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Dallas Denny

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Everything posted by Dallas Denny

  1. Hey AJS! Welcome to the community but sorry you had the need to join us! To reiterate Chf and Spiny's comment......Oxygen is your best friend, insurance probably won't cover it and medical O2 is usually more expensive than welding O2 not to mention the hoops you have to jump thru with the supplier.......$200 to $300 to purchase a large cylinder full of weld ox, $20 for refills, $40 for a ClusterO2kit (non rebreather mask designed for clusterheads), and $50 for a welding oxygen regulator from harbor freight and you'l be set from now on! I, along with many other clusterheads I know, have used it for many years with no I'll effects.....and, I routinely abort hits in 5 to 8 minutes!! Dallas Denny
  2. Hey Fifty! 185 ng/ml is way high from what I've seen! 80 to 85 ng/ml is the therapeutic level for most folks doin the D3 regimen! Batch is a regular contributor here so you might shoot him a pm for some suggested tweaks! Dallas Denny
  3. G'evenin MH I personally know only 1 clusterhead involved in these CGRP studies....he's CCH and thus far it seems to be working extremely well for him! Good luck! Dallas Denny
  4. Hi Brandylynn! Have you had a blood test to determine your 25 hydroxy D level? My suggestion would be to shoot Batch a pm...he usually answers promptly...and as the originator of the D3 regimen, he usually has some tweaks up his sleeve....I know he sometimes adds benadryl to the mix Dallas Denny
  5. Good morning Verna! So sorry to read that ya'lls 2nd round of dexalog12 injections didn't work as well!! We've had just a few folks who've reported here about Dr Mikes protocol but I know many clusterheads in the Facebook patient communities who have had varying success.....and some who didn't get as much relief from their 2nd round.....Hollywood Dan, who initially found out about Dr Mike initially has had great success for close to 2 years now and I think 4 rounds.....I'll shoot him a message as I'm pretty sure his last round was after Dr Mike passed away Dallas Denny
  6. Welcome to the community blue...sorry ya need to be here! You have a most excellent neurologist in Boston who is also a longtime member here in Dr Brian McGeeney!! He has been attending our annual clusterbusters patient conference for several years and is a really great guy! Let his office know you're a clusterhead and I'm sure he'll work you in asap!! Dallas Denny
  7. Welcome to the community Melissa....sorry you needed to join us! Your last post does indeed sound like classic clusters I'm sad to say! Your priorities should be getting a confirmed diagnosis.....with the diagnosis, if the doc is worth a crap, you should be able to get a script for high flow oxygen, and read up on the vitamin D3 regimen in the files. Dallas Denny
  8. Merry Christmas and Happy New Year to all from Okieland! DD
  9. G'afternoon lynkay! I have forwarded this message to Bob W for you Dallas Denny
  10. Hi Matt Unfortunately, they'e required to sign a nondisclosure agreement to participate so we'll not know until the study is complete and the results have been published as i understand it! DD
  11. Hi Padre! Yes, Eli Lilly is currently doing studies on the CGRP...calcitonin gene-related peptide....looking at efficacy in the treatment of both episodic and chronic clusters....I know several people who are trial participants! Dallas Denny
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. Next year's conference will be in my old home state of Colorado!! Mile high city here we come!!! Dallas Denny
  23. 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
  24. 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
  25. 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
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