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I decided to create this thread specifically for new CH members who just got diagnosed and might not want to take any psychedelics for temporary relief and would instead opt for a more permanent solution. I started the D3 regimen as advised by senior members, here is a link to the regimen https://clusterbusters.org/forums/topic/1308-d3-regimen/. On my fifth day of the pills and I've been CH free. So far so good, I'll update this thread from time to time in case anyone might find this useful. Thanks to CH father, Batch and everyone else that helped me find this regimen.

 

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Hey Bilal,

Thanks for the feedback.  It's always great to hear another CHer has responded to the anti-inflammatory regimen.  Be sure to see your PCP after 30 days on this regimen to obtain lab tests of your serum 25(OH)D, calcium and PTH.  As long as you are CH pain free, your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range, your vitamin D3 maintenance dose is good to go even if your serum 25(OH)D is over 100 ng/mL.

Any time after that, if you've time, please take the online survey of CHers taking this regimen to prevent their CH.  To start this survey, click on the following link:

http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

We need survey data like this to help convince neurologists and headache specialists that the anti-inflammatory regimen is a safe and effective alternative to the typical standards of care recommended medications for CH.  Take care and please keep us posted.

V/R, Batch

 

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A week into the D3 Regimen and I woke up to a minor attack. This was the weakest Ch attack I've had. Pain was at a 5 and lasted about 10 minutes. I went back to sleep afterwards.

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  • 3 weeks later...
  • 2 weeks later...

Hey Bilal,

What was the frequency of your CH in hits/day or hits/week before starting the anti-inflammatory regimen?

If you haven't already done so, please take the online survey of CHers taking this regimen so we can capture your response data.  To start this survey, click on the following link:

http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

Take care and thanks again for the feedback.

V/R, Batch

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Hi Batch,

I used to have 2-3 attacks per week and they lasted from around 30 minutes to 2 hours. Shadows were around 5 days a week and lasted up to 5 hours. Now I have one mild attack every two weeks and shadows are gone completely. I did miss the pills twice on two separate occasions, but it hasn't seemed to effect me in any way . I plan on completing the survey after exactly two months on the regimen, so I can provide more accurate statistics.

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Hey Bilal,

Thanks for the update.  Glad to hear you're CH pain free for the most part.  Be sure to see your PCP for a lab test of your serum 25(OH)D.  This is the essential lab data we need reported in the online survey that makes neurologists look at this regimen as a serious safe and effective preventative and not just a fairy tale.

Take care and please keep us posted.

V/R, Batch

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Hi guys,

I just met someone today who's daughter has CH. I've sent her a bunch of stuff about the A-I Regimen, and some links to the Cluster Headache forum. It was her work email, so I didn't send her a link to this forum, or details about other remedies. But am hoping her daughter will reach out to me.

MG

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  • 9 months later...

It's been almost a year since I last posted. I guess it's true that you tend to take your health for granted. Fortunately, I've had the luxury to do so this year. I'm glad to report that ever since I started the D3 regimen I've been completely pain free. No more headaches, and not just CH. I don't recall having any kind of headache in almost a year. I've been thanking God and the fine people of this site that directed me to this regimen whenever I can. To those of you still undecided, please give the D3 regimen a chance and stick to the guidelines.  And to the people on this forum that helped me, from the bottom of my heart, THANK YOU.

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Hey Bilal,

Thank you for the wonderful feedback on your experience with the anti-inflammatory regimen.  Knowing you're CH pain free is exactly how this regimen is meant to work.

Take care and thanks again.

V/R, Batch

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  • 1 year later...

Here's an unsatisfactory answer, and maybe just a temporary one until Batch or some other expert replies. 
It depends.  Depends on what your starting D level is; depends on what level you need (since it varies); depends on whether you are "loading" with extra D3 to speed up the process; appears to even depend on what form you're taking your supplements in.  Some people have reported some positive effects in just a few days (maybe not remission, but reduced severity/frequency); others haven't seen much in a couple of weeks.  I'd say virtually everyone who sticks with it eventually gets substantial benefits.

Batch (xx) might be able to say something more specific about this.

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Here are the results from the online survey I urge CHers to take 30 days after starting the anti-inflammatory regimen, with results of their 25(OH)D3 labs in hand.  The following chart illustrates days to a favorable response from start of regimen.  As you can see, this can happen rapidly.

v0LTmPQ.jpg

For the purpose of this study, I set the Favorable Response = at least a 70% reduction in CH frequency by at least 70% of the CHers starting it.  I just checked the latest survey download from two days ago.  After 9 years running, survey data from 340 CHers indicate 82% of CHers starting this regimen experience an 82% reduction in CH frequency in the first 30 days and 52% of CHers starting this regimen experience a lasting cessation of their CH symptoms.

Another interesting tidbit.  Since I began suggesting CHers switch to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 in June of 2018, the efficacy figures for 2019 and 2020 have jumped to 88.9% of CHers starting this regimen in 2019-2020 achieving a mean 80% reduction in the frequency of their CH in the first 30 days.  Moreover, 66.7% of CHers starting this regimen in this same time frame report a lasting CH pain free response in the first 30 days.  That's huge! 

Thank all of you who started this regimen then took the time to take the online survey.  You've all made these results possible so this is really your study.  I'll also add, the data from this study was so compelling, it resulted in the planned gold standard RCT based on this regimen developed by Dr. Mark Burish, MD, PhD, Director Will Erwin Headache Research Center, UT Houston.   It's scheduled to start early next year.  When it publishes with the results I expect, you'll have helped CHers all over the world.  Well done!

Take care,

V/R. Batch

 

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  • 4 weeks later...

Hi guys,

After about 5 months free, I think I can confirm that the D3 regimem really works. In the past 20 years, I tried almost every medications possible without any great success. The best scenario was about 15 attacks/month. Thanks to this site and especially to Batch for the great help. I am now completely free. From my part, the D3 regimem will reduce the frequency and severity of the attacks. Combined with Verrapamil, it completely stoped my CH. Even my doctor his amaze of how well I am. 

Thanks guys for your support and help for giving me my life back.

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  • 2 months later...

It's been two years since my last post. I started having headaches again. Same symptoms, pain on the right side of my head mostly centered behind the eye along with redness and tearing of the eye. The headaches started in February and weren't as bad initially, I would say they were about a 5 on a pain scale. It's been a month since then and the pain has ramped up to a 7. I decided to pay attention to my triggers and can guarantee that in my case, cold winds are the trigger. I had no attacks last year because I almost never left the house thanks to CoVid 19. I've kept up with the D3 Regimen this whole time and I think the pain would have been way worse if I wasn't taking my supplements. I'll update this thread again once anything changes.

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...sorry you need to be back....but we all appreciate check ins to let us all know how family is, motivation to maintain vigilance, and reports on methods of dealing...

....could very well be that chill (ill?) winds a trigger.....could be the weather changes that bring those winds. noticed one time that nearly every time i was driving to the O2 shop i was wearing sunglasses. initially thought it was the bright light causing hits or the cycle....turned out, it was the RAPID change in barometric pressure (Pacific NW) that brought that sunshine. Lo pressure or Hi pressure no problem.....it was the rapid change. You can stay out of the wind, but ya can't hide from the barometer....sigh....

....you may need to up your D3 for a short time and/or add in an old school anti histamine like benadryl for a bit....tis springtime, where the weather is unpredictable and the pollen isn't.....

Edited by jon019
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Hey Bilal,

I'm familiar with your problem.  Spring pollen lets the CH beast try to open a big ol can of whupass on me If I let it.  Fortunately with over 10 years experience with the anti-inflammatory regimen and lots of data from fellow CHers in the same boat, I've found loading vitamin D3 at 50,000 IU/day to 100,000 IU/day with the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 for three to five days and doubling my maintenance dose from 50,000 IU/week to 100,000 IU/week with the D3-50s for at least a month keeps the CH beast away.   Since the pandemic started, I've also titrated the Quercetin and Turmeric (Curcumin) doses from 1.5 grams/day up to 3 grams/day and it clearly helps.  I also make sure I take 50 mg/day zinc picolinate and at least 8 grams/day vitamin C.

If you've had a recent lab assay for your 25(OH)D3 serum concentration, whatever it is, it's below the CH pain free threshold.  I've kept my 25(OH)D3 up around 150 ng/mL for the last two years and it's kept me CH pain free.  I've been working with one CHer who found his CH pain free threshold was 161 ng/mL.  Anything less than that and his CH beast started jumping ugly.

Take care and please keep us posted.

V/R, Batch

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Thanks for the advice guys! I'll try to increase my dosage of D3, does the brand of D3 supplement matter? I was taking sports research's vitamin d3 (50000 IU), but just to be safe I have ordered the bio-tech 50000 IU as it is cheaper per dosage anyway. I wasn't even taking any Turmeric before, but I'll add that to my list of supplements now. I was also taking 22 mg of Solgar's Zinc glycinate, should I continue with that or change to zinc picolinate as you mentioned?

Lastly, as Jon mentioned my trigger may not be the cold winds, but the rapid change in pressure. I suppose it's possible, I have started wearing winter gear to protect my head and right eye whenever I leave the house. I will know for sure in a week or two I guess. Thanks again for the advice and fast replies, I will implement your suggestions and update this thread if there are any changes.

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Hey Bilal,

Good move on switching to the Bio-Tech D3-50.  Data for 2019 from the online survey of CHers reporting since 2011, indicated an up-tick in raw efficacy from 82% to 88% of CHers responding with a significant reduction in the frequency of their CH or a complete cessation of CH in the first 30 days after I started suggesting this change due to its higher bioequivalence compared to the oil-based vitamin D3 liquid softgel formulations.  There's nothing wrong with zinc glycinate so no need to change.  There appears to be a higher bioequivalence in the Methyl Folate + compared to the generic B complex.

Regarding safe dosing with vitamin D3.  A recent article in the Journal of Steroid Biochemistry and Molecular Biology at the following link, concluded  in the results of a seven year study:  There were no cases of vitamin D3 induced hypercalcemia a.k.a., vitamin D3 intoxication/toxicity at higher vitamin D3 doses and that long-term supplementation with vitamin D3 in doses ranging from 5,000 to 50,000 IU/day appears to be safe.

https://www.sciencedirect.com/science/article/abs/pii/S0960076018306228

The following chart from this study illustrates it takes a long time for a stable dose of 10,000 IU/day vitamin D3 to reach a 25(OH)D3 equilibrium.

xwGC7Ff.jpg

The takeaway from this graphic points out the need to load vitamin D3 at higher doses (50,000 IU/day to 100,000 IU/day) to reach a therapeutic 25(OH)D3 response for CH in a matter of days where a maintenance dose of 10,000 IU/day can take 10 months.  That's clearly too long if the CH beast is jumping ugly and a likely reason too many CHers claim this treatment protocol is ineffective for them.

Watching the presentation by Dr. Ryan Cole on vitamin D3 at the following link is a must for everyone.  https://www.bitchute.com/video/hfzL5gUeQvxr/

Take care and please keep us posted.

V/R, Batch

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