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Everything posted by kaboom

  1. Questionable activities I had to prevent Mr. Wold from engaging in:
  2. Our Clusterbuster info table: Bob and Rick Doblin engaging in deep conversation:
  3. 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???
  4. 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
  5. 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!
  6. 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.
  7. But...I already identified myself in Racer's picture. ;-)
  8. 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...
  9. Love it! Doug, could you put this on the agenda for Chicago next year?? ;D
  10. 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???
  11. 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!
  12. What?!?! You're a brat, Racer, a BRAT! ;D
  13. This is our chance to make a difference in the medical community!Â
  14. 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!!!
  15. 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.
  16. There are really no stupid questions...but I have tried some not so smart things to relieve my CH. Keep in mind that I did the following when dosing. Occasionally, CH will give me a major smack around during a treatment...and this was one of those times. After several attacks, I figured I'd totally confuse my head and finally teach it a lesson by mixing Hot and Cold. I blackened SEVERAL jalapenos, chopped them up and mixed them into a huge bowl of vanilla ice cream and wolfed it down during a full blown CH. No, it didn't relieve my CH...but muahahaha...it did feel goooooood!!!   ;D (Umm, yes...my belly did have a few issues later.)
  17. The Clusterbuster group and the Alliance for Headache Disorders Advocacy did an AMAZING job advocating on behalf of those with cluster headaches! We will be posting a D.C. update soooooon under the new "Advocacy/Conferences tab". There are some pictures posted on our FB page: http://www.facebook.com/#!/pages/Clusterbusters/102168033225406 (We missed you, Racer. Hope all is well.)
  18. Great price! I was doing some seed shopping and found that Tranceplants is selling 500 RC seeds for $20.00 or 1000 for $37.00. (most other sites are around $50.00 for 500 RC seeds) I've ordered from Tranceplants before and was very pleased with how fresh the seeds were.  Shipping was $3.00 for standard U.S. mail. http://www.tranceplants.net/product-info.php?pid141.html Select Quantity Quantity 100 Seeds (2,5g) ;+$5.00 250 Seeds (6,3g) ;+$11.00 500 Seeds (12,5g) ;+$20.00 1000 Seeds (25g) ; +$37.50
  19. Check out CB's Washington, D.C. Event Page! http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07e5iawyxi94a96259
  20. [smiley=2vrolijk_08.gif]       [smiley=2vrolijk_08.gif]       [smiley=2vrolijk_08.gif]  Great to hear you're feeling better!   Â
  21. UPDATE! We need you! The Alliance and Clusterbusters are building a team to take to Washington D.C. to make an impact. We are looking for people with a story to tell and a passion for making a difference in the lives of headache sufferers. In addition to the one night of free lodging being offered by the Alliance, a limited number of partial travel sponsorships for the "Headache on the Hill" event are being made available to specifically get a cluster headache patient or support persons "voice" on the team to DC! These sponsorships are through Clusterbusters, with the help and the generosity of O.U.C.H. and individual donors. If you would like to go to D.C. with us but are in need of financial assistance, please submit the scholarship application asap. https://adobeformscentral.com/?f=ZFF9Ywmv5I1dbcBSjJJJHg Deadline to apply is February 17th.  [move]Pssst...Don't forget to sign the petition!                       Make your voice heard in D.C.!                       Jeebs...do you regret showing me this "coolness"???  8-)[/move]
  22. Wanted to pass this Excedrin recall along since many of us use OTC pain meds. The concern is that some of the recalled product may contain opiate meds. (opiates can trigger CH for me) (Other products are included in the recall) Details and return instructions: http://www.nodoz.com/otc/#CCRC Reason for recall: http://yourlife.usatoday.com/health/story/2012-01-09/Why-Excedrin-NoDoz-bottles-are-being-recalled/52470062/1 All lots of listed Excedrin® products with expiry dates of December 20, 2014 or earlier are included in this recall (except for 2, 6 or 10 count packages). Excedrin® Extra Strength Caplets Excedrin® Extra Strength Express Gel Caplets Excedrin® Extra Strength Gel Tablets Excedrin® Extra Strength Tablets Excedrin® Back & Body Caplets Excedrin® Sinus Headache Caplets Excedrin® Migraine Caplets Excedrin® Migraine Gel Tablets Excedrin® Migraine Tablets Excedrin® Menstrual Complete Express Gel Caplets Excedrin® PM Caplets Excedrin® PM Express Gel Caplets Excedrin® PM Tablets Excedrin® Tension Headache Caplets Excedrin® Tension Headache Express Gel Caplets Excedrin® Tension Headache Gel Tablets
  23. 15 "Average woman, and average male or female biologist"
  24. Positive Vibes beamed to you, Buzz! Ron - weren't you talking about getting a tat a while ago? Did you get one? At the Chicago conference last year there were a couple of people sporting some very cool ink. Hmmm...for Vegas, maybe we can convince BobW to set up a CH tattoo fashion show - complete with a cat "tat" walk.  ;D  Come on, that was kinda' funny!!!Â
  25. Update: The Alliance for Headache Disorders Advocacy is offering to pay one night of lodging (3/26) for anyone participating in Headache on the Hill. We REALLY need cluster headache sufferers and supporters to attend. The deadline to sign up to participate is February 25, 2012. The will allow ample time for the Alliance to secure congressional appointments. Clusterbusters now has a facebook page where updates will also be posted. (Please "Like" if you would like to receive updates!) http://www.facebook.com/pages/Clusterbusters/102168033225406 ____________________________________________ Below I copied and pasted the latest CB Facebook post regarding the DC event: Do you feel we need MORE RESEARCH AND EFFECTIVE TREATMENT OPTIONS for Cluster Headaches? NOW IS THE TIME TO MAKE YOUR VOICE HEARD! Please join our advocacy team and the Alliance for Headache Disorders as we attend "Headache on the Hill" in Washington, DC to push for senate hearings on the need for increased funding for headache research. In order to make the biggest impact, we NEED sufferers and supporters from as many states as possible. The Alliance is generously offering one night of paid hotel lodging to help defray your travel expenses. For additional event and lodging details, email clusterheadache@ymail.com with with "Washington" in the subject line. This is a phenomenal opportunity to get involved with advocating for yourself and other cluster headache sufferers! If you are unable to attend but wish to financially support our cluster headache advocacy and education efforts, please see our Welcome page for links to donate through Paypal or Causes. I hope to see a lot of you in DC as we make some Cluster noise!!! B. Wold President Clusterbusters ps You CAN make a difference! Please don't forget to sign the Alliance's petition and comment specifically about CLUSTER HEADACHES.
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