Madam Posted July 9, 2021 Share Posted July 9, 2021 It has been working for me, I still get Clusters but the intensity is a lot less and it makes them more manageable. I just got my bloodwork back as I have not been feeling well and the doctor has asked me to stop taking vitamin d as the levels are at 216 which she says is way too high. I have been doing the vitamin d regimen on my own for the past 2 years without guidance and following the protocol online. I take 25,000 ie vit D twice a week and then there is also some vit d in the multi vitamin and also in my magensium/calcium tablets. Vitamin D - 216 Calcium - 2,44 nmol/l Magnesium - 0,84 The above are my results. Do I need to take a break from taking the vit d? Quote Link to comment Share on other sites More sharing options...
spiny Posted July 9, 2021 Share Posted July 9, 2021 Hi Madam! I sent a pm to Batch. Hopefully he gets back and answers this for you. He is the expert on the D3 Regimen. ATB! Quote Link to comment Share on other sites More sharing options...
Madam Posted July 10, 2021 Author Share Posted July 10, 2021 Thank you Spiny!!! I believe I have to be around the 80 mark on vit d but have no clue how long it takes to lower my values and when I can start again. I have no clue how it got so high in the first place, I don't go over 70,000 ie a week. Quote Link to comment Share on other sites More sharing options...
Madam Posted July 20, 2021 Author Share Posted July 20, 2021 Anyone know how long I need to abstain from Vit D to get my levels lower? I don't know how long it takes for the levels to drop and when i can continue taking it again. Quote Link to comment Share on other sites More sharing options...
xxx Posted July 20, 2021 Share Posted July 20, 2021 Hey Madam, Thank you for the update and feedback.. Your serum calcium and magnesium concentrations are fine. You have two problems. (1) You're not taking enough vitamin D3. A 25(OH)D3 serum concentration of 214 nmol/L (86.4 ng/mL) is too low for half the CHers taking this regimen. They need a 25(OH)D3 serum concentration between 90 and 180 ng/mL (225 to 450 nmol/L) to remain CH pain free. The following chart illustrates the normal distribution of lab tests for 25(OH)D3 reported by 313 CHers at baseline before starting this protocol (black) and after ≥ 30 days on this treatment protocol (green) for CHers who have responded to this regimen. As you can see with the green line, half the CHers under this curve need a higher 25(OH)D3 serum concentration up to 180 ng/mL (450 nmol/L) for a favorable response. (2) Your PCP does not understand vitamin D3 therapy. If he did, he would have known your serum calcium is well within its normal reference range so there is no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity with a 25(OH)D3 serum concentration of 216 nmol/L so no need to stop taking vitamin D3. Were I in your shoes, I would start loading vitamin D3 taking 100,000 IU/day until I was CH pain free for at least two full days (48 Hours) then start a taper by lowering the vitamin D3 intake to 50,000 IU/day for a week or two. If I remained CH pain free, I would continue the taper by dropping one 50,000 IU dose once a week each week until I got down to 50,000 IU once a week. If at any time the CH beast jumps ugly, I would go back up to the previous higher dose. If you can find it, order some Micro D3 illustrated in the following photo. You can order both the Bio-Tech D3-50 and Micro D3 from amazon if you don't have them. iherb.com carries the Bio-Tech D3-50 but not the Micro D3. https://www.iherb.com/pr/bio-tech-pharmacal-d3-50-cholecalciferol-100-capsules/55186 https://www.amazon.com/Bio-Tech-D3-50-50-000-200/dp/B00IAQUJH0/ref=sr_1_5?dchild=1&keywords=Bio-Tech+D3-50&qid=1626800584&s=hpc&sr=1-5 https://www.amazon.com/Nutrasal-Micro-D-3-Vitamin-D-3-1oz/dp/B00ESKNGCW/ref=sr_1_6?dchild=1&keywords=Micro+D3&qid=1626800521&s=hpc&sr=1-6 Micro D3 is a nanoemulsion of vitamin D3 that has a higher bioequivalence than the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 you should be taking. Once you have it on hand you can take 0.5cc/day in place of one capsule of the D3-50. The following notional graphic illustrates what's happening and what to do. If your actual 25(OH)D3 serum concentration is below the CH threshold the CH beast jumps ugly. As your 25(OH)D3 is att 216 nmol/L, your CH threshold is higher possibly up around 250 nmol/L so you need to load vitamin D3 at 100,000 IU/day until you elevate your actual 25(OH)D3 above the CH threshold for two days then start the taper down to a Maintenance dose that keeps you CH pain free. Hope this helps. Take care and please keep us posted. V/R, Batch Quote Link to comment Share on other sites More sharing options...
gail CRUTCHER Posted July 20, 2021 Share Posted July 20, 2021 Dear Batch, I am having difficulty understanding exactly how I need to use this formula. I tried it a few years ago and apparently didn't understand it then either! I have had CH for about 10 years and O2 is very successful for me, but I continue to have headaches. I was recently hospitalized with ian intestinal blockage that required emergency surgery. When I cam home, my headaches had ceased and once more I was jubilant that ti was CH free. Wrong. They returned within days of my return. Now, here I am at the young age of 80, seeing my life wasting aways with these headaches and would appreciate your help if possible? thanks once more, gail Quote Link to comment Share on other sites More sharing options...
spiny Posted July 21, 2021 Share Posted July 21, 2021 Hey Madam, What units is the '216' in? nmol/L or ng/ml? The values for the different units are very different. 216nmol/L is a low number. 216ng/ml is a high number. 1 Quote Link to comment Share on other sites More sharing options...
xxx Posted July 22, 2021 Share Posted July 22, 2021 (edited) Hey Gail, My wife is 84, loving life and kicks my backside if I don't keep up with her. She's been following the anti-inflammatory regimen treatment protocol since 2011. She was a 20 year episodic migraineur until then. Hasn't had a single migraine since. I track her labs like a hawk. Her 25(OH)D3 averages 115 ng/mL (287.5 nmol/L) and her serum calcium id always in the green. We're both in excellent health and don't take any Rx medications. The treatment protocol is simple safe and effective. Here are the basic steps. 1. Discuss this treatment protocol with your PCP/GP. Just be aware too many doctors are unfamiliar with vitamin D3 therapy so tend to be skeptical and say a vitamin D3 maintenance dose of 10,000 IU/day is too high/toxic. It's not their fault. Most Med Schools have eliminated nutritional medicine from their 4-year curriculum. When you see your PCP ask for labs of your serum 25(OH)D3, Calcium and PTH (Parathyroid Hormone). The following graphic illustrates the normal distribution of lab assays for their serum 25(OH)D3 concentrations at baseline before starting this treatment protocol and a second assay ≤ 30 days after starting it. The initial lab assays for serum 25(OH)D3, calcium and PTH are important. They provide a baseline to measure clinical progress in elevating your 25(OH)D3 serum concentration without going bust (too much) serum calcium, hypercalcemia. Around 1% of the population is already hypercacemic without taking any vitamin D3. You'll need to know if you're in this 1% category as it will require close medical supervision. 2. Pick up the supplements illustrated by brand and dose that I take and suggest to other CHers and migraineurs. I buy them from amazon. CHers who stick with these brands tend to have a higher response rate. You'll also need to add Micro D3 nanoemulsion illustrated below. I buy it from amazon.com. You'll take 0.5cc/day while loading vitamin D3. This nanoemulsion of vitamin D3 has a higher bioequivalence than the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 you should also be taking illustrated below. You start this treatment protocol with an accelerated vitamin D3 loading schedule taking two of the Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 cc/day of the Micro D3. You continue taking this loading dose until you experience a CH pain free response for two full days then start a taper down to a vitamin D3 maintenance dose of 50,000 to 100,000 IU/week Several of us have used this loading schedule and found it very effective. The rest of my post above to Madam applies. Remember to see your PCP/GP for the second set of labs for your serum 25(OH)D3, calcium and PTH. When you have the results in hand, please take the time to fill out the online questionnaire at the following link. You can add your lab data for calcum and PTH in the comments section. To start this survey, click on the following link:http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Take care and please keep us posted. V/R, Batch Edited July 22, 2021 by xxx Quote Link to comment Share on other sites More sharing options...
Madam Posted July 28, 2021 Author Share Posted July 28, 2021 On 7/22/2021 at 1:07 AM, spiny said: Hey Madam, What units is the '216' in? nmol/L or ng/ml? The values for the different units are very different. 216nmol/L is a low number. 216ng/ml is a high number. I called and asked and seemingly clueless as she said mg/ml but as she prescribes me the vitamin d in medical oil grade D-Cura 25.000ie ampules she won't prescribe me any more until I get it lowered. A huge spanner has been thrown in the works though, I am just home from the hospital where I spent 6 days. I have never had gallbladder problems in my life but it seems it had gone necrotic and had to have it removed in an emergency, I had a huge infection inside so had to stay in hospital. So besides being off the regimen now for 10 days plus (I stopped taking them as I felt ill 4 days before the ER) I now have also learnt that the body without a gallbladder has problems absorbing fat soluble vitamins (D, E, A and K) which presents me with new problems. I could cry... I need to start all over again and wonder what the impact will be on the vitamin intake. I just wish I had a doctor who knew the protocol that could talk me through it and make sure it is going right via blood tests etc. I only got these measurements as I had not been feeling well. Sorry for venting, I have had a rough time lately. Quote Link to comment Share on other sites More sharing options...
spiny Posted July 28, 2021 Share Posted July 28, 2021 Venting is most certainly allowed and very well understood here! Only having part of the picture is distressing I am sure. Lack of answers makes me crazy! This is why the units it was measured in are important:The two most commonly reported units of measurement are ng/mL and nmol/L, where 1 ng/mL = 2.496 nmol/L. As you can see, if using nmol/L, the number is 2.5 times as high as if you used ng/ml. Mg/ml is NOT used for this. It is nanograms. So, I am wondering if the units are wrong? Does your copy of your lab work show the unit measure? This is super frustrating. I do not find the D that you are getting in the ampules listed for US consumption, so you are elsewhere? I think that in the UK, it has to be prescription. I had gall bladder surgery about 3 years ago now. It has caused me no issues with the regimen. I am a bit careful not to eat fatty food often, but I have had no issues to date. And my D3 lab came back with a 2 point difference! That is all. My other numbers have not changed. So, ticking along just fine minus the thing! I really hope that you do just as well too. That had to be rough with the surgery and infection too! I hope your recovery goes smoothly! I suggest that you get or look at your hard copy of your lab work. If she is correct and it is that high and measured in ng/ml, you do need to lower it. If another unit, I doubt it. How is your head? Quote Link to comment Share on other sites More sharing options...
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