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Dallas Denny

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Everything posted by Dallas Denny

  1. Welcome to the community Horton.....sorry you had the need to join us though!! As to your questions, indomethacin is used as a diagnostic drug......if it stops your pain, you get a hemicrania continua diagnosis....if the pain persists, most docs DC the indo. O2 needs to be 100% in most cases......CPAP will not work unfortunately. My advice would be to read up on Batch's vitamin D3 regimen and start there ( ensuring you take all the co factors as written) and if you're on Facebook, ask to join the Australia, New Zealand Cluster Headache Support group........a good mate of mine is one of the admins......Give Dan Bailey a shout and he can get ya sorted on the O2 and other clusterhead information. Unfortunately, I can only think of a few members from down under in the almost 10 year history of this board..... Be well... Dallas Denny
  2. Yuppers... Oregon is next!! Who'd a thunk we'd see this...EVER!!!!
  3. Welcome Bob! If you're close to Boston you can access a member here who is also a Neurologist with a specialty in Headaches.....bostonheadachedoc has been a hero in the cluster headache community for many, many years! I'll send him a message on Facebook and see if hell drop by and comment on your thread! Definitely agree with Pebbles and Chf that it certainly doesn't sound like clusters though Dallas Denny
  4. G'evenin ya'll! Many good points here! As Chf stated, much has changed in the years since we both became involved with clusterbusters.......all of the information in the busting files is based on the anecdotal evidence and surveys from the first few years.....and we've now added another 10 years of folks experience and anecdotal evidence with no new surveys or significant rewrites to the original information. I've spent many, many hours cleaning up the corruption caused to the numbered buster files by the migration from the original yabb powdered board....however, it's not possible to pin them in numerical order so I've pinned just the "Clusterbusters Files Content" page with current links to the numbered files. I'm also going to meet with Bob W at the conference to discuss updates and changes to the board along with staffing..... I ain't no sprang chicken, Spiny is recovering from surgery, we've completely lost bejeebers, Jeff (That hurts my head) isn't here as much as in years past, and everytime I talk to Bob W he's headed to another conference or presentation on our behalf so we are rarely graced with his presence. At any rate, please continue with suggestions in this thread and I'll use it for notes when Bob and I meet up. DD
  5. https://embassysuites.hilton.com/en/es/groups/personalized/D/DALEMES-CLU-20190918/index.jhtml
  6. If.... IF....they're saying the have 5 Meo Dalt available then it is definitely a scam!
  7. I'm episodic Phil.....been busting since 2010....was never successfull at preventing a cycle by maintenance dosing during remission and have never been successful at aborting a cycle already in progress.....but....although I have to dose through out my entire 20 week cycles, I get 2 to 4 completely PF days between doses and oxygen works much better than prior to busting! In 2017 I switched to a preemptive busting strategy in anticipation of a cycle beginning in late March early April at the earliest and as late as July/August......so, I began dosing with 1.5g every 30 days in late February and followed that strategy thru mid October.....never had the first twinge of a hit! In an effort to repeat that success, I've been on the same dosing regimen since mid February. I do powder and cap my doses to avoid the taste and resulting nausea. DD
  8. G'mornin Phil As a guy about to turn 72, I can so relate....unfortunately, in my opinion, there's just not enough anecdotal evidence yet to show that micro dosing is an effective treatment for clusters.....a scant few claim success but 1/10th to 1/20th of a recreational dose (175 - 350mg) is not enough for most folks to reach a therapeutic trip level ! Dallas Denny
  9. Hey teach! I'm sorry but I can't remember what your ch history is off hand but if you've had clusters for a while and are now in a 4 month cycle that coincides with your neck injury, you may well have acquired a 2nd diagnosis of cervicogenic headaches as well!! They mimic clusters in many ways.....my good buddy Hollywood Dan of NatGeo fame has both dx's.....the good news is that he is able to get relief from the cervicogenic hits with nerve facet injections every few months! DD
  10. Agreed Freud!! I'm a longtime daily toker.....it does wonders for my back and neck (5 herniated cervical and lumbar discs) and allows me to forego opiates 90% of the time. But it doesn't effect my clusters....not a trigger and doesn't exacerbate at hit nor does it abort a hit. DD
  11. Hey dm If it's a large cylinder with cga-540 connection, you need to remove the regulator and transport with the neck cap on. I've carried my large weld ox tank in strapped down in the bed of my pickup many times......I could get pulled over, hook up the regulator, and be huffing in short order! DD
  12. If I'm remembering correctly, scholarship applications will open sometime in April.....Eileen will announce it and provide a link in this thread. DD
  13. G'mornin Big Mack I shudder to think about what my life would be like if welding oxygen wasn't an option! Unfortunately, here in the US we don't have a NHS and since Medicare doesn't recognize O2 as an effective treatment for clusters many private insurers follow suit. I've been using welding oxygen for 10+ years with no ill effects.....both medical and welding oxygen comes out of the same faucet, the difference is that medical tanks are vacuumed prior to being refilled while they just give welding bottles a sniff test for acetylene cross contamination. Dallas Denny
  14. Registration complete!! Bitchin hotel location Eileen!! Woot!!
  15. Hey boatman! I would urge you to order the Clustero2kit mask....the Cadillac for clusterheads....and it comes with a mouthpiece as well! I always shudder when I see folks posting about breathing O2 straight from the tank hose cuz accidents do happen!! http://www.clusterheadaches.com/ccp8/ DD
  16. Hi Sicnic! Thank you for your service! I'm an old jarhead and Vietnam vet. I didn't have a TBI but in July of 1967 our bomb dump at the Da Nang Airbase was blown up with a direct hit from a 300mm rocket.......I was a little over 1/2 mile away.....it was 3 am and suddenly it was daylight and you could see 500 and 1000 lb bombs flying thru the air like matchsticks........the concussion threw me 40 ft thru the air and it was almost 2 years before my hearing returned! Curiously enough, my first cycle occurred shortly after the Tet offensive about 6 months later.... IMHO, when medicine has clusters figured out some day, I think they'll find that they can have several different causes. I've known folks whose clusters started..... after a TBI or head trauma......immediately following sinus surgery and cch from day one......or, it could be a wonky hypothalamus ultimately causing a chemical imbalance our brain......we have a longtime member whose clusters began as she transitioned from a testosterone to estrogen based system so probably need to add hormonal causes (could be why some women experience remission during pregnancy).......and they may find others! I also think this is why what works for one clusterhead doesn't necessarily work for another! DD
  17. Welcome Sicnic! If you don't have it, high flow oxygen is the best abortive method for most of us! The anti inflammatory vitamin D3 regimen works very well for many folks. You'll find documents on both in "Clusterbusters Files" section of the forum. Dallas Denny
  18. Hey Big J I don't use the D3 regimen so can't relate personal experience, however I've known Batch since before he developed the anti inflammatory regime.....I'd reccomend shooting him a PM here and I'm sure he'll give you some input! I do know from just watching his posts that it is important to include all of the co factors in the regimen for maximum efficacy and the "sweet spot" for most folks is a 85 ng/ml level on the 25 (OH) D test. I'm sure there will be some other folks along shortly with personal experience...good luck! Dallas Denny
  19. Hi clusternana! Prior to finding out about oxygen in 2007 and busting in 2009, when my hits were still in that 45 to 90 minute range, the more agitated I got included crying the worse the attack got.....since combining O2 and busting, I've experienced just 3 or 4 crying, snot slinging Kip 10's......the vast majority of hits over the past 10 years never got above 3-4 and were easily aborted with O2 and hot coffee or tea in 5 to 7 minutes and oftentimes less than 5 minutes.......still the same on agitation though as far as exacerbating the intensity of a hit! Dallas Denny
  20. Just when ya think you've figured the Beast out, he's gonna morph.....the one consistent thing about ch! And I agree with all of your other rules as well MG! DD
  21. G'mornin Teach! If you haven't already done so, I would suggest that you send Batch a PM and see if he has any "tweaks" for you that might help! I've seen him help many folks over the years by adjusting the regimen!! And I second my friend Pebbles comment on honing your mycology skills......best move I've ever made in my 37+ year history with clusters! And btw Pebbles, so nice to see your comments here old friend....I've missed ya dude!! DD
  22. Lmao! BOF, I just looked back to find the thread "10 years of preventative success"......actually posted 7 years ago yesterday by jammin who is one of the original busters!! He told us about Bomba's shack and his special shakes.....and warned us that if your girlfriend goes with you and Bomba asks her to sit on his lap that she shouldn't do that! And yeah, coming back to the world to be spit on and ridiculed sucked.....but it wasn't long before the cold hard truth slapped me in the face and I became an active member of Vietnam Veterans Against the War and dropped out, tuned in, and turned on!! DD
  23. To be perfectly honest Batch, I've had no use for politics or gub'mint since they sent 50,000 young men like you and I both were at the time to fight and die in a war under false pretenses.....just to put another dime in their feckin pockets!! And it's the same damn thing here.....big pharma, tobacco, insurance, ect own all of them! IMHO, only 2 scenarios can bring about any meaningful change to the quagmire we're in......term limits, ain't no way Congress is passing that......and armed insurrection, and we both know that things are gonna get real ugly with that option before it gets better....if it does in fact get better!! IDK, there's been several times in the past couple years that I wish I'd made the choice to go to Canada instead of Nam! Hell, I've taken to turning the news on when I know it's just about time for the weather so I dont have to hear about all the bullshit that's goin on!! DD
  24. Have you been in direct contact with Batch and what is your 25 (OH) D reading? The sweet spot for most folks is around 85 ng/ml.....if your blood tests have reached that threshold then I would suggest that you send Batch a PM here and see if he has some tweaks to the regimen for you!
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