FunGuy

The conference is now ready!! September 12 to 15, 2013. Registration information, hotel links and list of speakers is available here: http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07e6wnq9zdaec5a308 More speakers will be announced shortly. The DoubleTree by Hilton Hotel is conveniently located hear O'Hare airport. Also close by are the Blue-line trains to downtown and a casino. The rate of $89 per night includes free parking (at the hotel next door) and free internet. Rooms are over-sized with a work area and a pull-out sofa. Chose from either one King-size or two double beds This link will take you to the DoubleTree O'Hare Hotel homepage: http://doubletree3.hilton.com/en/hotels/illinois/doubletree-by-hilton-hotel-chicago-ohare-airport-rosemont-CHIDTDT/index.html This link will take you to the on-line reservations pages set up for the conference: http://doubletree.hilton.com/en/dt/groups/personalized/C/CHIDTDT-CLU-20130909/index.jhtml?WT.mc_id=POG Reserve your room by August 12 to ensure this great rate! Any questions: info@clusterbusters.com

We are pleased to announce that the 8th Annual Clusterbuster Cluster Headache Conference will be held on September 12 to 15 at the DoubleTree O'Hare Hotel in Chicago (Rosemont). The conference will begin with registration and the Presidents Reception on Thursday evening, speakers and presentations will run all day Friday and Saturday. We have negotiated an incredible rate of $89.00 per night for over sized rooms with free parking and free in-room internet. Links for reservations will follow shortly. Registrations details, speaker list and other information will be posted in the next few weeks. If you have any questions please post them here or email us: info@clusterbusters.com See you in Chicago!!

http://www.urbanshaman.net/ Downtown Vancouver. I've used these guys myself. Excellent service

Sorry for not replying earlier. Each day I hoped we could make an announcement. It looks like the 8th Annual Clusterbusters Cluster Headache Conference will be run from September 12 to 15 in Chicago. The President Reception will be Thursday evening (12th), and speakers will be Friday and Saturday (13 & 14). We are in the process of finalizing the hotel location near one of the airports. So mark you calendars in pencil for now and details should follow shortly. FG

There new site is up and running, still a bunch of cosmetic changes to make and likely a bunch of typos to correct. http://clusterbusters.com/ There may be some page URL changes form the old site, so please check your links before you post them. I want to point out 2 new sections: -Oxygen. What I believe to be the most complete synopsis of oxygen use for CH, created by CHfather (Jerry) http://clusterbusters.com/?page_id=77 -Resources. Which now includes the recommended Doctor list created and maintained by Racer1_NC (Bill) http://clusterbusters.com/?page_id=455 Our thanks to both for their efforts. Enjoy FG

A new research study from the Centre for Research in Family Health in Halifax Nova Scotia (at Dalhousie University). The are looking for people between the ages of 14 & 28, with all types of headaches, to participate in this project. More details can be found at this link:Â www.crfh.ca/whi An interdisciplinary team lead by Drs. Patrick McGrath and Anna Huguet, working at the Centre for Research in Family Health (www.crfh.ca) at the IWK Health Centre (www.iwk.nshealth.ca) in Halifax, Nova Scotia, Canada is currently developing a distance psychosocial intervention for adolescents and young adults with recurrent headaches. This intervention, called the Wireless Headache Intervention (WHI), will uniquely be delivered entirely over the iPhone and the computer. They are now testing one of the components of this intervention as the iPhone headache diary (the WHI diary). This diary is intended to help headache sufferers become more aware of their headache patterns and monitor their progress over the treatment. They are now testing the diary and recruiting participants anywhere in the world to take part in the online study. Individuals between the ages of 14-28 with recurrent headache problems and who have an iPhone are encouraged to participate. You can see more information about the study at: www.crfh.ca/whi Poster attached below WHI_iPhoneApp_Recruitment_Poster.pdf

Indo should be OK with busting. Who knows why Indo worked for a while, this condition can be quite weird sometimes. In theory Indo should not help CH, but there are reports of cases where it does. I thought it once stopped a cycle early (years ago), but it was useless the next cycle. I usually get concerned when someone's headaches start changing, especially when new symptoms develop or things seem to be getting worse overall. Keep your Doc appraised of what it going on, best to be safe. Everything to know about Indo is here: http://www.rxlist.com/indocin-drug.htm side effects here: http://www.rxlist.com/indocin-drug/side-effects-interactions.htm GI problems seem to be common. FG

The easiest difference in distinguishing HC from CH is the response to Indomethacin. While some with CH have reported some success with Indo, HC is virtually always responsive. http://www.migrainetrust.org/factsheet-hemicrania-continua-10920 http://en.wikipedia.org/wiki/Hemicrania_continua Talk to your doc, maybe he/she will listen? FG

The literature suggests little value. Yet there may be some benefit for some chronic and episodic cases, even in stopping a cycle. Access to the chamber could make this a difficult therapy to obtain. http://www.ncbi.nlm.nih.gov/pubmed/8455970 http://www.ncbi.nlm.nih.gov/pubmed/18646121 http://www.ouch-us.org/medications/hyperbarico2.htm If you've got a chamber close by it might be worth a try. Seems it can't hurt?

Both the Agenda and the Syllabus are now available. Follow this link: http://events.r20.constantcontact.com/register/event?oeidk=a07e5laz9vf2d3c9cfa&llr=asfwt7iab Click on the buttons in the bottom right for the conference pages, then "view" button/link. These will be printed and available at the conference. edits: Because I still can't type!!

5-HTP was discussed extensively on ch.com a few years back Here are a couple of links, or you can do the search on the home page: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2003;action=display;num=1041532979 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1298027743 http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1147538786 I don't think there was ever an consensus on its effectiveness. I'd stick to melatonin if you can find it anywhere. Just me opinion. FG

The Rio hotel has changed the meeting room in order to accommodate the number of attendees. All functions will now be held in the Amazon Rooms (C, D, E & F) On another note, if you are shipping items for the raffle & auction, please do so now in order to assure they arrive by Wednesday. Thanks

updates and oxygen info in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1347050939

Attached is a summary of important information regarding the Vegas conference. Please, if you need oxygen at the conference read this carefully. you will need your own mask and E-tank regulator. If you don't have a regulator, talk about it in this thread and see who can help.  FG attendee_information_2012.doc

Greetings all. Several updates for the conference in Vegas on September 21 & 22. The hotel is still offering rooms at $85, don't know how much longer that will last though. We have arranged for oxygen, I'll be posting details on that later in another thread. We've added 2 new speakers and presentation: --Jason Magistro will be presenting the early results from the "Quality of Experience" survey via video. This will be very interesting. --Potter will be speaking, we're calling this "Potter's Recollections". This promises to be informative and humorous. The balance of the lineup is this: The agenda and syllabus will be available shortly. Go to this link for more details and registration. http://events.r20.constantcontact.com/register/event?oeidk=a07e5laz9vf2d3c9cfa&llr=asfwt7iab

I just checked online today and the Rio appears to have opened up another few rooms for the conference, still at the $85 rate. Don't know how long that will last, so if you are thinking of going you should book now!

The response to the Quality of Experience survey has been quite remarkable; we will be closing the survey shortly so if you wish to participate, please see this thread for the necessary information.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1343145113 We thank all of those that responded and assure you we are compiling the results now and hope to present them at the 7th Annual Clusterbuster Headache Conference in Las Vegas on September 21 and 22. For those of you that have taken the survey, your responses to date have lead to the idea of a short follow up questionnaire/survey. This is being developed now and will be ready shortly. We welcome your participation in this second phase of the survey but only those that completed the first part are able to participate in the follow up. As we retained no identifying information from the original survey, in order to send you the follow-up links we will need you to contact us by email or PM (to this post) and provide your email address to us. Please DO NOT post your email in this thread. Emails to: info[at]clusterbusters.com We can assure you that after contacting you regarding this new survey link, your email will be deleted and not used in any other manner other than this follow-up documentation. This notice is also being sent out by emails through Constant Contact to people that may not frequent the message boards to see this announcement. Again, thank you for your ongoing support of this study. Regards Jason Magistro. and Clusterbusters.

Information about sending items to the conference is posted in a separate link. Click here for:Â shipping information Thanks to our friends in Vegas for handling this and to all of you that send in items. :-)

Greetings all. The conference is fast approaching, got your room booked and registration confirmed yet? Each year we hold an auction and raffle. All of the items for the auction come from clusterheads, some who will be in attendance and many who can not make the trip to Las Vegas but help support our efforts. Every year there are some truly beautiful and amazing items donated to the auction and raffles. Clusterbusters has arranged for an address in Las Vegas to send any items you wish to donate to the conference.  We truly appreciate any and all donations as all monies raised help fund the advocacy, education and research projects we have underway.  Due to the open nature of the boards, I will not post the address on this public-viewable message board. If you have items you wish to send to Las Vegas, please contact us by email (address below) or PM me and we can set up the delivery. A big thank you to the people in Las Vegas who are assisting with this, we could not run this event without your help If by some chance your package is exceptionally large or heavy, please advise as we may need to make other special arrangements. Thanks to all. Clusterbusters info@clusterbusters.com

bump reminder. If you have not completed this survey yet, please do so. The link is in your email, or PM me if you like. Thanks all

I expect Jason will be along later to comment. For now, I see where the problem is developing so I've spaced and underlined sections in the first question to make this more clear. In part, it now reads: by selecting one of the options below. and later then please try as best as possible to reflect on the most recent time One, most recent. Make sense now?  :-) Thank you both for your comments and for completing the survey. FG

Clusterbusters, a non-profit organization dedicated to the advocacy, education and to finding effective treatment of Cluster Headache worldwide, is pleased to present a new research survey by Mr. Jason Magistro, who is currently a graduate student at the University of West Georgia where he is completing his Master's degree in psychology. Jason has combined his interesting in cluster headache, psychology and hallucinogenic substances into a “The Quality of Experience” survey. Please note, only those persons that have taken psychoactive substances (LSA, LSD, psilocybin and other hallucinogens) for treatment of their cluster headache should take this survey, as it is SPECIFIC to that population. This is not about general response to treatments; this is about measuring the experiences while treating your cluster headache. If you don’t fall into this sub-group of individuals, please do not take the survey. And note, being that this questionnaire is measuring psychedelic use, do not fill in marijuana as an option. This questionnaire should take roughly 10-15 minutes. There will be an initial list of options at the beginning of the questionnaire, asking you to choose which psychedelic you use as a medicinal remedy for your busting. In that list, you will notice a space where you can fill in an option that may not be listed. Again, please only participate in this questionnaire if you have busted using a psychedelic, being that this questionnaire is specifically aimed at measuring the response you had during and after your experience with the substance you chose. All participation will be confidential. Jason hopes to present the early results at the 2012 Clusterbuster Conference held in Las Vegas. A link to this survey invitation was sent by email. If you wish to complete the survey and did not receive the invitation to participate, please contact me by PM or email to info@clusterbusters.com

I just posted the updated agenda in the Advocacy, Events and Conferences section AGENDA LINK One more reason to be in Vegas, we've got a great lineup of speakers and presentations for 2012. Â

More additions to the agenda for the 7th Annual Clusterbuster Conference, September 21 & 22 in Las Vegas Link to the information page: http://events.r20.constantcontact.com/register/event?oeidk=a07e5laz9vf2d3c9cfa&llr=asfwt7iab Scheduled speakers and presentations include:   *Mr. Bob Wold, President of ClusterBusters   *Dr. Brian McGeeney, Neurologist and Pain Medicine specialist. Assistant Professor of Neurology at Boston University School of Medicine.   *Mr. Carter Lee, Author, Writer, Radio Host, Motivation Speaker and Clusterhead   *Ms. Teri Robert, Headache Advocate, Member of AHDA and ACHE.   *Mr. Andrew Cleminshaw, "Looking Past the Pain of Cluster Headaches”   *Dr. John Halpern, Assistant Professor of Psychiatry at Harvard Medical School and Director of the Laboratory for Integrative Psychiatry, Division of Alcohol and Drug Abuse at McLean Hospital. Cofounder of Entheogen Corp, developing BOL   *Ms. K. Robbins, SSI/SSDI Specialist, Cluster Headache Patient Advocate   *Panel Discussion, Review of ClusterBusters at the “Headache on the Hill”     *Ms. M. Weil, Update on the Clusterbuster Medication Research Survey   *Breakout group sessions:      · Review of SSDI, SSI and Issues Related to Cluster Headache      · Oxygen demonstration and discussion And a very special presentation by Dan Ervin - Clusterhead and Star of a National Geographic Television Show. More speakers and details to follow This is one conference you will not want to miss! For further information or questions: info@clusterbusters.com

link??? LOL