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Showing content with the highest reputation on 05/02/2021 in all areas

  1. I am soooo excited to announce that Clusterbusters is going camping July 23-25, 2021 in the Shenandoah Valley! We hope that you will join us. More information and registration can be found here: https://cureforclustercamping2021.planningpod.com Please don't hesitate to reach out if you have any questions. I'll try to check in here, but also feel free to email me at eileen@clusterbusters.org.
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  2. To all, This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Center, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the c
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  3. .....i am of the firm belief that one should go with "gut feel", you know you best. even if things turn out unwanted or not as expected, the mental anguish "savings", in my experience, are worth it.... ....whether to bust or not with viral illness going on is a very good question that i don't recall seeing discussed here. there has been much discussion over the years, in various places, that illness/inflammation/allergies/trauma are fodder for the beast....so having covid is likely to make matters worse. hoping others can share actual experience...
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  4. oh dear, 5-6 times until PF that's a lot! but anything is worth being PF:) do you get on and off the D3 regimen ? I'm planning to keep it on 25,000iu a day after loading period (100,000 FOR WEEKS 1-3 , 50,000 for weeks4-6) as I have a friend with CCH who followed that and is pain free for 8 years now after being CCH for 24 years!! this is a quote from my friends msg regarding the D3 regimen: week 1 - not much change week 2 - the clusters are less painful (kip6-7 max) week 3 - you will feel like it's going to happen but you will get shadows instead (even for days)
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  5. Such great news. Many thanks for all your hard work. I know the Vit D3 regime made a difference for me.
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  6. Such valuable information! Thank you for all you do Batch. I’m so lucky I found this group kat
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