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        New Message Board Archives >> 2003 Posts >> MEEGRAINERS: Use them for our goals?
        
(Message started by: SommelierCH on May 13^th, 2003, 3:43am)

Title: MEEGRAINERS: Use them for our goals?
Post by SommelierCH on May 13^th, 2003, 3:43am

As Edward L. Bernays said, “There is no such thing as bad publicity”.

Here is a link to a Newsweek story on Pain, from the MSN home page.
http://www.msnbc.com/news/911585.asp?vts=51220032015

When you scroll down you see that the only “pain” that is highlighted is MEEGRAINS. But, they talk about triptans (did you know that they are a “new class of drugs?). Here is the excerpt.

Migraines
A new class of drugs called triptans has revolutionized treatment by preventing blood-vessel swelling within the brain.

1 Nerve cells can dilate blood vessels in the brain to aid blood flow by bombarding them with molecules called neuropeptides.

2 In migraine sufferers, an overproduction of neuropeptides causes blood vessels to swell until they rub against the nerves, causing pain.

3 By binding to receptors on the nerve cells, triptans slow the production of neuropeptides. That eases the swelling of nearby blood vessels, eliminating the source of the pain.
SOURCE:Text and Reporting by Josh Ulick

Maybe, instead of fighting the MEEGRAINERS, we should ride along with them, and their world-wide recognition, like drafting behind another rider in a bicycle race.

The plain fact is—They are using triptans, We are using triptans—We just need a Hell of a Lot more! Triptans are now recognized to work, Imitrex even has a national television commercial running.

We as a group (OUCH) should work with the pharmaceutical companies (and their, obviously, BIG BUCKS) and have THEM, lobby the insurance companies to recognize the Clusterheads and increase our allowable doses. It’s a win/win situation for the pharmaceutical companies, and gives them, much needed, good publicity.

Plugging away, trying to make a change,
David J.

Title: Re: MEEGRAINERS: Use them for our goals?
Post by suzy617 on May 13^th, 2003, 5:01am

I saw a spot on the news last night regarding a new med for migraines which seemed to be quite effective but my phone rang at that time and I missed the name of it. ::) They also talked about imitrex and others that have been used here.

Keep plugging away David,
Suzy

Title: Re: MEEGRAINERS: Use them for our goals?
Post by Bob_Johnson on May 13^th, 2003, 11:23am

If you go back to the earliest days of ch.com (archives) you'll find the same passionate for/against migraine that we see now, from time to time.

I wrote then that we owe a lot to migraine for much of the research and drug development is paid for by that problem. In a competition for money, cluster will lose to migraine simply based on the number of people affected, whereas, joining forces to seek more research funding would benefit both groups.

Title: Re: MEEGRAINERS: Use them for our goals?
Post by cbolony on May 13^th, 2003, 11:24am

SommelierCH you make a good point the problem is the people who have migrains use the the triptans about 4-10 times a month.When i'am in cycle which i take imitrex injection and get 3-4 CH a day and use the imitrex tip every day i need 30-40 vails a month no insurance company is going to pay for it.The triptans cost to much money for people who have CH.I know without the people who have migrains we would not have these drugs to help us.My fucking insurance company only gives me 2 vials a month and i pay $900 each month for health insurance for me and my wife.I hate going around to doctors each month begging for imtrex samples which they give because they know i get CH.
02 does not work for me on the higher kips i wish it did.
I get 3-4 cylcles a years lasting 8-10 weeks each cycle is sucks but we have to keep going on can't let the beast win.David keep up the good work someday someone will listen to us. :) :)

Title: Re: MEEGRAINERS: Use them for our goals?
Post by oringkid on May 13^th, 2003, 11:28am

I am going to step in it here, but I mean no disrespect ok?

I wonder if we hadn't been misdiagnosed with migraine and if we hadn't been lumped in with migraineurs, perhaps a drug that is much more effective against CH might have been developed. Based soley on OUR disease and research on it.

Just a thought.

Sherry

Title: Re: MEEGRAINERS: Use them for our goals?
Post by Wendy the Brit on May 13^th, 2003, 11:50am

Monsieur Sommelier

I think you make a very good point. There are many millions of "meegrainers" and I for one would like to see us not attacking them, but using them and their influence.
( I suffer from both though so I am biased and get mightily pissed off when migraine sufferers get attacked here)

W the B the migraine sufferer

Title: Re: MEEGRAINERS: Use them for our goals?
Post by oringkid on May 13^th, 2003, 11:59am

No attack intended Wendy, I hope you didn't take it as such. I assume you are referring to other attacks. (I agree, no one should be attacked just for having migraines) But CH and Migraines are different and I just wonder if there might have been a different solution if the research and meds were separately pursued.

Sherry

Title: Re: MEEGRAINERS: Use them for our goals?
Post by Wendy the Brit on May 13^th, 2003, 12:06pm

Sherry, of course no attack seen by me. :) :) But it does happen a lot here (old ground, been said before though)

Title: Re: MEEGRAINERS: Use them for our goals?
Post by Ree on May 13^th, 2003, 12:45pm

thanks and I thought we werent going to use that term again...(meegrainers)It makes people with Migraine seem self centered and not to blow my own horn but I support a cause that gives Me no support...
I could call you all CH 'a s s h o l e s but I dont...

sheesh and I was nice to you David J... didnt anyone tell you I have CHRONIC @*#+&$ MIGRAINE...

What does Den say?Walk in the sunshine...
This is ree pmsing and signing out...
stop competing with Migrainers AND get your own disease... LOVE YOU ALL DONT KNOW WHY...ree
YES I SAID A S S H O L E........ AND IT FELT GOOD

Title: Re: MEEGRAINERS: Use them for our goals?
Post by Margi on May 13^th, 2003, 12:51pm

go ahead, Ree - do what I taught you. Say the 'f' word. You know you want to.

you go, girl.

:-*

p.s. David, Bob's right - we did try this a few years back and kind of got nowhere. But if you can get your foot in the door now - go for it. Anything that brings relief to a clusterhead is worth a shot.

Title: Re: MEEGRAINERS: Use them for our goals?
Post by don on May 13^th, 2003, 1:02pm

We can either use them for our goals or we could use them as our backstop! OUCH softball team starting soon! ;D

Title: Re: MEEGRAINERS: Use them for our goals?
Post by Drk^Angel on May 13^th, 2003, 11:10pm

I still say that it's alright to team up with the migraine societies as professional equals, and shouldn't have to just ride their coat tails. Rather than "use" them and stand in their shadows, we should make our own path. Don, the rest of OUCH, the convention, and everyone working on their projects are doing great jobs at bringing CH out into it's own, and getting us out of the shadows. I believe that everyone can benefit, when everyone is treated as equals.

Hopefully... One day, instead of hearing about how this migraine medicine can also help CH, we'll be cheering about a new drug found to specifically treat CH, and more than for just a handful of people, or for just a handful of the attacks that one must deal with... A treatment that is actually developed with dosing in mind that will allow a clusterhead to try to abort all their attacks without having to be strapped to a cumbersome O₂ tank all the time... A treatment that works to abort an entire cycle without horrible side effects. Can we really expect a treatment such as this to trickle down from the migraine research?

PFDAN.................................. Drk^Angel

Title: Re: MEEGRAINERS: Use them for our goals?
Post by SommelierCH on May 14^th, 2003, 6:48am

Ree, ree, ree, honeychild,

Nobody, especially me, is fixin on you. You are an Angel. You are a main ventricle, in the heart of this family, but, we are the Clusterheads, there aren’t many of us, we gots ta looks out four ourselfs.

Clusterheads can’t get enough triptans, because (at least in my case) we are STILL in the same category as migraine sufferers. You, or any other migraine sufferer, must not take offense in our fight.

My respects to an Angel,
David J.