Click this link to read a post I like on the clusterheadaches.com message board...

ClusterHeadSurvivor

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I Survive not suffer

Posts: 42
Ontario Canada
Gender: male

Started Cluster Headache Support Page
Jan 31^st, 2014 at 7:58am

As much as I LOATHE facebook and refuse to submit myself personally to it I often find people asking me why not...but 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

Batch, if this is in the wrong forum,please by all means move to the appropriate forum. Thank you

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ONS and DBS recipient.

https://www.facebook.com/#!/clusterheadache.surviv

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Started Cluster Headache Support Page Reply #1 - Jan 31^st, 2014 at 8:05am Hello ClusterHeadSurvivor, There is a support group on FB called "Clusterheads", with over 400 members. You can request to join as it is a closed group. As for the post being in the correct forum, this one is appropriate. ~Melissa
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Started Cluster Headache Support Page Reply #2 - Jan 31^st, 2014 at 1:07pm I guess I'm the only one that sees the irony in this......
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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: Started Cluster Headache Support Page Reply #3 - Jan 31^st, 2014 at 2:08pm Racer1_NC wrote on Jan 31^st, 2014 at 1:07pm: I guess I'm the only one that sees the irony in this...... You are not alone.
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ClusterHeadSurvivor CH.com Junior Offline I Survive not suffer Posts: 42 Ontario Canada Gender:	Re: Started Cluster Headache Support Page Reply #4 - Jan 31^st, 2014 at 7:44pm is there a problem here?
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or @ClusterHead Tom on twitter ClusterHeadSurvivor YouTube page Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or ONS and DBS recipient. IP Logged

Potter Ex Member	Re: Started Cluster Headache Support Page Reply #5 - Jan 31^st, 2014 at 8:10pm There's already a boatload of support groups on FB. Potter
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Started Cluster Headache Support Page Reply #6 - Jan 31^st, 2014 at 11:14pm Im fine right here thanks. I use face book to play poker not to remind me that Im a cluster head.
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BarbaraD

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: Started Cluster Headache Support Page
Reply #7 - Feb 1^st, 2014 at 6:31am

C.s.
Don't mean to rain on your parade and I'm sure you mean well, but personally, I've been finding all the support I need right here since '98 and will probably continue to do so.

I go on FB to check on my grandkids and see what new jokes have been posted, but I come here for support.

the guys here know me and I know them and don't have to break in a new bunch. But now that's just my opinion. Kiss

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What don't kill ya, Makes ya stronger!

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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: Started Cluster Headache Support Page
Reply #8 - Feb 1^st, 2014 at 11:26am

Hi ClusterHeadSurvivor,
If your goal is to find qualified CH treatment in the Ontario area, please PM me and I will provide you with a recently compiled list of 10 highly recommended Ontario doctors from fellow CH'ers who reside in Ontario, Canada.

However, if your goal is to just chit chat with others sharing advice/opinions/venting/education/experiences/etc about CH's...well then with all due respect, you are missing what this website is all about.

This website (ch.com) is the most comprehensive, educational and supportive resource available worldwide. It doesn't get better than this! Obviously do what you want, but honestly there really is no need for another CH website, nor another online CH resource. Ch.com is where it all begins and ends; CH.com offers everything and more!

-Gregg in Las Vegas

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Started Cluster Headache Support Page Reply #9 - Feb 1^st, 2014 at 12:49pm Racer1_NC wrote on Jan 31^st, 2014 at 1:07pm: I guess I'm the only one that sees the irony in this...... Oh no, I saw it. I was just answering specifically...
Back to top	« Last Edit: Feb 1^st, 2014 at 12:49pm by Melissa » Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Started Cluster Headache Support Page Reply #10 - Feb 2^nd, 2014 at 8:01pm Surely getting the information out there for CHeads and Supporters is a good thing, be it on Facebook, Twitter or towing a banner behind an aeroplane.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Jimi

CH.com Moderator
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Don't feed the moderators

Posts: 4925
Madisonville, KY
Gender: male

Re: Started Cluster Headache Support Page
Reply #11 - Feb 3^rd, 2014 at 4:47pm

I agree with Brian. If the info is good the more places the info can be found the better. I help moderate this one but I belong to 3 more and they all put out good information. Back in the day this was the only game in town and I am still partial to it as is apparent but fortunetly we have grown and spread out to other venues and I see that as a good thing.

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I am convinced that life is 10% what happens to me and 90% how I react to it.

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