Dallas Denny
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Posts posted by Dallas Denny
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@xxx, can you help here Pete!!
DD
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The old timers told me I got here to continue dosing every 5 days until I was completely painfree....that's the protocol I've always adhered to when in a cycle.
Dallas Denny
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What area are you located in? I have several longtime michigander clusterhead friends who might be close and able to guide you if you're looking for a "med ox" supplier.
As CHf mentioned though, in my experience, you'll find it much easier (and probably cheaper as well) to source your own weld ox rig.....My large M sized equivalent tank cost me $300 and refills are $23......my weld ox regulator came from harbor freight and at the time (10+ years ago) ran about $50.....the one they stock now is in the $80 range which is still much cheaper than a welding supplier will chg.
I've been using it for over 13 years and I personally know folks that were using it several years before that....never suffered any ill effects and it damned sure beats the hell out of having to deal with docs and suppliers! You just can't let them know that you intend to breathe it!
Dallas Denny
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So sorry to read this! I'm going to copy your post and forward it to the t shirt lady so please don't donate them as I feel sure she'll make it right if its her error
Dallas Denny
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Just received a message from the t shirt lady.....total of 49 shirts ordered.....$539 raised to be donated to clusterbusters!!
DD
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The board will be down for a few hours this coming Monday, November 2nd for a scheduled update.
Dallas Denny
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Recieved mine yesterday and am very impressed as well! She's supposed to give me the final tally on the money that was raised for clusterbusters tomorrow.
Dd
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The t shirt lady posted this update today....
"Wanted to give everyone a quick update - so far we have sold 36 shirts! That is $396 to cluster headache research!!! Our store will remain open until 10/9/2020 if you would like to purchase and help out this great cause. Remember a minimum of $11 per shirt sold gets donated to cluster headache research through clusterbusters"
DD
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I just messaged the t shirt lady with your questions....she said they are relaxed fit and very true to size
Dallas Denny
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Must have just been a temporary glitch....just tried several times on 1xl thru 4xl and price was $21 - $24....didn't try on every style though so please try again and if the problem still exists PM me with size, style, and color and I'll send her a message
DD
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Hey ya'll!
I'm posting this with BobW's approval......a clusterhead in the Facebook support group has had some designs drawn up and will be printing these shirts herself.....all proceeds over her cost (approximately $11/shirt..slightly less on larger sizes which cost her more) will be donated directly to clusterbusters......orders will only be taken thru Oct 9th and then she'll begin printing and shipping......I ordered 1 size medium and my total cost with shipping was just under $25.
DD
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Heard back from Bob late last nite Jon....they're working on that now....he'll either get the info to me or he will update the thread
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Good question bud....just sent Bob W a text to see if he has any input...I'll update my post when he responds!
DD
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G'mornin ya'll!!
Please take a few minutes to make a public comment about the efficacy of O2 in aborting clusters!! Although this is about coverage for Medicare recipients, most private insurers follow the lead of CMS! They'll be taking comments for 30 days!
Note: from what I understand this site is not IOS friendly so if you have any issues commenting from an iPhone that's probably why.
Dallas Denny
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Welcome to the community Nick!
Unfortunately, there aren't any answers to your questions that are set in stone!
However, the Beast does morph over time......mine were just a few weeks with mostly late evening hits the first couple of cycles but by 1998 they had progressed to 20 to 26 weeks weeks with an 18 to 19 month remission period, and the vast majority of my hits were nocturnal.
The good news is that you have a bonafide dx just months after your clusters prevented......7 years from onset was the average when I was dx'd in 91..mine began in 84, so I fit exactly!
And, you've found us and believe me, collectively, the active members here know more about clusters and their treatment than most docs!
Many excellent treatments available to you in the way of oxygen to treat individual hits in cycle, anti inflammatory vitamin D3 regimen that you can take all the time to lessen frequency and severity, and for some it even seems to prevent cycles......and other remedies you can read about in the clusterbusters files and busting stories section of the forum!
Although it can vary, many of the clusterheads I've known for a long time have been dealing with the Beast for 30+ years...36 personally and I'm 73....but, like I say, you've got a leg up on us old farts with what's available to manage clusters today!!
Read and ask questions! Be well!
Dallas Denny
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G'afternoon @omarmosleh!
Just curious if you've received any email responses yet? I've seen 2 comments on my Facebook thread so far...I've met one of them at our annual clusterbusters patient conference in 2015 and she said she'd be willing to speak to you....I also chatted with a young man from Alberta who I've been mentoring for the past couple of years and he said he'd get in touch with you as well. I've also reached out to a Canadian doc that I've known for many years, and who has many years of busting experience but haven't heard back from him yet.
Thanks for your interest in this project!
Dallas Denny
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I know several Canadian clusterheads who bust, with your permission I'll be happy to copy/paste your post and contact info to a Facebook support group for clusterheads where they are members.
Dallas Denny
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Aimovig is one of the CGRP class of medications that have been developed over the past several years.....from the reports I've seen it's overall results are much like other cluster pharma meds....works for some and not for others I'm sad to say. Emgality is another one of the CGRP meds and actually has a dosing protocol specifically aimed at clusters...again, doesn't seem to work for all but from what I've seen, it has a higher efficacy than Aimovig.
Dallas Denny
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Indocin and indomethacin are the same drug.....it's usually prescribed (and works well, usually in just a few days) for a hemicrania continua diagnosis and is also used as a diagnostic drug since it doesn't usually work for clusters....odd that they would prescribe it along with frontline cluster medications!
Dallas Denny
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@Woobyjay @Desperately Seeking Relief if ya'll maintain a presence on Facebook shoot me a PM and I can put you in touch with several clusterhead friends who live in NY, NH, and Mass.....can't recall any that are in Connecticut but the folks I know usually have at least one meet n greet a year for clusterheads in the new England area! Clusterbusters actually had a cocktail party in the works in NYC but I'm fairly certain that was postponed or canx due to covid.
DD
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Welcome to the community Bust, sorry you had the need to join us!! Awesome first post!
Dallas Denny
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G'mornin ya'll
I just read a Facebook post put up by our longtime member Godsjoy777 asking for prayers! Karen's husband Calvin is in ICU in Dallas.
Dallas Denny
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Searching for more research information
in Research & Scientific News
Posted
I'm glad you've found something that helps you @Kenny scott, but I am in total disagreement with your view of the efficacy of cannabis in the treatment of clusters!!
I know entirely too many clusterheads for who cannabis is a trigger, and I know many more like myself who aren't triggered by its use but who find zero help from it either.
Dallas Denny