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http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl Cluster Headache Help and Support >> Getting to Know Ya >> Looking for a feature a few Cluster stories... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1485963303 Message started by dana4 on Feb 1^st, 2017 at 10:35am

Title: Looking for a feature a few Cluster stories...
Post by dana4 on Feb 1^st, 2017 at 10:35am

Hi – I’m working on a project that uses real patient data from around the world to help people diagnose and treat their headaches. We’re starting with Cluster headaches, and would like to find 2-3 people to interview and feature their stories.

The only requirement for having your case featured is to jump on a 15 minute phone call, and answer some specific questions about your headaches, and treatments you’ve tried. Participants can be anonymous. If interested, please reply to this OR you can reach out directly at dana@kanghealth.io. Thanks so much! :)

Title: Re: Looking for a feature a few Cluster stories...
Post by Potter on Feb 1^st, 2017 at 11:59am

Get in line.

Potter

Title: Re: Looking for a feature a few Cluster stories...
Post by AussieBrian on Feb 2^nd, 2017 at 12:36am

dana4 wrote on Feb 1^st, 2017 at 10:35am:

...to help people diagnose and treat their headaches.

G'day Dana, welcome, and we're always happy to help anyone who wants to help ClusterHeads but please understand it's a very complicated disease, easily mistaken for other conditions that can be life-threatening, and we recommend no-one ever attempt to diagnose or treat their own illness.

On the left side of your screen right now is a button for our Cluster Quiz which is worth a look.

Our advice to all who fight this dragon is that they must start with a confirmed diagnosis from a Headache Specialist to rule other possible nasties and to embark on a valid course of treatment, but please tell us more about your project as any new tool can be another weapon in our arsenal.

Kind regards and please stay in touch,

Brian.

Title: Re: Looking for a feature a few Cluster stories...
Post by jon019 on Feb 2^nd, 2017 at 5:12pm

Hi Dana,

Color me puzzled and skeptical...15 mins of questions from 2-3 patients sharing anecdotal evidence is not gonna help anyone. As Brian said, CH is a complicated condition...no clusterhead could scratch the surface of what CH is, or does to our lives, and our supporters lives... in an HOURS long conversation.

CH.com is THE site for clusterheadache information anywhere in the known world (well, check out clusterbusters.org too)...with thousands of members....over 17 yrs of shared experience...and priceless information unavailable in a collected form elsewhere. We aint doctors... but we're damn professional patients...if you wanna help a cluster patient...you should refer them here...

I checked out your website....didn't learn much as it appears you are just getting started...and I applaud what I perceive to be your intent. I don't want to discourage that, perhaps you could share more information on your project and help us to understand.

Best

Jon