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Dallas Denny

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Everything posted by Dallas Denny

  1. @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
  2. 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
  3. 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
  4. 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
  5. Typically pred is prescribed as a bridging med to give some relief til a prophylactic drug like verapamil has time to take effect.....for most folks it doesn't abort the cycle but provides some temporary relief until you finish the taper DD
  6. Welcome to the community Ryan, but as Moxie said, sorry you have the need to join us! First, I'll reiterate her question about autonomic symptoms of ch....eye watering or weeping on the cluster side and runny or stuffy nostril, also on the cluster side....although its possible to have clusters without the autonomic symptoms, that's pretty rare! Since the onset of your headaches came after a blow to the head I would suggest that you research cervicogenic headaches which mimic clusters without autonomic symptoms! How is your doc treating your headaches? Typical measures include prednisone tapers, verapamil, imitrex injections, and high flow O2 to abort attacks. I forget who he plays for but Terrance McKnight is also a diagnosed clusterhead who plays in the NFL. Dallas Denny
  7. Good news jeler! If you're in the US you can also get the 25 (OH) D test online thru: https://www.lifeextension.com/vitamins-supplements/itemlc081950/vitamin-d-25-hydroxy-blood-test Sale price currently is $37.60 DD
  8. Welcome to the community Kat! CH will absolutely morph over times and I've heard of folks who don't experience the autonomic symptoms. So, in my opinion, what you're describing may or may not be clusters. Do you know if your docs have ruled out occipital neuralgia? Dallas Denny
  9. Welcome to the community Andy....sorry you had the need to join us though! Looks like just about anything I'd have to say has been addressed by others.....as far as age goes.....I'm one of the 70 somethings here and my last cluster activity was early Spring of last year shortly before my 71st birthday.....a doc once told me I'd outgrow them in my late 50's so I'm now wondering what part of my late 50's he was referring to! I will reiterate others O2 comments though, screw the docs and the oxygen suppliers if you can't get satisfaction......as Spiny stated, many of us have used welding oxygen longterm with no ill effects....costs between 3 and 4 hundred bucks to get set up with a large tank, reg, and the Clustero2kit mask then 20 to 25 bucks for refills/exchanges.......O2 is a clusterheads best friend!! Dallas Denny
  10. I really hated seeing this when it happened.....a chronic clusterhead from the Denver area that I've known for several years had absolutely wonderful results with this treatment and was devastated when they took it away from him!! DD
  11. Over the years we've often seen this kind of traffic just before, during, and shortly after the conference!
  12. That's an affirmative on the pizza and beer Freud! Lmao at "perfect record of resisting honky tonks"......I lived in Cowtown from 68 to 84 and played guitar and sang in bands the majority of that time period.....I imagine I've sang a country song in near about every honkytonk in town!! Sounds like we're gonna have a big crowd with lots of 1st timers this year so really looking forward to meeting all of ya'll...I had the pleasure of meeting Pete in Austin after knowing him online for many years and looking forward to seeing him again......and I've talked to several folks that I've met and known here for a long time ( all from the early days of the board but who are no longer active here) but have never met in person that are coming as well.....AND, I finally get to meet my co-conspirator, err, umm, I mean co-moderator Spiny in person AND, bejeebers is gonna try to make it up from Austin......and, of course, my BFF "hipshot" AKA Hollywood Dan of Nat Geo fame will be there! Shit the bed Loretta! It's gonna get rowdy ya'll......Yeeee Feckin Hawwww! DD
  13. Hey Brian It's been close to 8 years since I escaped the Metromess and to be honest I'm not much of a "foody"....goin out to eat usually means beer & bbq or fried catfish, hushpuppy and coleslaw...lol! But, I'm fairly certain that my favorite bbq place, Bakers Ribs, has a location near the conference hotel. I DO know where some of the best honky tonks and dance halls are though...lmao! DD
  14. You can bet I'm gonna be there dude! Spent almost 43 of my 72 years in Cow Town and Dallas! Looking forward to meeting ya my friend! This will be my 4th conference in the past 10 years...1st in Portland in 2010, only around 40 of us.....we've come A LONG WAY since then.....you'll meet a couple hundred of us I reckon!! Don't worry about O2!!! Clusterbusters will have plenty on hand and you'll be able to check out a cylinder for your room..just bring your reg and mask. DD
  15. 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
  16. Yuppers... Oregon is next!! Who'd a thunk we'd see this...EVER!!!!
  17. 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
  18. 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
  19. https://embassysuites.hilton.com/en/es/groups/personalized/D/DALEMES-CLU-20190918/index.jhtml
  20. If.... IF....they're saying the have 5 Meo Dalt available then it is definitely a scam!
  21. 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
  22. 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
  23. 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
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