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kaboom

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    2013 Psychedelic Science Conference - Oakland, CA

    in Advocacy, Events and Conferences

    Posted

    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!

    th_P1050646.jpg

    Take a guess at who the man in the middle is???

    Paint as a trigger ?

    in General Board

    Posted

    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.   ;)

    Dating and CH

    in General Board

    Posted

    We could have bb playing chuck Woolery (sp ?)...could you imagine the questions (example # 1).....Bachelorette #1,we are driving down the highway (I'm driving and your in the passenger side) having a good conversation and all of a sudden you notice that i am getting quite and covering my right eye,leaning slightly leaning forward (hoping you don't notice)but of course you do...What would you do and why

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

    Disillusioning first look into CH and Facebook

    in General Board

    Posted

    Between several of us we've been blocked or censored by several self proclaimed guru's that want to control their communities.

    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!

    Headache on the Hill, 2012

    in Advocacy, Events and Conferences

    Posted

    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!!!

    support group

    in General Board

    Posted

    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.

    Maybe a stupid question?

    in General Board

    Posted

    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.)

    Excellent Price on RC Seeds!

    in General Board

    Posted

    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

    Thank You

    in General Board

    Posted

    [smiley=2vrolijk_08.gif]           [smiley=2vrolijk_08.gif]           [smiley=2vrolijk_08.gif]   

    Great to hear you're feeling better!      

    Advocacy project, Wash DC.

    in Advocacy, Events and Conferences

    Posted

    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]

    Recall on Excedrin - an FYI

    in General Board

    Posted

    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

    not sure i have the strenght

    in General Board

    Posted

    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!!! 

    Advocacy project, Wash DC.

    in Advocacy, Events and Conferences

    Posted

    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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