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ClusterBusters

chwife

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Everything posted by chwife

  1. Hello Batch,
    I just wanted to write and thank you.  I wanted to let you know how my CH husband is doing, because I think we owe you a debt that can never be repaid. His story:  From June 2014-early October 2014, my husband suffered yet another Episodic Cluster Cycle. Prior to this, he had been having cluster cycles every 2-3 years starting as far back as his service in the Navy (1977-84).  In late August 2014, we tried Pete Batcheller's Vitamin D3 regimen, which reduced the severity of his attacks, and within weeks of the start of the Vitamin D3 Regimen, he was PF. We didn't know, at the time, if this was a natural end to his cycle, or if it was the Vitamin regimen.  Five years have now passed, and he has been PF, faithfully taking the Vitamin D3 maintenance as listed on the Vitamin D3 Wiki (I asked him once "How do you swallow all those pills at once?" and he said "I just pretend it's a great big meatball." )This is the longest pain free period  he has had since we've been married. We are both 58, we have 4 children, and we don't talk about CH anymore. He just takes his vitamins. My only regret is that because of the timing, and our desperate action to try the D3 Regimen as soon as we heard about it, we were not able to be a part of your research and study (he did not have a pre-regimen test and strongly prefers not to mess with what is working). I wonder how many out there never participated in research, and yet are finding success with the Vitamin D3 regimen.  

    1. Batch

      Batch

      Hey CHWife,

      Thanks for the feedback.  I'm always glad to hear another CHer has found this regimen keeps them CH pain free.   In regards to your question, I estimate at least 2000 CHers have started this regimen since December of 2010.  The online survey of CHers taking this regimen has recorded a little over 300 completed and submitted surveys out of 600 surveys started.  That works out to roughly 30% who started this survey and 15% who completed it.

      One of the important lessons learned over the last 8 years is if the CHers is still experiencing a few CH... the vitamin D3 dose and resulting 25(OH)D serum concentration isn't high enough.  The following chart from this survey illustrates favorable responses up to 150 ng/mL.  To have a 25(OH)D serum concentration that high requires a daily vitamin D3 intake between 30,000 and 40,000 IU/day.

      4rNVPRE.jpg

       

      It's still not too late to take this survey.  They all help.

      Take care and please keep me posted.

      V/R., Batch

    2. chwife

      chwife

      I will keep that tip in mind, because we live every day with a tentative glimpse at the future, always keeping the an unexpected appearance of CH in the back of our minds. He is maintaining with the regimen, using 10,000 IU of D3, but if he gets any indication of a cycle, we'll up that dosage, probably returning to the two week loading schedule, and go from there. If it's not too late to take the survey, I will speak with him about it.  I think we are at a point that we can say with confidence that the Vitamin D3 Regimen has made a difference, and is a successful preventative for him. When all is said and done, you made a difference. Thank you. Would you please direct me to the link for the survey? I can't find it.

    3. Batch

      Batch

      CHWife,

      My pleasure...

      To start this survey, click on the following link:
      http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

      Take care and hugs,

      Peter

  2. chwife

    Tragedy

    I am so saddened to hear what happened to Will. There is no bigger tragedy. It is devastating.
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