Dallas Denny

Hey Funtimes! Yup, Eileen confirmed....you will be able to check out a tank to take back to your hotel and there will be large cylinders available in the conference area DD

G'mornin FunTimes! Let me message Eileen, our conference chairwoman, for confirmation but I'm relatively certain that you'll be able to check out and E tank st the conference hotel and take it back to your hotel...I'll post back when I hear back from her! Looking forward to meeting you! Dallas Denny

Clusterbusters will have O2 tanks available at the conference hotel...just bring your regulator and mask FunTimes DD

I know a clusterhead in Denver who's participating in the CGRP trials and he has had very good results! As to pricing, I saw a piece on the morning news show last week about it and uninsured cost for the treatment is estimated at $6900/year!! Good luck! Dallas Denny

Quite common among clusterheads to get a "cluster knot" in their neck and shoulder on their cluster side and I am most definitely included in that group! Dallas Denny

Hi godsjoy Conference agenda usually wraps up around 5pm on Sat followed by the conference dinner. There's not any official conference agenda on Sunday but many folks stay and get together for breakfast and goodbyes......I'm sure Racer is going but not sure about nani. Dallas Denny

Hey Barcode Yeah, I'm sorry to say that in my experience ins companies and suppliers stuck out loud when it comes to O2, especially when you're talking high flow! I'm about to turn 71 and Medicare won't pay for oxygen for clusters period! My work around is taking the docs, ins companies, and suppliers out of the equation......paid $321 for a large (48" tall x 9" dia) cylinder full of O2 at my local welding supply......$50 fir an oxygen regulator at harbor freight......$30 for a clusterO2mask at the ch.com store......and $21 per refill/exchange. In 2016 I cycled from Mid May til Mid Oct and used 3 refills.....$63 and no freaking hassle!! Welding ox and med ox comes out of the same faucet.....med tanks have to be vacuumed prior to refilling while they just do a sniff test for welding tanks.....been huffing it since 2007 with no ill effects and I know many other clusterheads who use it as well! Dallas Denny

Hey Jerry! I'll shoot him an email and ask that he PM you and copy me as I also have that problem! DD

Hi Joey Just fill in your info, don't worry about that security check box, check the "agree to terms of service" box and you're good to go Dallas Denny

Welcome to the community home girl!

Hi Sontye! You can eliminate your doc from the equation and order the 25 hydroxy D [ 25 (OH) D ] test online from lifeextension.com....I know several folks that have used their services DD

With a cycle schdule like that, I would definitely recommend staying on it year round.....it takes a while to elevate your D3 levels to the 80 to 85 ng/ml "sweet spot" where most folks get relief.....if not complete cessation, most report fewer, less intense hits!! DD

G'mornin Sontye and welcome to the community!! Looks like Spiny and Chf have covered all the bases for you but I'll chime in on the weld ox work around......I've been using it for almost 10 years with no I'll effects......you just can't let the welding supply know you intend to breathe it!! Dallas Denny

Well done my friend! DD

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

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

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

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

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

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

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

Merry Christmas and Happy New Year to all from Okieland! DD

G'afternoon lynkay! I have forwarded this message to Bob W for you Dallas Denny

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

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