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First Cluster in Years - Trying to Get D Levels Corrected


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I had been cluster free for three years since being on the D3 regimen (only shadows that were easily knocked out by sumatriptan). Huge thanks to Batch and this forum for gathering the data and creating this wonderful regimen. Recently had blood work completed and my D (25) was approx 120, so my PCP wanted me to cut my D3 intake in half to 5Kiu. Shortly after dropping it down to 5k (approx 1-2 weeks) I started getting walloped again with my first cluster in years.


The initial cut to 5k was approx 1 month ago, so the last 2 weeks have been unpleasant to say the least. After doing more reading and checking my calcium (which was 9.7) I realized I never needed to cut the D in the first place. For the past week I’ve been taking 50kiu daily with the rest of the regimen to get my D back up and still getting beat up pretty bad.

My plan is to continue at 50k for one more week and get blood work done at some point late next week. I was curious about the forum and/or Batch’s thoughts on this plan. Thanks in advance!

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2 hours ago, TryingToFix11 said:

I had been cluster free for three years since being on the D3 regimen (only shadows that were easily knocked out by sumatriptan). Huge thanks to Batch and this forum for gathering the data and creating this wonderful regimen. Recently had blood work completed and my D (25) was approx 120, so my PCP wanted me to cut my D3 intake in half to 5Kiu. Shortly after dropping it down to 5k (approx 1-2 weeks) I started getting walloped again with my first cluster in years.


The initial cut to 5k was approx 1 month ago, so the last 2 weeks have been unpleasant to say the least. After doing more reading and checking my calcium (which was 9.7) I realized I never needed to cut the D in the first place. For the past week I’ve been taking 50kiu daily with the rest of the regimen to get my D back up and still getting beat up pretty bad.

My plan is to continue at 50k for one more week and get blood work done at some point late next week. I was curious about the forum and/or Batch’s thoughts on this plan. Thanks in advance!

That's so awesome that you went three years on the D regimen without a CH. I never could justify in my mind why physicians with some knowledge of CH wouldn't suggest the D protocol and or why they would think so archaicley that they would back us off something that was improving our quality of life. Seems that  your calcium levels should have been checked alongside the D and a few other things that seem to give cause for concern when on higher levels of D3 prior to telling you to back off. I'm not anti doctor or anything like that and see my regular PCP often as well as my neurologist. Overall my neurologist is a good guy but even after all this time an numerous emails back and forth I have yet to receive a response on my D3 questions. Idk it just makes me sad that natural approaches are not widely tought in medical schooling. I hope your levels get back to that of repreave soon!

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Hey TTF, 

This is the first year that I have avoided the sun at all costs. And it has put me in the position that you are now. I have never had a cycle in summer. but now here I am. Glare...... One hit the first night, then made 4 for the second night. O2 is working great, but I am tired of it already, so I definitely feel the pain and all that mess. My D3 is now upped too! This cycle has been going for over a week now. Soon, I will be P.F. I hope and you too!!!! 

Hang in there and we will get better in short order!! 

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 I showed my doc the D3 protocol and he has testing my levels. I can not get my D levels up to where it needs to be because of my calcium levels have gotten to high. My doc has me holding steady with 4000 IU of D3 a day. 

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mit12,

Have you tried upping your K2? That might bring the calcium down some so that you could up the D3. MIght be worth a shot for 3-6 months and see where you are for all of them.

Jimmy, I an not aware of any shortages. But that does not mean that there is not one! 

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3 hours ago, Jimmy J said:

Trying to get lab work done for d3. My pcp says that because of supply chain issues the vials needed to perform the test are unavailable. Is this an issue for anyone else?

Maybe my response to this didn't go through for some reason but no I haven't had that issue but I'm not surprised. You can order a home finger prick test through grass roots health. You will need to sign up to be a part of the study then you can order the kit, prick a finger of your choice and send in the sample. Takes about 2 weeks but a way around the supply chain issues.. cost when I did it was around $70 

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Hey TTF,

Sorry about the delay in responding.  I'm on my annual fishing trip to Pelican, AK.  Our house has no phone, TV or Internet access so I hike a quarter mile to the town library for WiFi access.

Thi big Chinooks (King Salmon) are hitting as are the Halibut so I'm enjoying my vacation.

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There's nothing wrong with a vitamin D3 dose of 10,000 IU/day and the fastest way of building serum 25(OH)D3 is with a 50,000 IU/day loading dose for at least 12 days.  That totals to 600,000 IU of vitamin D3 and that should elevate your serum 25(OH)D3 by 60 ng/mL on top of your baseline serum concentration.  I'd shoot for a target 25(OH)D3 serum concentration range of 80 to 100 ng/mL

We have also had a number of CHers respond to a collection of supplements with antihistamine properties I call the Antihistamine Full Monty.  It includes 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3.  It also includes 250 mcg/day Selenium, 5 mg/day Melatonin (taken at bedtime) and 8 grams/day vitamin C.  You can also add 500 mg.day NAC.

I buy the bulk powdered vitamin C in 1Kg bags and stir two  level teaspoons in 8 oz of water then take sips all day until it's gone by bedtime.  It tastes like unsweetened lemonade. 

You can taper the first four supplements to 2 grams/day after a week to 10 days fully CH pain free.  I'd stay at 2 grams/day on the first four supplements for at least a month.  Dealer's choice on tapering further.

Tale care and please keep us posted.

V/R, Batch

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