Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Jan-Mar 2004 >> We need you!
        
(Message started by: Elaine on Feb 16^th, 2004, 4:53am)

Title: We need you!
Post by Elaine on Feb 16^th, 2004, 4:53am

You guys have been screaming for years OK lets do something. It took us four years to get things going In OUCH. The old timers the newbie’s have worked through the years, everyone has done a great job. It’s been slow but the work has been done. Each year more work. We hope to have all paperwork and update everyone on lots of things going on. No big secrets just want to make sure everything is a for sure thing before we give all details.

I am not the smartest cookie here matter fact I am just a old country woman, with clusters and tired of hurting every damn night. I am not going to just sit around and let clusters take over my life. If I ever do that the beast wins. It seems like the older I get the harder it is for me to fight these damn things. I am fighting the only way I know how. I back OUCH anyway, I can. Through O.U.C.H. the word WILL get out that Clusters are more than a headache. More Research WILL BE done. More Doctors and Hospitals WILL know our needs. Insurance companies WILL know our needs. Along the way someone just may trip and fall over the cure! I maybe dead and in my grave, but the answer will come. Maybe it won’t help me, but it might help my child my grandson, granddaughter ect…. You say well its don’t run in family’s. How does anyone know that? It took most of us years before we knew what we had. Most of us hid our pain. Who knows if our grandparents didn’t do the same. My Grandmother had a headache on Easter Sunday. Told my dad she was going to lie down for a few minutes. My grandmother never woke up. I had a slow leak in a my head four years ago. Did clusters cause that? I do not know no one really does. I am fighting guys .

Please will you help? I know a lot of you don’t have time to volunteer and stuff, or you don’t want to get into politics and stuff. Man I understand all that. Join OUCH stand behind us. Give a dollar or two help us raise money. What do we need money for well we need money for travel to get things done like things on the list below that Cat posted on OUCH, and I copy pasted below! We need money to get chapters going. If you been reading the OUCH board this will cost us. Chapters are important in many ways. Where we as a national O.U.C..H. cannot meet in person moth t moth and get things done as fast. The chapters will be able to. Chapters support groups in every state. You might find that the family down the street has a clusterhead, beating his/her head against the wall. Your cluster buddy may not be hundreds of miles away. ERs being trained to treat us like humans with a REAL illness, not treat us like nut cases.

One of my Jobs is to raise funds and I cannot do it without you guys. I need your help. Michelle needs donations for Auctions. I need donations for some contest coming up next month., Do it for yourself! Do it for your family! Do it for your friends.

We are going to need more committees we are going to need many peoples help here.

Read cats list ! We are getting people to take serious notice!
Like the Glaxco. They make money off us they are going to listen.

These are some of the things that Cat and Roxy done on their trip. There are many more things to come and in the works.

Cat wrote;

We've developed a cluster screening tool.
We have speakers lined up for the convention.
There is a new study being done on chronics.
There is talk of a new study for different dosages for imitrex.
The zomig nasal spray trials are almost ready to go live.
We have the Grant templates set up and ready to go.
We met and had extensive discussions with Glaxo.
We have done a sampling for $$ and triptan usage for Glaxo.
We have set up the outlines for education sessions.
We have set up the affiliation with the NECH and OUCH.
We met and had brief discussions with the Pfizer reps.
I am building an ongoing cluster library.
I have contact information for ACHE and AHS and info to resolve the conflict of information regarding the drip movie.
There was discussion regarding being on Oprah.
There was discussion on uniformity of chapters and they were particularly pleased
with the PANJ set up.
The NECH suggested we reinstate dues.
We discussed the quality of life survey.
There is a CME cd called Migraine Blues with a cluster song/video on it that we have copies of.
There was discussion on an epidemiology and prevalence study for cluster headaches.

Cat

We are doing these things for us and for you, Please help us!

Thanks for reading this
Elaine

Title: Re: We need you!
Post by floridian on Feb 16^th, 2004, 8:25am

Well said, Elaine!! If everybody does something, we will make even more progress to reduce our pain and suffering. Alot of people are helping in whatever way they can, but we haven't won yet and we need more help.

Title: Re: We need you!
Post by brain_cramps on Feb 16^th, 2004, 8:51am

Great post, Elaine.

It might be an idea to have this as a "sticky topic" at the top of the "Getting to Know Ya" board. That way any newcomers have an idea exactly what OUCH is doing and what they can do to help.

Just a suggestion,
grant

Title: Re: We need you!
Post by Prense on Feb 16^th, 2004, 9:40am

on 02/16/04 at 08:51:10, brain_cramps wrote:

It might be an idea to have this as a "sticky topic" at the top of the "Getting to Know Ya" board. That way any newcomers have an idea exactly what OUCH is doing and what they can do to help.

Hell yeah! Along with a direct link to the site...

Even though it is over there on the left. ;;D

Title: Re: We need you!
Post by Prense on Feb 16^th, 2004, 11:43am

on 02/16/04 at 04:53:11, Elaine wrote:

Like the Glaxco. They make money off us they are going to listen.

Glaxo will make money off of us when they explore the use of imitrex injections at a rate of more than 4 per month. That itself costs alot of money! It is most likely the reason they have not done so yet. CH is not an off-label use for imitrex... No wonder they are in trouble. ::)

Personally, I'd like to know if the rate of imitrex usage I am currently on will kill me down the road.

Maybe they are hiding something. Who knows...

Chris

Title: Re: We need you!
Post by Mastifflvr28 on Feb 16^th, 2004, 11:52am

Very WELL said Elaine!!
Yes, I need donations to auction off from family members to family members.

And don't forget about the OUCH Mall while you shop online:
http://www.clusterheadaches.org/cgi-bin/ouchmall/SuperLinks.cgi

BE PART OF THE SOLUTION!!

Mast

Title: Re: We need you!
Post by Elaine on Feb 16^th, 2004, 1:10pm

Steve I did not have time to read it all but you might find some answers on the link below. If you put Imitrex in google search there is a bunch of stuff on it. Glaxo are pertty upfront with there studys.

http://www.gsk.com/products/imitrex_us.htm

Title: Re: We need you!
Post by Cerberus on Feb 16^th, 2004, 2:49pm

Great Post E!

Oh, and by the way, I need you too :-*

Ramon

Title: Re: We need you!
Post by Prense on Feb 16^th, 2004, 2:58pm

on 02/16/04 at 13:10:49, Elaine wrote:

Not sure who Steve is, but here is all you find in that link on long term usage of trex...

Quote:

It is recommended that patients who are intermittent long-term users of sumatriptan
and who have or acquire risk factors predictive of CAD, as described above, undergo
periodic interval cardiovascular evaluation as they continue to use sumatriptan.

Chris

P.S. It wasn't my intention to hi-jack your thread...Join OUCH! ;;D

Title: Re: We need you!
Post by BarbaraD on Feb 16^th, 2004, 3:20pm

Good post E. And don't forget the OUCH store. We've got t-shirts, shopping bags, pens, sweat shirts, bumper stickers and decals. Let everyone know what OUCH is.

The more people who get involved the easier everyone's job will be.

But people, you have to sign up on the Business Board again (I know I know) to participate. At last count there were only 145 registered there. What's YOUR problem??? It only takes a minute and then you'll be part of the SOLUTION!!!

Hugs BD

Title: Re: We need you!
Post by jonny on Feb 16^th, 2004, 3:39pm

Along with the 30 something OUCH shirts I own Im doing my part....walking/driving billboard.....LOL ;;D

http://im1.shutterfly.com/procserv/47b3ce27b3127cce8fcab5b9402a0000001610

.........................jonny

Title: Re: We need you!
Post by Elaine on Feb 16^th, 2004, 5:20pm

ooops I am sorry I ment to say Chris! Steve is the Prisdent of O.U.C.H.

I am a old woman and the mind is going !

Way to go Jonny ! I know what a wonderful supporter you are for O.U.C.H.!

Cerberus thanks !

Title: Re: We need you!
Post by Mastifflvr28 on Feb 16^th, 2004, 10:45pm

oh, here's a link to the ouch business board!

http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi

Be Part of the Solution

Love the truck Jonny...I need to order some more Decals :)
Mast

Title: Re: We need you!
Post by AlienSpaceBabe on Feb 17^th, 2004, 9:58am

on 02/16/04 at 15:20:08, BarbaraD wrote:

Good post E. And don't forget the OUCH store... Let everyone know what OUCH is.

I tried.... wore my sooty, slightly charred OUCH sweatshirt for the television interview I did after the fire... there was a very nice shot of the back of it with a huge OUCH showing on screen!

Title: Re: We need you!
Post by tiredofclusters on Feb 17^th, 2004, 11:43am

Where are the items auctioned at and where do i send the donations for Auctions?
Also who setup the OUCH mall?

Neal

Title: Re: We need you!
Post by Mastifflvr28 on Feb 17^th, 2004, 10:51pm

Hiya Neal,
Please contact me about auction stuff. There is a special section here that I auction things off at. On the main page, just scroll down to OUCH auctions.

I also set up the affilites for OUCH, and DJ tidied them up and put up the OUCH Mall.

You can pm me or email: mastifflvr28@earthlink.net

Looking forward to hearing from ya Neal, and thanks for the interest,
Mast

Title: Re: We need you!
Post by manana on Feb 18^th, 2004, 5:38pm

Glaxo will make money off of us when they explore the use of imitrex injections at a rate of more than 4 per month.
Personally, I'd like to know if the rate of imitrex usage I am currently on will kill me down the road.

Maybe they are hiding something. Who knows...

May kill us down the road but, I haven't found a better alternative. As far as making money off of us, Glaxo doesn't appear to object to useage greater than that prescribed for other types of headaches i.e. migrain but it is the insurance companies (or other provider for health care) who limit the amount of the medication they are willing to assist with payment. Glaxo's 800 number is working & they appeared to be willing to "pinch hit" for me while I was getting hit 3 to 4 times a day & the insurance company was only willing to assist with 9 hits per month. Only time will tell...
I'm sure monetary donations are useful for OUCH & the cause but, I feel sufferer's best donation is their testimony and their time. Our limited monetary resources are a drop in the bucket but our combined efforts directed toward the right organizations is what it will take to relieve the pain, stress, and other things we must live with to get by.