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2009 Clusterbuster Conference report

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Here is the report on this years conference for all of you that couldn't make it.

Thanks very much to Marsha W. for all the note taking and to Nell Cox and Sandi S. for helping put this report together.

4th Annual ClusterBuster Conference

September 18-20, 2009

Chicago, Illinois

Sponsored by ClusterBusters, Life Gas

and the University of West Georgia

2009 ClusterBusters Conference Report

September 18 – 20, 2009

Chicago, Illinois

Saturday, September 19, 2009

Dr. Doug Wright:

Doug Wright, conference chairperson, opened the conference on Saturday morning.  After a brief overview of the agenda and reviewing the location of the oxygen tanks, Doug then gave a short description of CH and advised the newcomers and non-headache people what they might see during the weekend should someone experience an attack during the day. 

Next was a quick mention of the soon to be released ClusterBuster message board, which can now be found at:   http://clusterbusters.clusterheadaches.com/

Bob Wold:

The first speaker of the day was Bob Wold, the founder and President of ClusterBusters.  Bob almost didnÂ’t make it to this yearÂ’s conference with some health issues, so an enthusiastic crowd welcomed him.

Bob gave a heartfelt summary of his early years dealing with Cluster Headache, the 4-year delay in diagnosis before attending the Diamond Headache Clinic and being properly diagnosed with CH.  Of note, one of the speakers later in the day is Dr. Fred Freitag who is now the Co-Director of the Diamond Headache Clinic in Chicago. 

Bob then talked about going from episodic CH to chronic and later back to episodic.   He recalled some of the endless trials of 75 medications he had taken for his CH over the next 20-years.  This was a tale many in the audience could relate to, evident by the nodding heads seen throughout the crowd.

While considering invasive surgical techniques to deal with his pain, he one day found ch.com on the web and soon conversed with 2 men that would change his life and that of so many others with CH, 2 people on the site named Flash and Pink Shark Mark.  Through these people he learned that using low-doses of magic mushrooms could end the pain of CH, it had for some and might for others.

Soon after, ClusterBusters was born. 

From there progress was made, information was collected, gathered, sorted and compiled, theories and ideas were developed and ClusterBusters began its mission: “Our mission is to investigate indole-ring entheogens as possibly the most effective treatment yet found for cluster headaches, and to educate physicians, medical researchers, sufferers, and the public on the efficacy, advantages and disadvantages of this, and other treatments”.

Later with the guidance of DrsÂ’ Sewell and Halpern, the first article on treating CH with low-dose hallucinogens would be presented at the National Headache Foundation Research Summit and eventually lead to publication in the journal Neurology.  Later many other journals and papers would pick up the story from Clusterbusters.  The word spread slowly and the reports kept coming in of countless successes using this treatment.

Bob then touched on the newest avenue of approach; a small treatment study using a non-hallucinogenic compound called bromo-LSD (BOL) that was being conducted in Hanover Germany.  Recent, yet unpublished results were very promising and exciting.  Dr. Halpern would be speaking on this topic in greater detail later in the conference.

Dr. John Halpern:

Dr. Halpern is Board Certified in General Psychiatry, teaches on addiction psychiatry within various HMS-affiliated training programs, and is also the Associate Director of Substance Abuse Research of McLean's Biological Psychiatry Laboratory. He has direct clinical research experience administering controlled substances, including now leading MDMA-assisted experimental psychotherapy sessions for patients with severe anxiety related to advanced-stage cancer diagnosis. Dr. Halpern has been working closely with Clusterbusters for 4 years plus now and this collaboration has led to the first publication on the use of psilocybin and LSD for CH, the first cluster headache specific headache diary (available for free at the home page of Clusterbusters), and the discovery of Bromo-LSD (BOL) as a potential non-hallucinogenic treatment of CH.

Dr. John Halpern provided an update on the study that he is in the process of submitting to Harvard/McLean for approval.  The study proposes including 5 episodic Cluster Headache patients from the Boston area who typically have two cycles per year. Sub-hallucinogenic injections will be used on day 0, day 5, and day 10 on subjects who have been recently identified to be in cycle. There will also be an increase in dosage level on each treatment day: day 0 - one dose; day 5- two doses; and day 10- three doses.  Dr. Halpern is hopeful that if this study shows treatment efficacy a larger randomized study will follow.

Dr. Larry Schor:

Larry Schor is a psychology professor at the University of West Georgia and a licensed professional counselor. He is also a cluster headache patient. In addition to being involved in the training of psychotherapists, Dr. Schor has been a Disaster Mental Health counselor with the American Red Cross since 1997 and has published numerous articles about working with trauma. His latest project, www.georgiadisaster.info is the official disaster mental health website for the State of Georgia.

Dr SchorÂ’s presentation discussed the psychological and emotion impact Cluster Headaches can have on the patients and their families. Dr. Schor pointed out that Cluster Headache is, perhaps, the only non life threatening condition in which people with no underlying clinical depression have been known to kill themselves simply to stop the pain.

Moreover, Cluster Headache patients may be reluctant to seek psychological counseling and support fearing mental health professionals may not understand the feelings of despair and consequent behavior associated with their condition.

Dr. Schor also led a group discussion in the evening aimed at identifying psychotherapeutic interventions that may be helpful for Cluster Headache patients and their families. The session was well received by all those who participated.  Dr. Schor hopes to develop a clinicianÂ’s guide to understanding cluster headache patients.

Dr. Frederick Freitag:

The next speaker was Dr. Frederick G. Freitag who is a co-director of the Diamond Headache Clinic in Chicago as well as Clinical Assistant Professor in Family Medicine at Rosalind Franklin University, Clinical Instructor of Family Medicine at Midwestern University and Clinical Lecturer in Neurology at Loyola University. http://diamondheadache.com/

Dr Freitag provided an overview of Cluster Headaches as summarized below:

Cluster Headaches were first described in the literature by Gerhard van Swieten in 1745.  Cluster Headaches age of onset is typically in the late 20Â’s primarily in males but the female incidence is increasing.  The cluster cycles typically involve 1 to 2 cycles per year, lasting 2-3 months.  The remission periods usually last 2 years, but remission periods of two months to 20 years also have been reported. The youngest diagnosed has been reported at 1 year of age and the oldest sufferer 80+ years.

Cluster Headaches involve circadian and circannual features.  The two most common periods on onset are 2 weeks plus/minus the summer and winter solstices.  Attacks typically occur on a circadian basis, often at night and near the end of a sleep cycle.

Women and Cluster Headache: Women have a higher coexistence of cluster and migraine, have an earlier age of onset 27 vs. 30 in men, have a higher mean age of onset of chronic cluster compared to men and have more migrainous symptoms than men, e.g. nausea and vomiting.

Chronic cluster headache is distinguished from episodic by the following factors: loss of circannual features; no period greater than 2 weeks cluster free; loss of circadian patterns; higher frequency of attacks; and resistance to common therapies.

Dr Freitag suggested some self-help approaches to possibly lessen the number of attacks while in cycle: decrease tobacco to ½ a pack or less, avoid alcohol, increase aerobic exercise and to stay up all night.

Common abortive agents used to treat cluster headaches include oxygen, Sumatriptan, Dihydroergotamine mesylate, Zomatriptan, Ergotamine tartrate, lidocaine, and 5-10% cocaine solution.

Preventative treatments used to for cluster headaches include cyproheptadine, lithium carbonate, verapamil Nimodipine, Divalproex sodium, topiramate, and Indomethacin. Other miscellaneous treatment include Melatonin, Greater Occipital nerve blocks, Botox, Clonidine, Tizanidine, Baclofen, Methylphenidate, and Histamine.

Cluster headaches are one type of trigeminal autonomic cephalalgias (TACÂ’s).  TACÂ’s involve strictly unilateral pain near the eye or temple, prominent cranial parasympathetic autonomic features, specific patterns in the timing of the attacks and the TAC subtypes differ in duration of attacks, frequency of attacks and response to treatment.

Other types of TACÂ’s include:

Paroxysmal Hemicrania: This headache is characterized by frequent strictly unilateral periorbital/temporal pain, autonomic features, shorter lasting headaches 2-30 minutes, increased frequency more than 5 a day, is more common in women, no predilection for nocturnal attacks and absolute responsiveness to indomethacin.

SUNCT: This type of headache is characterized by attacks of unilateral short lasting pain orbital or periorbital.  The pain is described as burning, stabbing and much briefer than those seen in any other TAC (seconds).  It is often accompanied by prominent lacrimation and redness of the ipsilateral eye.  The typical age of onset is 40-70 years.

Hemicrania continua: This headache is a strictly lateral continuous headache of moderate intensity with superimposed exacerbations of severe intensity.  Trigeminal autonomic feature are present as well as eyelid swelling or twitching.  It is predominantly in females and has absolute responsiveness to Indomethacin.

Hypnic headaches:  These are characterized by being woken from a sound sleep, occurring at the same time each night, usually only one attack per night, no autonomic symptoms and the pain is not as severe as cluster headaches.  The treatment is caffeine (50 to 100 mg qhs) and 150 mg of Lithium at 7 PM.

Nani

After a busy morning of speakers and presentation, lunch was served in the room.  Over the lunch hour an auction was held, led by our own Nani (naaaa-neee).

She did an amazing job of raising money through the auctioning of many wonderful gifts and items.

ClusterBusters cannot begin to thank the many people that contributed items to the auction, there were so many and their generosity to us is outstanding.  Remember, that all money raised through the auction and at ClusterBusters goes to helping in research and development of the treatment of cluster headache.

Please remember that Clusterbusters Inc. is a IRS-approved 501 © (3) non-profit research and educational organization. Our operations and the eventual scope of our work depends completely upon donations. If you would like to help, your tax deductible donations are not only appreciated, but essential in meeting our mission.

Donations can be made online at the website,   www.clusterbusters.com

There is also a link on the new message board at Error! Hyperlink reference not valid.

Bruce Sewick:

The next speaker on the Saturday afternoon was Mr. Bruce Sewick, LCPC, RDDP, CADC

Bruce is a 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.  For more information on Mr. Sewick, please visit his website    http://www.brucesewick.com/

His presentation was titled Psychedelic Medicine: Chemical Input, Therapeutic Output.

Over the next hour in a unique combination of factual presentation and humor, he delivered an educational and informative review of how psychedelic “drugs” went from being a viable medicinal treatment of many conditions to their current status as a class I drug, “of no medicinal value” and on to recent efforts and studies looking into these medications once again.

His presentation began with a historical perspective of how politics influenced the drug laws and carefully examined the obvious discrepancy between the facts as they are/were known and the public misrepresentations, misconceptions and misperceptions that followed. 

Bruce explained that many of the early studies involving psychedelic drugs involved conditions that until then were deemed untreatable or at the least, poorly treated.   He took the audience through several of these early experiments and trials. 

Where once psychedelic research was extensive and full of potential, the medical benefits of their use became entangle in the counterculture movement of the 1960Â’s and soon all research was halted when the governments withdrew any and all support and funding for research in this area.

However, in the last 10 years there has been many well designed clinical studies in the use of psychedelic compounds and much of this recent work confirms what was known to scientists long ago, that there may be significant therapeutic benefit in the proper use of these “drugs”.   

Bruce discussed several of the clinical trials now being conducted around the world; these offer promise once again in the treatment of in the treatment of anxiety around dying, addictions and some intractable conditions.

Dr. Tom Roberts

Thomas B. Roberts (Ph.D. Stanford) investigates psychedelic mind body states for the leads they provide for learning, cognition, intelligence, creativity, mental health, and abilities that reside in them. In Psychedelic Horizons: Snow White, Immune System, Multistate Mind, and Enlarging Education he presents multistate mind theory. He specializes in psychedelics' entheogenic (spiritual) uses: as in Psychoactive Sacramentals: Essays on Entheogens and Religion and the online archive Religion and Psychoactive Sacraments http://www.csp.org/chrestomathy. He co-edited Psychedelic Medicine: New Evidence for Hallucinogenic Substances as Treatments. He has taught Foundations of Psychedelic Studies at Northern Illinois University since 1981; this is the world's first catalog-listed psychedelics course at a university. He has lectured on psychedelics internationally, published many articles, chapters, and book reviews. He originated the celebration Bicycle Day.

His website is: http://www.cedu.niu.edu/lepf/edpsych/faculty/roberts/index_roberts1.html

Dr. Tom RobertsÂ’ presentation was: Beyond Medicine: Psychedelic Enhancement of Cognition, Values, and Religion

Dr. RobertsÂ’  presentation discussed the following: that when used with screening, preparation, and careful controls, psychedelics offer ways to increase intelligence by solving practical problems and adding new programs to our cognitive repertoire, thus expanding mental self-management (intelligence). Experimental studies show that they also provide a next step for religion by democratizing mystical and intense spiritual experiences, often giving a sense of meaningfulness.

Dr Larry Robbins:

Dr. Larry Robbins was the next speaker on the agenda.  Lawrence Robbins, M.D. is considered to be one of the top experts in the country on management of headache medications.  Robbins Headache Clinic is located in Northbrook, Illinois and Dr. Robbins is also an Assistant Professor of Neurology at Rush Medical College.  His website is www.headachedrugs.com

Dr. Robbins presentation was on Treatment of Refractory Cluster Headache. This is a poorly understood aspect of CH, the cases that seem to be unresponsive to any treatment.  He explained that management of these cases is difficult as the patient has usually tried many treatment options with limited or no success, resulting in extreme frustration and sometimes a total loss of hope.  His presentation was interesting in explaining his approach to treating those patients that have not responded to other means.

Dr Robbins began his presentation with a discussion of Refractory Chronic Migraine.  This diagnosis is determined if the following are present: diagnosis of Chronic Migraine; headaches must decrease quality of life and patient functioning; failed trials of two or more classes of preventative; and failed abortives: triptans, DHE, NSAIDs, and analgesics. Patients must have worked on triggers and lifestyle changes.

Psychiatric and personality disorders in combination with headaches greatly influence the treatment plan and may guide selection of the medication.  The prevalence of personality disorders is increased among pain and psychiatric patients.

Dr. Robbins also reviewed the common preventative drugs for treatment of Cluster Headaches, the use of opioids for those with refractory clusters, the use of stimulants in addition to the opioids, and surgical procedures (occipital stimulation, radiofrequency rhizotomy, gamma knife radiation, and hypothalamic stimulation) sometimes performed for refractory clusters.

Dr. Robbins ended his presentation with some good news for some in the audience.  Long term studies have shown that as the length of time a patient has had clusters increases, remissions become more likely.

Sunday, September 20, 2009

Dr. John Halpern

Dr. Halpern is Board Certified in General Psychiatry, teaches on addiction psychiatry within various HMS-affiliated training programs, and is also the Associate Director of Substance Abuse Research of McLean's Biological Psychiatry Laboratory. He has direct clinical research experience administering controlled substances, including now leading MDMA-assisted experimental psychotherapy sessions for patients with severe anxiety related to advanced-stage cancer diagnosis. Dr. Halpern has been working closely with Clusterbusters for 4 years plus now and this collaboration has led to the first publication on the use of psilocybin and LSD for CH, the first cluster headache specific headache diary (available for free at the home page of Clusterbusters), and the discovery of Bromo-LSD (BOL) as a potential non-hallucinogenic treatment of CH.

Dr. Halpern discussed the case series completed in Hanover Germany using Bromo-LSD (BOL) to treat 5 patients with Cluster Headaches. 

One patient (S2) with episodic cluster headache, who was in an active attack period, and four patients with the chronic form participated. All but one patient (S1) had symptoms for more than 10 years. Patient S2Â’s cluster period terminated after BOL with a long-lasting remission period of six months (at last follow-up) and continuing. Patients S3 and S5 reported pronounced reduction of attack frequency, including full remission for more than 1 month indicating transition from a chronic to an episodic form. Cluster attacks resumed after a 2 month remission for patient S5. In 9 months since BOL treatment, patient S3 describes ongoing remission of cluster period, reporting only a few solitary sporadic attacks. Patient S4 reported a profound reduction in attack frequency, though without 1 full month of remission and attack frequency increasing approximately 6 months after BOL treatment. In addition, patients S3 and S4 found the pain intensity of remaining occasional attacks so improved that they no longer administered an acute intervention as they had prior to BOL. Although patient S1 did not experience pronounced attack reduction similar to the other 4 patients, he indicated a decrease of attack intensity of about 30% within the first 4 months. It is likely relevant that patient S1 continued to drink alcohol (contrary to advice), a known and common trigger for attacks.

The result of this small case study appears very promising as a possible new drug for treatment of Cluster Headaches.  Dr. Halpern hopes to have the results published in a medical journal and larger studies to follow.

Growing Edible Mushrooms for your Kitchen:

The last session for the conference was presented by two cluster busters who have proven successful methods for growing edible mushrooms for your kitchen.  Each presented their own unique method for growing mushrooms at home and the audience was clearly impressed with their methods and the pictures providing proof of their successful mushroom harvest.

Bob Wold:

Bob Wold provided the closing statements for the conference.  He thanked each of the presenters for their contribution in making this conference a big success.  He also expressed his gratitude to Doug Wright and Sherri Lynn for organizing the conference and for keeping the conference running smoothly over the weekend. Bob also thanked the rest of the conference attendees, over the course of the weekend there were approximately 80 people in attendance, those with Cluster Headaches, supporters, university students and medical professionals. Last, Bob announced that the next Cluster Buster Conference would be held in Portland, Oregon in 2010, an exact date to be determined.

Notes provided by Marsha Weil with thanks to Nell Cox and Sandi Suddaby for their help.

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Dr. Robbins also reviewed the common preventative drugs for treatment of Cluster Headaches, the use of opioids for those with refractory clusters, the use of stimulants in addition to the opioids, and surgical procedures (occipital stimulation, radiofrequency rhizotomy, gamma knife radiation, and hypothalamic stimulation) sometimes performed for refractory clusters.

This is something that Dr. Finkel of the Carolina Headache Institute is using on a group of headache sufferers, althogh his initial focus was on soldiers at Ft. Bragg that suffered TBI's (traumatic brain injuries) from post concussive blasts, and now exhibit headaches that 'mimic' CH, yet fulfill the IHC criteria, and has been quite successful.  He's expanded this use into his practice, and I am one of the patients that he is trying this treatment with, and I must say, so far so good as far as helping to get to a 'stable' brain chemistry allowing other possible treatment options to help.

I had dosed prior to my appt. with him, so it's hard to say which was the beneficial factor, but after a month of treatment, things are still going quite well and there is a great deal of hope that I have found someone who is willing to go outside the mainstream to find a solution.

Cat

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I had dosed prior to my appt. with him, so it's hard to say which was the beneficial factor, but after a month of treatment, things are still going quite well

Great to hear Cat.

:)

Bob

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Tall, Hazel eyes, Deep vertical head creaseÂ’s, Ruddy complexion, Full head of hair and Lion and the lamb syndrome!

Interview with Dr. G. Freitag, Associate Director of the Diamond Headache Clinic,

"Cluster Headache Often Mistaken for Nasal, Sinus, or Ocular Condition"

February 18-22, 2008

At the Headache Research Summit presented by the Diamond Headache Clinical Research and Education Foundation

Scottsdale, Arizona, USA.

http://tinyurl.com/ybz2q3d (youtube)

He mentions a “facial thingy”, anyone know what it is?

Shocked

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Hi there, Cat.  I'm in Durham, and saw Dr. Finkel YEARS ago for migraines.  It sounds as if I might want to re-connect with him....

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