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Started a Facebook Support Page


ClusterHeadSurvivor
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as much as I LOATHE facebook and refuse to submit myself personally to it I often find people asking me why not...ut fellow cluster heads. Or if there is a good article on CH I can not read it as its posted on FB,

So yesterday I started a FB page on Cluster Headaches

Its for people feeling down ,needing some uplifting support not a medical help support. There is many of those.

There is no personal information to me and I did not make it to find old friends(high school etc).

Its soley for us cluster heads,migrainers, and DBS recipents.

I do not offer nor accept medical advice on medication only warm friendly hellos.

I applaud those that are doing the med help and I didnt make a FB to steel their thunder.

Feel free to check it out

I am very very very new and still confused how it works.

It make take me some time to finese it.

search

ClusterHead Survivor ( space in between last word)

or clusterheadsurvivor@rogers.com

I know you can search by email

thanks very much.

have a PFD

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IMHO,  Creating more and more and more different sites for CH support creates fragmentation in the community (and support).  It would seem to me that funneling new sufferers to existing (higher volume) sites like this one (ouch, CH.com etc) would be more beneficial to them and the community.  There are a ton of CH sites all over the place already.  (not to mention people are already abandoning FaceBook like the plague from recent numbers I've seen).

What's wrong with the support people get on this site?  ;)  (obviously I'm partial to this site)   :D

J

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As I stated, there is many and wonderful sites, forums but alot of them deidicate to medicine. Finding relief. Sometimes people don't want meds shoved down their throat.

Perhaps just a friendly hello how ya doing.

I m not as I stated trying to take anything from anyone.

The more we isolate to one site one way of think the less people find what they are looking for.

Capiche?

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I personally feel this forum is the wrong place for such a post... and honestly in very bad taste.  I mean if you think about it ClusterHeadSurvivor, it's like you've come to a party (where volunteers spend hours upon hours maintaining the house), invited fellow guests (who are free to start warm fuzzie threads without having meds crammed down their throats) to leave and join you in your own party. Odd. 

I think this should be removed.  That's just my opinion. 

ps

Clusterbusters maintains 2 Facebook pages and Admins "Clusterbuster Advocacy est. 2012" group.

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Everyone is entitled to their opinion and I respect yours.

In less than 24 hours over 100 people added me and agreed it was great. A lot of CB members are on my page.

In no way shape or form am I to take anyones shinning light away. Not trying to dance at anyones party only make the party bigger.

The more advocacy the better. If anyone ever asked me about "Busting" I would direct them tot hat FB page and or here...

Funny, alot of CBrs messaged me and didnt even know I was a member/supporter here...

Im always trying to think outside the box and spread advocacy to help others.

The more we isolate it to one group , one site the less recognition we get.

Suit yourself. I wish you well.

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The more we isolate it to one group , one site the less recognition we get.

Actually one or 2 large sites are a more effective voice than dozens of little ones. That being said, the cat is already out of the bag, so to speak. The advent of FB and it's popularity, has slowly erroded forums and message boards....and it's a shame.....they had a feel that FB can't come close to matching.

FB above all is a marketing tool.....the forums were for help and support run by average people trying to make a difference.

Anyway...have at it....everyone else does.

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The advent of FB and it's popularity, has slowly erroded forums and message boards....and it's a shame.....they had a feel that FB can't come close to matching. FB above all is a marketing tool.....the forums were for help and support run by average people trying to make a difference. 

Well said Beeyull.....I could not agree more!!

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You sent out a lot of friend requests. So, a sufferer sees the friend request, clicks confirm, and now you have a following. How you decided to 'friend' me is beyond me. Because many of my friends are on FB and not limited to friends only I presume.

Request denied. Good luck and PF to you.

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I have had several emails thanking me today. Sorry I do not live in your misery bubble. I feel sorry for you.

No one has to pay me anything. Lmfao!

You do not represent cluster busters nor do you represent me or anyone in CH and not do I for that fact of the matter

The 25+ thank you emails and compliments I recived in the last hour alone is nothing because if I help one person it's worth it. Sorry you live in a self centred bubble

I don't care I was denied. I only care about the people who want to learn and live positively

I bring a lot to the table. I am one of 24 on the planet who had DBS. My FB is about me reaching out to help people. If you can't see that them I feel sorry for you.

I am not forcing anyone to do anything they don't want too

Sorry gotta run. A lot of happy FB friends wanting to talk

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...

So I have no beef with CHS, but honestly it seems sorta poor taste to come here poaching for people to join another site, when like Mom said above:  LOTS of people volunteer for activities and support of and for this site.  The very message board being posted to here is 110% for supporting those suffering with CH.

Poaching for people to join some other message board = Not Cool, IMHO...  I also agree that deleting this thread would be in good taste. ;)

J

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I think for a lot of folks FB is a place to spend (or lose) time. Majority seems to prefers FB over boards. I think for some people in a bad place FB offers "relief" to reach others fast and get support. Boards are more for serious information searching, learning and sharing. Facebook is pretty awful at that since posts in groups get forgotten over time, only way to really save information are notes. And then there's whole advertisement s**t and the NSA etc.

I started out in the boards. Created a board for finnish CH folks. Then FB became more and more popular and it seems to enchant the majority, sadly, boards suffer. Nowadays I am a bit tired of the FB because there is so little crucial and important stuff, more of the daily chit chat which hides the important messages pretty well. Leaning back more into boards again. But if we have 5 active members in our finnish board, there's always ten fold (50 members) in the FB - board is too old school and not social network enough for most.

I think people find and seek what they need. As a personal opinion it's a little shame so much CH power is in the FB.

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