty much the same story for the rest of the BoD.  

If there were more people involved, it would be easier to make these things happen, but we can't even get cluster headache sufferers or supporters to be "aggressively" (or even minimally) involved in OUCH, let alone in working with an outside organization, too.  We have been begging people to volunteer to staff the open positions that would allow OUCH to do more for CH'ers and their supporters and to reach out to other organizations.  There are very talented people here who have the time and the skills to help, but they refuse to get involved.  No one has volunteered on their own and no one who has been asked directly has joined the team in a very long time.  

We need people to work within the organization to help with writing and obtaining grants, in securing large donations, with creating a media campaign, with creating an education program, with general funds raising, with providing support to sufferers and supporters with creating, with publishing the newsletter, with research for the website and more.  

How can we expect anyone to want to help us if we won't even help ourselves?  

Quite frankly, we do not have a lot to offer an outside organization in our current state.  


All that aside, Migraine and Cluster are pathophysiologically different.  They present with different symptoms and are triggered in different parts of the head.  

• In migraine, MRI shows a thickening in a specific area of the brain related to the communication of sensory processing called the somatosensory cortex (SSC) located in the parietal lobe.  PET Scans show activation in the brain stem during a migraine.
  
  
• Cluster headaches sufferers tend to have an increase in grey matter on the pain side in the hypothalamus and PET scans show increased activity in the hypothalamus during an attack.

I don't pretend to be an expert on either condition, but it seems to me that we are seeking two different cures, here.  Yes, some of the migraine meds work on clusters for some people, so sometimes we get some benefit through migraine research, but in the end, if we spend our time working to solve their problem, we are not working on solving ours.

OUCH's mission in life is to work for cluster headache sufferers and supporters.  As I said, OUCH will work with other organizations in any way it can - as it can, but it will be in ways that advance the mission and vision of OUCH for all cluster headache sufferers and supporters.  

Mike

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

Ok, here's my thought.

I believe OUCH should have started out in a single state.  Not going national right off the bat.  It should have dug it's heels in there, and when well established, then neighboring sttates would be added.  I just pesonally think that too few of people are taking on a very huge task and the weight is too much to bear.

Is it possible for OUCH to downsize?  It wouldn't be completely starting over, but maybe it just needs a good focal point to begin with.  Say, TX to begin with?

JMHO

eta: From what I've read of other orgs, you don't have to have all the people of that org. from said state.  Actually, I think it'd work to an advantage having national contributers (including monetary) aiming their focus to one single area.

I am with Gator and O.U.C.H on this one.

I said I wasn't going to do this and I've sat on my hands ... but...

We don't have volunteers.... why?  Maybe the BOD should ask that question and think about it. OUCH is elgible for grants and we had a guy on here who KNEW HOW to get grants and volunteered to head the committee (team whatever) and try to get some grants, BUT it was ascertained that "he was not a team player" (direct quote from the powers that be at the time) so someone who wasn't qualified was appointed. Outcome - still NO GRANTS!

Before Nashcon2004, we had about $250,000 in a done deal offered in Pet Scans, but the person who got those "got above her authority" in getting them so we had to get rid of that troublemaker. And yes, I was at the BOD meeting that decided that one. Outcome - we LOST those Pet Scans in a big hurry.

For years I've heard, "We're working on big things." from the BOD of Directors and "We just can't say anything yet." Well it's been four years - my question is WHEN CAN you say something?

When I resigned as Treasurer in 2004 we had over $16,000 in the bank and we were posting a report monthly to let the MEMBERS know where every cent was being spent. That money is now gone and I have no idea where it went (I'm sure it was spent wisely, but I wonder where it went - I've asked for financial reports, but have not received them).

There seems to be an era of secrecy within the BOD of OUCH. The members are left out in the cold. I can't even get in touch with board members exept on ch.com by sending pms.

As far as becoming involved with other headache organizations.. this has been on the board since as far back as Atlanta 2001 and it was a good idea then and still is. The more we work with other organizations the more OUCH will get it's name out and the more people will become AWARE of Clusters. That's just common sense.

As one of the FOUNDERS of OUCH, I can say, I have seen it take what I consider a "wrong" path in several areas over the last few years. We started it with an "open" board room and I think it should go back to that. Unless members feel a part of something it will never grow into what we perceived at the beginning. Somewhere the BOD quit listening to its members. It's done a lot of good over the years, but right now I just think it's on the wrong path and I agree with Svenn, Chuck and Pete.

BD

Ok, Barb, this is what kills those who DO volunteer for OUCH.  Up until the very last paragraph of your post, you offered no solutions, only criticism.  This is what bothers me.

I SO wanted to say screw it all and just leave the dang thing forever, because instead of offering positive reinforcement, all we got was slammed.  And when the body as a whole is berated, it gets taken personally.  At least, I took it personally, so obviously I wasn't the person for the job I held.

I don't think I'm a good membership chair either, because I am not on the phone, pounding the streets, etc., but I took the position because no one else did.  What does that tell you?

OK...........let's be clear about something. The goal, as you will, is to gain more attention on CH.  I have already received my admonishing pm for bringing this back up, but, the fact of the matter is MORE PEOPLE NEED TO BE COUNTED! How many people land here every week? How many people are here already?
I'm not here to bash OUCH........LOOK at me! What is it I gain........or lose??
Now, here's the punchline......I just got a wakeup call from Svenn.......he is in a lot of pain, cannot do his beloved Trex because of his heart, and he feels he is becoming addicted to morphine.......and THAT was the subject of his post.........he doesn't have the focus right now to worry about his dream....
Yeah..my lesson learned
Peace out


 

Ok, I won't post any more on this thread.

Mel,

This thread was started "for" opinions from members. If OUCH doesn't know how you "feel" then how in the world can it change (or stay the same?).

Bashing is NOT what I had in mind - just what (in my opinion) I think is wrong. And if you'll remember I've always been very vocal in my opinions about OUCH (you were in Nashville). I've been wrong several time, but a few times I've been right (come on give me that one).  :)

What I'm saying right now is that most of us are back to ch.com where we started back in 99 before OUCH came into being.

Hugs BD

I know I said I wouldn't post to this thread anymore, but I have to respond...


BarbaraD wrote on Oct 15^th, 2008 at 9:51am:

I've been wrong several time, but a few times I've been right (come on give me that one).  :)

Alright, I'll give you that one, but that's IT! ;)

I wish I was a good community organizer, cause then I could get OUCH going on the right track, you betcha! :)

But I can only offer suggestions, I don't know what else to do. :-/

At one time, I was approached by one of the board members about a volunteer position.  I was all for it and said I'd do it.  Well, I was turned down.  So, guess what folks?  It won't happen again.

Carolyn

This thread needs to be locked...or better yet, vaporized. It sure didn't get the positive reaction I had hoped for.
All I can say is, rather than looking back, look to the future of OUCH.
To those I have offended bringing this back up, I apologize.

Now, where's the vaporizer gun? I'd like to use it.......

Cathi

One question cathi.  If people don't look back, how are they going to avoid the mistakes of the past (not saying that any were made, don't know cos' I haven't been around that long)?

'darlin

Melissa wrote on Oct 15^th, 2008 at 10:00am:

I wish I was a good community organizer, cause then I could get OUCH going on the right track, you betcha! :)

If you can get Mickey Mouse registered at O.U.C.H., we'll have to make you president!


j/k    ;)

Kevin_M wrote on Oct 15^th, 2008 at 10:18am:

Melissa wrote on Oct 15th, 2008 at 10:00am: I wish I was a good community organizer, cause then I could get OUCH going on the right track, you betcha! :) If you can get Mickey Mouse registered at O.U.C.H., we'll have to make you president! j/k    ;)

LOL Kevin!

Ok, I wasn't going to get in this thread, but I'm going to anyway, send all bashes to PM :P

I have a question (in response to Svenn's dream) what is it that YOU the members of OUCH that frequent ch.com want to see from the organization?  Perhaps, if the membership can state what it wants from the org, they can set a specific goal and try to recruit members to help achieve the goal THEY (the members) set....

Cat

Cathi_Pierce wrote on Oct 15^th, 2008 at 10:05am:

This thread needs to be locked...or better yet, vaporized. It sure didn't get the positive reaction I had hoped for.

No need to vaporize it.
Though the reactions weren't the ones you hoped for there at least were reactions.
As Barb already said: the thread was started for opinions (regardless if they are "good" or "bad").

And yes, I'm a member of OUCH.

Oliver

This is very interesting to me. My family background is all migraine then Lisa got CH. We have been blessed with great nuerologists who deal with every kind of headache. Her first appt. was a very informative explanation of the different kinds of headaches and preventions. When she went to Jefferson it was even better. It is called the Headache Clinic. Last summer Lisa's car accident created a new headache which turned out to be like a migraine/tension, constantly. Her doctor dealt with this just as seriously as the CH, giving her a nerve block. He never has mentioned pain as important in her treatment. He just wants her to feel good regardless of the headache type.

The only time I have felt that it might not work to combine the headaches was the group therapy when she was inpatient. She really couldn't relate to the constant daily pain some suffer nor could they relate to the intensisty of her pain.

It sure would be nice if we could help each other some way. I think Jefferson is trying to do this in their clinic.

Charlotte

Seeing that I was part of the start of OUCH, and agree with points on both sides....I will say this  :-X

I think its better this way.  ;)