Dallas Denny
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Posts posted by Dallas Denny
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Hey Sid!
5 meo Dalt had a fairly good efficacy for many clusterheads.....unfortunately its manufacture was outlawed in China where the vast majority was made......there are ZERO reputable labs who still have any in stock....there are some who will tell you they have it, and take your order and money, but they'll ship you nothing....as several folks that I personally know can testify to!
Sorry for the negative news but that citizen science experiment is dead in the water!
Dallas Denny
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G'mornin young lady!
Sounds like you found ya a good, well informed doc! Here's the link for the Cadillac of masks...
http://www.clusterheadaches.com/ccp8/
DD
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I'm fairly certain the deadline for scholarship application has passed KT.....hope you get to make it!
Dallas Denny
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Welcome to the community young man!
Oxygen WILL change your clusterhead life Mel! I typically abort attacks in 10 minutes or less!!
Docs and suppliers can often times be a pain in the arse though.....script needs to be worded thusly...."oxygen therapy for cluster headaches @ 15 lpm delivered via non rebreather mask".....most of the masks suppliers have are crappy but you can get one made specifically for clusterheads in the store at our sister site clusterheadaches.com for around $30!
Dallas Denny
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Hi MG
Neil Young's Harvest album and Pink Floyd's Brick in the Wall!
DD
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Hey Clusterman!
To my knowledge, it's not necessary to DC the anti inflammatory regimen when you bust....pretty much everything else with the exception of low dose verapamil you need to avoid.
DD
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G'mornin MG!
From every thing I've read over the years gabapentin (neurontin) seems to be very effective for nerve pain from MS and fibromyalgia but I've seen very few glowing reports about efficacy for clusters and many reports of terrible side effects........I don't recall reading anything at all about its use for migraines though. I do know that it's a drug that you absolutely must taper off of very slowly if you try it and decide to DC it!!
DD
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Hell has officially froze over and the pigs are a flyin or I have died and gone to heaven!! Medical Marijuana is now legal in Okieland!! As a Medicare recipient my license fee is $20 for 2 years to have 6 adult plants and 6 seedlings, 3 oz in my possession out n about, 8 oz possession at home, 1 oz of concentrates in your possession, and 72 oz's of edibles!! Yee Fecking Haw!!!!
Dallas Denny
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Yes, her clusters and migraines are both well managed by busting I believe
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Good evening Purple!
Nice to see you posting here again!
I'm trying to remember, (my forgetter works much better than my other parts in my old age), but just can't seem to recall whether I knew you were trans or not....nor can I recall if you've interacted here with "Moxie Girl", who also transitioned from Male to female and whose clusters began when she went from a testosterone based to an estrogen based system?
Very interesting post....welcome back!
Dallas Denny
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G'afternoon Snaithbert!
I'm with jon....chances are slim that ins will cover O2, and it IS expensive out of pocket.....I had a little better deal than jon at $12/E tank......but I was going thru a full tank every 24 hours so was driving 1/2 way across Dallas twice a week!
Then came welding oxygen!! $150 cylinder deposit, $6/mo cylinder lease, and $18/refill for a large ( 9" dia x 48" tall) cylinder.....added a weld oz regulator from Harbor Freight for $50 (they've discontinued that model and the one they carry now is around $70), and a clusterO2mask from the clusterheadaches.com store for $30.....(heavy as hell to shlepp around but in a 20 plus week cycle I used 2 1/2 tanks and only 1 Trex injection and no other big pharma meds!
When I retired and moved to okieland a few years back my local welding shop didn't lease tanks so I had to buy the same size tank outright for $300 and refills cost me $21!
Been huffin it now for 9 years with no ill effects....just don't let the welding supply folks know you intend to breathe it!
Dallas Denny
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You are in for the experience of a lifetime FunTimes! This will be my 4th conference....at my 1st in Portland (2010) there was around 35 of us....Las Vegas (2012), around 100....Austin (2016), well over 200!! Amazing experience to be around a whole raft of folks just like yourself who absolutely "get it"......freaking priceless!!
DD
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So glad to hear that this is continuing to work well for ya old friend!
DD
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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
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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
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Clusterbusters will have O2 tanks available at the conference hotel...just bring your regulator and mask FunTimes
DD
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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
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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
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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
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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
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Hey Jerry!
I'll shoot him an email and ask that he PM you and copy me as I also have that problem!
DD
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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
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Welcome to the community home girl!
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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
Any new treatments
in General Board
Posted
Hi Vanessa
Sorry to read this thread!
There's not really any new treatments as yet although we do finally have some real research in progress!
Have him try energy drinks or shots at onset as that helps many folks
And read up on the anti inflammatory vitamin D3 regimen in the files section.....its important to incorporate all of the co factors and have a blood test but it helps the vast majority of clusterheads who follow the process correctly
Dallas Denny