Participating in "Headache on the Hill" did something I never expected - it softened my somewhat hardened attitude.Â While it's true that referring to a cluster as a "headache" seems like such a downplay of our disorder, the fact remains that at this time our disorder IS referred to as a headache.Â I'll admit that I have a bit of a chip on my shoulder when it comes to physicians... uneducated and/or haughty neurologists, numerous misdiagnoses, and countless ineffective treatments.Â To my surprise, though, the majority of the AHDA board members are MD's and, as Bob mentioned, 25 MD's actually walked the halls of Congress right along with us.Â This helped me to realize that there are many physicians who really do WANT to help us, however, their hands are tied due to limited research, education, and treatment options.
It was a privilege to meet and work with Dr. Shapiro of the AHDA.Â Not only was he very appreciative of the participation of cluster headache sufferers, but he also took opportunities to met with Bob and I to discuss traditional and non traditional treatments that sufferers find effective, side effects of medications, and the impact this disorder has on our lives.Â He listened as we shared concerns of cluster headaches sufferers and he offered suggestions of additional advocacy/education opportunities for Clusterbusters.Â During Dr. Shapiro's appointment at the office of his congressman, Peter Welsh, he invited me to share CH facts and also my experience of living with CH.Â Â
Understandably, not one of the six representatives I met with was familiar with cluster headaches.Â They listened with concern about how cluster headaches impact sufferers - physically, mentally, financially, socially, etc..Â They were very surprised at many of the facts presented - especially over the suicide rates, that there has never been a congressional hearing on headache disorders, and that NIH has not funded CH research in over 25 years.Â The 3 minute video clip of Chuck having a CH did indeed make a HUGE impact on viewers!Â (Thank you, Chuck!)Â Â Â Â Â Â Â Â Â Â Â Â
Without a doubt, collaborating with AHDA and other headache groups adds strength to our voice as we urge funding for research and effective treatments for cluster headaches.Â Â Also, this collaboration opens up numerous networking opportunities to expand Clusterbusters education efforts, which in turn could generate interest for research and reduce diagnoses time.
It's such a pleasure and encouragement to meet up with others who have cluster headaches.Â Sometimes on message boards or in support groups there seems to be some sort of invisible division between busters and non busters.Â Our "D.C. Dozen" (busters and non-busters) saw the big picture - that we need CH research and EFFECTIVE treatments.Â We had such an AMAZING group!Â
Thank you, thank you, thank you to everyone who supported us by signing the petition and making financial donations!Â Â
See you in VEGAS!!!