Hey Pfunk,
Have you seen your PCP/GP for labs of your serum 25(OH)D3, calcium and PTH (Parathyroid Hormone)? 25(OH)D3 is the first metabolite of vitamin D3 that's used to measure its status. That you haven't responded to the vitamin D3 regimen tells me your serum 25(OH)D3 is likely too low to provide a therapeutic response with a significant reduction in your CH frequency. This also means your vitamin D3 intake is too low.
Over the last 5 months, several CHers who were slow to respond to this treatment protocol found a loading dose combination of 100,000 IU/day vitamin D3 (2 Bio-Tech D3-50 50,000 IU water soluble capsules) and 0.5 mL/day (~ 40,000 IU) of Micro D3 nanoemulsion taken sublingual for 4 to 6 days works wonders in elevating serum 25(OH)D3 rapidly with a concomitant reduction in CH frequency. I order both the Micro D3 and Bio-Tech D3-50 from amazon.com.
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Serum 25(OH)D3 data from the study of 313 CHers following this treatment protocol that's been running since December of 2011 are illustrated in the following graphic. The Black normal distribution curve on the left represents the baseline 25(OH)D3 serum concentrations before start of regimen. All of these CHers were experiencing an active bout of CH. The green normal distribution curve represents the 25(OH)D3 response after ≥ 30 days following this vitamin D3 treatment protocol.
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As you can see 82% of CHers who started this treatment protocol experienced a significant reduction in CH frequency from a mean 3 CH/day down to a mean of 3 CH/week in the first 30 days and 54% reported a complete cessation of CH in the first 30 days. Followup with some of the study participants indicates the efficacy in both categories improves over time if they stick with this vitamin D3 treatment protocol.
Most CHers who have tried this combination loading schedule achieved a favorable response in 5 to 7 days. Some have reported staying on this loading schedule longer, up to 10 days. If there's no favorable response after 10 days, lower the vitamin D3 dose to 50,000 IU/day and see your PCP/GP for labs of your serum 25(OH)D3, calcium and PTH. If your calcium serum concentration is within its normal reference range, go back up on the combination loading schedule for another week or until you've experienced at least two full days completely CH pain free which ever occurs first, then see your PCP/GP for another round of labs.
If your serum calcium is still within its normal reference range, start a taper by stopping the Micro D3 nanoemulsion and add a day between the 100,000 IU loading doses, i.e., a loading dose every 48 hours for 4 to 6 days then add another day (72 hours between doses) for 4 to 6 days. Continue the taper until you're down to a vitamin D3 dose of 100,000 IU/week (An average of 14,000 IU/day). This will be your initial vitamin D3 maintenance dose.
I started using this combined vitamin D3 loading dose in April of this year to remain CH pain free due to an allergic reaction caused by the heavy spring pollen. I started titrating my maintenance dose of 50,000 IU/week upwards in March until I was eventually taking 140,000 IU of this vitamin D3 combination four times a week (a total of 560,000 IU/week) by mid May. The following 4-year chart of my labs for serum 25(OH)D3, calcium and PTH tells the story. What this chart doesn't show is I've tapered the vitamin D3 dose down to 140,000 IU/week and I'm still CH pain free.
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My PCP had no problem with my 25(OH)D3 serum concentration at 277 ng/mL as my serum calcium remained within its normal reference range and my PTH hadn't dropped to low. The rest of the labs for my annual physical were also in the "green." He did order a 24 Hr Urine to make sure I wasn't dumping calcium in urine (Hypercalciuria). Here are the results:
24Hr Urine 05/28/2021 03:07 PM
Tests: (1) Calcium, 24Hr, Ur w/Creatinine (003324)
Calcium, Urine 24hr 146 mg/24 hr 26-354
Calcium/Creat.Ratio 118 mg/g creat 14-318
Serum 25(OH)D3 at 277 ng/mL (692 nmol/L). No Hypercalcemia and No Hypercalciuria.
I provide information on this vitamin D3 treatment protocol solely for educational purposes regarding potentially beneficial therapies for Cluster and Migraine Headache. Please discuss this treatment protocol with your PCP/GP or neurologist before starting it.
Take care and please keep us posted.
V/R, Batch