Dallas Denny

G'mornin Zipp I been toking for over 50 years and have had clusters going on 35 years......cannabis neither triggers me, nor does it provide any relief......but i use it on a daily basis to relieve/reduce chronic back pain due to several herniated discs and DDD. Dallas Denny

To the tune of sound of silence in the style of Disturbed: Hello Clusters, my ol' friend. You've come to haunt me once again. You rudely wake me when I'm sleeping. My nostril's blocked and my eye's weeping. And the demon that was planted in my brain Still remains. I feel the pound Then shadows. From restless dreams I wake alone With the pain I toss and moan Search thru darkness for the table lamp As I whimper with a cranial cramp When my eye was stabbed in a flash with a red hot knife I cried in fright And felt the pound Then shadows. In the naked fright I'm raw 10,000 attacks, maybe more Doctors assessing without treating Doctors speak without connecting Doctors writing scripts where patients lose their hair And no one cared Of the pound nor shadows And in the next few year's I saw Ten thousand doctors maybe more Doctors hearing without listening Doctors touching without healing Doctors writing scripts, that seemed like living hell And nothing helped Erase the pain, of Clusters.... The unafflicted cannot know The shadows like a cancer grow Hear my screams that I might teach you Feel my pain that I might reach you But my tears like acid raindrops fell And held me in the realm of sorrow But what this devil doesn't know I will fight and I will grow Because those shadows will soon give up and you'll support me until they stop Cause we're all in this together.. no matter what..until it stops. We will continue fighting And I stood and fought and stayed Of the beast I'm not afraid And the beast lashed out his warning Feel the burning and the pain swarming And the beast said your head and your body will be bouncing off the sheetrock walls I kicked his balls And now he feels the pound, and shadows. Composed by several members of the Facebook cluster headache group.....I know, ya just had to sing it right?!?! Dallas Denny

G'afternoon Bearcat I'll add my welcome to the community and sorry you had the need to join the club that nobody wants to belong to!! As CHf has already stated, expand a bit on what you've tried in the past and/or what you're using currently so well have a better idea on what to suggest....to reiterate his comments, your primary objective should be O2 and the D3 regimen!! I'm going to move your thread to the "General" section of the forum where it will get more attention as they tend to get buried and missed here in the files section!! Dallas Denny

G'mornin folks! Many good points and concerns Chf....AND....I totally understand your frustrations!!! Unfortunately, in my opinion.....and it makes me incredibly sad at times........the passage of time and advances in technology, the advent and popularity of social media and the manner in which it has become an integral part of so many folks fast paced lives, and the inherent fact that social media is such a dynamic platform for a support group versus an "old school" static message board or forum like ours! And it's not just us, our sister site ch.com has suffered the same decline in both newbies and active supporter/posters although I would imagine their active membership is larger than ours as it always has been. I know BobW had hoped that the board upgrade would help drive folks back from social media.....I have made personal plea's toward that goal but they've unfortunately been met by deaf ears for the most part......not bitching or pointing fingers in any way, just stating the facts as I see them....it's just the way of the world we live in today I reckon ya'll!! But, we are still quite relevant in my opinion.......we do still see a few new folks, particularly around the season changes and conference time....we do still see old familiar faces check in from time to time........and many, many folks in the Facebook groups that got to clusterbusters first, and who love clusterbusters and testify about it having saved their lives, post links on a very regular basis to our files!! For the most part though, they're no longer active here and quite possibly have no idea that they're linking to hard to read, corrupted files, full of broken links. So, I've been in contact with BobW and Jeff this week about the files issues and have taken on the task of editing all of the "Busting Files" to remove the place holder corruption from the upgrade and replacing all of the old yabb links to other internal files.........that process will begin in the next few days (gotta go buy a new laptop first).....its not going to be an overnight fix but we're going to attempt to get the issue addressed as soon as possible ya'll!! Along with that, let's continue this conversation here in regards to the thread topic, come up with a concensus outline of what the content needs to be, and I'll submit those ideas to Bob for his input! My heartfelt thanks and appreciation to all ya'll still manning the ship and being here to support those clusterheads who do find their way here! Much love and respect to all! Dallas Denny

Hi MG! Great idea but there is one small issue! One of our duties as moderators is to keep content referring directly to busting and busting substances moved to the secure sections of the forum!! Bob's Pocket guide is pinned in the "Busting Files" for that same reason! Perhaps delete that last paragraph and install a link to the pocket guide in its place! DD

Welcome to the community Primrose! I've had clusters for 30 plus years and personally know many, many clusterheads and have only met 2 for who oxygen didn't work!! We see many here who make that statement but it's usually due to inadequate equipment and/or ineffective breathing technique! Like yourself, I can't tolerate breathing it thru my nose, in fact, I can't tolerate anything touching my face during a hit so I use the mouthpiece that comes with the optiO2mask. I stand facing my large O2 cylinder and forcefully exhale and then do a mini crunch to force the last bit of air from my lungs....using the mouthpiece I inhale as much O2 as I can and hold it while the ambubag refills....repeat the exhale cycle.....I typically abort attacks in 5 to 8 minutes!! Dallas Denny

Hi MG! Good grief girl....sounds like you've been experiencing some that "just when you think you're cookin you find out you're sticking to the freakin pan" Positive thoughts sent from this side of the pond to both you and your friend!! DD

G'evenin SP Sadly, Dr Mike passed a few weeks ago but he did pass his protocol on to his associate....not positive but I believe his name is Dr Rick.....you can reach doc Mike's clinic at: Dr Mike Lonergan Weatherford, Okla 541-359-6468- Mary will answer Dallas Denny

G'evenin Rose! 15 minutes isn't bad for an abort time but it can work quicker....I typically abort in 5 to 8 minutes. My technique is standing by my tank....I exhale forcefully when the bag is full (I use the mouthpiece that comes with the optiO2mask as I can't tolerate anything touching my face during a hit), and then I do a mini crunch to force as much air as possible out of my lungs and then suck as much O2 as possible....hold while the bag refills and repeat. Dallas Denny

Welcome to the community CH but sorry you had the need to join us! First order of priority with clusters is to either get a script for hi flow oxygen from your doc or set up your own rig with welding oxygen.. Second, look into the vitamin D3 regimen in in clusterbusters files section of the board.......you need to in incorporate all of the regimen for it to work properly.....you can begin immediately but you'll need to have a 25 (OH)D blood test ran soon to find out what your level is Third will be the info on "busting", info is also available in the clusterbuster files section Dallas Denny

Next year's conference will be in my old home state of Colorado!! Mile high city here we come!!! Dallas Denny

G'mornin Steve! I've been huffing weld ox for around 8 years and haven't run into any issues other than the "schlepping" that Chf mentioned.....my tank is approximately 4' tall and 9" diameter and very heavy.....but, as a result of busting, I routinely abort hits in 5 to 8 minutes so even in high cycle a tank full lasts me for quite awhile.....my last cycle was close to 6 months and I used a little less than 3 tanks full ($60)......just make sure you don't let your supplier know you're going to be breathing it! I personally know many clusterheads who use welding oxygen, many for much longer than me and I've never heard of anyone having any issues! Dallas Denny

Hi Chf Several have been able to pass along info to Dr McGeeney and he is now administering his version of the protocol......and, he has trained his brother in law, Dr Rick, who's been administering it on Saturdays at his OKC pediatric practice so his work will live on......all the folks I've talked to held Dr Mike in high regard and are grateful for his "outside the box" procedure!! DD

So sorry to share that Dr Mike whose so called "Jesus Shot" helped so many of my clusterhead friends has passed away from an apparent heart attack... DD

Hi Willie I messaged BobW earlier and this isn't a part of the genetic study, however, Dr Burish is going to be speaking at the clusterbusters conference next month.

G'afternoon JBH! I have to agree with Chf on looking into hemicrania continua!! The good news is that it is very treatable with indomethacin!! I've never heard of antibiotics being used as an effective treatment for clusters either. DD

Hey Willie! Welcome to the community and thanks for posting this! Sadly, I was a member here when our founder put up the post advising us of Wills passing......his Papa has really stepped up and done an incredible thing in his memory for the Clusterhead community!! I'm not sure, but this might possibly be a part of the ongoing clusterbusters genetic study but it seems strange that they can't advertise to recruit participants!! Dallas Denny

Hi Kimbrit and welcome to the community!! I was prescribed and have taken Tegretal.....the side effects are horrendous and it did nothing to help clusters for me (it's a commonly prescribed drug for tic de la rue which is what this particular doc dx'd me) DD Edited to add: what Chf said....high flow oxygen is the best thing that ever happened for clusterheads

G'afternoon FunTime! Looks like Spiny and Chf pretty much covered anything I would advise so I'll just say Welcome to the community but sorry you have the need to join us!! Very cool that you've been accepted for the psilocybin trial!! Was really bummed to learn that i was too old to participate.....guess no one told em 70 year olds have clusters too!! Dallas Denny

G'evenin CM! You need to be detoxed from the trex for at least 5 days prior to busting for optimum efficacy! Dallas Denny

Hi Bluesfan! Indomethacin is typically used as a diagnostic tool....if your headaches respond well to it then what you have is Hemicrania Continua...if you truly have clusters, it won't help. DD

Hi Anita! I see Chf has you lined out on LSA busts so I'll address vitamin M. Although a few folks are able to source and purchase shrooms, the vast majority of us have had to take up mycology and learn how to grow our own. It's a fairly easy learning curve and not too terribly expensive to get set up but it does take a minimum of between 35 and 42 days to realise the "fruit of your labor". Just watch the youtube video series entitled " Let's grow mushrooms "......they'll demo everything you need to know......you out can source all needed supplies from Wally world for less than $50 with the exception of the brown rice flour, coarse grade vermiculite and a spore syringe. Whole foods or any health food store for the brf at approximately $5 for a 2# bag.....coarse grade vermiculite is only available in large 3 cu ft bags at commercial landscape supply stores in my area and costs around $35......Spore syringes are available from Spore Works and run around $20.....so between $100 & $125 for a batch of "pain free livin"!! Dallas Denny

Welcome to the community Jimmy! To be honest, you've arrived at the site (and forum) with the best information and solutions for clusters!! We have many members with in excess of 20 or 30 years doin battle with the Beast.....my first cycle occurred in South Vietnam in the Spring of 1968.....followed by a complete remission of 15 years.....2nd cycle was in 1983 and I've been episodic ever since. Great that you have Oxygen in place!! So first, push your doc for imitrex injections.....the pills are much too slow acting! Second, check out the Vitamin D3 anti inflammatory regimen in the CB files section of the board......works well for many folks to either squelch a cycle or at least reduce the frequency and intensity of the attacks. And read about "busting" a cycle using tryptamines and let us know about any questions you might have in the "Share your busting stories" section of the board... Dallas Denny

Hi Jacob and welcome to the community! We have several members here from Illinois including our illustrious leader who is from the Chicago area! You should make plans to attend our annual clusterbusters conference in mid September which is being held in Chi Town this year if you possibly can......we had over 180 attendees last year in Austin and I hear we're on pace to surpass that number this year!! Nothing like meeting a bunch of folks that know first hand what you're dealing with!! Dallas Denny

G'evenin tvan! I've been here since the day this forum went live in 2009 and can only remember one member from Wisconsin and unfortunately he's no longer active here... But, there'll be around 200 clusterheads in Chicago in a little less than 4 months for our annual clusterbusters conference if you can swing it!! This year will be my 4th and believe me, it is an unforgettable, life changing experience!! Dallas Denny