Dallas Denny

Lol @jon019.....yuppers. that damned old anecdotal evidence saved my freakin bacon.....damn proud I didn't have to wait for completion of the Yale psilocybin trials to get on board!! DD

G'evenin MRUPE! Batch, who came up with the vitamin D3 regimen, is an old Vietnam era Navy fighter pilot, and a fellow clusterhead with a chemistry degree!! You're correct in that there are no double blind trials, however, Batch has been collecting survey data from the many clusterheads who've had tremendous success with the protocol since he came up with the it almost 10 years ago.....that data shows a efficacy of around 75%! I couldn't begin to tell you how it works but I've listened to Batch speak at our yearly patient conference and I can tell you that there's a sound reason for each of the co factors and that they all work in correlation with each other. Dallas Denny

Clusterbusters Has Exciting News for 2020 Dear friends, For nearly 20 years, Bob Wold has managed Clusterbusters as a volunteer. He takes our desperate calls in the middle of the night, answers emails, travels, organizes, and sacrifices time with his family in order to ensure that every person living with cluster headache has the best life possible. His efforts in education, driving research, and support are unprecedented and unparalleled. In addition, Bob has held a regular job to help support his family. He does all of this, likely working 80 or more hours a week in total, with so much kindness and without complaint. He also lives with the same crippling disease that we are fighting to eradicate. We are living in a special time in the headache community. More attention is being given to research and to our disease. We have received tremendous support from the research community and even more amazing support from our own patient community. It is time for Clusterbusters to make a change. We have a growth opportunity, but we need to focus. Consequently, Clusterbusters is proud to announce that we have asked for and received Bob's resignation from our board of directors. He is no longer our president. Instead, we have hired him as our Executive Director. He will now work under the direction of the Board of Directors full time to carry out the mission and vision of Clusterbusters that he developed in the early part of the 2000s. As the position of President of the Board has been vacated, I have been asked to serve as the President and I have accepted this position. I am so proud to be able to continue to serve this community that has given me so much. Thank you all for your support. As you may know, we have added Ainslie Course to our Board of Directors. We are excited to include her as this will help us to grow and expand our reach. Thank you, Ainslie, for adding your talents and light to our community. We will be continuing to grow our amazing organization. We are so proud of Bob Wold, those who came before us, and all of the accomplishments of Clusterbusters, and we are looking forward to helping to shape a better future for everyone living with cluster headache. Sincerely, Eileen Brewer President Clusterbusters Connect with us ‌ ‌ ‌ Clusterbusters | P.O. Box 574, Lombard, IL 60148 Unsubscribe dennispohlenz@yahoo.com Update Profile | About Constant Contact Sent by eileen@clusterbusters.org in collaboration with

"We're all just walking each other home"...Ram Dass Rest in peace just doesn't seem appropriate so I'll just say safe travels and happy trails.....and Thank you!! DD

https://drive.google.com/drive/folders/1LIQTMO8yOudikkmJ1Wpi0GoEjn9Y5e_D?usp=sharing_eil&ts=5dac9336

Sorry to report that we have lost yet another clusterhead sister who opted for suicide as a solution to escape the pain!! Marie is from France and leaves behind two young children and her husband! We have lost soooo many to this hideous affliction in the past few months!! DD

Good that you have a firm diagnosis Bass! Even better that you're getting an O2 rig together....high flow oxygen be it medical or welding is a clusterheads lifesaver!! The Clustero2kit that you have on order is the Cadillac!! But, to be completely honest, I'm not sure how you'd go about sourcing a standard non rebreather mask from a local supplier without a script for O2.....you might inquire at a durable medical goods supplier. Hopefully someone else with experience will be able to direct you on this matter! Good luck! Dallas Denny

Congratulations on your long "REMISSION"!! But, I have to agree with Chf and BOF....there is no "CURE" for ch to date and your post is highly suspect by saying you're cured and then not elaborating.....but then again, it would be hard for you to elaborate since a "cure" doesn't exist!! DD

Welcome back Brian! DD

@CHfather. I found the old clustercluster.com site in 2007 by clicking the "clusterbusters" in the old ch dot com navigation bar.....it was strictly a website then with all of the info that's in Tommy D's files and there was one of those password protected "Yahoo groups" for discussion......I know the vast majority of us who joined this forum when it went live came from DJ's board because the launch was announced there so have no idea how we would have found this place thru a search back then!! Bless you DJ! Dallas Denny

I'm going to go ahead and post this a few days early as I may not have the time this weekend! This board went live on October 27th in 2009! I joined that day so it will also mark 10 years of active membership here for me as well!! We all owe a deep debt of gratitude to DJ for helping with getting the original yabb powered board up and running!! I can honestly say that being a part of clusterbusters this past 10 years has been by far the most rewarding experience of my life!! DD

Hot damn Brian!! That is some OUTSTANDING FECKING NEWS dude!! When do you arrive in Big D? I'm leaving okieland early Weds morning for my 88 mile journey to Grapevine....all but the first 5 miles of gravel county road is major freeway and tollway driving and I don't even have to go thru the Metromess to get there!! Wooo Hoooo! Almost (but not quite) makes me feel guilty for saying that...lol.....I have two longtime clusterhead friends coming.....Lady A left Scotland for Germany this morning to hook up with Hans and fly on to Dallas.....she's already in the air and they won't get to Big D til early tomorrow!! Yeah, maybe I do feel a little guity!! Stopping along the way to pick up a case of Colorado Koolaid longnecks to go with that pizza!! Safe travels my friend and see ya soon!! DD

G'mornin Clovis! The regulator you have is insufficient for most clusterheads!! When I tried O2 for the 1st time it was with an 8 lpm reg and it wasn't effective! Most of us need a minimum of 15 lpm and many folks use 25 lpm regs. DD

Hey 8! I know several chronics that are having very good results with ketamine nasal spray. From my experiences with the VA that would probably be a hard sell with any of their docs though! When I still relied on the VA for medical treatment they let me have 9 imitrex dose packs per month....are they only giving you the imitrex pills? DD

Welcome to the community Willy!! Sorry you had the need to join us! Good to see that you have O2!! I'd suggest that you clue your doc in on the sumatriptin (imitrex).......for the vast majority of clusterheads the pills just don't work fast enough.....the imitrex nasal sprays work a bit better, but if you have to resort to the use of trex, the best option by far is injections. The best thing you can do in my opinion is read up on the anti inflammatory vitamin D3 regimen in our files section......you can start on it immediately once you have acquired all of the co factors but you will need to have some bloodwork done to establish your baseline levels.......we've watched this regimen work in folks life with ch for closing in on 10 years.....works well for about 75 to 80% of folks to either reduce the frequency and intensity of their hits or become painfree!! The originator of the regimen, Batch, is active on the forum so ask any questions you might have and someone will have an answer! The last option is busting and you'll also find extensive info on that in the clusterbusters files or the share your busting stories section of the forum. Dallas Denny

@Freud Yup, will touch on important points of PF Tek, coir/verm substrate Tek, substrate pasteurization process, dub tub Tek using BRF cakes spawned to coir substrate, growing LC in karo/water via MS inoculation, and drying and storage procedures without using a dehydrator......a lot to try and cover in an hour and a half so I'll probably have to do a separate question and answer session sometime on Saturday if it can be worked in.....I'll be getting to Dallas mid morning on Weds so I can get everything prepped and set up

I'm honored to have the opportunity to share my knowledge and experience during 2 "grow demos" as part of this years conference agenda! I've been working on a PDF file documenting all of the Teks and processes that I'll be presenting for several months now and will be putting the finishing touches on it this next week! I've done it all on my Samsung Note and am too technically challenged to figure out how to transfer it to my laptop in PDF format....but our conference chairwoman has assured me that she'll "git r done" for me when I get to Dallas the day before the conference begins. All that to say this.....if you're planning to attend the conference and want to get the PDF, be sure to bring a thumb drive with you......the doc contains a lot of pics and is extremely large so I feel like that will be the easiest, fastest way to distribute it! See ya'll soon!! Dallas Denny

@BKP Exactly why I never use the term "headache" outside the confines of these online support forums or in the company of another clusterhead! I have a neurological disorder called Trigeminal autonomic cephalalgia which causes extremely painful head and facial pain. And, I also use the brain freeze analogy when describing the pain to a non clusterhead! DD

Yes, unfortunately I did Jerry! TBH, my take from the whole deal was it was more about "bruised egos" than anything else! Having met him, I was really quite fond of John and have the utmost respect for doc Sewell so I didn't take sides but was incredibly sorry to see dedicated cluster advocates at such odds with one another! Dallas Denny

@BKP I just recieved a T shirt that I ordered from Amazon for the conference next month....sez "Yeah, sex is cool but have you ever felt the Beast leaving after a bad attack?" DD

G'mornin Jack! Thank you so much for your interest and desire to be of assistance to the clusterhead community! Glad to see that you're in contact with our fearless leader and my personal hero! I had the pleasure of meeting and visiting with Doc Halpern at our annual patient conference in Portland in 2010! The thing that struck me most during those conversations was his compassion and desire to help all cluster headache patients....but he said he was driven most by the thought of sufferers in developing countries who had limited access to health care and medicine, no access to the internet.....folks who were destined to live their lives in agony with no chance of relief! As a man in his late 30's and early 40's, I lived that life for 7 years....reduced to rolling around on the floor at times, crying like a baby, begging my wife to blow my head off, enduring the exquisite pain that is clusters for an hour or more with each attack, and experiencing 4 or 5 individual attacks in a 24 hour time period!! Not a pretty picture and I'm so grateful that I found clusterbusters and alt meds......clusters now are more like an annoying inconvenience for me....and, because I have this affliction, I've been blessed to meet and become friends with some of the kindest, most compassionate and caring folks on this planet!! As to the efficacy of the CGRP meds like Emgality and Aimovig.....Eli Lilly has been a conference sponsor for several years so we've had a front row seat throughout the development and trials of Emgality......from what I've observed thus far in the online clusterhead support communities it is much like most other pharma meds for ch....works extremely well for some and poorly or not at all for others......but, it's progress and we'll take all of that we can get! Onward!! Dallas Denny

Welcome to the community sammers! If you're in the US getting O2 and getting insurance to pay for it can be a real PITA! I'm on Medicare and they won't cover it for clusters....so, I bought a large cylinder of welding oxygen, a welding oxygen regulator, and the Clustero2kit mask and set up my own rig....cost me about $375 and refills/exchange runs $23. O2 is a clusterheads best friend! Rules and regulations vary in other parts of the world.....very easy in some and hard in others! Dallas Denny

G'mornin Jack and welcome to our community! My, my...you did resurrect an old thread....it was started just a few months after our 4th annual patient conference in Portland in 2010...Bol-148 was the major topic and we were all very excited!! Funding never came thru however and the compound is rarely discussed anymore! I will message our founder and President, Mr Bob Wold and make him aware of your comment....curious as to the reason that CH has become personal to you? Dallas Denny