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chicagoch

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1 reviews

Review for Clusterbusters Inc, Richmond , VA, USA

Rating: 5 stars  

Misdiagnosed with migraines 30 years ago, then diagnosed correctly 25 years ago, I've relied on my neurologist (a globally recognized cluster headache specialist) for education and information. Sadly, for the past 25 years, I've been under-educated and poorly-informed. Joining Clusterbusters earlier this year and attending their recent conference have been life-changing, life-saving, transformative experiences. I've learned more in the past few months than I've learned cumulatively over the years about the condition, medications, treatment options, research studies, opportunities for advocacy; the list is boundless as is the generativity which is a cornerstone of the organization. Of particular note, is my gained awareness that there are countless others like me, ready and willing to connect, to share freely their experience and hope. Until recently, I had resigned myself to the dismal, stark reality that I'd likely forever be alone with my experience. In 30 years I'd not met another cluster headache survivor. With gratitude, I can say I have and because of Clusterbusters I'm confident I'll continue meeting others who've traversed similar trajectories, others who've experienced the abject despair, terror, hopelessness, helplessness, and wholly incapacitating pain associated with cluster headaches. Clusterbusters is a vital cluster headache community resource for survivors and supporters and interested others, a life-line onto which one can take hold of and no longer feel adrift, untethered. It has become my absolute first line resource for information I require regarding the condition and the whole of managing it. My only regret is that I didn't find it sooner because, now that I have, I can't imagine letting it go. In its absence, I'd be loathe to consider possible adverse consequences for some/many of those who've found a home in the organization and, perhaps especially for those who long to find and continue searching for a credible, singular, multi-dimensional resource available for providing them with the help they so desperately want and need.

Role:  Client Served