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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Cluster Headaches Bulletin Sep 17^th, 2015 at 9:01pm Cluster Headaches Bulletin, Invite you to join this closed group on facebook. A place where all Cluster headache sufferers can find the latest news on CH research and treatments. Although the members are public, the content is only seen by other members of this group. Cheers, Hoppy.
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Marc

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Re: Cluster Headaches Bulletin
Reply #1 - Sep 17^th, 2015 at 10:50pm

Funny how things work.

This site is easily still the richest/deepest information source for CH info. For many years, it had incredible amounts of activity. Gradually, the PC police moved in and drove away the really dynamic and robust characters that made it work so incredibly well in the first place. (Please don't throw Jonny up as an example - there is soo much more to it than one guy.)

Now it languishes, and people recruit here for yet another Facebook page.

Hoppy, this was NOT a slap at you. You are a good guy. It is a general statement about the 800 pound gorilla in the room. Take a run through the archives and you will quickly see what I mean.

Respectfully,
Marc

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Hoppy

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LAUGHTER IS THE BEST MEDICINE

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Perth WA
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Re: Cluster Headaches Bulletin
Reply #2 - Sep 18^th, 2015 at 12:05am

Hi Marc,
Although not being here as long as you, I get where your coming from. I remember when I first became a member things were a lot different, but I suppose, like everything else, with time, things change. So, I try to keep up to date with what's new in CH research and treatments, and thought to myself, why not share this information with other clusterheads, and hopefully help some become pain free, and with that in mind I created this facebook page.

Cheers, Hoppy.

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Cluster Headaches Bulletin Reply #3 - Sep 18^th, 2015 at 6:10am I don't know what Facebook is, Hoppy, and many tell me it's good to keep it that way. Regardless, everything that helps honest information get out to our ClusterBrethren can only be a good thing. A good job well done, Brian up the road.
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Marc

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Re: Cluster Headaches Bulletin
Reply #4 - Sep 18^th, 2015 at 7:04am

Hoppy wrote on Sep 18^th, 2015 at 12:05am:

Hi Marc,
Although not being here as long as you, I get where your coming from. I remember when I first became a member things were a lot different, but I suppose, like everything else, with time, things change. So, I try to keep up to date with what's new in CH research and treatments, and thought to myself, why not share this information with other clusterheads, and hopefully help some become pain free, and with that in mind I created this facebook page.

Cheers, Hoppy.

And more power to you, Sir!

Marc

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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: Cluster Headaches Bulletin Reply #5 - Sep 18^th, 2015 at 7:54am I have to agree with Marc. Besides, isn't there already a Facebook site for CH's?
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Hoppy

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LAUGHTER IS THE BEST MEDICINE

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Perth WA
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Re: Cluster Headaches Bulletin
Reply #6 - Sep 18^th, 2015 at 9:49am

BobG wrote, I have to agree with Marc. Besides, isn't there already a Facebook site for CH's?

Yes, this is true, but they all work on the same theme, members helping members with their Questioning

on their CH nightmare. Whereas, at Cluster Headaches Bulletin it's all about where they can find information on all the latest CH research and treatments, alternative, prescription drugs, and what's new, all in one place. So, hopefully those folk who are getting no relief from the beast now, can find something that works for them, and gets them pain free.

Cheers, Hoppy.

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« Last Edit: Sep 18^th, 2015 at 9:56am by Hoppy »

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Cluster Headaches Bulletin Reply #7 - Sep 18^th, 2015 at 10:11am AussieBrian wrote, Brian up the road. Brian, that's one long road from where I'm standing Cheers,
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BarbaraD

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Hugs to ya

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Douglasville, TX
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Re: Cluster Headaches Bulletin
Reply #8 - Sep 20^th, 2015 at 10:18pm

There's about a dozen CH sites on FB and there's a LOT of MIS-information being given out by what we'd call "newbies" here.

One site is discouraging it's "members" from even coming here. That one got me.

And he advice being given on FB (except by people who've been here for a while) is hit and miss at best. And most of us put a link in for THIS site when we do post anything.

I really hate to see people suffering and getting bad advice when they could get help here, but ...

Anyhow that's my take on the advice on FB. Kiss

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What don't kill ya, Makes ya stronger!

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AussieBrian

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head!

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Re: Cluster Headaches Bulletin
Reply #9 - Sep 21^st, 2015 at 5:08am

There are people who read lots here, but don't join for their own reasons, and others who've come aboard and chosen not to stay.

That's their decision and we must respect it.

If Hoppy's new site means we can direct them to honest information about this dread disease then it can only be a good thing.

Knowledge is power, and it's our job to pass it on.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Cluster Headaches Bulletin Reply #10 - Sep 21^st, 2015 at 4:03pm Will it help get a message to more people with CH that there are ways to prevent and abort CH? I'm sure it will, so to my mind it is a benefit to the CH community.
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Cluster Headaches Bulletin Reply #11 - Sep 22^nd, 2015 at 4:44pm Marc and Barb are both correct. Don't know if there are dozens of sites...but there are far too many putting out useless and mistaken information, that's for sure. When DJ started this site in 1998, there was NO information on CH in the internet. None. This is the place to be for accurate answers.
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Cluster Headaches Bulletin Reply #12 - Sep 23^rd, 2015 at 9:42am Right=on Linda.. This is the PLACE to come for ACCURATE info.. but alas, progress and all that.. "Progress was great - It just went on too long!"
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Mark Olson CH.com Veteran Offline I Love CH.com! Posts: 142 San Jose, CA Gender:	Re: Cluster Headaches Bulletin Reply #13 - Sep 23^rd, 2015 at 5:41pm I have to say that I LOVED the Monster drink video. I have been thinking all day about how to respond and am still speechless. That NEVER happens!
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Cluster Headaches Bulletin Reply #14 - Sep 23^rd, 2015 at 7:01pm Mark wrote, I have been thinking all day about how to respond and am still speechless. Ditto, Hoppy.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Cluster Headaches Bulletin Reply #15 - Sep 24^th, 2015 at 3:45am Positive or negative! This facebook page is all about getting the latest CH information out there and hopefully help get our clusterhead warriors pain free Hoppy.
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blacklab

Ex Member

Re: Cluster Headaches Bulletin
Reply #16 - Sep 26^th, 2015 at 4:34am

Hoppy wrote on Sep 24^th, 2015 at 3:45am:

Positive or negative! This facebook page is all about getting the latest CH information out there and hopefully help get our clusterhead warriors pain free

Hoppy.

I say. " WELL DONE" to you Hoppy !!!!!!
there's always going to be the other type of sites which aren't that good with there information.
ch.com, in my opinion is the absolute place to be, But at least your putting up correct and informative information, that's the most important point,its better a sufferer visits your place rather than the other crap ones.
Thanks for your efforts Dr Hoppy

colin

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