Dallas Denny
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Posts posted by Dallas Denny
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Over the years we've often seen this kind of traffic just before, during, and shortly after the conference!
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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
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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
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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
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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
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Very timely update miss Eileen!!
DD
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Yuppers... Oregon is next!! Who'd a thunk we'd see this...EVER!!!!
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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
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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