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FunGuy

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    Oxygen at the 2013 Conference

    in General Board

    Posted

    Oxygen Tanks:

    Oxygen is available for conference attendees from Wednesday Afternoon on September 11 to 9 AM Sunday morning. This is possible to the generosity Apria. If you are an Apria client, they have a program where they will supply Oxygen to clients who travel at no cost. If you think you may need extra bottles for yourself and you are an Apria client, please contact your local APRIA travel coordinator.

    Exact pick up details at the hotel are not available at this time however notices will be posted at the Signature III  Room. Please contact Bob Wold or Lee Markins after you arrive at the hotel.

    There will be a large M-tank with regulator available outside the meeting room while presentations are underway. You will need to bring your own mask with you to the meetings if you think you may need to use this tank during the daytime.

    We have also arranged a number of smaller E-tanks to be available. However, these do NOT have the built in regulators so you will need to bring your own regulator for the E-tanks and your own mask.    If you do not have a regulator we will need to make arrangements for you to borrow or rent one. 

    To those who will not need oxygen at the conference, please consider bringing an E-tank regulator with you to lend to others. 

    Please let us know if you feel you will need oxygen during the conference and how many E-tanks you may need.   

    This can be posted on the message board, PM or email to: info@clusterbusters.com

    Due to the weekend closure of the supplier's office, tanks may be limited. Please help us to ensure there is enough oxygen for everyone.

    Also, due to hotel regulations and cost considerations, you will have to pick up your E-tank on Wednesday afternoon or later and return it by Sunday at 9am to a specified location at the hotel. The tanks have to be handled by ourselves and we incur significant charges if the tanks are not returned or had to be collected by hotel staff. Your cooperation is greatly appreciated

    2013 conference - new additions

    in General Board

    Posted

    The 2013 cluster headache conference will soon be here, it's not too late to register.  All registration information and speaker lists can be found here:    CONFERENCE DETAILS

    There may still be a few rooms left at $99, check online with the hotel here:    DOUBLETREE BY HILTON

    The final agenda and syllabus can be now downloaded:  Agenda    Syllabus

    We have 3 new presentations added to an already exciting and packed agenda:

    First, Mr. Vernon Robinson, a fellow clusterhead  who hasbeen experiencing clusters for 21 years (the first 15 as episodic and chronic since) will relate his history of treating cluster headache ineffectively for many years and his current regimen of ketamine nasal spray, sumatriptan and DHE infusions under the care of Dr. Brian McGeeney (Boston Medical Center and Boston University School of Medicine).  His presentation is "Battles With The Monster In His Head".

    Secondly, in addition to his presentation on Saturday, Dr. Larry Schor, PhD, a licensed psychotherapist and Cluster Headache patient, will be facilitating a therapeutic group for patients and their supporters Friday evening from 7:30-9:00:        The safest room on earth? A therapeutic group for Cluster Headache patients (and their supporters)

    Beyond the physical pain of Cluster Headache, described by experts as among the most painful conditions humans experience, lies the often overlooked emotional, mental, and relational problems. CH patients are frequently misdiagnosed, misunderstood, and face a pervasive lack of understanding among even well-intentioned people. In short, no one who has not had a CH attack really can know what one feels like. Given the dramatically elevated suicidality among CH patients, addressing the psychological aspects of persons living with this condition is crucial. This group will offer participants the opportunity to truly be heard among people who can truly understand.

    Lastly, Clusterbusters is pleased too announce the participation of ElectroCore Medical, the manufacturers of GammaCore.

    GammaCore is a non-invasive treatment therapy of vagus nerve stimulation.  This treatment shows considerable promise for those with primary headaches such migraines or CH.  Trials are currently underway in other countries and will be starting in the USA shortly.  Mr. Eric Liebler and Ms. Jennifer Berman of ElectroCore Medical will make a presentation at the conference. 

    Their web site is ElectroCore

    Our conferences present a very diverse and complete picture of the treatment of CH.  The mission statement of Clusterbusters states:  Clusterbusters is an IRS-approved 501 © (3) non-profit research and educational organization dedicated to researching treatments that show promise for reliable, effective and long term relief from cluster and related headaches.

    This year's conference will be amazing.

    For more information or questions, please email info@clusterbusters.com

    Support From a Non-Sufferer

    in General Board

    Posted

    [movedhere] General Board [move by] FunGuy.

    This post got messed up by me.   accidentally deleted the account which deleted the thread I was reading at the time and removed this post.

    I've restored the post, I've written Libertas and he has reestablished his account with the same user name, but the system will not link to this post. 

    Sorry about that.

    FG

    Nothing

    in General Board

    Posted

    Now I am NO computer expert, so I am looking into this idea and here is what I 'think' I know so far.

    SSL is set up on the server (done for the online store at ch.com), if you wish to have your transmissions between the server and yourself encrypted simply add an 's' to the http in the address bar.

    http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl

    https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl

    However, that is going to mess up the page because of the google banner.

    Remember, most of the board is open to public viewing so encrypted or not, others can read what you post.  And while sensitive sections are limited access it is not difficult to register and likely even easier for some "agency" to get in (as BB so eloquently stated!)

    I've asked DJ to look into entire encryption, he will.  THMH, I will pass on your offer of assistance.

    Funny how we have to protect ourselves from those that are supposed to be protecting us.  Hmmmmm.

    FG

    getting treatment on tribal lands or in Canada

    in General Board

    Posted

    What about Canada?  I'm not far from there.  I had heard that it's possible for a doctor with a license there to administer psilocybin treatment.  That could also be worth it to me if it meant I could get this treatment legally. 

    No, the doctors in Canada can not prescribe psilocybin.

    There are some clinical trials for treating other conditions with hallucinogens, but those are not available to the general person/public,

    FG

    New Here, and ?? :)

    in General Board

    Posted

    Daniel:  Right now we are expecting the biggest meeting of clusterheads ever! 

    I don't have the final numbers yet, registration is still open but there will most certainly be over 100 there.  :-)

    Registration here:  events.r20.constantcontact.com/register/event?oeidk=a07e6wnq9zdaec5a308&llr=asfwt7iab

    There may still be rooms available at the hotel for $99 a night.  Use the link from the registration page.

    Odd Add

    in General Board

    Posted

    Unfortunately, the ads are here to stay.   They help offset the cost for the hosting of the Message Board (goes to the host, not CB) and are basically built into the YABB boards system.  We have no means to control the content of the ads, google does all that. 

    Sorry.

    FG

    Conference auction & raffle in Chicago - Sept 2013

    in General Board

    Posted

    Greetings all.  The conference is fast approaching, got your room booked and registration confirmed yet? 

    September 12 to 15, 2013.

    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 Chicago but help support our efforts.  Every year there are some truly beautiful and amazing items donated to the auction and raffles, we thank everyone for their generosity.

    Clusterbusters has arranged for an address in Chicago 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 research, education, advocacy and support 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 Chicago, 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 Chicago 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

    Link to Conference Information, Speaker List, Hotel Reservations and Registration:  CONFERENCE DETAILS

    2013 Conference Update - September in Chicago

    in General Board

    Posted

    Greetings all.

    Things are shaping up for the 8th Annual Clusterbusters Cluster Headache Conference being held in Chicago on September 12 - 15, 2013 at the DoubleTree by Hilton hotel, conveniently located near Chicago's O'Hare Airport.

    We have put together an amazing line up of speakers and presentations which will cover just about everything to do with cluster headache.

    Registration details and speaker list can be found here:  CONFERENCE DETAILS

    Hotel reservations can be made here:  DOUBLETREE BY HILTON

    Please note, in order to obtain the special room rate of only $89 per night you MUST reserve your room by August 12, 2013.  We have only a limited block of rooms so I strongly suggest you make your reservations early. 

    When you register you can pay with PayPal using a credit card or debit card.  You can also pay at the conference.  Please register soon so we have a better idea of number of attendees.   

    It's shaping up to be the largest meeting of clusterheads ever!  You will want to be part of this event.

    We also have a FaceBook page open for discussion:  CONFERENCE ON FACEBOOK

    For any questions or comments email:  info@clusterbusters.com

    Anyone switch sides?

    in General Board

    Posted

    My personal experience: 

    I have always switched sides since onset 37 years ago.  Always episodic, I used to get 2 cycles a year like clockwork and they would usually alternate sides but I never knew for certain which side was coming next.   Have had several  cycles start on one side and shift to the other mid-cycle and once even changed back to the side of onset, all in my typical 10 weeks cycles. 

    Recent years have seen a dramatic decrease in frequency of cycles and I'm currently in a 2-year remission (and counting!) which I attribute to regular preventative treatments.

    I have never found much of a difference for which side they are on, the cycle duration and  frequency and intensity of each individual attack remained relatively the same.  As did my ability to abort an attack with oxygen, regardless of which side they were on.  In the last 10 or so years there are slightly more cycles on the left but I don't think it's significant.

    For me, it doesn't seem to matter and I try not to worry about what could be as I can't change it and attempts at anticipation doesn't help with my 'tude.  KWIM.

    Good luck.

    FG

    Wold to speak at MAPS Psychedelic Science 2013

    in General Board

    Posted

    Bob Wold, president of Clusterbusters Inc is confirmed for the MAPS Psychedelic Science 2013 conference in Oakland California which runs from April 18 to 23, 2013.

    His presentation will be “LSD and Psilocybin for Cluster Headaches: Preventing Pain, Saving Lives”.    Details and an outline of the presentation can be viewed in the News Section, bottom left corner on our web site home page:   http://clusterbusters.com/

    NICKNAMED “SUICIDE HEADACHES,” EXPERTS ACKNOWLEDGE cluster headaches to be the most painful condition known to medical science. With the suicide rate among sufferers in excess of 20 times the national average, and very limited medical options to treat the disorder, patients desperately seek alternative treatments to "find relief from their life of pain.   In 2002, a group of determined cluster headache advocates armed with............

    Information on the MAPS conference can be found here: http://www.maps.org/conference/

    Edit thanks CHfather.   :-)

    2013 Clusterbusters Conference - Chicago

    in General Board

    Posted

    And another speaker confirmed.

    •  Dr. Larry Schor

    Dr. Schor is an Associate Professor of Psychology at the University of West Georgia and a licensed psychotherapist, who will focus on the psychological aspects of CH.

    Dr. Schor has been a cluster headache patient for more than 25 years.

    He is a Licensed Professional Counselor and Certified Professional Counselor Supervisor in Georgia. His research, teaching, and practice focus on the psychological effects and treatment of trauma. He is particularly interested in states of consciousness associated with trauma and pain; especially alterations in consciousness associated with cluster headaches.

    Dr. Schor is a Disaster Mental Health Counselor and Supervisor for the American Red Cross and was named Georgia Counselor of the Year in 2004. Presently, he is completing development of the website www.georgiadisaster.info which provides comprehensive information for disaster preparedness and response.

    Dr. Schor has recently been involved with SAMSHA, bringing awareness to Cluster Headache and the risks of suicide. SAMSHA Link http://www.samhsa.gov/

    We welcome him back to Chicago for what will be an exciting and highly interactive session.

    2013 Clusterbusters Conference - Chicago

    in General Board

    Posted

    Another exciting presentation added to the line up

    Bruce Sewick, LCPC, RDDP, CADC.  Clinical Supervisor Residential, Crisis and Case Management Programs at Leyden Family Service and Mental Health Center.  Adjunct  at College of DuPage & Wright Community College in Chicago.  

    http://www.brucesewick.com/

    Noted author, teacher and therapist, his interest in mental health started with exploration of altered states of consciousness in the 70's while an undergraduate at the University of Illinois (Chicago). He received a Bachelor's degree in Psychology in 1974 and a graduate degree in Clinical Psychology from Roosevelt University in 1997 and his LCPC licensure in 1999.

    Bruce will be speaking on the safety of psychedelic substances along with past and recent issues in Psychedelic Research.

    His Master's thesis, "Psychedelic-Assisted Psychotherapy for the Terminally Ill" is on-line at: http://www.maps.org/research/sewick.html

    It reflects his compassion about assisting the dying with the anxiety and fear they may be facing.

    He also uses EMDR to help alleviate traumatic symptoms http://www.emdria.org

    Abnormal connections

    in Research & Scientific News

    Posted

    Great article Shocked. Thank you for sharing it.

    "The RS-fMRI data from twelve male CH patients during ‘in attack’ and ‘out of attack’ periods and twelve age- and sex-matched normal controls were analyzed by the region-of-interest -based functional connectivity method using SPM5 software. Abnormal brain functional connectivity of the hypothalamus is present in CH, which is located mainly in the pain system during the spontaneous CH attacks. It extends beyond the pain system during CH attack intervals."

    Interesting study, CH people both in and out of attacks and a control group.

    I wonder how anyone could lay in a fMRI machine during an attack.  Damn tough clusterheads IMO.

    2013 Clusterbusters Conference - Chicago

    in General Board

    Posted

    Speaker Update:  Just confirmed.

    Dr. Larry Robbins - Robbins Headache Clinic   http://www.headachedrugs.com/

    Lawrence Robbins, M.D. is considered to be one of the top 10 experts in the country on management of headache medications and he also discusses non-medication strategies, as well as alternative treatments.

    He has authored 3 books, the first 2 being "Headache Help" and "Management of Headache and Headache Medications"  Both have been very well reviewed and are bestsellers and are available online or in bookstores.

    His third is the newly release E-Book: "Headache 2013: A Comprehensive Guide to Headache Treatment, Including Advanced Approaches for When Nothing Has Helped" which is available online with links from his website:  http://www.chicagoheadacheclinic.com/ebook.html

    Dr. Robbins has his practice in Northbrook, Illinois. The Robbins Headache Clinic has a reputation as being one of the top places in the United States to go for help with headaches.  He has been elected to "America's Top Doctors" for each year since 2001. He was also named as one of Chicago's Top Doctors by Chicago Magazine.  Dr. Robbins received the Clinical Pain Management Award from the AAPM in 2008, given to the physician who "...has made a significant accomplishment in research and/or teaching in the field of interdisciplinary pain management." Only one physician in the United States receives this annual award.

    This will be the third time Dr. Robbins has attended the Clusterbuster conferences and this year he will lead a open format Q&A session "Ask the Doc - Your Questions On The Clinical Aspects Of Cluster Headache".   This promises to be an exciting and informative session.

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