I cannot tell everyone associated with this site how thankful I am for the insight and comradery. With the understanding of those associated with this site, I have been able to get my CH under control. 

We all come here with hope and faith that we can somehow learn from the trials of those who are members.  It is beyond my knowledge, but with the knowledge of so many, I have truly learned so much.

As we all do, with learning and passing along information, it is vital that we share that information. I am always looking for more and more.  Recently a friend told me to check out a site on Facebook.  I did and they were quite welcoming till I mentioned that I got relief from the D3 regimen. I was asked questions about the regimen and I referred those people here.  I was quickly and quite unceremoniously blocked and deleted.

I found it sad that they would block information that may help some of their members.  Why would anyone who is in charge of the site, block information? To me, this site is the best and we can talk about whatever is on our minds. I simply do not know or care to know about who or why I was blocked, but it happened.

As CH sufferers, we band together to make our lives a bit better.  So, to whomever is in charge of this site, I will forever be in your debt.  My life is now a living thing and as close to normal as it may ever be.

Thank you to all involved.

Michael

Hannah banana got ya.

       Potter

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

  This is the fb page you want.

             Potter

I think I won't bother.  This site is much more to my liking. I don't think much of small minds.

Your loss.

           Potter

I lasted 24hrs on that site before getting kicked off for mentioning another fb site  [smiley=lolk.gif]

Hoppy

Hoppy wrote on Aug 8^th, 2016 at 6:20pm:

I lasted 24hrs on that site before getting kicked off for mentioning another fb site  [smiley=lolk.gif] Hoppy

Not the site I mentioned.

            Potter

Yeah! It was!  [smiley=lolk.gif]

Hoppy

Hey, Michael. Talk to Hoppy about a certain Aussie site that's very informative, and friendly too. I've yet to work out how to properly navigate it  but everyone seems very welcoming, even if you mention other CH places.

Hoppy(Michael),

Please let me clear up a couple facts that you have not shared in your posts.

1.  You were not removed from the aforementioned group  by an administrator.  You chose to leave due to your frustration.

2.  The issue was that you were attempting to poach from that group in your second post in said group.

3.  You were told of another group for Austrailians that you could join as well and were encouraged in your venture.

Please note that Cindy nicely spoke to you and explained the entire situation.  In that Facebook group we allow links to other groups when those groups offer specific needs we don't.  Having someone come in, and in his second post try to poach a bunch of members isn't something we allow for obvious reasons.  I am sure DJ, Bob, and many others can understand why, since this has been a problem in the past.

Anyway, I hope that clarifies the situation.  The group mentioned did not kick you out and we tried very hard to give you resources.  Also, in private messaging, offered advice how to organically grow your group or join another already formed for specific needs.

As we did then and we do now, the administration in that group wish you the best.  If you wish to discuss this further, let me know and Ill be happy to private message you.

Eric

FramCire wrote,In that Facebook group we allow links to other groups when those groups offer specific needs we don't.

Your group is entirely different to my facebook site and Bob can attest to that including some of your other members that have joined Cluster Headache News, and we are not paranoid like the folk running your site. We share other CH sites with our members because we know when dealing with the beast you need all the help and support you can get and that's why DJ has no problem with me advertising my facebook site on here.

Cheers Hoppy

Quote:

Having someone come in, and in his second post try to poach a bunch of members isn't something we allow for obvious reasons.

They're ours and you can't have them!  We must protects them from others!  Sounds kinda cultist.

Bob:  We have always allowed links to other groups.  We also help promote other groups, including this message board, Clusterbusters, and others.  I appreciate it "sounds kinda cultist" to you but is nothing of the sort.   We offered a way to help him grow his group and he left.  He claimed to have ways to help people but wasn't helping anyone in our group.   The key to a Facebook group like ours is that people have to help each other, whether by asking questions, sharing experiences, or offering support/information.  Strangely, Michael didn't offer any of that and yet still he left on his own accord.  He wasn't asked to leave.


Hoppy:  My issue is you still misrepresent what happened to you.   You came into our group, offered zero support of others, and posted only advertisements to your group.  When an admin offered ways we could help you grow, you chose.to leave.  For someone who claims to have the knowledge and.information to help others, you didn't offer any help inside.the group and you were only there to poach members for your own group.

What's truly sad is that you were given the opportunity to work with us and chose to leave and now go around complaining about it.  In your time in our group you made 2 posts/comments.  Both were trying to get people to join your group.   No support/information/help of any kind.   Sorry, but groups like ours work only when people help each other.

Anyway, y'all have a great day.  I think people around here know me well enough to know I am not in this for anything but to help others the way I was.helped here a.dozen years ago when I first was diagnosed. 

Potter,

After reconsidering your recommendation, I addressed the site.

Thanks

Message I received from cluster headaches,

Thanks for being respectful of what I and several others have built here. We have several friends who have also started FB group specific to cluster headache. Many enjoy the close knit feeling smaller groups offer. Rather thsn posting a general "invite" in one of the largest group, build relationships, talk to people. No advertising of other FB groups inside Cluster headaches. There's a wonderful group I'd like to invite you to join for Australia led by Dan Bailey.  All the best.  Cindy

Some of us have gone to those ch sites on FB and are seeing questions and stuff being said that we were saying here about 17 years ago.. (I think I've said that a few times). And some of us have referred them here.

People who want help will listen to those who are tying to help and will seek it.. Those who want to be "in charge" will deter those who need help and there's not a darn thing anyone can do about it - shame but truth..

All we can do is what we can do.

I've gotten to when I see BS being spread on FB I just go to something else.. I'm too old to stress out over stuff like that.

Welcome Michael to Clusterville. We're all a little nutz here, but we're still the neatest folks in the ch community and are here to HELP.  :-*

Hoppy wrote on Aug 9^th, 2016 at 9:18pm:

Message I received from cluster headaches, Thanks for being respectful of what I and several others have built here. We have several friends who have also started FB group specific to cluster headache. Many enjoy the close knit feeling smaller groups offer. Rather thsn posting a general "invite" in one of the largest group, build relationships, talk to people. No advertising of other FB groups inside Cluster headaches. There's a wonderful group I'd like to invite you to join for Australia led by Dan Bailey.  All the best.  Cindy

Yes, that is PART of the message you got.  Let me quote a part of what you omitted. 

"We encourage all patient's to pursue advocacy and basically do every thing possible to change the way our patient group is viewed by researchers and medicine. I'm very supportive of you building  your group. One day, we may be referring people to you just as we often send folks in the UK to OUCH or Migraineurs to AMF and finally we contone to semd members who seek more privacy to discuss alternative treatment options to Clusterbusters."


See Michael, you know that you were offered a chance to meet people and grow your community organically through trust but you chose to leave and now misrepresent what happened.  Our goal in our group is similar to the goal here.  You didn't want to be a part of it, and thats fine, but don't misrepresent what happened. 

Cluster headaches wrote,  No advertising of other FB groups inside Cluster headaches.

I think I've made my point clear enough. Also, I must say, some of the comments made whilst in your group were rude to put it mildly. Also, I didn't feel comfortable with your secretive group, after all said and done, isn't sharing with others what facebook is all about.

Hoppy

Barbara wrote, Some of us have gone to those ch sites on FB and are seeing questions and stuff being said that we were saying here about 17 years ago.. (I think I've said that a few times). And some of us have referred them here.

Yeah! And that's one of the reasons I created Cluster Headache News on facebook! Where folk can keep up with the latest research and treatments specificity for CH's.

Hoppy

My point is the purpose of CH SUPPORT is SUPPORT and trying to HELP others by OTHERS who have this awful thing known as Clusters.. We're about the ONLY ONES who actually KNOW what we're going thru.

I'm for getting HELP where ever it's AVAILABLE.

NO ONE has ALL the answers (yet) and NO ONE WAY works for everyone.

I've been on this site since 98 and have tried about everything known to man and beast to HELP the HURT. And some have been pretty "out in left field", but we tried them because we were hurting.

Now we find things (thru research) that are working for so many of us. And they're all HERE for any sufferer to read, and try if they are willing to take the time to come here and read what's taken years to compile.

This is NOT a closed knit group by any means. And it has never meant to be one. We're all sufferers and here to SUPPORT each other. I'm all for giving and getting support anywhere it's available. FB or here or Clusterbusters or where ever, but today there are so many "trolls" with magic "cures".

Over the years on CH.com we've been pretty good at weeding these trolls out and deleting them. FB is fairly new and these trolls are resurfacing. If some of us "old-timers" sometimes pop in and say something that "offends" someone - we don't mean it in any way except to be "helpful", but most of us have been there and done that.

Ok, sometimes I don't 'splain things too good, but I mean well..  :-*

I'm not very good at this Internet thing but can easily understand the difficulties people can face in joining a new group while not knowing the secret handshake nor carrying their special decoder ring.

I correspond regularly with a number of CHeads and a Supporter who've been driven away from this place by what they feel is disgraceful conduct of some of the oldsters, and I'm helping two others who won't even join for the same reason.

Certainly we're the repository of all CH knowledge, but I worry we can also be the suppository of all good manners.

Perhaps this is a time for everyone to simply sit quietly with a nice cold drink and think about why we're really here.

The fridge door is open at my house.

AussieBrian wrote on Aug 11^th, 2016 at 10:44am:

I'm not very good at this Internet thing but can easily understand the difficulties people can face in joining a new group while not knowing the secret handshake nor carrying their special decoder ring. I correspond regularly with a number of CHeads and a Supporter who've been driven away from this place by what they feel is disgraceful conduct of some of the oldsters, and I'm helping two others who won't even join for the same reason. Certainly we're the repository of all CH knowledge, but I worry we can also be the suppository of all good manners. Perhaps this is a time for everyone to simply sit quietly with a nice cold drink and think about why we're really here. The fridge door is open at my house.

  Good job.  If you can you toot yer own horn  kiss yer own butt and pat yourself on the back at the same time then you're golden.

                 Potter

And that would be the difficulty...

Quote:

I correspond regularly with a number of CHeads and a Supporter who've been driven away from this place by what they feel is disgraceful conduct of some of the oldsters, and I'm helping two others who won't even join for the same reason.

I be one of those driven from here once or twice before...
And I did not want return, except to help Peter, the Belgian bloke if we could.
I still assist CHers outside of this website, but not on FB.
Thanks for your help Brian, I'm sure people outside of the site appreciate it as much as I have over the last 6 years.

F.

 

I be one of those driven from here once or twice before...
And I did not want return, except to help Peter, the Belgian bloke if we could.
I still assist CHers outside of this website, but not on FB.
Thanks for your help Brian, I'm sure people outside of the site appreciate it as much as I have over the last 6 years.

F.[/quote]


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       Really is a dynamic fast moving up to the minute fb page.

                Potter

Well said Barbara.

I probably shouldn't have even replied in here so I am done with this topic.   Ill have my last say and read all replies so they have last say.

Our Facebook group isn't secret.  We are private because many things discussed people don't want friends, family, or bosses to read.  We are protective of trolls,snake oil salesmen, and such.  Like this message board, where I got started in meeting CHers and receiving support, it just ain't easy administrating a large group, especially one with chronic pain.  DJ and Steph are hero's of mine for what they have done for the CH community and I am forever grateful.  Some people just are going to not like whatever you do.  So Hoppy, I'm sorry your experience wasn't good but honestly, you joined for one purpose, to gain members of your group.  You were told how you could do that by becoming an active member and making relationships.  That wasn't good for you and you left.   I am glad you are here and have the support you need.  I wish you the best in your endeavors.

No advertising of other FB groups inside Cluster headaches. There's a wonderful group I'd like to invite you to join for Australia led by Dan Bailey.  All the best.  Cindy

Eric, maybe I didn't interpret this message right, but I read it as being shown the door. Anyways, all the best to you, and all at Cluster headaches.

Hoppy

And people wonder why I don't do Facebook.

Hoppy wrote on Aug 12^th, 2016 at 11:21pm:

No advertising of other FB groups inside Cluster headaches. There's a wonderful group I'd like to invite you to join for Australia led by Dan Bailey.  All the best.  Cindy Eric, maybe I didn't interpret this message right, but I read it as being shown the door. Anyways, all the best to you, and all at Cluster headaches. Hoppy

Fair enough.  It looks to have been a misunderstanding.