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Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters

Good Evening Everyone. This is my first post here. Thanks largely to the information here I finally have oxygen therapy. It was a long road getting here and it truly amazes me how effective it is. I am now looking at upgrading to a demand valve like the Allied Healthcare Products L063. My question is should I get the 0-40lpm or 0-160lpm model? Does the 40lpm model have high enough of a flow rate to keep up with the breathing technique? Thank you in advance!

Andrew, Though you may have your heart set on the mm as therapy, I have had success for long periods of time, (up to 2 years at a time) of putting the dreaded CH into 'remission' with prescribed medication from a neurologist. The therapy included Verapamil (calcium channel blocker) and oral steroids such as Prednisone ( anti-inflammatory) used TOGETHER, as prescribed!! The simplist fix of all was Oxygen deliver in the purest form from a canister with a proper regulator and NOT a concentrator. The problem with this, is that it is temporary, but almost IMMEDIATE. I wish you the best with everything, find what works for you, there is a combination for you.

The D3 regimen is described in the ClusterBuster Files section in some detail. I see that the switch to the new board has messed up some of the formatting, but I think it's still readable. Here are the ingredients (hope the formatting holds when I post it). If you are taking verapamil, take it 6-8 hours apart from when you take the calcium supplements. Read more here: http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people Supplement Dose Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL) Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) Calcium * 220 to 500 mg/day Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) Vitamin A (Retinol) * 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose) Vitamin B 50 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient Zinc * 10 mg/day Boron * 1 mg/day minimum, 3 mg/day optimum Regarding detox, you can read about it, with some inaccuracies, at the file called "Playing Well Together" in the ClusterBuster Files section. Because there are some inaccuracies there, I would suggest that you post your questions in the "Share Your Busting Stories" section of the board. Many people can help you if you describe all meds you are now taking. In essence, you want to be off most pharma meds, particularly sumatriptans, for five days. Verapamil at lower levels doesn't seem to block busting. About other things, such as steroids or topirimate, I think there are still open questions.

Don't Miss the 12th Clusterbusters Conference!! This year's conference will start with registration and the President's Cocktail Reception on Thursday, September 14, 2017 at 5:30 PM. The speakers and presentations will follow beginning at 9am on Friday and continue to Saturday at 6pm. A farewell dinner will follow. Registration link: http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07edp1qq7m9f077a1c

There is nothing magic about this concoction. It consists of three very commonly used medications. The steroids: dexamethasone and kenalog are used in all areas of medicine from neonatology to oncology. Rheumatologists and orthopedic surgeons inject these individually or as a mixture into joints every day. The B12 could be controversial just because most studies report no value in folk who are not clinically deficient. At worst it fit into a "no harm" category. Its good that someone like Bostonheadache doc is giving this a try. Clinical impressions from such a quality person will be very valuable. I find the term "Jesus shot" a bit misleading and it gives the injection a mystical connotation. There is nothing magic or spiritual about it and an open minded physician would likely be able to provide it locally if presented a logical rationale. Personally I would reserve the religious phrasing to reflect the experience provided by a bit too high a dose of other substances we discuss. I in no way am being negative about this treatment. Just want folks to understand if it continues to get positive reviews you can get it locally. I doubt most offices can do it for 300.00 though.