Batch

Hey Popoid, Absorption and metabolism of vitamin D3 are both important parts of its pharmacokinetics (what the body does to vitamin D3). The fascinating part of this discussion is the metabolism (hydroxylation) of vitamin D3 that provides the CH preventative effect takes place within neurons in our trigeminal ganglia. There are several moving parts to this mechanism of action that all start with absorption of vitamin D3 from the GI tract into the blood stream. The next step is to pass through the blood brain barrier (BBB) lining arteries and capillaries within the brain. Once the vitamin D3 molecule has passed through the BBB it enters neurons within our trigeminal ganglia where two enzymes hydroxylate (add a hydroxyl radical [OH] to form 25-Hydroxy vitamin D3 and a second hydroxyl radical to form 1,25(OH)2D3. This is where the real magic of vitamin D3 begins... 1,25(OH)2D3 is the genetically active vitamin D3 metabolite that attaches to a vitamin D receptor (VDR) on a genetic strand. This initializes what's called genetic expression. This is essentially where vitamin D3 unlocks the cell's genetic library of instructions and the cell starts to execute them. These instructions include signaling the cell the replicate, differentiate, form autocrine and paracrine signaling peptides and apoptosis (programmed cell death - what we hope happens to cancer cells). It's the autocrine and paracrine signaling that down regulates the expression of calcitonin gene-related peptide (CGRP) and other neuroactive peptides responsible for the neurogenic inflammation and pain we know as CH. The water soluble formulation of vitamin D3 available in Bio-Tech D3-50 or D3-5 may be responsible for the faster and more effective action in preventing CH. Hope this helps. Take care, V/R, Batch

Hey CoryAnn, Please see my post in the "Vitamins" topic here on the General board. It has the important new updates to the anti-inflammatory regimen. One of the most important steps in starting this regimen is to have your husband discuss it with his PCP/GP and to ask for the lab test of his 25(OH)D serum concentration. Take care and please keep us posted. V/R, Batch

Hey Kay, Be sure to take a copy of the anti-inflammatory regimen at the following link along to discuss with your neurologist and to ask for the lab test of your 25(OH)D serum concentration. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 25(OH)D is the first metabolite of vitamin D3 that's used to measure its status. Most CHers with active bouts of CH are vitamin D3 deficient/insufficient as illustrated in the following graphic from the online survey of 257 CHers taking this regimen to prevent their CH. This graphic illustrates baseline 25(OH)D serum concentrations before starting the anti-inflammatory regimen. It's a very safe bet your 25(OH)D lab results will fall under the above curve. If they do, starting the anti-inflammatory regimen will be an effective course of action. Over the years we've found this regimen is more effective than the standards of care recommended preventative, verapamil. It also works well if the CHer is also busting. Take care and please keep us posted. V/R, Batch

Hey S.E., CHfather has given you the download link for the anti-inflammatory regimen of vitamins and minerals that help prevent CH. This regimen is effective for both episodic and chronic CHers although chronic CHers may need a slightly higher vitamin D3 dose and responding 25(OH)D serum concentration for a favorable response. One of the first steps in this treatment protocol is to see your PCP/GP to discuss this regimen and to obtain the lab test of your 25(OH)D serum concentration. Data from the online survey of 257 CHers that's been running since December of 2011 indicate nearly all CHers in an active bout of CH are vitamin D3 deficient/insufficient... i.e., a 25(OH)D serum concentration less than 30 ng/mL. I'm in the process of updating this CH preventative treatment protocol, so here are a couple of the changes going into the next version. 1. Over the last few years CHers have reported the 12-Day accelerated vitamin D3 loading schedule of 50,000 IU/day vitamin D3 for 12 days plus the rest of this regimen is well tolerated and effective in elevating 25(OH)D serum concentration rapidly from 30 ng/mL up to 80 ng/mL, the target serum concentraion associated with a favorable response to this regimen. Accordingly, the next version of this CH preventative treatment protocol will eliminate the 4-week and 2-week loading schedules in favor of the 12-Day loading schedule. 2. I've recently switch vitamin D3 formulations from liquid soft gel to water soluble vitamin D3... in this case Bio-Tech D3-50 (50,000 IU water soluble vitamin D3 capsules). I switched to the Bio-Tech D3-50 in June while suffering from an allergic reaction to mold spores that knocked me out of CH remission. I'd titrated my vitamin D3 dose up to 50,000 IU/day using the liquid soft gel formulation and was taking 25 mg Benadryl (Diphenhydramine HCL) four times a day but it wasn't working... I was still getting slammed 3 to 5 times a night. I slept like a baby the first night after taking one of the Bio-Tech D3-50 capsules plus the rest of the anit-inflammatory regimen. I'm now taking one of the Bio-Tech D3-50 capsules every 5 to 7 days as my maintenance dose. This is also the least expensive vitamin D3 formulation at an average daily cost of 4.4 cents if taken every 5 days or 3.1 cents/day if taken every seven days. Accordingly, the next version of this treatment protocol will include comments about the advantages of taking the Bio-Tech D3-50. Take care and please keep us posted. V/R, Batch

Hey Popoid, We know what you're going through and the good news is it doesn't need to be that way. You're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH attacks. Download a copy of the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors and discuss it with your PCP when you ask for the lab test of your serum 25(OH)D. That's the serum level metabolite of vitamin D3 that's used to measure its status. The pain around your eye after the pain phase of a CH attack is called cutaneous allodynia, a pain response from stimuli which do not normally provoke pain. It is part of the cluster headache syndrome. Take care and please keep us posted. V/R, Batch

Onglamesh, Alexandrax, Depression and anxiety attacks are part of the cluster headache syndrome. Some CHers experience clinically significant depression. We know what you've been going through and the good news is it doesn't need to be that way. Nearly all CHers are vitamin D3 deficient and that deficiencies contribute to the frequency, severity and duration of their CH. Solve that vitamin D3 deficiency and the odds are high you'll solve your CH problem... depression too. My name is Pete Batcheller, a.k.a., "Batch." I'm a 74 year old retired Navy fighter pilot and long time CHer... chronic since 2004... except I no longer suffer from these terribly painful debilitating headaches. In October of 2010 having experimented with a combination of vitamins and minerals to reduce inflammation, I added 10,000 IU/day vitamin D3... I was mildly surprised when the frequency of my CH dropped from 4 CH/night to 1.5 after the first dose... I blew the first CH away with 2 minutes of oxygen therapy at flow rates that support hyperventilation... The half hit was so minor it went away before I could get to my oxygen... I was totally pain free the second night after the second dose... That very pleasant surprise blew me away. It's stayed that way ever since unless I do a burn down test of my 25(OH)D by stopping the vitamin D3 until I get hit... I know that sounds crazy... That said, I'm so confident in the CH preventative capacity of this regimen, I do this 3 to 4 times a year and never have more than one or two mild hits before returning to a blissful CH pain free status. I've an estimated 800 CHers taking what I call the anti-inflammatory regimen of vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors. I've run this treatment protocol in front of several vitamin D3 experts, endocrinologists, Integrative physicians and a few neurologists experienced in treating CHers. All think it is the best, safest, and most effective CH preventative we can buy... for roughly 55 cents a day if you buy the supplements at Costco or over Amazon... The results of this regimen have been published in the American Academy of Neurology journal Neurology in April of 2014. You can download the latest version of the anti-inflammatory regimen migraine headache (MH) and CH preventative treatment protocol at the following link. Be sure to share a copy with your PCP and in particular, your neurologist. This treatment protocol also contains the results from an ongoing survey of 215 CHers taking this regimen since December of 2011. Having your PCP and/or neurologist up to speed with this headache preventative treatment protocol will have you all singing from the same sheet music when you ask for the 25(OH)D, total calcium and PTH lab tests 30 days after starting this regimen. Henry Lahore, the brains and brawn behind the VitaminDWiki website posted this treatment protocol for me on 21 January, 2017. As of this morning readers of this post at VitaminDWiki had downloaded over 11,050 copies, a little over 17 copies a day so the word is getting out about the efficacy of this regimen to prevent CH… and migraines. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is not a joke and I don't sell anything. I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010. If you've any doubts about starting this regimen, click on the following VitaminDwiki link. It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors. http://is.gd/clustervitd If you’re still in doubt about starting this regimen, click on the links below to read posts by other CHers who started this regimen. I have hundreds more just like them. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/798/#798 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/#1425 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278 Please feel free to ask questions... Most CHers have them when starting this regimen... I'm here to help. I’d also suggest you order some Bio-Tech D3-5 (5000 IU water soluble vitamin D3 capsules) and a 12 capsule bottle of Bio-Tech D3-50 (50,000 IU water soluble vitamin D3 capsules from Amazon.com. It is proving to be more effective with greater bioavailability than the liquid soft gel vitamin D3 formulations. https://i.imgur.com/TtwD4qw.jpg Take care and please keep us posted, V/R, Batch

Hey Jimmy, How much vitamin D3 are you taking and have you had the 25(OH)D lab test lately? Most CHers taking the anti-inflammatory regimen need 10,000 IU/day vitamin D3 and an average serum 25(OH)D concentration response around 80 ng/mL for a CH pain free response. The following chart illustrates the normal distribution and cumulative probability of 25(OH)D lab results reported by 257 CHers in the online survey taking an average of 10,000 IU/day vitamin D3. The blue S-shaped sigmoid cumulative probability curve provides a good approximation of dose response as measured by serum 25(OH)D concentration. In simple terms, as 90% of CHers reporting in this survey responded at a 25(OH)D serum concentration of 120 ng/mL. What this curve tells us is if the CHer hasn't responded at a lower 25(OH)D serum concentration taking 10,000 IU/day vitamin D3, increasing the vitamin D3 dose above 10,000 IU/day for a higher 25(OH)D response will likely result in a significant reduction or complete cessation of CH. Take care and please keep us posted. V/R, Batch

Hey AZ, Even CHers who have been taking the entire anti-inflammatory regimen with 10,000 IU/day vitamin D3 and all the cofactors with a therapeutic 25(OH)D serum concentration around 80 ng/mL (me included) can experience "burn through" CH. The most common reason is an allergic reaction... An allergic reaction to CHers is like kryptonite to Superman. The first step if this is happening to you is to see your PCP/GP for the 25(OH)D lab test. If the results come back less than 70 ng/mL, I would increase the vitamin D3 dose. If the 25(OH)D lab test results come back greater than 80 ng/mL, an allergic reaction is the likely culprit. In that case, I start a week to 10-day course of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours throughout the day. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If driving during the day is a must, I wait until I'm home for the day then take 50 mg of Benadryl as I walk through the door and another 50 mg at bed time. If the Benadryl (Diphenhydramine HCL) helps reduce the frequency of CH, I would start looking for the allergen causing the allergic reaction and reduce my exposure to it as much as possible. Pollen and mold spores at usually the problem. That said, many people are allergic to dust mite poo. It's everywhere around the bedroom, mattress, pillows, sheets, pillow cases and bed covers. New pillows and a dust mite proof hypoallergenic mattress cover can help if dust mites are the problem. I've also found Bio-Tech's D3-50 (50,000 IU water soluble vitamin D3 capsules) to be more effective in preventing CH than the liquid soft gel formulations. One 50,000 IU capsule every 5 days (An average of 10,000 IU/day) should be effective in preventing CH. Take care and please keep us posted. V/R, Batch

Hey John, I'm painfully aware Medicare refuses to cover oxygen therapy for medicare beneficiaries with CH. We fought this non-coverage determination in 2009-2010 but lost the battle to a bunch of Big Government bureaucrats who never had CH much less treated a patient with CH. If you want to go with oxygen therapy, take up welding... Welder's oxygen comes from the same distillation process as medical oxygen. I've used it for over 8 years... I'm still here... Just don't tell the welding supply folks what you intend to do with the welder's oxygen. Your best course of action is to go back to your doctor and ask for the lab test of your serum 25(OH)D. The odds are high you're vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. Download a copy of the anti-inflammatory regimen CH preventative treatment protocol from the following link then take a copy to your doctor when you ask for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 That way you'll both be singing from the same sheet music when you come back after 30 days on this 10,000 IU/day vitamin D3 regimen for lab tests of your serum 25(OH)D, calcium and PTH. Take care and please keep us posted. V/R, Batch

Jon, Thank you for the kind words. I've been in touch with the Principal Investigator for the vitamin D3 migraine prophylaxis RCT. He and his team are working the final manuscript for publication. Once that's out of the way and they can find the funding, a follow-on RCT using a vitamin D3 physiological dose of 10,000 IU/day is on their list of things to do. There's a good reason why the mAb RCTs can't achieve better efficacy. When you consider the site of action are neurons within the brain that produce calcitonin gene-related peptide (CGRP) and mechanism of action they espouse is neutralization of CGRP, the first step in these two processes is getting the mAb into the brain. That's a very real problem Big Pharma has yet to solve. The maximum opening size through the tightly packed endothelial cells forming the blood brain barrier (BBB) is a molecular mass of 400 Da (Daltons). The mAbs have a molecular mass of 150 kDa (150,000 Da)... 375 times larger than openings through the BBB. If the mAbs cannot pass through the BBB to enter neurons throughout the brain, neutralizing CGRP within these neurons is a non-starter. My guess is the reduction in migraine days made possible with mAbs is due to reducing serum CGRP. For reference, vitamin D3 has a molecular mass of 385 Da so passes readily through the BBB and into neurons where it's hydroxylated by enzymes to 1,25(OH)2D3, the genetically active vitamin D3 metabolite. It in turn attaches to Vitamin D Receptors (VDR) at the genetic layer initiating the genetic expression that down-regulates CGRP expression... and in the process, prevents our CH and MH. Better living through chemistry... and molecular biology... That's my SWAG... and I'll stick with it until a better mechanism of action is found. Take care, V/R, Batch

Here's some good news on preventing migraines... Curr Med Res Opin. 2018 Sep 5:1-22. doi: 10.1080/03007995.2018.1519503. [Epub ahead of print] A randomized, double-blinded, placebo-controlled, parallel trial of vitamin D3 supplementation in adult patients with migraine. Gazerani P1, Fuglsang R1, Pedersen JG1, Sørensen J1, Kjeldsen JL1, Yassin H1, Nedergaard BS2. Abstract BACKGROUND: Vitamin D levels have been linked to certain pain states, including migraine. We investigated whether vitamin D supplementation would be beneficial for adult patients with migraine (ClinicalTrials.gov Identifier: NCT01695460). METHODS: A randomized, double-blind, placebo-controlled parallel trial was conducted in migraine patients (36 women and 12 men, 18-65 years of age). A 4-week baseline period was conducted before randomization to 24 weeks of treatment. Participants were assigned to receive D3-Vitamin® (n = 24, 18 women and 6 men, 100 μg/day D3-Vitamin®) or placebo (n = 24, 18 women and 6 men). Migraine attacks and related symptoms were assessed by self-reported diaries. The response rate (i.e., experiencing a 50% or greater reduction in migraine frequency from baseline to week 24), change in migraine severity, and number of migraine days were recorded. Changes in migraine-related symptoms, HIT-6TM scores, and pain sensitivity tests (pressure pain threshold and temporal summation) were also evaluated. Serum levels of both 25(OH)D and 1,25(OH)2D were assessed from baseline to week 24. RESULTS: The number of headache days changed from 6.14±3.60 in the treatment group and 5.72±4.52 in the placebo group at baseline to 3.28±3.24 and 4.93±3.24 by the end of the trial, respectively. Migraine patients on D3-Vitamin® demonstrated a significant decrease (p < 0.001) in migraine frequency from baseline to week 24 compared with placebo. However, migraine severity, pressure pain thresholds or temporal summation did not show a significant change. 25(OH)D levels increased significantly for the D3-Vitamin® group during the first 12 weeks of treatment. There was no significant change in 1,25(OH)2D. No side effects were reported or noted. CONCLUSIONS: D3-Vitamin® was superior to placebo in reducing migraine days in migraine patients. Larger studies are required to confirm that vitamin D3 might be one of the prophylactic options for adult patients with migraine. My Comments: Putting the results of this RCT in perspective, migraineurs taking 4,000 IU/day vitamin D3 experienced an average reduction of 2.86 migraine days/month while migraineurs taking the placebo experienced a reduction of 0.79 migraine days/month. Doing the math, migraineurs taking 4000 IU/day vitamin D3 experienced 2.07 fewer monthly migraine days/month than migraineurs taking the placebo. Doing a similar analysis of Aimovig (Erenumab), one of the two approved monoclonal antibody (mAb) migraine preventatives, using the same placebo-controlled study design with the same 3-month end point found it achieved a reduction in migraine days/month between 1.4 and 1.9 migraine days/month better than the placebo depending on the dose. Three months worth of vitamin D3 at 4,000 IU/day (5 cents/day) costs roughly $4.50 while three months of Aimovig at ~$600/month costs $1,800... You can do your own math on relative cost benefits... BTW... It was posts like this I made on Facebook that likely caused Facebook management to block my access... Take care, V/R, Batch

Take 10 of the Super D 1000 IU vitamin D3 capsules a day...

Where are all the photo's? V/R, Batch

Hey Matakarap, Don't wait... Start the anti-inflammatory regimen with 10,000 IU/day now. Download the treatment protocol from the following link and take a copy to your PCP to discuss when you ask for the lab test of your serum 25(OH)D. That way you'll both be singing from the same sheet music when you go back after 30 days on this regimen for lab tests of your serum 25(OH)D, calcium and PTH. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I'd also suggest ordering some Bio-Tech D3-50 (50,000 IU water soluble vitamin D3 capsules). You start this regimen with a 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days. After that, you can lower the vitamin D3 dose to one 50,000 IU vitamin D3 capsule every 5 days or one a week. You'll need all the other vitamin D3 cofactors listed in the treatment protocol. Even if you're CH pain free now, starting this regimen as soon as you've had the blood draw will help prevent the next CH cycle and... provide a huge number of health benefits... This regimen also works well with busting... Take care and please keep us posted. V/R, Batch

Hey Lfrsweeney, As I'm the CHer who developed the vitamin D3 regimen, you can download a copy of the latest posted version of this treatment protocol at the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Be sure to discuss this regimen with your primary care physician when you ask for the lab test of your serum 25(OH)D. That way you'll both be singing from the same sheet music when you come back for labs of your serum 25(OH)D, calcium and PTH after 30 days on this treatment protocol. Take care and please keep us posted. V/R, Batch