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Showing content with the highest reputation since 05/18/2020 in Posts

  1. 4 points
    I am very happy Tom has some relief but caution is advised. Stem cell therapy comes in many variations. The source of the cells, method of delivery and the criteria for success. There are a couple of case reports describing some degree of relief and a very small study showing some reduction in headache score but no meaningful relief. The postulated mechanism of action when treating trigeminal type pain decreasing inflammation. This makes sense because many treatments are aimed at reducing inflammation. Caution should be stressed because, in general' the data surrounding stem cell therapy is sketchy. There is a tremendous placebo effect particularly when used for joint pain. Because stem cell therapy using one's own fat cells can be done in any type of setting there is little to regulate quality or monitor outcomes. Therapy tends to be extremely expensive. There are many desperate people with pain syndromes and cluster headaches are right at the top of the list. There is little data regarding stem cell therapy and headaches. There are many offers to try the therapy but if anyone tells you they have "lots of experience" treating clusters or even headaches in general I would challenge their veracity.
  2. 2 points
    I'll heal from all of it, it is what I do. It is what we all need to keep in mind. There is hope, there is healing, there is love. We could use more of the later.
  3. 2 points
    I did not even know there was a leader board, I just judge helpful by being here and being another person in the trenches. So, in that metric, you surely are.
  4. 2 points
    Your help will always be needed, there are other areas where there are no indicators of helping efficacy or such ...helping others should and can not be ranked or listed or top-listed. Maybe an option to turn any "leader boards" off could help some of us. As long as there's cluster headache, there's need for helpful family members Thank You for all that you do Peace, Love and I hope you feel better soon
  5. 1 point
    My vitamin D has always tested just fine & I still had CH.
  6. 1 point
  7. 1 point
    Brain, he is not 'bumping' this thread, he is hijacking it. The junk is deleted now. Smile!
  8. 1 point
    That is a rolling tally for a certain period. So, if you are not posting very often, you don't get the likes and such that create the tally. Since your posts are well loved, you get a lot of 'likes' and stuff! Heal well, okay? You are having to deal with a lot!
  9. 1 point
    No apologies necessary, I only meant, just being here is to me, helpful.
  10. 1 point
    Thanks @Tony Only & @devonrex. I'm visual, I used the All Time Leader Board (and other Leader Boards here) as a quick tool. For me it isn't about competition at all, it just helps me to see it. I hope that is understandable. Apologies if it isn't, my current pain level makes it difficult for me to do a lot of things. @spiny I had been 4th on that one, I'm not on it at all now.
  11. 1 point
    Oh, absolutely, please do if you can do that !
  12. 1 point
    thanks @Tony Only. if you don’t mind, i can print this page, highlight the ch and leave it in his mailbox, if i can do so. he lives a few miles from me. geographically-speaking.
  13. 0 points
    Been seeing Wim Holf's interviews and his achievements on you tube. His method seems to be quite simple and he's proved crazy stuff scientifically. Managing to control release of endorphins, dopamine etc in the brain. Wondering if his method could help with CH?
  14. 0 points
    Point Being Is This: If you are using Vitamin D, Please try using Melatonin, as the metabolites or something get broken down into molecules that interact with the serotonin receptors
  15. 0 points
    I see lots of people trying Vitamin D3, while that is helpful,I hope more proper medicines would be used Melatonin is part of the tryptamine family. Tryptamine is the common functional group in a set of compounds termed collectively substituted tryptamines. This set includes many biologically active compounds, including neurotransmitters and psychedelic drugs. Serum melatonin levels are reduced in patients with cluster headache, particularly during a cluster period. This loss of melatonin may be the inciting event necessary to at least produce nocturnal cluster attacks. Providing back melatonin via an oral supplementation route theoretically could act as a cluster preventive. The efficacy of 10mg of oral melatonin was evaluated in a double-blind, placebocontrolled trial.20 Cluster headache remission within three to five days occurred in five of 10 patients who received melatonin compared with zero of 10 patients who received placebo. Melatonin only appeared to work in episodic cluster patients. Recently,melatonin has also been shown to be an effective preventive in chronic cluster headache.21 A negative study was published utilizing melatonin for cluster prevention but the dosing was lower than the other studies and a sustained preparation was given.22 The author believes that melatonin should be initiated in all cluster patients as a first-line preventive sometimes even before verapamil. It has minimal side effects and in a number of patients it can turn off nocturnal clusters within 24 hours. Melatonin also appears to prevent daytime attacks. In addition, even when melatonin does not completely resolve all of the attacks it appears to lower the dose necessary of the other addon preventives. The typical dose of melatonin used is 9mg at bedtime (three 3mg tablets) but higher dosages may be necessary. If one brand of commercial melatonin does not work another should be tried because the true amount of melatonin in various OTC brands varies widely.