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Dallas Denny

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Posts posted by Dallas Denny

    Looking to buy Cluster O2 kit for UK

    in General Board

    Posted

    Welcome to the community @Lymestoney!

    To my knowledge it's only available thru the clusterheadache dot com store I'm afraid!

    If you happen to have plans to attend our 2nd annual clusterbusters European patient conference in Glasgow in May you might be able to purchase one there!!  I know that we did send a few to last years inaugural event.

    After having used one for 15 years I can tell you if I were to lose mine I would gladly pay $75 to replace it!  They are just that good!!

    Dallas Denny

     

    • Like 4

    I was cured of my Chronic cluster hadaches by Dr Shevel in South Africa

    in General Board

    Posted

    3 hours ago, Douglas Ward said:

    Hi! If anyone knows of a neurologist that is interested in Dr. Shevels technique I am happy to connect them to Dr. Shevel, or share my experience with them so they can investigate for themselves. Dr. Shevel is happy to share his knowledge with anyone who will listen. Please let me know,

     

    Thanks!

    @Douglas Ward Yes, we all get that you're promoting Dr Shevel and interested in recruiting neurologists to learn his procedures.

    First, I know of no one in the online  clusterhead communities who would ever reccomend him or his procedures as an option to another clusterhead.

    Second, same thing goes for reccomending to a neurologist that they should seek out his knowledge and/or experience.

    And lastly, advertising, marketing, and promotion is prohibited in this forum and any future attempts by you to do so will result in an immediate ban.

    Dallas Denny 

    Denver Area and Emgality

    in General Board

    Posted

    Sorry I missed this thread somehow....the CGRP meds like emgality are thought not to be blockers as they don't bind to the 5ht2a brain receptors like vitamin M or L.

    As @BoscoPikostated, like most pharma drugs they throw at clusterheads they work for some while some folks get zero efficacy!!  I think Trex injections are the only one that works almost universally....unfortunately prolonged and/or overuse is thought to cause rebound hits!!

    Generally speaking, I'd estimate pharma drugs for ch fall into the 50/50 category......20 years now of anecdotal evidence here and at  clusterheadache dot com puts busting at 75 to 80% efficacy!!

    As to altitude @Elder Emo, one of our other mods @spinylives on a mountain in NC and I've heard her tell of getting hit going up or down......I doubt she's talkin mile high altitude like Denver so id think it could be a factor.....btw, I grew up in Colo Springs and made a short lived move to Denver in 76......lived in an old, old 3 story house in downtown on the edge of Cheesman Park!!

    Dallas Denny 

    • Like 3

    D3 Regimen Dosing Frequency and Bloodwork Question

    in General Board

    Posted

    On 1/10/2024 at 7:55 PM, Bejeeber said:

    Huh? Snippy, SHMIPPY, you've never appeared to have a snippy bone in your body, and I'll take this occasion to nominate you for the "Least likely To Ever Get All Snippy" award to be ceremoniously dished out at the next CB conference. :lol:

    I'll wholeheatedly agree with "no snippyness observed" and I second that nomination jeebster!!

    DD

    • Like 1
    • Haha 1

    They're Back! Arrggh!

    in General Board

    Posted

    @Bill H.

    The new injection is emgality...like most cluster meds it works for some and doesn't for others.

    Medicare does cover O2 for clusters now and some here have reported success in getting it.......this change was just made in the last 12 to 18 months.

    @Bejeeber is in the Austin area.....Dr Burish and the Will Erwin institute in Houston are great cluster headache options 

    Yep, if its been 13 years since you've been here it would have been the old orange yabb powered board.

    DD

    • Like 3

    Psychedelic Outlaws!

    in General Board

    Posted

    I saw a comment by Flash on his Facebook homepage this morning about a new, soon to be published book about us by Dr Joanna Kempner!!

     

    How a group of regular citizens debilitated by excruciating pain developed their own medicine from home-grown psilocybin mushrooms—producing near-clinical grade protocols, and their fight for recognition in a broken medical system

    J    oanna Kempner is the premier expert on the social impact of headache diseases. In Psychedelic Outlaws, she follows a group of people called “Clusterbusters,” a community bound by their experience with cluster headache—a neurological disease so excruciating, its pain is often likened to being shot in the head, repeatedly, multiple times per day. Obtaining a diagnosis can take years and treatments often leave patients worse off than they were before. There's a grim reality behind the disease's nickname, suicide headache.

    Kempner’s narrative traces this patient movement to its origins to the extraordinary experiments conducted by a man named “Flash” in Aberdeen, Scotland, and then follows it forward, as the idea of using psychedelics for pain begins to gather in the early days of the internet, and then eventually became a full-fledged effort to bring this knowledge to universities. Their story looks at the politics of pain, why some drugs make it to market when others don’t, and our culture’s complicated history with psychedelics.
     

    • Like 9

    DBS implant

    in General Board

    Posted

    Hey @Daveengland!!

    So, I went back and looked at one of your old threads regarding Ketamine.....noticed a comment from you about "shrooms working to relieve the pain".......was this something that you tried, it worked, then stopped working?  Where are you located in the UK?

    Regarding Tom......I just had a chat with him.....sending you a PM...

    DD

    • Like 2

    DBS implant

    in General Board

    Posted

    @Daveengland from what I've observed in the Facebook clusterhead communities, dbs seems to be something that ya'lls health system considers much more often than here in the states......I've seen a few UK clusterheads in those groups who've had or are being considered for dbs....I've seen no one report success I'm sorry to say!

    I've seen several OG posts and comments (Facebook not here) on other threads by Tom in just the past couple of months and that's the first I've seen of him in many years now!!  I was under the impression based on  his comments that he had some kind of blog or YouTube channel going???

    • Like 1

    DBS implant

    in General Board

    Posted

    G'mornin @Daveengland!!

    It has been a spell seen I've seen you here but do remember some of your old threads.....i looked back at one and see that @ clusterheadachesurvivor aka Tom was the last to comment on that thread......as best I can recall ya'll are the only 2 members here over the 14 years we've been that have had dbs....@bejeebers @CHfather??

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