kaboom

Questionable activities I had to prevent Mr. Wold from engaging in:

Our Clusterbuster info table: Bob and Rick Doblin engaging in deep conversation:

Hi all! This was an amazing conference Bob and I attended last week. I've posted some pics and info on our FB page already, but also wanted to copy some here also for those who do not use FB. 2013 Psychedelic Science Conference Among the 1800 people at the Psychedelic Science 2013 MAPS conference we just attended in Oakland were hundreds of MD;s, PHD;s, the very best of the worlds researchers (33 countries represented) University administrators, famed authors and news outlets. The Clusterbusters information table was a HUGE sucess! To our surprise, we were approached numerous times with questions, requests for additional information, and handshakes of congratulations for our advocacy and progress in the medical field. Before the end of the conference our table was completely wiped out of brochures (explaining the mechanisms of cluster headaches, the impact upon the lives of the familes that live with them, the desparate need for research), printiouts, and our very first edition of "Cluster Stories". ("Cluster Stories" is a booklet of first account descriptions from clusterheads who struggle, survive and inspire. These stories touch readers hearts and compel them to want to learn more. Please, keep your stories coming so we can add them to our next edition!) All of this in addition to the presentations that focused on cluster headaches & Clusterbuster research made a lasting impact to attendees. No longer are we a community that is alone, looking for help from within and struggling to get the attention of others. Our voices are being heard! We are being approached by people that can help - coming to us asking what can be done, willing to get involved, and eager to tell others about cluster headaches. We have come a long way! Every worthwhile journey takes enormous energy, endurance, and many, many steps. This has been one long relay race that is gaining ground due to the performance of numerous runners. Thank you all again for every bit of help - your efforts in speaking out to others, your contributions to our conferences, website, and message boards, and your donations which enable our non-profit to continue. Very importantly, thank you for your confidence that we can and will succeed! Take a guess at who the man in the middle is???

Come on, CH-HELL, post a pic for us! I went ahead and made my picture my avatar. I'm not normally quite that bulky....I think the camera must have added about 10 pounds. Â

I like the pic you just posted of yourself, Jeebs. Sure, you may have been slightly overdressed for the occassion...but your hair looks amazing plus a guy can never go wrong wearing a tux!

Oil based paint and bleach fumes are two big triggers for me also. My head goes ballistic for several days after being exposed to them. I've never noticed if money was a trigger. I would like to experiment with that, though.

But...I already identified myself in Racer's picture. ;-)

Bob, what are the dates for D.C.? I keep forgetting! I would REALLY like to attend the MAPS conference. Maybe if all of us clusterheads roomed together??? Kidding, I'm kidding...

Love it! Doug, could you put this on the agenda for Chicago next year?? ;D

Laughing...Be afraid, be afraid!! (I do have a tendancy tend to cause a little chaos at city council meetings.) Hey, wait a minute - a 65 year old male???

I've never been kicked out of anything in my life, but Chris ousted me from The Cluster Headache Support Group for simply supporting and defending Bob. How sad is that??? Keep up the good work, Cindy!

What?!?! You're a brat, Racer, a BRAT! ;D

This is our chance to make a difference in the medical community!Â

Participating in "Headache on the Hill" did something I never expected - it softened my somewhat hardened attitude. 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. 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. 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. 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. 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. He listened as we shared concerns of cluster headaches sufferers and he offered suggestions of additional advocacy/education opportunities for Clusterbusters. 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.  Understandably, not one of the six representatives I met with was familiar with cluster headaches. They listened with concern about how cluster headaches impact sufferers - physically, mentally, financially, socially, etc.. 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. The 3 minute video clip of Chuck having a CH did indeed make a HUGE impact on viewers! (Thank you, Chuck!)            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.  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. Sometimes on message boards or in support groups there seems to be some sort of invisible division between busters and non busters. Our "D.C. Dozen" (busters and non-busters) saw the big picture - that we need CH research and EFFECTIVE treatments. We had such an AMAZING group! Thank you, thank you, thank you to everyone who supported us by signing the petition and making financial donations!  See you in VEGAS!!!

Without a doubt, busting can help with migraines! When I began busting, I did it to help my cluster headaches. I also had chronic migraine and tension headaches (up to 28 days out of the month with a migraine headache). Since busting, I rarely get "regular" headaches and only have a migraine about every other month. My daughter was diagnosed with her first migraine at age four. It's so hard to watch your child suffer with such pain on a regular basis - lots of missed school, ER visits, and nasty meds. She's 17 now and recently began using seeds as an abortive and a preventative with EXCELLENT success.