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.

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

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.

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.

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

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

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  :question 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.

AussieBrian wrote, Brian up the road.

Brian, that's one long road from where I'm standing  [smiley=lolk.gif]

Cheers,  [smiley=beer.gif]

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. :-*

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.

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.

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.

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!"

:-*

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!   :)

Mark wrote,  I have been thinking all day about how to respond and am still speechless. Ditto,  [smiley=lolk.gif]

Hoppy. 

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.

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