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ClusterBusters

Dana129

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Everything posted by Dana129

  1. Dana129

    Australians beware

    Thanks for the heads up freud, I didn’t even know that
  2. Dana129

    Australians beware

    Hurray for me
  3. Dana129

    Interesting info on legalization

    You wouldn’t by chance know if the US is accepting migrants from Australia do you?
  4. Dana129

    Interesting info on legalization

    Ms McCann told the Washington Post: "At this point, I don't think it's a good idea. We're still figuring out marijuana, and even though things are going well so far, we're still measuring the impacts on the people of Denver." From the article...It’s ironic how people like McCann are so reluctant to take psychedelics into consideration for beneficial purposes because we know little about them aside from anecdotal evidence, and yet people like her are the ones preventing such things to be researched
  5. Dana129

    Interesting info on legalization

    Noice
  6. Dana129

    Interesting info on legalization

    I wish they mentioned cluster headaches in the article, It would be nice to have a bit more recognition in terms of what that means for cluster headache survivors in Denver, in any case, this is a big victory, this is long overdue
  7. Dana129

    Becoming unmanagable

    That’s great news mate
  8. Dana129

    Be a Zombie or a Clusterhead?

    As long as the abandoned pharmacies have batch’s Vitamins we’re g
  9. Dana129

    Be a Zombie or a Clusterhead?

    Well, look on the bright side, in a zombie apocalypse, atleast you won’t have to worry about legislators stopping you from growing shrooms
  10. Dana129

    Nebula from avengers

    So, I watched avengers end game, did anyone else who watched it think of cluster headaches whenever They saw Nebula? Think about it, whenever her left eye projects an image, she holds her left side of her face in agony, when her left eye is in heaps of pain from electricity or whatever, and her left side of her face has markings where cluster pain usually is located, such as around the eye, the temple, and the left forehead...totally random thing to say, but I watched it tonight and I instantly thought of cluster headaches when I saw her in the movie
  11. Dana129

    Yet another clinical failure

    https://xconomy.com/new-york/2019/04/23/tevas-approved-migraine-drug-fails-again-to-blunt-rarer-headache/ These Pharmaceutical companies are seriously taking the piss out of us. For the love of God, no surprise that the trial was a failure, considering the drug is made for fucking migraines and not clusters. When are we going to get a drug made for actual cluster headaches!? this is fucking bullshit
  12. Dana129

    Question for batch

    The below is a screenshot a gentleman had taken of his list of supplements for the d3 regimen, now I’ve already ordered my original list of supplements, but I think I’m going to go with this list of supplements next time around. My question is, are there anymore supplements that I need to add here, my original list of supplements had 9 different products whereas this only has 5, is there anything missing from this picture (sorry if this question is tedious, just trying to leave no stone unturned)
  13. Dana129

    What is 5-meO-Dalt?

    Haven’t heard of this one before
  14. Dana129

    What is 5-meO-Dalt?

    I’ve got a meeting scheduled in 2 week with a neuro
  15. Dana129

    What is 5-meO-Dalt?

    For God sakes, I swear every fucking breakthrough or miracle treatment for cluster headaches is either illegal or not recognised as a legitimate treatment, yet companies and government insist on spending what little funding our illness has on bullshit treatments and feeding us prescription drugs that aren’t even made for clusterheadsches that either have no effect whatsoever or make our lives worse...sorry, had to vent there a little
  16. Dana129

    What is 5-meO-Dalt?

    So, is it possible to obtain it somehow?
  17. https://www.neurologyadvisor.com/topics/migraine-and-headache/dbs-offers-significant-long-term-relief-in-chronic-cluster-headache/ Interested to hear some CHrs weigh in on this...I’m somewhat sceptical
  18. Yeah, I’m usually unconvinced when looking at brain surgery articles about cluster headaches...especially after hearing cluster headache survivor’s story of his brain surgery and the consequences it has on his life years after surgery
  19. Dana129

    Does this sound familiar

    So, in addition to my shadows, I’ve made a distinction between the shadows and a different kind of headache I’ve been getting since my full blown attacks stopped. The pain of this headache is minor however, i very get fatigued, both eyes want to close, and the pain usually is located on both sides of the forehead, but one side is worse then the other, right now, it’s on my left side which has never had a full blown cluster, which is why I think this might be an additional headache. I don’t get any aura, nausea or memory loss, but I do feel very withdrawn and distracted because of how fatigued I feel, the pain itself isn’t that bad, but it’s very frustrating when it happens, the headaches can last from an hour to all day, should I see a doc about this?
  20. So as I’ve said before, I am not officially diagnosed...(gave up getting diagnosed a while ago) but I am gearing to get started on the d3 regimen, but first things first, I need to get my levels checked, so what do I say to my GP to order a vitamin d test? Any symptoms or anything I can name?
  21. its weird seeing a public figure of that notoriety like Daniel Radcliffe to share our illness, would never have guessed he had this illness...I wonder if he has an account
  22. Yes, it’s disheartening knowing that there is a man with such high public notoriety who has so much potential to make a difference for himself and others but isn’t doing it, with that said, sharing your experiences of clusters obviously has its downsides and challenges, I haven’t told anyone in real life not even my family, not ready yet my headaches are an aspect of my life that I absolutely hate, and the idea of that being apart of my identity and how people see me is something that I’m still struggling to come to terms with, perhaps that’s something he is going through, regardless however, it is disappointing that he is an experienced CH survivor and hasn’t contributed much to the advocacy or awareness of the disease
  23. Is it possible to take perhaps 2 weeks worth of maintainence dosing in say 2 or 3 days...I have something coming up and I won’t have access to my supplements
  24. Dana129

    Does this sound familiar

    That’s what we call “shadows” lingering headaches that are either painless or mild, can happen weeks or months prior to an actual cycle, or in between full blown cluster headaches, or after cycles, I’m lucky enough to have these shadows almost all year, used to be just 10 weeks after a cycle, but it’s getting progressively longer, 16 weeks now, it’s pretty common, shadows at times feel like a totally different illness on their own sometimes. I’m sure that whatever treatment you try suggested on here whether that be the d3 regimen or some “alternative treatments” wink wink you can find on the theory and implementation it would help with your shadows if the treatment works for your full blown headaches
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