Anti-Inflammatory Regimen and Survey
Cluster headache is one of the most painful and disabling headache disorders known to man.   Recent results from two ongoing surveys of cluster headache sufferers indicate many may suffer needlessly from this terribly painful and disabling disorder due to an easily treated vitamin D3 deficiency. 

This post invites cluster headache sufferers (CH'ers) who have tried the anti-inflammatory regimen with vitamin D3 for at least one month, to take part in a survey.  It also provides the latest updated version of this regimen and dosing strategy.

If you've started the anti-inflammatory regimen with 10,000 IU/day vitamin D3 or more, and stayed on it for at least a month (some chronic CH'ers have taken six to seven weeks to respond), or you had a favorable or an unfavorable response...  PLEASE SEE YOUR DOCTOR IF YOU'VE BEEN ON THIS REGIMEN FOR AT LEAST A MONTH TO HAVE YOUR SERUM CONCENTRATION OF 25(OH)D MEASURED IF POSSIBLE.  WHEN YOU HAVE THE RESULTS FROM THIS LAB TEST, PLEASE TAKE THIS SURVEY.

If you've had the lab test for 25(OH)D done before you started this regimen please report the results in the survey as well...

Note:  You do not need to be a member of CH.com to take this survey.

Good people and fellow CH'ers of Clusterville (guests included), the anti-inflammatory regimen I began posting about over a year ago at the following link, continues to prove effective as a CH preventative for many of the CH'ers, episodic and chronic, who have tried it. 

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%.  240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH...  78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free.  Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours.  The average time to respond is five days.

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Rather than rely on a rough tally of responses from CH'ers who have tried this regimen any further, we now need to gather more specific information on efficacy and response times for this regimen as well as essential demographic and epidemiological information. 

This information is out there, and if you have tried this regimen, you have it...  We just need to harvest it efficiently.  Please take this survey.

We will use the data from this survey to generate a paper intended to gather support and the resources needed for a formal assessment of this regimen in a Level I, randomized, double blind, placebo controled clinical study. This is the gold standard for RCTs and the only type of study results that will influence the way neurologists treat this disorder.

The sooner we gather and present information on the safety and efficacy of this regimen to neurologists and headache specialists, the sooner more CH'ers all over the world will find what many of us have already experienced... the same relief from the terrible pain of our disorder.

I've patterned the questionnaire at the following link after the Cluster Headache Survey that 1134 of us took in December of 2008 and PlayDoh has used his IT wizardry and webmeister skills to place this survey on-line.

This survey will maintain your anonymity and guard your rights under the HIPAA Privacy Rule.  No names, usernames or addresses will be captured.  We will post the compiled results on both CH.com, ClusterBusters and VitaminDWiki when we've collected a sufficient number of responses, then update the results when more come in.

If you are a registered member of either site or a guest and you've tried the anti-inflammatory regimen, please take the time to click on the following link and take this survey.  We need your results either way, good, or other, in order to have an accurate assessment of this regimen's efficacy.

PlayDoh has designed this survey to let you quit at any time before you submit, then access it later where you left off, to finish the survey when time permits.

I've already taken this survey...  It took me less than five minutes... and I was checking all the options before I submitted...

If you've not tried the anti-inflammatory regimen to prevent your CH, I've explained it in detail below.

To start this survey, click on the following link:

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NEW
For non-members paste the following link between the "" quotes in your browser then replace the "(DOT)" with a "." period...  There are three of them to replace:

"www(DOT)esurveyspro(DOT)com/Survey(DOT)aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6"

If you experience problems taking this survey or want to comment about it, respond to this post.  If you want to make a comment about your response to this regimen, please make it to the original post at the following link:

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Thank You.

V/R, Batch


Basic and Complete Anti-inflammatory Regimen
Treatment Protocol and Dosing Guide

Updated 14 July, 2017

Disclaimer:  The following Anti-Inflammatory Regimen, treatment protocol and dosing guide to prevent cluster headaches are provided for information purposes only.  Discuss them with your primary care physician (PCP) or neurologist whoever is most aware of your overall medical health and other prescribed medications before starting this regimen.

*** NEW *** NEW *** NEW ***

CH.com members You can now download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link.  Be sure to share a copy with your PCP or neurologist.  That way you’re both singing from the same sheet music when you ask for the 25(OH)D lab test.   Henry Lahor posted this treatment protocol for me on his VitaminDWiki website 21 January, 2017.  As of the 14th of July, 2260 copies have been downloaded.

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For non-members, this site is free to join.  However if you're in a hurry, paste the following link in your browser and replace the "(DOT)" with a period "."  There are two of them.

www.vitamindwiki(DOT)com/tiki-download_wiki_attachment(DOT)php?attId=7708

If possible, have your PCP or neurologist schedule a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D before starting this regimen.  If not, don't delay, start this regimen then get the lab test.  You're very likely vitamin D3 insufficient/deficient anyway.  You'll also need a second set of labs for your serum 25(OH)D, total calcium and PTH 45 days after starting this regimen and a third set of these same labs 3 months after starting this regimen. 

You'll use this third set of labs to adjust your maintenance dose of vitamin D3 as needed to keep it at a therapeutic response range where you have no CH...  For most CHers this is a target 25(OH)D serum concentration of 80 ± 10 ng/mL.  Some CHers and in particular some chronic CHers and CHers with a BMI > 30 may need a higher maintenance dose of vitamin D3 to sustain a CH pain free response and this will result in a higher serum concentration of 25(OH)D.

This 25(OH)D lab test measures the serum concentration of 25-Hydroxyvitamin D, also called 25(OH)D, (calcidiol).  This is a metabolite of vitamin D3. 

The normal reference range for 25(OH)D in the US is 30-100 ng/mL, (50-200 nmol/L in the EU, UK and elsewhere.)  However, results from the online survey indicate CH'ers presenting with active CH before starting the anti-inflammatory regimen have tested at an average of 23.4 ng/mL, (71.75 nmol/L), min = 4 ng/mL, max = 47 ng/mL.   Moreover, CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 83.4 ng/mL. (208.5 nmol/L), min = 34 ng/mL, max = 198 ng/mL. 

What is interesting and also important to note is episodic CHers experiencing a favorable response to this regimen have an average 25(OH)D serum concentration of 75 ng/mL, (187.5 nmol/L), where chronic CHers experiencing a favorable response to this regimen have an average 25(OH)D serum concentration of 100 ng/mL, (250 nmol/L).  This means chronic CHers may need a higher maintenance dose of vitamin D3 than 10,000 IU/day in order to remain CH pain free.

At last count, data harvested from the online survey as of 31 December 2016, indicates 387 CHers have started the online survey. 215 participants completed required questions and submitted. Better than 82% of them experienced a significant reduction in the frequency, severity and duration of their CH and better than 55% of these 215 CHers experienced a complete pain free remission from their CH symptoms. 

What is even more encouraging is better than 90% of CHers completing this survey during the 2016 calendar year experienced a favorable response and better than 70% reported a lasting pain free response.  I attribute this increase in efficacy to the 12-Day and Two-Week vitamin D3 loading schedules and the addition of Benadryl (Diphenhydramine HCL) at 10 days to two weeks after start of regimen if there's been no reduction in CH patterns.

Similarly, data from 127 CH'ers who participated in the online survey of CH'ers using this regimen indicate a raw, year-over-year efficacy of 82%. (equally effective for episodic and chronic CH'ers).  60% experienced a sustained pain free response.

Taken at face value, this data clearly suggest a causal relationship between a vitamin D3 deficiency and cluster headache.

If you think your PCP or neurologist will have questions about this regimen, please feel free to take a printed copy of the suggested treatment protocol you downloaded or this post with you to the next appointment or email the link.

Anti-Inflammatory Regimen Supplements

I've modified the original or "Basic" anti-inflammatory regimen I started taking in Oct 2010 by swapping out the Kirkland calcium citrate for Kirkland Mature Multi.  The Mature multi contains a better formulation of the cofactors and slightly less calcium (220 mg).  I've also added Super K, to pick up additional vitamin K2 and a 3 month course of vitamin B 100 Complex. 

The 3-month course of vitamin B 100 complex addition came as a suggestion from Dr. Stasha Gominak, MD, A neurologist in Tyler, TX.  She's been using a vitamin D3 regimen similar to the anti-inflammatory regimen except she adds the vitamin B 100.  She's been treating patients with sleep, chronic pain and headache disorders with this regimen for over many years and is seeing results very similar to the anti-inflammatory regimen

The updated supplements are shown below by brand purchased from Costco here in the US for $55 or 37 cents a day for a five-month supply.  The vitamin B-100 complex is not shown.

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The basic daily dose is two (2) of the vitamin D3 liquid softgels, two (2) of the Omega-3 Fish Oil liquid softgels, one (1) of the magnesium softgels, one tablet of Mature Multi and one (1) of the Super K with advanced K2 complex softgels and (1) of the vitamin B 100 Complex tablets.

* New *...Studies have shown that taking vitamin D3 with the largest meal of the day can increase absorption with resulting serum concentrations of 25(OH)D increased by as much as 50% higher after two to three months than taking it on an empty stomach.  Accordingly, take this regimen of supplements with the largest meal of the day for optimum results.

For the CH'ers who don't have access to Costco or who live outside the US, I've listed the complete anti-inflammatory regimen below.  Most of these supplements are available online from amazon or iherb.

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Vitamin D3 Dosing Strategy:
The goal of this dosing strategy is to get you CH pain free as rapidly as possible.  This will require starting a vitamin D3 loading schedule followed by an initial vitamin D3 maintenance dose of 10,000 IU/day.

Several studies have shown that the healthy adult processes 25(OH)D at a rate equivalent to an intake of 3,000 to 5,000 I.U. vitamin D3 a day.  As the rate at which the body metabolizes vitamin D3 from all sources into 25(OH)D can and will vary, it is entirely possible that 25(OH)D and 1,25(OH)₂D₃ are being consumed as fast or faster than it's being metabolized from vitamin D3. 

Under these conditions, and with a 25(OH)D serum concentration below 30 ng/mL, (75 nmol/L), the body may be unable to build enough 25(OH)D reserves fast enough to reach a therapeutic level sufficient to prevent CH at a vitamin D3 dose of 10,000 IU/day in less than 30 days.

Over the past year we've found the following accelerated vitamin D3 loading schedules to be safe and effective in elevating serum concentrations of 25(OH)D much faster with shorter favorable response times than taking the anti-inflammatory regimen with only 10,000 IU/day vitamin D3.

Start by taking the basic regimen at 10,000 IU/day vitamin D3 on the first day.  If there are no reactions (rare) to any of the supplements, proceed with any of the following accelerated vitamin D3 loading schedules.  Be sure to take the rest of the anti-inflammatory regimen each day during this schedule.

***NEW***
12-day Vitamin D3 Loading Schedule
Take 50,000 IU/day for 12 days then drop back to an initial maintenance dose of 10,000 IU/day on day 13 - Fastest Loading Schedule

Two-Week Vitamin D3 Loading Schedule
Week 1.  50,000 IU/day vitamin D3 for one week.  Take all the other supplements
Week 2.  40,000 IU/day vitamin D3 for six (6) days then drop the vitamin D3 dose to 10,000 IU/day on the 7th day.  This will be your initial maintenance dose of vitamin D3.  Take all the other supplements and cofactors daily.    Second Fastest Loading Schedule

Four-Week Vitamin D3 Loading Schedule
Week 1.  20,000 IU/day vitamin D3 plus one (1) loading dose of 50,000 IU/week vitamin D3
Week 2.  20,000 IU/day vitamin D3 plus one (1) loading dose of 50,000 IU/week vitamin D3
Week 3.  15,000 IU/day vitamin D3 and no loading dose
Week 4.  15,000 IU/day vitamin D3 and no loading dose
Take all the other supplements and cofactors daily.  At the end of the 4th week, drop the vitamin D3 dose to your initial maintenance dose of 10,000 IU/day plus the other supplements and cofactors.

These three vitamin D3 loading schedules are safe, equally effective and should result in a rapid 25(OH)D response to therapeutic concentrations near 80 ng/mL with a significant reduction in the frequency, severity and duration of CH faster than at the maintenance dose 10,000 IU/day vitamin D3. 

The target serum concentration for 25(OH)D is 80 ± 10 ng/mL so the total loading dose can be adjusted at the rate of 100,000 IU vitamin D3 per 10 ng/mL of 25(OH)D response. 

Body mass index (BMI) has a significant effect on the 25(OH)D response. 

Metric BMI Formula - BMI = weight (kg) / height² (m²)

Imperial BMI Formula - BMI = ( weight (lb) / height² (in²) ) x 703

You can also find BMI calculators on the Internet at the following link.  All you need is your weight in pounds and height in inches or your weight kilograms and height in meters to calculate your BMI. 

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The normal BMI range in Kg/m² is 18.5 to 25 and this will require a normal total loading dose of 600,000 IU of vitamin D3.

Accordingly, if your BMI is "Underweight", <18.5, subtract 100,000 IU from the normal total loading dose.  If your BMI is "Over Weight," 25 to 30 add 100,000 to the total vitamin D3 loading dose.  If your BMI is "Obese," >30 add 200,000 IU to the total vitamin D3 loading dose.

600,000 IU may sound like a lot of vitamin D3, but it really isn't for a loading dose.  There are several studies where single doses of 600,000 IU of vitamin D3 have been given orally or as an IM injection with no adverse effects. 

This accelerated vitamin D3 loading schedule should result in an average 25(OH)D response of 60 ng/mL on top of the starting serum concentration.

This regimen can be taken any time of the day, but it's best taken with the largest meal of the day with the most fats. The fats help ensure maximum absorption in the GI tract.

If you have a known GI tract disorder, i.e., IBS, IBD, Crohn's or Ulcerative Colitis, you will need to consider taking vitamin D3 as a sublingual application to bypass the GI tract. 

You should also consult with your gastroenterologist or the physician treating you for this disorder before starting this regimen.  There are several studies linking these GI tract disorders to a low vitamin D3 status.  There are also studies showing improvements in these conditions with higher doses of vitamin D3 like used in this regimen.

The Vitamin D Council indicates these cofactors help in metabolizing vitamin D3 into 25(OH)D and 1,25(OH)₂D₃, (calcitriol), the active hormonal metabolite of vitamin D3. 

This regimen also aids in maintaining calcium homeostasis.  See the following link for more information on the vitamin D3 cofactors: 

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Vitamin D3 Maintenance Dose:  The maintenance dose of 10,000 IU/day as a therapeutic CH preventative for adults was selected for a number of reasons.  The first is continuous, long-term doses of 10,000 IU/day vitamin D3 have been found to be safe by a significant number of well constructed and appropriately powered clinical studies.  The second reason deals with variations in 25(OH)D response to dose of vitamin D3 between individuals and variations in 25(OH)D response due to comorbid conditions. 

If the 3 month lab test for 25(OH)D comes back > 100 ng/mL lower the vitamin D3 maintenance dose using 50 IU per pound of body weight per day or 110 IU per Kg body wieght per day as an initial dosing guide.   The GrassRootsHealth D* Action survey results from 2015 totaling over 6334 people taking vitamin D3 at various doses with regular 25(OH)D lab tests every 6 months found that 96% of the participants taking 10,000 IU/day vitamin D3 achieved a 25(OH)D serum concentration of 40 ng/ml or greater.   

Dosing Interval and Time of Administration:  Whether from oral supplements or dietary sources, vitamin D3 enters the bloodstream where most of it binds with the vitamin D binding protein (VDBP), a protein that carries vitamin D and its metabolites throughout the circulatory system. 

As serum vitamin D3 is hydroxylated to 25(OH)D3 each time it passes through the liver, its serum concentration drops rapidly resulting a serum half-life of 24 to 36 hours.  That makes a daily intake of vitamin D3 the optimum dosing interval as it will maintain  optimum levels of both vitamin D3 and 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D. 

The daily intake of vitamin D3 helps ensure an adequate vitamin D3 serum concentration after “first pass” through the liver as it is clear from the initial response times to this regimen, measured in hours in many cases, that molecules of parent vitamin D3 are entering target neurons within the brain and in particular the hypothalamus and trigeminal gangia along with 25(OH)D3, where sufficient enzymes are present to hydroxylate vitamin D3 to 25(OH)D3 and 25(OH)D3 on to 1,25(OH)2D3, the genetically active hormonal form of vitamin D3 that’s responsible for genetic expression.

Missed Doses:  The maintenance of serum concentrations of 25(OH)D is directly related to total vitamin D3 intake.  Although the daily intake of vitamin D3 maintenance dose ensures optimum serum concentrations of vitamin D3 and its first metabolite 25(OH)D, several RCTs have shown weekly dosing at 50,000 IU is almost as effective in maintaining optimum 25(OH)D serum concentrations as 7,000 IU/day.  Accordingly, if a dose of vitamin D3 is missed, it should be taken with the next regular dose.

Safety

The anti-inflammatory regimen is very safe and well tolerated. There haven't been any reports of CH'ers experiencing adverse reactions requiring attention by a physician since CHers here at CH.com started taking it in December of 2010.

Notes:
(1) Medication Interactions and Contraindications:

The best practice to consider before taking any over the counter supplement is to read the label and any available supporting documentation on drug interactions and contraindications.  Check the serving size.  In many cases, the serving size will be two tablets/soft gel capsules to get the dose shown on the supplement label.

The following are examples of drug reactions and contraindications associated with the supplements used in the anti-inflammatory regimen.  There are obviously others so read the supplement labels carefully:
 
     * Reactions to vitamin D3 are very rare as skin exposed to the UVB in direct sunlight produces vitamin D3 naturally. It is generally considered to be one of the safest vitamin supplements you can take. However, if you are allergic to sunlight, you have hyperparathyroidism or you suffer from sarcoidosis, do not start this regimen without consulting with your PCP or neurologist first. 

If you experience a reaction to this regimen including, but not limited to, an upset stomach and or loose stool for more than a day, swelling in and around the mouth or face, or an obvious allergic reaction, discontinue the entire regimen and contact your family physician. 

The best course of action in the event of a mild reaction or upset stomach is to use the process of elimination to determine which of the supplements is causing the problem. Start by taking only the vitamin D3 for a couple days. If there's no reaction, add the magnesium then each of the other supplements one at a time, every 3 to 4 days to determine what is actually causing the reaction.

   ** If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, its serum half-life can be in a range from 4.5 to 12 hours.  Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil.  Calcium gluconate is also used to treat reactions to oral verapamil. 

Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 to 12 hours.  Discus this regimen with your PCP, neurologist, or cardiologist in order to work out an optimum dosing schedule.

   *** If you are presently using blood-thinning drugs such as Warfarin or Coumadin for cluster headache or for a heart condition, vitamin K1 (the clotting vitamin) is generally contraindicated.  However, studies have found the vitamin K2 complex to be an effective stabilizer in anticoagulant therapy, proving beneficial in situations of over-anticoagulation or when the response to therapy has been variable.  There are also several reports and studies that indicate vitamin K2 complex has the capacity to improve bone mineral density and at the same time reduce arterial calcification.  The Vitamin K2 complex has two of the menaquinone analogs, (MK-4 and MK-7). 

Of the two forms of vitamin K2, (MK-4) appears to be more effective in these two roles but MK-7 has a longer half-life.  On top of that there are several reports and studies that try to rationalize the use of MK-4 over MK-7 or MK-7 over MK-4... This is why I've selected the Super K as it contains vitamin K1 plus the two vitamin K2 menaquinones, (MK-4 and MK-7).

As always, if you're unsure about taking the Super K with advanced K2 complex, see your PCP, neurologist, and or cardiologist as appropriate.

  **** Vitamin A (retinol) is an important part of this regimen as long as it's not taken in excess of the RDA...  Taking too much vitamin A can be harmful and interfere with vitamin D3...  A daily serving of carrots, spinach, or squash are a great source of beta carotene, a precursor to vitamin A.  A serving a day will meet your RDA...  A serving of chicken or beef liver a week will also meet most of your vitamin A (retinol) needs.

The rationale for taking vitamin A (retinol) is important.  It's essential for the second mode of vitamin D3 metabolism from the 25(OH)D in the blood serum into 1,25(OH)₂D₃, (calcitriol) that takes place in all the different types of body cells.  These cell types include heart muscle, skeletal muscle, smooth muscle, bone, skin, brain, nerve, and the list goes on. 

We're not sure at this point, but this mode of cellular metabolism of vitamin D3 into it's active metabolite may be responsible for the prophylactic effect on cluster headache.

(2) Safety: This regimen appears quite safe and well tolerated with many potential health benefits.  However, some physicians and CH'ers may be concerned about the apparent "high" dose of vitamin D3.  There are several studies that have clinically proven that the skin of a fair skinned adult clad in a bathing suit without sun block and exposed to the sun's UVB at midday, can generate 10,000 - 15,000 I.U. vitamin D3 (cholecalciferol) in as little as 15 minutes.

Researchers at GrassRootsHealth, a public health promotion organization, recently published the results of their D*action Project where 3667 people have been taking vitamin D3 and having their 25(OH)D levels tested every 6 months since 2008.  Participants also fill out questionnaires with each lab test in order to capture the essential demographic and epidemiological information. 

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439 of these D*action project participants reported taking vitamin D3 at doses up to and including 10,000 IU/day.  43 participants have had two or more consecutive tests for 25(OH)D while dosing on vitamin D3 at 10,000 IU/day.  As you can see in the graph illustrated on the GrassrootsHealth website shown below and used with their permission below, none of the 1600 participants dosing at 10,000 IU/day had lab test values for 25(OH)D anywhere near the lower threshold for vitamin D3 intoxication at 200 ng/mL, (500 nmol/L).

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A recent study by Garland, Heaney et al titled: Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention is based on the GrassRootsHealth D*action Project data.  It provides further proof that long term use of vitamin D3 at doses as high as 10,000 IU/day are very safe.  This study further concludes that: "Universal intake of up to 40,000 IU vitamin D per day is unlikely to result in vitamin D toxicity."

(3) Efficacy and Response Time:  Data from the online survey of 127 CH'ers who completed and submitted the questionnaire indicated 106 CH'ers (83%) both episodic and chronic, who have tried this regimen since Jan 2011 have experienced a significant reduction in the frequency and severity of their CH. 60% of the survey participants experienced a lasting pain free response as long as they stayed on this regimen.  Typical response times to this regimen range from less than 24 hours with the majority occurring by the end of the second week.  A few have taken longer than a month.  The following chart of response times after starting the anti-inflammatory regimen is based on current results from the online survey as of December 2016:

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The typical/average time course response to this regimen in terms of 25(OH)D concentration at given vitamin D3 doses is illustrated in the following chart developed by Dr. Robert Heaney, M.D.  I've overlaid his chart with color bands that represent 25(OH)D data and CH response collected from CH'ers here at CH.com.

Response times longer than 10 days may be an indication of a comorbid condition that may require medical attention.  Recent posts by CH'ers who have started this regimen indicate infections and allergic reactions appeared to be interfering with this regimen's capacity to prevent their CH. They reported that once these infections were properly treated, the anti-inflammatory regimen began to work.

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There have been a handful of CH'ers who took over a month to respond to this regimen and several clinical studies have shown it can take upwards of three months to elevate 25(OH)D levels from 20 ng/mL to 60 ng/mL, (50 to 150 nmol/L) at a vitamin D3 dose of 10,000 IU/day.  Moreover, chronic CH'ers who stop taking this regimen after going pain free for an extended period of use greater than six months while at a maintenance dose of 10,000 IU/day vitamin D3, experience a relapse with a resumption of CH in as little as a week.

(4) Comorbidities:  Some comorbid conditions may interfere with the capacity of the anti-inflammatory regimen to prevent CH.  Some of these medical conditions include, but are not limited to: cardiac, thyroid, parathyroid, renal, hepatic, and pancreatic insufficiencies.  Disorders of the small intestine and sub-clinical allergic reactions including sinusitis are also suspect. 

If you have one or more of these conditions, work with your PCP to make sure they are being treated.  This may help make the anti-inflammatory regimen more effective as a CH preventative.  We've recently had several CH'ers report having allergic reactions to spring pollen and this has caused an increase in CH activity.  Once treated with a first-generation anti-histamine like Benadryl (Diphenhydramine HCL) at 25 mg every 12 hours, the anti-inflammatory regimen can be more effective as a CH preventative.

Finally, as this regimen has many other health benefits beyond being 83% effective as a cluster headache preventative, it's best to stay on it as long as possible if not for life...  Many of us call it "A way of life."  You can also find a growing list of 80 medical conditions either prevented or successfully treated with doses of vitamin D3 ≥ 4000 IU/day at the vitaminDWiki web page titled "Proof that Vitamin D works" at the following link:

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The potential health benefits from taking the anti-inflammatory regimen are so compelling and so safe, I have my entire family taking this regimen...  That includes a scaled down version of this regimen for my seven grand kids at 50 IU vitamin D3 per pound of body weight a day... There's an 8th grand kid is still in my daughter's tummy, bathed in maternal vitamin D3 from this regimen since conception.  My niece is also in a motherly way and also taking the anti-inflammatory regimen.

Take care,

V/R, Batch

Question 4 needs to be made optional as it only has a list of states / provinces in the US and Canada.

An alternative would be to have an answer to indicate that the question is not applicable.

Hey Mike,

Good point.  I'll check with PlayDoh, but the survey tool appears to have some limitations.  It obviously supports states and provinces in the US and Canada but it has problems with some of the other countries like supporting Cantons in Switzerland. 

The reason we were trying to narrow the geographic locations down to the city level was two fold.  The first is to be able to show a map of the world with the location of CH'ers who have tried this regimen.  The second, is to do a cross walk between 25(OH)D levels before starting the regimen and geographic location for a rough correlation with the primary cutaneous source of cholecalciferol (vitamin D3), the UVB in sun light. 

Latitude and elevation play a significant role in the amount of UVB reaching the skin to generate vitamin D3.  Skin types play a significant role as well.  For example, native Nordic and Icelandic people tend to have fair skin that generates vitamin D3 more efficiently and store larger quantities of 25(OH)D than darker skinned Hispanic people would living in the South West US.

Hope that makes sense.

Take care,

V/R, Batch

so maybe the survey should include questions about skin color, ethnicity and race.

also Blacks are much darker skinned than Hispanics, yet no mention of Blacks.  Do Blacks not get CH's?

and Hispanics are not limited to residing in the SW USA.

Curious if Nordic Whites are more prone to CH's?

Please clarify as this is getting confusing  ;)

I'm afraid to try the Vitamin method. I have experimented with magnesium and B12 2 years ago and it kicked my cycle into overdrive! I had 6 a day and I was always twice a day. I'm in cycle now and I would love to try it but I am already having 4 a day. Do you have any info on B12 and the effects on ch. I always thought magnesium played a role. If I could blame the B12 I think I would try it.

Hey HD,

Good question, but I haven't a clue If vitamin B12 would help.  I can say I tried doubling up on Centrum Silver plus 2000 mg vitamin B12 a day when I was episodic... and if anything... my CH got worse...

There's little to fear about taking the anti-inflammatory regimen that contains vitamin D3.  It's effective for 70% of the CH'ers who try it.  It's also very safe as our skin can generate large quantities of vitamin D3 in as little as 15 minutes in mid-day sun clad in a bathing suit w/o sun screen.

Take care,

V/R, Batch

Batch,
       Ok I'm a believer! Day 3 and intensity is down. This cycle has been strange and I am looking forward to the end of this one. I'm on the basic but i could only find 2000iu D3 so I take 5 at a time..
       Anyway I appreciate the help, I was so unhappy with my treatment. At 480 mgof Verapamil my Blood pressure dropped to low. The answer I was given was to increase my salt intake.... Again thanks and I will keep you posted on my progress.

Batch,

Thank you so much for this. I started today and was lucky enough to have D3-10,000 IU sold at my local store. So one pill it is for me. Hopefully I see results as fast as hoosierdaddy :)

Hoosierdaddy, Trance,

Thanks for the posts...  When you've been on this regimen for at least a month, please take the survey.

Thanks again and please keep us posted.

V/R, Batch

LasVegas wrote on Dec 19^th, 2011 at 11:01am:

so maybe the survey should include questions about skin color, ethnicity and race. also Blacks are much darker skinned than Hispanics, yet no mention of Blacks.  Do Blacks not get CH's? and Hispanics are not limited to residing in the SW USA. Curious if Nordic Whites are more prone to CH's? Please clarify as this is getting confusing  ;)

Great idea. Wouldn't surprise me at all if the evil demon is racist. lol. But seriously, thats a very interesting question. Perhaps we could avoid the "race" part of it and ask on a scale of 1-10 how dark is your skin complexion?

Dark-skinned infants are particularly at risk for developing rickets as they require
increased exposure to sunlight to produce the same amount of vitamin D compared
to light-skinned infants.

I've also thought about the use of Light therapy aka phototherapy. Although I guess as long as you get Vitamin D, it matters not the source. Yet perhaps Light therapy might be effective for those who don't respond to supplements. Too bad they appear to be fairly expensive ($150 and up)

Here is some info regarding the safety of D3
newer evidence supports the conclusion that vitamin D is much safer then previously thought, particularly because of all the emergence research that shows benefit for vitamin D at higher levels than consumers were traditionally taking
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Dietary Source      Approximate Vitamin D₂ and D₃ Content*
Natural common dietary sources      
Salmon, Fresh Wild, 3.5oz (~100 grams)                 600-1000 IU of vitamin D₃
Salmon, Fresh Farmed, 3.5oz (~100 grams)         100-250 IU of vitamin D₂ or D₃
Salmon, canned, 3.5oz (~100 grams)                  300-600 IU of vitamin D₃
Sardines, canned, 3.5oz (~100 grams)                 300 IU of vitamin D₃
Tuna, canned, 3.6 oz (~100 grams)                         230 IU of vitamin D₃
Shiitake Mushrooms, fresh, 3.5 oz (~100 grams)      100 IU of vitamin D₂
Shiitake Mushrooms, sun-dried, 3.5 oz (~100 grams)      640 IU of vitamin D₂
Egg yolk, one                                          20 IU of vitamin D₂ or D₃
Fortified dietary sources      
**All cow’s milk (fortified), 250 mL                        98 IU of vitamin D₃
Infant formula (fortified), 250 mL                         100 IU of vitamin D₃
Margarine (fortified), 1 tsp                                 25 IU of vitamin D₃
Yogurt (fortified), 8oz (~230 mL)                        100 IU of vitamin D₃
Cheeses (fortified), 3.5 oz (~100 grams)                100 IU of vitamin D₃
Breakfast cereals (fortified), average serving size      40-50 IU of vitamin D₃
***Fortified plant-based beverage, 250 mL         80 IU of vitamin D₃

Batch,
      I'm still taking just the basic that you outlined. I started on the 21st of Dec. I am still having hitsat night 2 or 3 times.
      I like this regimen but I think I need to add something. Magnesium maybe.. I prefer this to Verapamil I have never noticed it did anything anyway. I need a break so I'm going to start a prednisone taper. Any advice would be appreciated.
Trance,
      Welcome, I'm sorry you have to be here with us, but you have found a group that understands. I hope your doing well. I'm on O2 now typing through it. Anyway good luck and I hope you found an abortive that works for you. I use imitrex stat pen and oxygen. I don't have hits when I take predisone but it has nasty side effects.

Hoosierdaddy,

Adding the extra magnesium to bring the total up to 400 mg/day is a good idea... and yes, I think this regimen is much better than verapamil for a lot of reasons...

Check your PM InBox.  I've sent you some additional information that may help.  Give that a try for a few days... and if no joy, then go for the pred taper.

Just remember you're shooting in the dark without a test for 25(OH)D...  With the results of this lab test in hand, you'll know where you are and how far to go to get your 25(OH)D level up and into the therapeutic range of 60-90 mg/mL (150-225 nmol/L). So far, all the CH'ers who've gone pain free on this regimen have tested in this range.

Take a look at the top 25(OH)D response curve for a vitamin D3 dose of 10,000 IU/day in Figure-1 in the attached study. You'll see from that response curve, if you started this regimen at 65 nmol/L and you've been on it for 10 days, you've got another 20 days to go to get into the therapeutic response range at 150 nmol/L (60 ng/mL).

Take care and please keep us posted.

V/R, Batch

---

Good People of Clusterville,

If you've tried or are still on the anti-inflammatory regimen and haven't taken this survey yet, please do so.  We need all the data we can gather on this method of preventing CH.

Take care,

V/R, Batch

Is there a time limit?  I would like to give it a couple of more weeks until I can tell if it's working for me or not...

thanks, John

Hey John,

Good question... There's no real time limit and waiting until your CH patterns stabilize will give us more data with greater resolution.  Go ahead and wait a few weeks before you take the survey.

Take care,

V/R, Batch

IndianaJohn wrote on Jan 11^th, 2012 at 7:27am:

Is there a time limit?  I would like to give it a couple of more weeks until I can tell if it's working for me or not... thanks, John

That's where I went wrong.  I had two PF days after my cycle started and I immediately claimed D3 was the culprit, however the cycle came back for another 3 weeks.  I took the survey and gave false results due to being a bit excited with two PF days. Today is the first day i've been PF in 3 weeks.  I busted using rc seeds (for the 3rd time this cycle) two days ago.  I got hit like a m-fer yesterday which is common after dosing, but today is just perfect (zero hits).  Now, the thing I don't know is it that the vitamin D regimen starting to kick in or did the busting actually work.  I did increase my calcium citrate to 1000 mg which I started yesterday.  I'm splitting that dose up twice a day.  I'm baffled, but please that i'm PF at the moment.  I won't say i'm out of the woods yet.
A beer test might be calling :).

Bump... 

We still need more respondents...  37 CH'ers have responded to this on-line survey so far and I know from the rough tally that well over 100 CH'ers posted a reply with their response to this regimen one way or the other.

If you've tried the anti-inflammatory regimen for at least 30 days, stopped taking it for some reason, or you had a favorable response, whichever applies... please take this survey with your assessment of its effectiveness.

Take care,

V/R, Batch

By my estimate, over 150 CH'ers have commented on their experience with the anti-inflammatory regimen...  So far, only 40 of you have taken this survey.

The only way we're going to be able to attract the attention of the medical community and neurologists in particular about the efficacy of this regimen, is to have a survey size as large as possible...  Having 100 to 150 responses to this survey will start the ball rolling...

Please take this survey if you haven't already done so.   If you don't complete this survey for some reason, you can always come back and finish it later as long as you don't hit the "submit" button.

Take care and thanks.

V/R, Batch

Ba-da-bump!  Just took the survey, even if it was to say that so far, no go on the vitamins for me, 2 months in.  I'm still taking them though, because dammit I wanna be cutting wood with a chainsaw when I get old(er)!   ;D

Ba-da-bing! 

Hey ANC, thanks for taking the survey...

I won't see a rollup from the survey for a while...  Have you had your serum 25(OH)D tested and what's your present dose of vitamin D3?

My chainsaw is almost as old as you are...  I bought it the same year the Mac came out.  I've had one of them since then as well.

Thanks again and hang in there...

V/R, Batch

Take

The neuro didn't want to hear about my vitamins, so I'll be having the test when I see my PCP at the beginning of June. 15,000 is as high as I've gotten, but truth be told I had to back off in the past week--stomach staged a rebellion.  So I'm back on 10,000 for now and given how I feel, I would be shocked if my 25(OH)D were even close to normal.

I'm pretty sure my doctor would rather prescribe high-dose D before lithium, which is starting to look like the next step for me.  Speaking of which, I've heard that an  a day keeps the doctor away--so not true.  ;)  Thanks for the well-wishes, Batch!

Quote:

The neuro didn't want to hear about my vitamins

Fire his @$$. He's a know-it-all.

Pfft, I fired that guy a while back.  Let's just say his note-taking skills were lacking.

Bump.

Bump

Ive been doing the regimen since and i'm still getting slammed. i am having around 6 CH a day right now all on  my right side. Verapamil and Topamax do nothing for me i'm taking 15,000IU D3, 500mg Calcium, Fish Oil 2400mg, and 400 magesium. I would still recommend this to anyone who suffers with CH ( so much success for so many ). I think its just i'm extremely unlucky to say the least, or i'm doing something wrong as far as the dosage. I don't know, Him so glad it works for so many people tho. so much better the feeling spaced out and constipated from prescription medications.

ive been taking since july 4th

Lydia - There are so many co-factors and co-morbid conditions that could be running interference, I can tell you that it's too soon to judge. It took me almost two whole months before I started to see improvement.

You might want to:

a) Visit an endocrinologist to make sure your body is able to properly metabolize the D3. Dysfunctional thyroid can be a major stumbling block.

and/or

b) Up your dosage to 20,000 iu / day with a 50,000 iu loading dose once per week.

Either way, you need to have your 25(OH)D serum level tested to see where you're at.

Lydia Nichole,

Sorry you're still having such a rough time...  You could be dosing correctly...  Have you seen your PCP for the lab test for 25(OH)D?  I've gone over all your posts and can't see you've gone in for this lab test.  Without it...  you're shooting in the dark.

I would increase the vitamin D3 dose to 20,000 IU/day and add a 50,000 IU loading dose once a week...  and then beat feet to my PCP for the 25(OH)D lab test.

You also need to read the last three posts Magnus put up.  Start at the following link, Reply #940:

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You may be suffering from a subclinical allergic reaction to some of the foods you're eating.  It's comorbid conditions like this that can interfere with the anti-inflammatory regimen making it ineffective in preventing your CH.

A trip to an endocrinologist or homeopathic physician to discuss your medical problems may be in order.

Take care and please keep us posted.

V/R, Batch

Thanks Brew...  You got the jump on me...  Good advise!

I noticed several people mentioning magnesium.

I tried 500mg daily magnesium supplements, usually right before bed. It resulted in a 10x fold increase in CH hits, so had to stop that. Magnesium is a vasodilator, while my CH responds well to vasoconstrictors, so maybe that's why.

During the time I was doing the magnesium, I was getting about ~1000mg of calcium and ~1000mg fish oil per day, too (for unrelated reasons). Was also out at the pool tanning once a week.

I haven't tried the D3 supplements yet, so I'll buy some today and see.

Palm,

You need the whole 9 yards of anti-inflammatory regimen supplements starting with the vitamin D3 listed in this thread if you have any expectations of a favorable response.  They're all essential for one reason or another...

You also need the lab test for 25(OH)D...  Without it, you're shooting in the dark with respect to an anticipated response time for this regimen.

Take care and please keep us posted.

V/R, Batch

Bump.

bump

Some thoughts about the magnesium part of this treatment.  I don't know how many people (especially women) are trying this regimen, but I have used the cheaper Costco calcium, magnesium oxide and zinc combo for years for bone protection. It's fine and economical if you have no stomach issues with it. But in my case, I found magnesium oxide and other commonly found forms of magnesium end up upsetting my stomach, working as a laxative and are poorly absorbed. When I switched to a chelated form of it, magnesium glycinate/lysinate chelate, my stomach issues improved immediately, and the absorption is much better. Some other issues aside from my CH have improved significantly as well. It's pricier, due to the Albion patent on these products, but it might be worth it to you if you are having less than optimal results with this regimen. I'm not plugging any brands here, but it's easy to research. Also, do your homework on chelated magnesium as it might apply to drug interactions, etc.   

No stomach issues here, but the notion of poor absorption is intriguing. I also cut my magnesium back to 250mg every other day due to some mild leg cramping issues I was having.

Brew wrote on Dec 1^st, 2012 at 12:44pm:

No stomach issues here, but the notion of poor absorption is intriguing. I also cut my magnesium back to 250mg every other day due to some mild leg cramping issues I was having.

I know what you mean about cramps.  Getting electrolytes balanced and absorbed is challenging.  I don't even know how much total calcium I'm really absorbing, when my drinking water is very likely quite high in calcium content.  I'm thinking the absorption of the vitamin D co-factors may play quite a role in how well the anti-inflammatory CH regimen works for each of us.

bump

got 25(OH)D level today = 17

Very hopeful with this low number that this regimen will prove very beneficial. I just came off a particularly nasty cluster, but rarely get more than a few weeks reprieve these last two years. 

I plan on staggering my Verapamil does as directed as it is excellent at controlling my BP and I dont want to cease taking it.

Ill report back in 30 days.

Hi Batch,
Thanks for the info!

I hope it's not the timely end of my CH period then this could work next time too..

Could you tell me the prevention or maintenance dose of D3 and co-factors to avoid the next episode?

My D level is 86.0 ng/mL (feb 19)
It was 35.0 ng/ML (jan 31) when i started the therapy..

I hope it was the reason that my CH (1-3 daily, 1.5 hours hardcore attacks) turned 1 strange small migraine in the night time when i sleep in the last 5 days. That means, no bloody and small eye and i dont need relpax already.

Thanx in davance!

I wish all the best to all of you..

77BP,

Thanks for the post and good question.  How much vitamin D3 have you been taking?  As you can see in the chart below, your 25(OH)D serum concentration is on target in the middle of the green zone at 86 ng/mL.

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If you were using one of the accelerated vitamin D3 dosing schedules, dropping back to 10,000 IU/day may be a good maintenance dose, but it would be wise to to see your PCP for a retest in 30 days to make sure your 25(OH)D serum concentration has stabilized.

However, if you've been taking 10,000 IU/day vitamin D3 the entire time, you may need to cut back your vitamin D3 intake to 5,000 IU/day and retest in 30 days.

Just be sure to take all the vitamin D3 cofactors including vitamin K2 (MK-7) and vitamin A at RDA.

Staying on a maintenance dosing schedule of vitamin D3 that maintains a 25(OH)D serum concentration around 85 ng/mL should make your next episodic CH cycle a non-event... i.e., you'll sail through it pain free.

Take care,

V/R, Batch

So the results of my D3 test, aka 25 (OH) D are in and the reading is 34 ng/ml. The doc's assistant called this "normal". I should add that this was from blood drawn before I began the 10K IU daily D3 etc. regimen on 2/15, which included a 50K bump on 2/22.

After 3 or 4 miraculously quiet days though I suddenly got a rude wake-up call from Mr. Beast Saturday night late. This happened to coincide with a visit from my girlfriend, the first in a week in fact, and I'm wondering if this had something to do with it as this was of course a visit with, er, All That Such A Visit Entails. I seem to recall a flurry of posts half a dozen years ago about such matters and their relation to CH, though no real conclusions.

Maybe my GF is a trigger. Or, um, er, that is, maybe it's A.T.S.A.V.E. Yikes.

Anyway, there was a less-intense hit the next afternoon and then last night nothing. But since I was concerned I went back on the full dose of Topamax yesterday (25 mg twice a day) so that may also be contributing. Still continuing the vitamins of course... we shall see.

David

Hey David,

You've brought up a good point...  All too often unknowing physicians will interpret 25(OH)D lab results as "normal" when the serum concentration is at the bottom of the normal reference range of 30 to 100 ng/mL...  and will not treat the condition...

The data we've collected so far indicates the CH'ers who have gone pain free on this regimen have all tested between 60 and 110 ng/mL.

Accordingly, with respect to cluster headache and the data collected so far on this regimen as reported lab test data, we need a 25(OH)D serum concentration of 60 to 110 ng/mL in order to go pain free... and remain that way...

Take care,

V/R, Batch

Thanks as always, Batch. Believe me, those vit'min bottles ain't goin' nowhere. Tomorrow will be two weeks. Will keep you posted for sure.

New here, but I'll certainly bump this thread as it seems interesting.
One therapy I'm using during this episode is water fasting... trying to reboot my system as it were. Six days in so far and feel reallly good when I don't get crushed. for me it's usually about forty minutes in duration. I did stop taking my prevent as I feel it's unsafe with nothing else going in, but as soon as I read this thread I went and picked up these suppliments, squeezed the liquids into a glass of water and sucked em down. Turned my stomach a little but If there's no horror show tonight then it's worth it, right?

Chuh, if you're experience is like mine, you'll never look back. Episodic since my teens, 2 cycles a year, 8-12 weeks long. At age 50 I started this regimen in its original form, been changnig it as Batch adjusted and tweaked it, I have been cycle free for almost 3 years. There's really something to this.

Joe

A bit more than just "something" as so many of us are going pain free by this approach, including me, which is simply wonderful and a whole lot more.

A vitamin D overdose can be dangerous.....and damage your kidneys.

my doctor wont even do the lab test he said take what the bottle says and no more. so i have no idea where i am at with my vit d. I do not want to take to much but really want to see if it helps. I have been taking everything on the regiment but only about 4000 d and ive been slammed with worst cycle ever. one interesting thing i wanted to bring up is I looked up vit d overdose and it said they treat it with steroids ,soooo sense i was getting hit so hard this cycle I started steroids about same time as regiment.  Makes me wonder if they treat overdose of vit d with steroids if I even absorbed the vit d at all?

Globi wrote on Mar 7^th, 2013 at 5:52am:

A vitamin D overdose can be dangerous.....and damage your kidneys.

An H₂O overdose can do the same thing.

What's your point? Do you believe we're talking here about intake levels that can cause an overdose?

Brew wrote on Mar 7^th, 2013 at 7:50am:

Globi wrote on Mar 7th, 2013 at 5:52am: A vitamin D overdose can be dangerous.....and damage your kidneys. An H2O overdose can do the same thing. What's your point? Do you believe we're talking here about intake levels that can cause an overdose?

Yes. This according to multiple sites in holland. And if you are overall healthy it might not mather. For me for instance it could be dangerous because i have a disease which is damaging my kidneys already.

just depends on who you ask about vit d. Like for instance the pharmacist at walmart that helped me pick the vitamins. when I told her how much I was going to take she looked at me like I was crazy. She warned me vit d is fat saluble , and not to take more then what the bottle recomends. My doctor said same thing.  So in other words the post of vit d being dangerous wasnt just a post out of the blue to tick you off . Having said that I'm still gonna take 10,000 a day . As soon as I go to different doc that will do lab test.

Balanchine wrote on Feb 25^th, 2013 at 6:10pm:

So the results of my D3 test, aka 25 (OH) D are in and the reading is 34 ng/ml. The doc's assistant called this "normal". I should add that this was from blood drawn before I began the 10K IU daily D3 etc. regimen on 2/15, which included a 50K bump on 2/22. After 3 or 4 miraculously quiet days though I suddenly got a rude wake-up call from Mr. Beast Saturday night late. This happened to coincide with a visit from my girlfriend, the first in a week in fact, and I'm wondering if this had something to do with it as this was of course a visit with, er, All That Such A Visit Entails. I seem to recall a flurry of posts half a dozen years ago about such matters and their relation to CH, though no real conclusions. Maybe my GF is a trigger. Or, um, er, that is, maybe it's A.T.S.A.V.E. Yikes. Anyway, there was a less-intense hit the next afternoon and then last night nothing. But since I was concerned I went back on the full dose of Topamax yesterday (25 mg twice a day) so that may also be contributing. Still continuing the vitamins of course... we shall see. David

I've noticed that my wife's facial lotions and her Chanel #5 can both instigate my rhinorrhea symptom, which leads to, which leads to.... Just a heads up from my perspective.
Take care

Globi, Horsegirl,

Vitamin D3 is the safest nutrient we can take... even at 10,000 IU/day... 

Our bodies produce vitamin D3 in the skin when exposed to the UV-B in sunlight.  The average adult with fair skin can generate 15,000 IU vitamin D3 in as little as 10 minutes exposure to summer sunlight around noon clad in a bathing suit without any sun block.

Moreover, our bodies also have built-in mechanisms to guard against vitamin D3 intoxication and will metabolize excess 25(OH)D into an inactive form of vitamin D3 that's eliminated in the urine.

Vitamin D toxicity is determined clinically by lab tests of total calcium serum concentrations above the normal reference range.  This condition is also frequently associated with another comorbid condition called hyperparathyroidism were one or more of the four parathyroid glands are involved with a parathyroid adenoma, a noncancerous (benign) tumor of the parathyroid glands.

All that said, too much of anything can cause health problems...  even water...  I recall there was a misguided young lady that took a radio station challenge to drink a gallon of water in less than 24 hours... She did and died from it.

The bottom line is simple... taking vitamin D3 at the dosing suggested in this thread is far safer and a lot more healthy for you than taking corticosteroids and many of the other standards of care pharmaceutical treatments for our disorder.  These pharmaceuticals only treat the symptoms of CH... not the underlying causes.

The most recent news letter from the Vitamin D Council made the following statements: 

"The upper limit (UL) for vitamin D, set by the 2011 Food and Nutrition Board, is 4,000 IU per day. This is defined as the highest level of daily consumption that causes no side effects in humans when used indefinitely without medical supervision.

The same board set the No Observed Adverse Effects Level (NOAEL) at 10,000 IU/day. The NOAEL is the dose at which there are no published studies showing any adverse effects of that dosage. As an aside, if there are any studies showing 20,000 IU/day is unsafe, I would like to see them.

Anyway, the Upper Limit is simply calculated from the NOAEL by dividing by a safety factor.  In vitamin D’s case, they divided the NOAEL of 10,000 IU/day by 2.5 to get the Upper Limit of 4,000 IU/day.

At the Vitamin D Council, we recommend that patients exceed the Upper Limit, but not exceed the NOAEL of 10,000 IU/day, unless they are under medical supervision or know what they are doing."

I'll interpret the comment "knowing what they are doing" as being smart enough to go in for the 25(OH)D lab test every 30 days for the first few months on this regimen until you reach a stable 25(OH)D equilibrium. 

The target concentration for 25(OH)D when taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 is 85 ng/mL.  That's well within the normal reference range for 25(OH)D at 30 to 100 ng/mL and dead center in the middle of the "green zone" 60 to 110 ng/mL where nearly all CH'ers have reported going pain free from their cluster headaches... and staying that way...

In my opinion, physicians who refuse to do a 25(OH)D lab test or support their patients taking 5,000 to 10,000 IU/day vitamin D3 or more while under supervision, are either sadly lacking in knowledge of vitamin D3 therapy, or they fear the loss of funding and perks from the Big Pharma, who would rather you're prescribed their very expensive and very invasive pharmaceutical treatments for your cluster headache... that are far less effective in preventing them.

If you want to read more about vitamin D3 and its health benefits as well as the disinformation campaign being waged by big pharma to discourage use of this essential nutrient, please see the following link:

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Take care and please don't let a clueless physician, or one with a hidden agenda, try to scare you away from taking supplemental vitamin D3 along with the rest of the essential cofactors...

V/R, Batch

@Batch

Too much is not good. It's as simple as that. Next to that i am a bit annoyed that I've seen many post about this saying it is the solution. I know a few people in this 'business' who are not in it for the money. It might be the solution for some people. Same with oxygen. It works for you. Great! But warn people as well to take this road together with a real doctor. Water is healthy. If you take a lot you can die.

Batch wrote on Mar 7^th, 2013 at 10:17am:

Globi, Horsegirl, Vitamin D3 is the safest nutrient we can take... even at 10,000 IU/day...  Our bodies produce vitamin D3 in the skin when exposed to the UV-B in sunlight.  The average adult with fair skin can generate 15,000 IU vitamin D3 in as little as 10 minutes exposure to summer sunlight around noon clad in a bathing suit without any sun block. Moreover, our bodies also have built-in mechanisms to guard against vitamin D3 intoxication and will metabolize excess 25(OH)D into an inactive form of vitamin D3 that's eliminated in the urine. Vitamin D toxicity is determined clinically by lab tests of total calcium serum concentrations above the normal reference range.  This condition is also frequently associated with another comorbid condition called hyperparathyroidism were one or more of the four parathyroid glands are involved with a parathyroid adenoma, a noncancerous (benign) tumor of the parathyroid glands. All that said, too much of anything can cause health problems...  even water...  I recall there was a misguided young lady that took a radio station challenge to drink a gallon of water in less than 24 hours... She did and died from it. The bottom line is simple... taking vitamin D3 at the dosing suggested in this thread is far safer and a lot more healthy for you than taking corticosteroids and many of the other standards of care pharmaceutical treatments for our disorder.  These pharmaceuticals only treat the symptoms of CH... not the underlying causes. The most recent news letter from the Vitamin D Council made the following statements:  "The upper limit (UL) for vitamin D, set by the 2011 Food and Nutrition Board, is 4,000 IU per day. This is defined as the highest level of daily consumption that causes no side effects in humans when used indefinitely without medical supervision. The same board set the No Observed Adverse Effects Level (NOAEL) at 10,000 IU/day. The NOAEL is the dose at which there are no published studies showing any adverse effects of that dosage. As an aside, if there are any studies showing 20,000 IU/day is unsafe, I would like to see them. Anyway, the Upper Limit is simply calculated from the NOAEL by dividing by a safety factor.  In vitamin D’s case, they divided the NOAEL of 10,000 IU/day by 2.5 to get the Upper Limit of 4,000 IU/day. At the Vitamin D Council, we recommend that patients exceed the Upper Limit, but not exceed the NOAEL of 10,000 IU/day, unless they are under medical supervision or know what they are doing." I'll interpret the comment "knowing what they are doing" as being smart enough to go in for the 25(OH)D lab test every 30 days for the first few months on this regimen until you reach a stable 25(OH)D equilibrium.  The target concentration for 25(OH)D when taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 is 85 ng/mL.  That's well within the normal reference range for 25(OH)D at 30 to 100 ng/mL and dead center in the middle of the "green zone" 60 to 110 ng/mL where nearly all CH'ers have reported going pain free from their cluster headaches... and staying that way... In my opinion, physicians who refuse to do a 25(OH)D lab test or support their patients taking 5,000 to 10,000 IU/day vitamin D3 or more while under supervision, are either sadly lacking in knowledge of vitamin D3 therapy, or they fear the loss of funding and perks from the Big Pharma, who would rather you're prescribed their very expensive and very invasive pharmaceutical treatments for your cluster headache... that are far less effective in preventing them. If you want to read more about vitamin D3 and its health benefits as well as the disinformation campaign being waged by big pharma to discourage use of this essential nutrient, please see the following link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Take care and please don't let a clueless physician, or one with a hidden agenda, try to scare you away from taking supplemental vitamin D3 along with the rest of the essential cofactors... V/R, Batch

And your last sentence is not okay. I know Goadsby, Watkins, and others personally.....as well as the top in europe and holland. They really care. They don't say to not try other things.

@batch

And you mean well. That is not the point. I did VERY well with the occipital nerve operation for one year. I did not post here to be very sure. For some it works and for others it doesn't.

After reading the posts on this board and others, I decided to give it a try.  I have a few questions...

Does this have a success rate when taken with Melatonin?
Can I take this while using Verapamil?
Does it work the same for women as it seems to do in men?
Do I take the vitamins all at once or small doses throughout the day?
What brands do you NOT recommend?

I've been suffering for more then 30 years.  Suffering since the age of 16, diagnosed at 22.  Found Dr. Kudrow at age 25.  Unfortunately I changed insurance and my new Dr. is clueless.  I'm giving him lessons and he is reluctant to treat me the same way as Kudrow. 

Keeping my fingers crossed...

Hey KTB,

Good questions.  We've not established any statistically significant links between the effectiveness of this regimen while taking melatonin, verapamil or both... 

So far there haven't been any comments in this area either...  That said, taking calcium supplements can decrease the effectiveness of verapamil...  Talk with your neurologist or PCP about taking calcium supplements with verapamil. 

I've read were cardiologist have given their heart patients calcium supplements while they're also taking verapamil... What they suggest is taking the calcium supplement and verapamil 12 hours apart to minimize any impact on the verapamil.

The only class of cluster headache medications that can lessen the preventative capacity of vitamin D3 are corticosteroids.  That said, vitamin D3 doesn't appear to affect a prednisone taper.  If you have questions about taking vitamin D3 with a prednisone taper, ask your PCP or neurologist.

I've checked the online survey data and this regimen is equally effective for both men and women...  It is also equally effective for both episodic and chronic CH'ers... 

Although the episodic types have a very slight edge by a few points on efficacy... this can easily be due to the confusion between a valid response and end of cycle.

Several studies have found it's best to take the vitamin D3 with the largest meal of the day or the meal with the most fats...  As vitamin D3 is lipophilic (it likes fats), absorption can be significantly higher taking it with the largest meal of the day.  It's also a good idea to take the vitamin D3 with the Omega 3 Fish Oil for the same reason.

The rest of the supplements can be taken at any time... I've been taking them all at once just so I don't forget...

As far as which brand of supplements... try to stick with supplements made by big name brands here in the US.  Nature Made and Nature's Bounty are both reputable US brands... but there are many other big name brands...  and some of their supplements are made in the EU... 

Read the label and if you still have questions, there's usually a number to call either on the bottle or the manufacturer's web site.  I would avoid buying supplements made in China.

Playing Ding-Dong School with new or narrow-minded neurologists is a problem most CH'ers will face at one point or another... 

The mark of a good neurologist/headache specialist is a willingness to involve the CH'er in the selection of candidate therapies, explain the risk:benefit ratio of each including potential side effects and to be open to patient suggested treatments.

One of the first things you should do is get the lab test for 25(OH)D.  Knowing your serum concentration of this vitamin D3 metabolite is important as it will give you an indication how long it can take for this regimen to become effective as a CH preventative.

'Hope this helps and when you do have results to post, please use the other thread at the following link:

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Take care,

V/R, Batch

Batch wrote on Mar 10^th, 2013 at 12:09am:

Hey KTB, Good questions.  We've not established any statistically significant links between the effectiveness of this regimen while taking melatonin, verapamil or both...  So far there haven't been any comments in this area either...  That said, taking calcium supplements can decrease the effectiveness of verapamil...  Talk with your neurologist or PCP about taking calcium supplements with verapamil.  I've read were cardiologist have given their heart patients calcium supplements while they're also taking verapamil... What they suggest is taking the calcium supplement and verapamil 12 hours apart to minimize any impact on the verapamil. The only class of cluster headache medications that can lessen the preventative capacity of vitamin D3 are corticosteroids.  That said, vitamin D3 doesn't appear to affect a prednisone taper.  If you have questions about taking vitamin D3 with a prednisone taper, ask your PCP or neurologist. I've checked the online survey data and this regimen is equally effective for both men and women...  It is also equally effective for both episodic and chronic CH'ers...  Although the episodic types have a very slight edge by a few points on efficacy... this can easily be due to the confusion between a valid response and end of cycle. Several studies have found it's best to take the vitamin D3 with the largest meal of the day or the meal with the most fats...  As vitamin D3 is lipophilic (it likes fats), absorption can be significantly higher taking it with the largest meal of the day.  It's also a good idea to take the vitamin D3 with the Omega 3 Fish Oil for the same reason. The rest of the supplements can be taken at any time... I've been taking them all at once just so I don't forget... As far as which brand of supplements... try to stick with supplements made by big name brands here in the US.  Nature Made and Nature's Bounty are both reputable US brands... but there are many other big name brands...  and some of their supplements are made in the EU...  Read the label and if you still have questions, there's usually a number to call either on the bottle or the manufacturer's web site.  I would avoid buying supplements made in China. Playing Ding-Dong School with new or narrow-minded neurologists is a problem most CH'ers will face at one point or another...  The mark of a good neurologist/headache specialist is a willingness to involve the CH'er in the selection of candidate therapies, explain the risk:benefit ratio of each including potential side effects and to be open to patient suggested treatments. One of the first things you should do is get the lab test for 25(OH)D.  Knowing your serum concentration of this vitamin D3 metabolite is important as it will give you an indication how long it can take for this regimen to become effective as a CH preventative. 'Hope this helps and when you do have results to post, please use the other thread at the following link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Take care, V/R, Batch

I hope many people will benefit from this. I have seen a few neurologist specialist in headaches. In my opinion they really care. The problem starts with neurologist/specialists who do not know what they talk about. I have a friend who is an internist ( general specialist) who thought morphine would help.....

Regards,

Globi

Hey, I have been taking the regimen for 10 days now. I started the regimen last week (thursday 28th march), I took the D3, Fish oil and calcium for the first 4 days, then added the rest of the supplements when i received them in the post from Iherb.com. After a few days (4 or 5) I felt a bit of pain on my left temple (my pain has always been on the right prior to this) although that pain was mild. I still had the attacks on the right. I am still taking Zomig (zolmitriptan) before i go to sleep because my worst attacks occur between 45 minutes to an hour after I fall asleep. The attacks i get during the day have always been quite mild but they are definitely milder now since i started the regimen. One night about 5 nights ago i forgot to take the Zomig and to my surprise i didn't get an attack at all, although i could feel an attack coming on strong as i was going to bed the next night. After reading this evening another post by Batch on a different thread, i will increase the D3 to 20000IU per day for the next few weeks and take a once weekly loading dose of 40 to 50000IU, as well as increasing the magnesium to 600IU.
I got my doctor to take my D3 level before i started the regimen, i haven't gone back to her yet to get the results but will call her after the weekend. i hope to get the level taken again in a month or so.
I'll keep you all informed of the progress.
Thanks again Batch for the regimen and thanks all for the support that was addressed to me and the support felt for and from all CHers on the this forum.
:)

I started taking a VERY small dose of vitamin D, calcium and krill oil at the start of my cycle on March 20.  I also dosed twice with RC seeds.  I'm not sure if it was one or the other or the combination of both, but I've been PF now for almost two weeks!

PF wishes,

Jeannie

Hey Jeannie,

Great news...  It doesn't really matter what was responsible for the pain free response as long as you're pain free.

That said, if you're really curious...  stop taking one or the other for a few days and see what happens.

I know that may sound silly, but at some point, you'll need to know if it's one, the other or both.

If it was the vitamin D3 that's preventing your CH, the symptoms will return in as little as 12 to 24 hours...  Again, no big thing... just double the dose of vitamin D3 and you'll go pain free again just as fast.

Take care and please keep us posted.

V/R, Batch

Batch, since I've been on the vitamin regimen for a bit now - 6 weeks I think - but have also been taking Topirimate I was unsure how to answer the questions on the survey as to whether I thought the vitamins were preventing my headaches. Advice?

As of a few days ago I decided to see if my cycle had ended so stopped the Tope.  No pain so far, which knowing my history leads me to think I've come out of the cycle. I'll of course continue the vitamins and report from time to time on progress.

Thanks.
David

Hey David,

Great to hear you're pain free... and good question.  We put a question in the online survey for episodic CH'ers that asks, "Where, in your "normal" episodic cycle, did the response to the anti-inflammatory regimen occur?"  The answer is broken up into 10 parts with "1" being the cessation of CH symptoms occurred in the first tenth of the normal cycle and "10" being the cessation of CH symptoms occurred at the end in the last tenth of the normal cycle.

We also have a question about the response time...  "How long after starting this regimen did you experience a favorable response?"

In addition, if Topirimate has been 100% effective in preventing your cluster headache, then it's hard to tell if the answer is A, B, or A+B. Make a comment in the comment section of the survey to that effect.

However, the average efficacy of Topirimate is listed well below 50% so I'm inclined to say the complete cessation of your CH symptoms is likely due to the vitamin D3.

Accordingly, answer the efficacy question as "Yes", but be sure to answer the question "when did the cessation occur within your normal cycle" and list Topirimate as a CH med you're presently taking.

The best way to find out if this regimen is responsible for the cessation of your CH symptoms and it's not the actual end of cycle... is to stop taking the anti-inflammatory regimen for a week to 10 days or until you start feeling the return of your cluster headache symptoms, which ever occurs first, then restart the complete regimen with a double dose of vitamin D3 (20,000 IU) on the first day. 

I realize this might sound crazy...  but I've done it at least four times since I developed and started taking this regimen in Oct of 2010...  Hmmm...  I guess that means I'm crazy...

That said, I'm a chronic type so all four times resulted in a resumption of my cluster headache symptoms in a week to 10 days...  These symptoms subsided rapidly as soon as I got back on the anti-inflammatory regimen.

There's two things to take away from this discussion.

1.  The anti-inflammatory regimen isn't a cure for cluster headache...  but it works for 80% of the CH'ers who try it and it's equally effective for episodic and chronic CH'ers.

2.  Knowing the anti-inflammatory regimen is actually responsible for preventing your cluster headache is a real confidence builder.  It's also a comforting feeling knowing that taking a few vitamins and minerals actually prevents cluster headache... and improves your health at the same time with no adverse side effects. 

Finally, although it's not an option for chronic CH'ers who need to stay on this regimen 100% of the time, episodic CH'ers would be well served doing the same thing.

Take care and thanks again for the question.

V/R, Batch

Hi all, I have been on the regimen for 18 days now. The 25(OH)D results of the test done before I started the regimen shows a reading of 41 nmol/L. I have been taking 20000iu D3 (instead of 10000) for the last 5 days, On one day last week I took a loading dose of 50000iu D3 and that day I did not have a serious attack as I would usually have had. I have also increased the Magnesium to 600 every day. I would like to take 50000iu D3 for a few days in a row, Is that OK?

"Vitamin D toxicity is determined clinically by lab tests of total calcium serum concentrations above the normal reference range.  This condition is also frequently associated with another comorbid condition called hyperparathyroidism were one or more of the four parathyroid glands are involved with a parathyroid adenoma, a noncancerous (benign) tumor of the parathyroid glands."

--Hello Everyone,

I'm new here, but have spent the last few weeks reading through these posts. (There's a lot of info!)

Background - 2006 had a parathyroid adenoma removed. Then in 2012 my hyperparathyroidism came back with a vengeance. In June I was diagnosed with parathyroid carcinoma, had the parathyroid removed, some muscle tissue and a thyroidlobectomy. 
I've never had any issues with headaches until late February and I couldn't figure out what this beastly and fast headaches were until diagnosed by my PCP as having CH.  After reading more here I'm beginning to wonder if they are related in some way.
I did speak with my PCP about D-3 regimen and she advised not seeing an issue with it.
However, I am allergic to fish and cannot take fish oil supplement, so I have substituted flax-seed oil for the omega-3 (though I know they are not diriviatives of the same omega-3).  PCP put me on a 9-day prednisone taper which has helped, yesterday was the last day and last night I woke up with a shadow - I can feel the shadow there now. :( 

My questions are as follows - If I can't take the fish oil and substitute it with flax-seed oil, will it still be effective?
Also, any further information on how hyperparathyroidism may or may not play a role in CH?  -I've had difficulty finding information anywhere else, maybe I'm just not very good at researching!

Very happy for all the folks who are PF on this regimen and many, many thanks for everyone's contribution on this board it's made a scary situation not so scary any more!

Hey DR,

Great questions...  For starters, hyperparathyroidism may very well play a role in CH... although the primary culprit is more likely a vitamin D3 deficiency.

The come-down or taper off prednisone is always a bummer for cluster headache sufferers (CH'ers)...  The beast usually comes back with a vengeance... 

Prednisone is really only effective as a transitional preventative until you titrate up on another preventative like verapamil...  Staying on it too long has some onerous side effects.

I loved prednisone because it kept my CH under control... unfortunately it was slowly destroying my endocrine system... 

Knowing what I know now... I'll never take it again. Instead, I load up on vitamin D3 calcium, and the vitamin D3 cofactors...

Omega 3 Fish Oil isn't a critical component of the Anti-Inflammatory regimen... It has well known anti-inflammatory properties and it aids in vitamin D3 absorption... and that's a good reason to take it.  However, that's as far as it goes...  It's not on the critical path to preventing CH.

If your thyroid was surgically removed, you were likely prescribed a synthetic thyroid hormone as a replacement therapy... 

You should have also been prescribed vitamin D3 and calcium...  See:

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Unfortunately, there's no such hormone therapy for hypoparathyroidism... your remaining three parathyroid babies went out the the thyroid bath water...  That said, the tradeoff between removing the thyroid containing the parathyroids to cut out the cancer and the resulting hypoparathyroidism was a good one.  You can live with hypoparathyroidism...

The parathyroid hormone (PTH) signals the kidneys to metabolize serum 25(OH)D into 1,25(OH)2D3 that's needed to pull calcium from the gut to maintain bone mineral density (BMD) in what's called calcium homeostasis.

Fortunately studies have shown that people with with postthyroidectomy hypoparathyroidism actually experience an increase in BMD... See the following study:

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It's also fortunate, that 80% of the vitamin D3 metabolized to 25(OH)D in the liver is metabolized extrarenal (outside the kidneys so no PTH is needed) at the cellular level in the peripheral path of vitamin D3 metabolism to 1,25(OH)2D3... 

This is the autocrine mode of vitamin D3 metabolism we think is responsible for the cluster headache preventative effect.

10,000 IU/day Vitamin D3 and 500 mg/day calcium along with the vitamin D3 cofactors: 400 mg/day magnesium, 10 mg/day zinc, 1 mg/day boron and vitamin A at RDA should be sufficient to help prevent your cluster headaches...  At least you'll have an 80% probability of a favorable response...

If your PCP sees no issue with vitamin D3 therapy, that's great! Ask her for the lab test for 25(OH)D to confirm the vitamin D3 deficiency then start the Anti-Inflammatory regimen less the Omega 3 Fish Oil.

Regarding your research on the use of vitamin D3 as a preventative for cluster headache...  it's spot on...  You won't find any other sources of info on this topic.  This site and a couple related cluster headache sites are the only source of information on the anti-inflammatory regimen, it's efficacy in preventing cluster headache and the causal relationship between a vitamin D3 deficiency and cluster headache.

I'm working on changing that, however I still need additional survey information from CH'ers who have tried this regimen.

You'll find the latest info on the Anti-Inflammatory Regimen supplements, dosing and vitamin D3 dosing strategies along with drug interactions and contraindications at the following link:

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This link also contains another link to the survey when you've been on this regimen for at least a month and had a second lab test for 25(OH)D.

Take care and please keep us posted.

V/R, Batch

Hi, Day 21 on the regimen. 3 days ago i took 50000iu D3 and that night I did not take the zolmitriptan i usually take and got no attacks  :) , then the next day i took 40000iu D3, again no attacks, yesterday i went back to the normal 10000iu D3 and again no attacks  :) . I have now been pain free for 3 days YIPPEE YIPPEE YIPPEE. It seems the D3 regimen is working for me, i feel like i have wings and living normally again without the pressure and fear of knowing that an attack is surely around the corner, although i know it's only been a couple of days PF so i can't say for sure but for the last few years my spring attack would have lasted until the end of may or even until sometime in june. Will keep you up to date with progress. Thank you so much batch.   :)

Hey Thierry,

Great news!  I know that wonderful feeling...

Vitamin D3 loading doses like that will usually jump-start a rapid buildup of 25(OH)D and that's likely what's responsible for your pain free response. 

Try to see your PCP or neurologist to report your results and get the lab test for 25(OH)D as soon as possible so you'll know the threshold serum concentration for your pain free response.  Then, in 60 days at 10,000 IU/day vitamin D3, and as long as you remain pain free, try to get a second lab test to see where you stand.

If the beast starts slinking around at a vitamin D3 dose of 10,000 IU/day, you may need a maintenance dose of 15,000 IU/day in order to maintain a therapeutic 25(OH)D serum concentration.

The other thing to watch for are viral and bacterial infections...  Upper respiratory infections, like colds.  Although vitamin D3 supercharges your immune system making infections like colds and flu less likely, they can and will occur. 

When infections like this do occur, your immune system will gobble up most of the available 1,25(OH)2D3 and lower the 25(OH)D substrate concentration to the point there may be insufficient concentrations of these two vitamin D3 metabolites to remain CH pain free.

Accordingly, at the first sign of a viral or bacterial infection, or even an allergic reaction, you may want to consider doubling the maintenance dose of vitamin D3 for a week to 10 days.  Discuss this with your PCP or neurologist.

Take care and please keep us posted.

V/R, Batch

Hi Batch, 4 days PF now  :) . You are a walking encyclopedia Batch. I will try to get my doctor to do a D3 blood test again. As i posted above a few days ago, I got the test done before i started the regimen and the reading was 41nmol/L.
It is lucky that I very rarely get respiratory infections like colds and flu but i will keep in mind what you're saying about the depletion of D3 when one happens.

Batch, I've just discovered your regimen and went to Sam's and bought the D3 and fish oil, what is the purpose for each ingredient other than the D3? Would just the D3 work to hold off the CH's?

Hi JoeV, the answer to your question is in the link below, the other supplements in Batch's regimen are cofactors, they help in the absorption of D3. All the best.

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Hope this helps,   :)

Just a caveat, I think that people are a bit too accepting of the 'vitamin d council' as an impartial expert. I looked through their form 990's (last year available: 2010) and to me, it looks like an external marketing department for a handful of supplement companies. Just look at their list of major sponsors- all supplement companies.

Their expense break down shows that they do no research (at least in 2010)- they simply maintain a website (at $80k/year!) and publish a monthly newsletter promoting vitamin d.

[quote author=5F43424E5959522B0 link=1324046404/73#73 date=1366495016]Hi JoeV, the answer to your question is in the link below, the other supplements in Batch's regimen are cofactors, they help in the absorption of D3. All the best.

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Hey JoeV,

Thierry is spot on...  If you got any other questions about the anti-inflammatory regimen, please shoot me a PM.

Hoss, you've got a point.  The vitamin D Council is funded by nutraceutical firm donations...  However, it's nothing they try to hide...  Big pharma does a lot worse...

The Vitamin D Council is a 501(c)(3) nonprofit organization just like CH.com, with a mission to educate the public on vitamin D, sun exposure and health... 

It doesn't do studies per se, but the founder, Dr. Cannell, MD is well published having conducted several RCTs involving vitamin D3 where he's teamed up with some of the brightest minds in vitamin D3 research...

The Vitamin D Council brings a voice from practicing physicians, endocrinologists, Integrative and Homeopathic physicians with years of clinical experience treating patients with vitamin D3 deficiencies and other conditions resulting from vitamin D3 deficiencies...

If we listened to the Food & Nutrition Board at the Institute of Medicine, a quasi big govenment organization staffed with tenured professors of nutrition from academia and big government bureaucrats from DHHS, none of whom have ever had any clinical practice or experience treating patients with a vitamin D3 deficiency, we would all be taking no more than 400 IU/day vitamin D3...  and that wouldn't do squat diddly for our cluster headaches... but the big pharma, who exert special interest influence over DHHS, the FDA and too many elected politicians...  would love it...

If you want to see a treasure trove of good objective info on vitamin D3, go to the Vitamin D Wiki web site at:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

You'll find more about vitamin D3 than you'll ever hear from me except as it applies to cluster headache as a preventative...  I've lots of help on this topic from the likes of Dr. Robert Hearney, MD...  also well published and a professor of Endocrinology at Creighton University School of Medicine...

Take care,

V/R, Batch

Thanks Thierry and Batch that explains the co-factors in the D3 regimen. I hate taking anything I don't need to but when it comes to a CH like the one last night anything goes.

Fascinating!  The sunlight link again -- Vitamin D comes through!  I am headed to my local drug store right now to get these vitamins -- can't hurt!

OK, Batch.  Three years ago, when I discovered you guys, you set me straight on the path to recovery with all your fantastic information.  I'm now in the first cluster in those three years (almost to the day -- no surprise), and I've already been through one round of dexadron and have re-started with prednisone 36 hours ago (and of course verapamil).  Did not have one last night, and miraculously, no sensation that one might appear this afternoon.  But I ran out at lunch and bought the D3 and fish oil -- harmless substances, and maybe they'll help.  Here's my question.  I was able to get a liquid form of the D3, 5000 units per dropper, making it incredibly cheap and easy to take the D.  But do you know whether the rapid way it gets into the blood is actually any better, or any worse, than taking it in pill form?  The dropper form is so simple, and I can take it about 8 hours after the morning verapamil -- just curious whether mode of ingestion matters at all.  Thanks.

Hey Cynde,

Good question.  For starters, I'm not aware of any interaction between vitamin D3 and verapamil...  There is an interaction between calcium in the anti-inflammatory regimen and verapamil.  Calcium tends to lower the serum concentration of verapamil making it less effective.

The best advice here is talk with your neurologist about separating the verapamil and calcium dosing times by 12 hours and don't take any more than 250 mg/day calcium until you're tired of verapamil and stop taking it.  Ask your PCP or neurologist for the lab test for 25(OH)D.  Knowing your serum concentration of this vitamin D3 metabolite will give you a good idea how long it can take for a pain free response.

Regarding vitamin D3 drops and liquid soft gel capsules...  Either should be taken along with the Omega 3 Fish oil and the cofactors with the largest meal of the day with the most fats.  This will help improve absorption.

The vitamin D drops carry a slight advantage over the liquid softgel capsules as absorption starts in the mouth.

One more thing...  When you experience a pain free response from the anti-inflammatory regimen...  don't stop taking it...  That way when the next episodic CH cycle rolls into town... it will be a non-event... like no hits...

This is a very healthy regimen people should take even if they didn't have cluster headache...  My wife and I are on it for life...

The best testimony to the beneficial health effects of this regimen came from my wife's PCP following her 2012 annual physical with all the labs... 

A few days following the annual physical, her doctor called to say:  "I don't know what you're doing... but what ever it is... keep doing it.  Your labs, heart and lung functions appear to be from a 25 year old.  On top of that, your total cholesterol and triglycerides are remarkably low..." 

My wife kicked the heck out of 75 last Christmas...  Go figure...

You'll find more info on the health benefits of vitamin D3 and the vitamin D3 cofactors at the following Vitamin D Wiki link:

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Take care and please keep us posted.

V/R, Batch

Thanks!  I will keep you apprised.  I am one of the luckiest CH sufferers, I think, because I have usually had great success with first-line defenses.  I am so intrigued by your linking the D3 and CH, because I am kinda sure that this sequence came on after three years because (1) I am working in a job in which I almost never go outside during the day any time of year, for the first time in my life, and (2) I did not use my SADD lamp this winter, which I almost always use starting in about February.  I took my first 10,000 IU of D3 and 2,000 mg of Omega-3 at lunch today.  I will let you know what happens as I stay on this combo.  Thanks for all you do for us CH sufferers.  You help keep me sane!

ive been on the regime for a week and a half now. started off for a few days on 10,000ui of d3 but lifted it to 15,ooo per day with magnesium, calcium citrate, the omega fish oil and a multi vit.  was still getting one or two ch's at about a 6 each day so took the 50,000 loading of vit d3 on the 8th day, tonight, day 10, lifted the vit d3 to 20,00 as I got 2 nasty ch's today. im finding that a quick hit of red bull does knock it on the head quickly, but there still coming.  I know my vit d level before I started was 54 nmol which is on the low side, so I guess I'll keep it at 20,00 ui per day with a 50,000 loading once a week until ive been doing the regime for a month, then get my d level tested again and see what level im on. still taking my 240 verapamil in the mornings, don't want to lift that dosage, as I want to know if and when the regime kicks in.  still very hopefull !!!
colin

Hey Cynde and Blacklab,

Thanks for the headzup you've started the anti-inflammatory regimen.  The odds are clearly in your favor for a significant reduction in the frequency, severity and duration of your cluster headaches if not a complete cessation for a pain free response.

The only thing I suggest at this point is to ask your PCP for the lab test for 25(OH)D.  Even though you've already started this regimen, we can always work the curve backwards to estimate your starting serum concentration fo 25(OH)D.  Knowing your status at this point will take a lot of the guess work out of how long it can take for a favorable response.

In any event, please keep us posted on your results.  If you're not experiencing any improvement in a week to 10 days shoot me a pm.

Take care.

V/R, Batch

How often is it recommended for somebody using this regimen to get their 25-Hydroxyvitamin D, a.k.a. 25(OH)D tested to ensure they are consistently at effective levels?

-Gregg in Las Vegas

Gregg,

Good question.  The answer is it varies... 

I'm not a doctor...  However, from the data I've collected here at CH.com, the online survey, and countless studies read over the last two years, I'd say three lab tests for 25(OH)D the first year would be prudent.

If possible have the blood drawn for the 25(OH)D test then start the regimen.  If you can't do that, having this lab test done within the first week to 10 days of starting this regimen will also be helpful. 

A second lab test three months after starting this regimen should confirm the CH'er is in the green zone and a third test at the six month mark after starting this regimen should confirm a stable serum concentration around 85 ng/mL assuming the vitamin D3 intake has been 10,000 IU/day during that three month period. 

As long as the average vitamin D3 intake is 10,000 IU/day, the 25(OH)D lab results should plot out on the upper line in the following chart.

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After that, I'd get tested once a year assuming you stay on this regimen...   I'd also get this lab test any time you fall out of remission with a rash of cluster headaches.

Most of the vitamin D3 Jedi Masters who routinely treat patients with vitamin D3 therapy suggest a 25(OH)D lab test every three to six months and any time the dose of vitamin D3 exceeds 10,000 IU/day for more than two to three weeks.  Lab tests for total serum calcium and PTH (Parathyroid Hormone) would also be prudent if dosing on vitamin D3 over 10,000 IU/day.

Vitamin D3 intoxication is rare and I'm unaware of any reported deaths from it.  That said hyperparathyroidism (too much parathyroid hormone) sends the kidneys into warp drive causing them to metabolize 25(OH)D into 1,25(OH)2D3, the active hormonal form of vitamin D3 at too high a rate. 

When that happens, calcium homeostasis control mechanisms can break down allowing serum calcium levels to rise above the normal reference range.

CH'ers with sarcoidosis (we have one or two here at CH.dom) also need to test for 25(OH)D on a more frequent basis.

Hope this helps.

Take care,

V/R, Batch

Crystal clear, thanks Batch ;)

-Gregg in Las Vegas

Hi

  Now over 18 months PF (after 10 years chronic).   Will check my past  posts for the D3 serum levels (I sent them to you back when).

  Was in the middle of a much longer post when I lost it somehow on this damn laptop.  My desktop crashed lon ago and I have a very difficult time typing on this thing (errors every other word) . . . .   that's the main reason I havven't been on the board.

  But sitting here (sipping a brandy) I had to make some contact with you and all the crew who helped me from the time I first got here (2/02).

  Did take a picture of my truck loaded with E tanks I took back to the med supply over a year ago (used to keep twenty).   I still keep 3 or 4 . . . just in case I might need them or I run across someone who does.

  Be Safe,    PFDANs


   Richard

I went to the store and bought all the supplements to start,  but when unpacking realised that the d3  is made with a red wine extract. Mega D3  from Schiff, 5000iu.  Will  this potentially make a difference,  due to sensitivity to wine?  or is that more related to the alcohol content?  Any insight would be appreciated.

G'day Jes,
This is new to me. Red wine is made from the juice extract of a certain variety of red grapes, unless they are adding
red wine as you do when cooking, then that does'nt sound
right to me. If i were you i would take them back and get
the ones without red wine extract.

Hoppy.

That's what I'll do then.  They were kinda pricy anyway.  Best to err on the side of caution I suppose. I  happened to go to the pharmacy today and asked him what he thought, he said the same.

Thank you  for responding!
This website and I have been spending a lot of sleepless nights together.
I  appreciate all the people who take the time to post and educate!

danallan wrote on Jul 8^th, 2013 at 5:53pm:

First post - long time CH sufferer. CH began was I was 20 after a bout with Viral Meningitis. Stupid headaches morphed from one form to another over the years...I'm 53 now. Now they hang around for 4 to 5 weeks and drive me insane. (One episode was 5 months long) Came across this web site because I was looking to see if using weed would do anything....I don't smoke but I was willing to try anything. (No weed, I know). Started the Vit D therapy last Wed, so 5 days ago, Had my blood tested on Fri after only two days of therapy. Results are  in, I am at 47 ng/Ml. Yesterday and today, I am headache free for the first time in almost 4 weeks. Talk about a mood change to boot, my dog even likes me again and I'm hoping my wife comes looking for me soon.......its been a while. FWIW, I had my blood drawn and tested by Any Lab Test Now. They have about 150 franchises across the country. Cost me $119. No doctor needed. Tests results in 3 days. In case you don't have insurance or a doctor who wants to help. I will take the survey in a month's time. All I can say is thank God for the internet because I probably would still be in bed holding my head, rocking back and forth wishing my head would explode so the pain would stop. I know you share my pain.

God bless this regimen.

This is the news I live for.

Batch wrote - Regarding vitamin D3 drops and liquid soft gel
capsules either should be taken along with the omega 3 fish
oil and the cofactors with the largest meal of the day with
most fats.That wiil help improve absorption.

Hoppy.

Hoppy wrote on Jul 9^th, 2013 at 5:47pm:

Batch wrote - Regarding vitamin D3 drops and liquid soft gel capsules either should be taken along with the omega 3 fish oil and the cofactors with the largest meal of the day with most fats.That wiil help improve absorption. Hoppy.

It seems you don't want to let this one go, so I say - whatever gets you through the night.

Now a new study that shows higher incidence of prostate cancer in men who take in high levels of omega-3 fatty acids (i.e., fish oil supplements):

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Ruh-roh.

I saw this story too.  I'm waiting for the dust to settle a little.  I want to see all the parameters of the study. The vitamin D dosage we are using may change how the omega 3's affect the cells. I also want to see what other diseases may be affected by this--not just men's issues. Maybe it's time to take a closer look at the regimen's need for so much omega 3 supplementation.

All,

I was waiting for posts on the study linking Omega-3 to prostate cancer. 

We need to be critical when reviewing articles on study results like this...  I've yet to see the actual study results so will keep my powder dry as to the validity/applicability of this study.

That said, there are a few things to ponder... 

(1) This was the first and only study to go against the trend of so many other studies that found Omega-3 fatty acids helped prevent or slowed the progress of prostate cancer...

"A NEJM study in May 2013 found that men with a higher level of omega-3 fatty acids in their blood had a higher rate of advanced prostate cancer. This conflicts with results of prior studies. Do not to base your understanding of cause and effect results based only on one study since the results of others could show a different outcome."

(2) There are several fatty acids classified as "Omega-3"

"The fatty acids found in fish may slightly lower a man's risk of prostate cancer, but another type of fatty acid found in a range of foods may raise the risk, a large study suggests. Researchers found that among nearly 48,000 U.S. men followed for 14 years, those with the highest intakes of two fatty acids found in oily fish were 26 percent less likely than men with the lowest intakes to develop advanced prostate cancer. The opposite was true, however, when it came to alpha-linolenic acid, or ALA. Like the two fish-oil fats, ALA is an omega-3 unsaturated fatty acid that is thought to promote heart health; it is found in vegetable sources such as soybeans, canola oil, walnuts and flaxseed, and to a lesser extent in meat and dairy products. In this study, men with the highest intake of ALA were about twice as likely as those with the lowest intakes to develop advanced prostate cancer. And the risk was increased regardless of whether the ALA came from vegetable or animal sources, according to findings published in the American Journal of Clinical Nutrition."

"Dietary intake of n-3 (fish oils) and n-6 fatty acids and the risk of prostate cancer.
Am J Clin Nutr. 2004.
Laboratory studies have shown that n-3 fatty acids (mostly in fish oils) inhibit and n-6 fatty acids stimulate prostate cancer growth, but whether the dietary intake of these fatty acids affects prostate cancer risk in humans remains unclear. We prospectively evaluated the association between intakes of alpha-linolenic (ALA; 18:3n-3), eicosapentaenoic (EPA; 20:5n-3), docosahexaenoic (DHA; 22:6n-3), linoleic (LA; 18:2n-6), and arachidonic (AA; 20:4n-6) acids and prostate cancer risk. A cohort of 47 866 US men aged 40-75 y with no prostate cancer history in 1986 was followed for 14 y. During follow-up, 2965 new cases of total prostate cancer were ascertained, 448 of which were advanced prostate cancer. ALA intake was unrelated to the risk of total prostate cancer. In contrast, the multivariate relative risks (RRs) of advanced prostate cancer from comparisons of extreme quintiles of ALA from nonanimal sources and ALA from meat and dairy sources were 2.02 and 1.53, respectively. EPA and DHA intakes (fish oils) were related to lower prostate cancer risk.  Increased dietary intakes of ALA may increase the risk of advanced prostate cancer. In contrast, EPA and DHA (fish oils) intakes may reduce the risk of total and advanced prostate cancer."

(3) I have a couple long time friends and former squadron mates who are recovering from prostate cancer.  Both are taking 10,000 to 15,000 IU/day vitamin D3 to keep their 25(OH)D between 80 and 90 ng/mL.  They also take the cofactors, 1000 mg/day Omega-3 Fish Oil, and Curcumin.  They claim a few months after prostate surgery, radiation and chemo, their PSA started climbing again...  The above regimen reversed that trend and both now have normal PSA levels and have maintained them in the normal range for >5 years..

See the following link.  It puts much of this in perspective:

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Take care and hang in there... I suspect there will be other more qualified experts making a reclama to this latest study.

V/R, Batch

   I just looked up at the CDC the odds for getting prostate cancer for us old guys, ranges roughly from 6% to 13% in the next 10 years depending on just how old you are. My grandfather had prostate cancer for years and I recall him saying he was going to die with it, not from it. He passed away at the ripe old age of 99.
    Pick practically any study,  coffee is bad, coffee is good , this is good for you, no wait it's bad for you etc. etc. etc.
     So I say,   Pick your Poison,    I pick Pain Free

     Life is terminal, enjoy it while we can.

        Sean

A concern...

The magnesium is running right through me and I think it's interfering with the absorption of the other supplements. I think I'll take the magnesium later on in the day.

What say ye?

Hi All - Been on D3 for just over a month - Pre regiment D3 level was 19 ng/ml - just got my results back from last week - 59 ng/ml.

Been feeling better, still get some shadows but nothing too bad and I use energy drinks and naproxen to kill those off cause I usually get them at work.

I've cut down my verapamil (with my GP;s consent) to 160 mg for the next few weeks, then I'll be going down to 80 to see how I feel.

Hope everyone else is having a great summer!

Hey TeeJ,

It's great to hear you've got your GP involved.  That's important.

Your latest lab result appears to be right on the 25(OH)D response curve for a 10,000 IU/day dose of vitamin D3.

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As the target 25(OH)D serum concentration where the majority of CH'ers remain pain free is around 85 ng/mL and the rate of increase slows at higher concentrations, I'd take a 50,000 IU loading dose of vitamin D3 once a week on top of your regular dose to speed up the process.  That should help eliminate the shadows. 

Two to three weeks on this dosing schedule should be sufficient.  Then you can skip the loading dose and stick with the maintenance dose of 10,000 IU/day.  Ask for the 25(OH)D lab test again after a month.  Keep your GP in the loop.

Denim,

What form of magnesium are you taking and how much are you taking? 

If you're taking magnesium oxide which can result in osmotic diarrhea at higher doses, you might want to consider switching to magnesium malate, magnesium glycinate or magnesium citrate if you haven't already done so. 

These three magnesium salts have a much higher bioavailability and lower incidence of osmotic diarrhea.

Take care and please keep us posted.

V/R, Batch

Batch - I'll try the 50k loading dose the next three weeks and see how it goes.

Denim,

Like Batch said - try the citrate if you can for MG - Also try to take it with food - I only take the Calcium before I eat with OJ as Batch has suggested - everything else I take with food and have no stomach issues.

Thanks!

Thanks Batch! I"m taking the -oxide, so I'll go ahead and make the switch.

Hi Gang,

I feel I can post here now with having some data on my D3 levels.

I am in my 4th bout of CH, each time the bout is a little longer with the last one being 6 weeks.

I'm in my 3rd week, exactly, of this round and started the D3 regime 8 days ago. 2 days ago I also picked up a bad flu, my worst ever with one night of fever and chills - just couldn't get warm, then add that to the CH has made everything close to unbearable.

I've been taking up to 4 20mg Imigran Nasal sprays a day as the pain level is unbearable. I often try to sit through them as the Imigran is so expensive, but mostly I'm not strong enough to suffer any more. Last Sunday I sat through one and spent 2 hours rolling around on the grass in the back yard with my wife begging me to take the spray. I did in the end and it was over in 5 minutes.

The CH's are worse as the day rolls along, occurring at 11.30PM, 4.00AM, 10.00AM, 3.00PM and 7.30PM - as regular as clockwork. I often wake up with a minor one that I sit through. I can also sit through the one at 10.00AM, but then it puts the cycle out of sync and I'll end up with another at 1.30PM.

Over the last 3 weeks I have gone from 3 CH a day to 6 a day. I f I was to critique the D3 regime, I would say that it has made it worse. I'm not tolerating the Magnesium very well and it makes me nauseous and as noted on the 10/7/2013 - I woke up at 12.30AM with a CH, took the Imigran Nasal Spray and was overwhelmed with being sick, rushed to the toilet and danced between face and butt in the bowl as I threw up and lost it from the rear at the same time.

Today's trip to the doctor had me seeking out Veperamil for the first time, I just can't take the headaches any longer. I will still continue the D3 regime and hopefully report a brighter outcome.

My blood test results are below and maybe Batch could offer some comment.


Starting D3 Level - Unknown

5/7/2013
10,000 IU D3
2000 Fish Oil


6/7/2013
20,000 IU D3
1 x Multi
450mg Magnesium Citrate
500Mg Calcium Citrate
2000Mg Fish Oil


7/7/2013
50,000 IU D3
1 x Multi
450mg Magnesium Citrate
500Mg Calcium Citrate
2000Mg Fish Oil



8/7/2013
20,000 IU D3
1 x Multi
450mg Magnesium Citrate
500Mg Calcium Citrate
2000Mg Fish Oil


9/7/2013
8000 IU Chewable D3
22,000 IU D3
1 x Multi
450mg Magnesium Citrate
500Mg Calcium Citrate
2000Mg Fish Oil


10/7/2013
20,000 D3
1 x Multi
2000 mg Fish Oil
Woke up Midnight, very nauseous, exploded both ends
Visit the Medical Centre for more Imigran Nasal Spay, had a blood test


11/7/2013
20,000 D3
200Mg Fish Oil
Terrible night, flu kicks in, night time fever and terrible chills - shaking, headaches all night - both sides


12/7/2013
20000 D3
1 x Multi
150mg Magnesium Citrate
2000Mg Fish Oil

13/7/2013 - Blood test results in. Doctor lectures me on the stupidity of so much D3 - saying our bodies are like a machine "you put too much oil in the top and it puts too much pressure on the machine"
Liver count is a little high, she says that's partly due to too much D3. Triglycerides are over range - that's probably too much Bourbon and Coke

Blood Test Results from Morning of the 10/7/2013 3 Days ago and 5 days into the D3 Regime

Serum 25(OH) Vitamin D3 67 nmol/L  (stated as sufficient within 51-200 nmol/l)
Calcium 2.53 nmol/L   (2.13-2.63)
Corrected Calcium 2.45 nmol/L  (2.13 -2.63)
Magnesium 1.03 nmol/L (0.70-1.10)

G'day Roland,
The vitamin D3 response from your doctor is quite normal,
we hear it all the time here.On the Imigran you get the
best results with injections. Have you tried melatonin to
help you get through those night attacks, you can buy it
OTC at your local pharmacy.

Good Luck, Hoppy.

hi roland,
                firstly many other people with more experience will hopefully comment, but I will give you my play on things.
I started the regime 7 weeks ago, my starting d3 level was 53 nmol, yours currently isn't much higher, im now 194 and pain free.
I too got the flu a week into starting the regime and went backwards, the flu sucks all the extra d3 that your taking to fight the flu. it was extremely frustrating at the time, but you must continue.  even my doctor last week told me that 194 nmol was within the normal range and was amazed at how much I had to take to get it there and that's what you have to get to to hopefully become pain free.
she was concerned at the levels I was taking to get up too the 194nmol reading, but said I obviously needed that amount to increase my levels.as far as mot tolerating the magnesium, I took batches advice and drank 1/4 teaspoon baking soda in a glass of water 3 or 4 times a day and my stomach gradually settled down.
one thing I noticed on the journey was that it made my ch attacks go all over the place, had lots of bad shadows. its almost as though, as the d3 levels increase, your clusters become less predictable in there intensity and regularity.
the flu will slow your d3 count down so keep dosing up.
hang in there, im now pain free and weaning off my verapomil preventative,  hang in there, it will happen, but unfortunately can be a rocky road.
good luck with it
colin

p.s
roland, why did you stop taking the calcium ?
          the calcium helps the absorption of the d3
I would stick to all the supplements, magnesium, calcium, fish oil and multi vitamin, which batch has proven works best.
regards
colin

Thank you for the responses.

Hi Hoppy,
I did try the Melatonin last time and it didn't seem to make any difference - it's still in the cupboard from 3 years ago - maybe I'll give it a go tonight. I haven't looked forward to going to bed for 3 weeks now :( I don't think I am so comfortable with injecting myself, I'm happy with the response from the Nasal Spray - just not happy with paying $8 for each abort. I'll do a search here on the forum to see how others are getting on with taking Melatonin. Thanks Mate

Hi blacklab, I remember reading your post about getting the flu when I got mine, and as you reported, I think you are right about the Flu zapping the D3. Mind you I have never had a flu response that was so bad - I thought I was going to die and it started me wondering if the D3 regime was making the flu worse..... I have Veropamil now with no idea on the dosage, I just took 1 x 160mg this morning to start with. The doc's prescription reads "half a tablet" - the Veropamil is a capsule, so seems a bit of a chore to take half?

Hey Colin, I hear that Veropamil and Calcium together can be dangerous, plus I eat cheese and drink milk nearly every day. Would like to hear some thoughts on the 2 of these together.



Since I have never taken Veropamil before, is 160mg (one capsule) enough? 

Roland, you need to take verapamil first thing in the morning
and the D3 Regime with your night time meal,      
to stop any side affects.Don't worry about your
headaches being all over the place, this also
happened to me when i started the D3 regime.
I am now CH free after suffering for the past
43yrs. I would check the Melatonin i'snt out
of date.

Hoppy.

I just checked my Blackmores 1000mg fish oil and it it seems 1000mg isn't a 1000mg of much at all:


Active Ingredients
Ingredient      Amount
DHA      120 mg
EPA      180 mg
Fish Oil Natural      1000 mg

Most research I have (just) done suggests beneficial results come from 2g a day of EPA's and DHA's  :o

HI Roland,
You need to get fish oil concentrate, good US brands are,
Nature Made, Nature's Bounty. If you are eating a lot of
cheese a day, you maybe not need the calcium citrate.

Hoppy.

hi roland,  interesting on the fish oil.  I use one which is 1200mg fish oil, called double strength with 600 mg omega 3 in it.
hey roland, from what I read, its best to keep the calcium and verapamil doses 8-12 hours apart otherwise the calcium lessens the effect of the verapamil, or vice versa.
ive been taking 240 verapamil once a day in the morning, its a slow release one, which works well for me. some here are taking a lot more verapamil as you will probably read. it takes a couple of weeks of taking it for it to take effect, so its not an instant buster, but a preventative.i was given fast release verapamil in the beginning and it made me feel a tad dizzy as I have lowish blood pressure, but the slow release works for me.  when I first get an attack I will take a course of tapering prednisone which while on it kills all attacks, and start verapamil at the same time. sometimes through a cycle, ive taken a course of predisone for a week, just to have a break from the attacks, but its not good for you long term, hence the short tapering course.
I don't think the vit d3 has made the flu any worse, you would have got it anyway. mine was a shocker of a flu as well and together with clusters makes it almost unbearable.
I got thru guzzling a red bull down, then I had imigran tablets, which I know take 20-30 minutes to kick in. I too couldn't imagine myself injecting.   
have you tried the 02 roland ?
I admit I haven't, but it will be on my list if the regime doesn't fully make me pain free on my next cycle.
I mean its a drug free buster if it works for u as it does for many on here. I found after a while taking imigran I got a lot of rebound attacks a couple of hours later.
roland, as mentioned, it might feel as though nothings working for you at the moment, but once you can get your d3 level up to the 190-200 level you will hopefully be one of the lucky ones to become pain free.  as mentioned it took me because of the flu 6-7 weeks of the regime, basically 20,000 d3 a day with a 50,000 loading once a week.
stay in touch and good luck with this cycle and the vit regime........
colin

Roland,

Thanks for the detailed feedback...  Ho Lee Key-Rap!!!  Sorry you're having such a rough time.  You appear to be doing everything right with respect to the anti-inflammatory regimen and you're still getting hammered... at both ends...

Lets start from the top... er... make that the bottom...  You're taking the right form of magnesium...  just a little too much.  Even magnesium citrate at too high a dose can result in osmotic diarrhea... a.k.a. high pressure hydraulic squirts...

You've obviously figured that out as I see where you cut the dose of magnesium citrate in half...  If that doesn't solidify things a bit, cut it in half again...

We've found that viral infections like the flu and colds suck up vitamin D3 like it was going out of style...  This slows the process of building serum 25(OH)D reserves and has kept a few of us from going pain free on the anti-inflammatory regimen.

There are several studies that found our immune system's T-Cells suck up large amounts of 25(OH)D in response to viral infections, trauma, and major surgery as indicated by a sharp drop in serum 25(OH)D concentrations...

The best rule of thumb if you've caught a flu bug or a bad cold is double the present dose of vitamin D3 until the flu or cold symptoms clear.  A 50,000 IU loading dose of vitamin D3 once a week wouldn't hurt as long as the viral symptoms are present..

I've been pain free of my CH since Oct 2010 when I started the anti-inflammatory regimen... with three exceptions.  All three times I intentionally stopped taking the entire anti-inflammatory regimen as a burn down test of my 25(OH)D reserves...  In all three cases, the beast came a knocking after an average of 8 days without vitamin D3 and the cofactors.

Two weeks ago while on travel, I caught a very nasty cold, my first since Oct of 2010.  All was going well at my usual maintenance dose of 10,000 IU/day vitamin D3.  The cold symptoms appeared less sever and the sequence of cold symptoms were progressing faster than usual... until I missed my daily dose of the anti-inflammatory regimen...  Wham-O... the beast came racing back and the cold turned ugly.

I took a 50,000 IU vitamin D3 loading dose and bumped my daily intake of vitamin D3 to 25,000 IU/day a week... The beast beat feet and the cold symptoms subsided in less than a week.

On the topic of the "normal" reference range for the 25(OH)D lab test...  One of the largest medical diagnostic firms in the world, Quest Diagnostics, uses serum concentrations of 30 ng/mL (75 nmol/L) to 100 ng/mL, (250 nmol/L) as the optimal therapeutic reference range for 25(OH)D. 

The consensus of most medical experts in vitamin D3 therapy concludes a serum concentration of 25(OH)D3 of 21 to 29 ng/mL (52.5 to 72.5 nmol/L) is considered a vitamin D3 insufficiency and ≤20 ng/mL, (50 nmol/L) is a vitamin D3 deficiency...  with respect to rickets, osteoporosis and osteomalacia...  not cluster headache.

These same experts say 60 ng/mL, (150 nmol/L) as an optimum therapeutic level of 25(OH)D to maintain.

The results of the online survey of CH'ers using the anti-inflammatory regimen and who experienced a pain free response averaged a 25(OH)D serum concentration of 81.4 ng/mL, (203.5 nmol/L).

I'm not a doctor or a licensed nutritionist...  That said, here's where a little understanding of how these "normal" reference ranges for 25(OH)D3 are derived comes in handy. 

Most reference ranges are derived from the National Health and Nutrition Examination Survey (NHANES) data base of lab tests and survey results collected and reported to CDC.

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When these test and survey results are plotted out, the medical bean counters and statisticians get a bell shaped, gaussian "Normal" distribution curve as shown in the following graphic.

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I've overlaid the latest NHANES data for 25(OH)D in red print.  As you can see, the lower 5% of the 8306 participants surveyed had a 25(OH)D serum concentration less than 8.8 ng/mL, (22 nmol/L).  The 50th percentile and mean 25(OH)D serum concentration is 23.9 ng/mL (59.75 nmol/L) and 95% of the 8306 participants surveyed had a 25(OH)D serum concentration ≤ 38.5 ng/mL, (96.25 nmol/L)

Had we plotted out the same figures for paleo man or his modern day counterpart, a healthy Southern California Lifeguard, the curve would be off the scale to the right.  The mean serum 25(OH)D concentration of a SoCal Lifeguard is around 100 ng/mL, (250 nmol/L).

The unfortunate part of all this normal reference range stuff is too many physicians take the levels published by the Food and Nutrition Board at the Institute of Medicine (read big Government) as gospel... and their recommended daily vitamin D3 intake is 400 IU/day.  Moreover, too many of these physicians are perfectly satisfied if your 25(OH)D serum concentration is 31 ng/mL, (77.5 nmol/L).

If you want to read an expert opinion on the very low "big government" figures for vitamin D3, see the following link:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The following chart overlaid with color bands represents before and after 25(OH)D results after starting the anti-inflammatory regimen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

So what does all this mean to you?  The bottom line is simple...  You need to be your own best advocate when it comes to controlling your cluster headaches. 

That doesn't mean you blow off your doctors recommended treatments...  It does mean you can and should question them.  Above all, don't be afraid to ask about side effects... Educating them helps and most are receptive to new CH treatments if you show them the supporting data.

For example, your 25(OH)D serum concentration at 67 nmol/L, (27 ng/mL) is still insufficient according to the experts in vitamin D3 therapy... and well below the 60 to 110 ng/mL, (150 to 275 nmol/L) where 81% of the CH'ers who start this regimen experience a significant reduction in the frequency, severity and duration of their CH...  or go pain free.

The best course of action...  I would stick with the anti-inflammatory regimen with the following modifications.  Cut the Omega 3 Fish Oil back to 1000 mg/day, keep adjusting the magnesium citrate to keep things firm and stick with your present vitamin D3 dosing schedule of 20,000 IU/day plus the weekly 50,000 IU loading dose.  When your cold symptoms clear, you'll start building 25(OH)D reserves a lot faster.

There's nothing wrong in adding verapamil as needed.   Just take it in the morning and the rest of the anti-inflammatory regimen in the evening with the largest meal to improve absorption.

Take care, hang in there and please keep us posted.

V/R, Batch

Danallan,

Good on you!!! That's the way to beat the beast.

Take care and please keep us posted.

V/R, Batch

Great news Dana...I'm 3 years pain free on the regimen.....there's something to it!

Joe

I to was taking 450mg of Magnesium Citrate /day. Was
having loose poo.Will now take 225mg/day and see how
i go! [smiley=bag.gif]

Cheers, Hoppy.

After reading about how long Veperamil takes to have an effect has me thinking not to take it. I have only had 2 x 160mg caps so far in past 2 days, and I only have the Veperamil because I asked the doctor to prescribe it - I did take along a document supporting the use of it for CH which I shoved under the doc's nose.

This was another desperate attempt in self prescribing in lieu of any faith I have in Medical Center doctors knowing what to do about my CH.

I need to take stock of the negative health effects coming from me drawing my own conclusions on trying to get through this awful cycle....

The Flu is on the back foot now - obviously benefiting from the D3 regime, as Batch said, the Flu has probably put me back on the goal of reaching the therapeutic D3 levels.

I've given up trying to sit through hits, each time I do, a minor k2 or K3 quickly returns as a K8 half an hour later.

The Imigran nasal sprays are still working well for me, mostly taking around 5 minutes to kill the CH and normally no shadows - keeps me going for around 4 hours until the next one.

Thanks for the reply Batch, I'll bump in a loading dose of 50K tonight. Be nice to know what sort of daily serum level increase is had on 20K per day ??

Another day closer to goal tomorrow.

Take Care Everyone

Hey Roland,

Dictum Factum...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The dashed line represents the average 25(OH)D response to a vitamin D3 intake of 20,000 IU/day

Given you've had a bug...  your 25(OH)D results will be lower than shown.

This chart also illustrates why you should get tested again for 25(OH)D after 30 days on an accelerated vitamin D3 dosing schedule.  The target 25(OH)D serum concentration to shoot for is 85 ng/mL.  Once you reach that serum concentration, drop back to a maintenance dose of vitamin D3 at 10,000 IU/day.  85 ng/mL should keep you pain free and give you a week to 10 days reserve in case you miss a dose.

Take care,

V/R, Batch

HI Roland,
About the fish oil, do you have the brand name" Swisse" in
the US i'ts the one i use.

Concentrated omega-3 wild fish oil 1.042g.
DHA 248.7mg.
EPA 352.3mg.
1/day.

Hoppy.

Hi Hoppy,

I'm in Sydney and after studying all the contents of the Fish Oil, I've found one with similar concentrations to what you have plus it was on special at the discount Chemist store.

I was tempted to go Krill Oil, but yet to see any studies that compare it against Fish Oil.

Cheers
Roland


Hoppy wrote on Jul 14^th, 2013 at 10:09pm:

HI Roland, About the fish oil, do you have the brand name" Swisse" in the US i'ts the one i use. Concentrated omega-3 wild fish oil 1.042g. DHA 248.7mg. EPA 352.3mg. 1/day. Hoppy.

Hi Roland,
I did'nt realise you were on our shores.I used to live in
Sydney many years ago. I lived in Arden St, in Coogee,
just a stroll across the road for my morning swim. [smiley=cool.gif] Hoping the D3 Regime is starting
to kick in for you.

Cheers, Hoppy.

TeeJ2379 wrote on Jul 12^th, 2013 at 6:42am:

Hi All - Been on D3 for just over a month - Pre regiment D3 level was 19 ng/ml - just got my results back from last week - 59 ng/ml. Been feeling better, still get some shadows but nothing too bad and I use energy drinks and naproxen to kill those off cause I usually get them at work. I've cut down my verapamil (with my GP;s consent) to 160 mg for the next few weeks, then I'll be going down to 80 to see how I feel. Hope everyone else is having a great summer!

Well my testing of 160mg a day of verapamil wasn't as good as I was hoping.  Got hit on Thursday at work (kip 7 that lasted about 20 minutes after i aborted with a sumpatriptan tablet) this week.  Sorry to say that the D3 has not been the direct cause of my reduced hits.  My blood test say I'm still not in the optimal range so I'm sticking with it.  Still just one CH in about month has not been that bad.  Shadows are pretty bad right now, so my doc said to go back to 240mg verapamil.  Scheduled another blood test for first week of august to see if 50k D3 once a week can  get my levels up.

danallan wrote on Aug 22^nd, 2013 at 2:18pm:

I'm in trouble. Need help. Quick review, started Vit D regiment on July 4th. Vit D level tested at 47. 50k hit on July 13th. Aug 15th, the Beast returned with a vengeance. Upped daily from 10k to 25k. 50k hit on Aug 16th. Blood test on 8/21. Results today. wait for it.....103. So what the heck!!!! I'm a golfer and a damn good one. I haven't teed of yet this year in a tournament because of these headaches. I'm in the sun a lot, no sunscreen. I have done everything I should have done. I spend more time crying in bed than anything else this last week. I've taken to beating my head just for distraction sake. I guess I fall in the 20% that this doesn't work for or am I just too impatient? This is driving me crazy, maybe to divorce. I can't work. I can't play tournament golf. I have the worst temper with this. Don't want to eat, feel like throwing up but never do. I'll do anything that won't offend God (meaning no VooDoo Witch doctors, etc...) I can't live like this. No I am not going to check out. I know I am not special here. We are all in the same boat. Its just that mine is sinking at the moment.

Hi Danallan,
I can relate to the high test results.  One & half years ago I tested at 103 ng/ml and had no relief whatsoever from the vitamin regimen.  It doesn't work for everybody even when your test results are flagged High!  However it does work for many, so might want to keep trying it!

Additionally, you are clearly suffering in many ways and I suggest you speak to your doctor about transitional and preventative meds; which hopefully will return a quality of life to you.

As for the sun, stay out; unless you use sunscreen!

PF Wishes! ;)

-Gregg in Las Vegas

Danallan,

A 25(OH)D serum concentration of 103 is nowhere near the record reported reported to day...  There are several CH'ers who needed a 25(OH)D serum concentration upwards of 110 to 150 ng/mL to achieve a pain free response...

The record was North of 200 ng/mL... but under close supervision of the CH'ers physician with lab tests for total calcium, PTH, creatinine and a urine test for calcium... on a monthly basis.  All remained within the normal reference range...

There are several possible reasons you haven't had a favorable response with your 25(OH)D at 103 ng/mL.  The first is your serum calcium may be pushing the upper limit of its normal reference range and that will trigger another set of enzymes that metabolize the available 25(OH)D to an inactive vitamin D3 metabolite 24,25(OH)2D3 instead of the active metabolite and hormonal form of vitamin D3, 1,25(OH)2D2, (calcitriol).

This process is normal and part of the body's built-in protection mechanism that prevents calcium levels from exceeding the normal reference range to prevent vitamin D3 intoxication...

The solution here is to cut the calcium citrate supplements for a couple weeks and see what happens.

The other likely scenario is your arterial/systemic pH is too low...  (too much acid). This condition is usually due to diet but it can be caused by a number of comorbid medical conditions.

The simple test for a low pH is four glasses of baking soda tonic a day.  A half teaspoon of good old Arm & Hammer baking soda in 4 ounces of water an hour after each meal and right before bed.  The directions are on the box.

If that works, a more lasting solution is a slight change of diet by adding GOMBS.  See the following link for details:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Finally, what are you doing for oxygen therapy...  There's no sense laying in bed enduring the pain needlessly...  If used properly, oxygen therapy at flow rates that support hyperventilation... 25 to 40 liters/minute or oxygen therapy with hyperventilation, should result in an average abort time of 7 minutes flat to a pain free state and with 99% efficacy.

Shoot me a PM with your email address and I'll send you some info on this method of oxygen inhalation...  It's not Voodoo medicine and I hold a patent on this method of therapy as a co-inventor. 

Moreover, Dr. Todd Rozen, MD, Director, Geisinger Neurosciences Institute in Wilkes-Barre, PA has already done a pilot study of the oxygen demand valve version of this method of oxygen therapy...  The results...  it worked as advertised...  very effectively.

Take care, hang in there, and please keep us posted.

V/R, Batch

Hi guys,
this is incredibly rude i know, but i'm off to the the GP in literally 2hrs time and would love to know exactly what i should ask for in a blood test. Really, really sorry to barge in and request this info without a formal introduction!! I'll introduce myself this evening once back from the GP/Finished work. Have suffered this for ever, 3 yearly cycles (was a member here 3 years ago, but must have been deleted). Currently on 6th day of Prednisone and just tapered from 50mg to 25mg. Guess what - instant pain!! I find myself reaching for the Endone/Codine/inbprofin etc etc even though it i know it won't do anything, but desperation is desperation hence i really would like to give this a go! This happened last time i tried Prednisone too. Short term relief... Anyway, if i promise to introduce myself properly this-evening, could some one pleeeeeaaaseee spell out exactly what i should ask for in a blood test this afternoon?? Anything and everything that would be use. 42y.o. male, smoker/drinker/CH'er. Whilst i am waiting for the results, i can read up on the regime and get all the vitamins ready. Posting from Sydney Australia. G'day!
Steve

Choppo wrote on Sep 3^rd, 2013 at 8:44pm:

Hi guys, this is incredibly rude i know, but i'm off to the the GP in literally 2hrs time and would love to know exactly what i should ask for in a blood test. Really, really sorry to barge in and request this info without a formal introduction!! I'll introduce myself this evening once back from the GP/Finished work. Have suffered this for ever, 3 yearly cycles (was a member here 3 years ago, but must have been deleted). Currently on 6th day of Prednisone and just tapered from 50mg to 25mg. Guess what - instant pain!! This happened last time i tried. Anyway, if i promise to introduce myself properly this evening, could some one pleeeeeaaaseee spell out exactly what i should ask for in a blood test this afternoon?? Whilst i am waiting for the results, i can read up on the regime and get vitamins ready. Posting from Sydney Australia. G'day! Steve

The test is for 25-hydroxy vitamin D or 25(OH)D.

Perfect. Many thanks. Thought there were several things i should get a base line on, but if it's jsut that, then easy done - thanks again!
Will post up tonight!

Bumping this as I steered a lot of people at the conference this way! ;)

Joe

How I wanted this thing to work quickly. Read about 80% success rate and figured I had to try it. I got D3 tested 2 weeks ago and had it at a low 25 level, so I figured chances were good. I started popping 10 000 IU of D3, but so far nothing - if anything the hits have become somewhat worse. Definitely not working for me in just a few days or a week. I think I'll up the dosage, hopefully that gets me to a high enough level.
I'm starting testosterone again, that at least seems to be working after some time, though I'd obviously prefer D3 as a safer alternative. Hopefully testosterone and D3 mix together with no issues.

akage wrote on Sep 30^th, 2013 at 8:57pm:

How I wanted this thing to work quickly. Read about 80% success rate and figured I had to try it. I got D3 tested 2 weeks ago and had it at a low 25 level, so I figured chances were good. I started popping 10 000 IU of D3, but so far nothing - if anything the hits have become somewhat worse. Definitely not working for me in just a few days or a week. I think I'll up the dosage, hopefully that gets me to a high enough level. I'm starting testosterone again, that at least seems to be working after some time, though I'd obviously prefer D3 as a safer alternative. Hopefully testosterone and D3 mix together with no issues.

It took me 2 months before I got any consistent relief. And those first two months I was taking 20,000iu per day with a 50,000iu loading dose once a week. It just takes some of us longer.

Since I went pain free in May of 2012, I have not had another hit. I'm currently taking 10,000iu per day and my serum concentration remains around 70-75 ng/mL.

Stick with it.

Hey Akage,

It's been a while...  Are you taking the Omega-3 Fish Oil and all the vitamin D3 cofactors?

Given your starting 25(OH)D was 25 ng/mL, you can use a more aggressive vitamin D3 dosing schedule like Brew and many other CH'res have done... 

25,000 IU/day plus a 50,000 IU loading dose once a week on top of the daily dose.  You can stay on this schedule for a month then see your PCP for another 25(OH)D lab test.

Be sure to take the 400 mg/day magnesium, 1000 to 2000 mg/day Omega-3 Fish Oil and the rest of the vitamin D3 cofactors...

Take care and please keep us posted.

V/R, Batch

Batch, with the aggressive D3 dosing, wouldn't it make sense to up the co factors as well?

Shooky,

Good question... and it sounds intuitive.  However, with the exception of vitamin D3, (we're way over the Recommended Dietary Allowance (RDA)) and the Omega-3 Fish Oil which doesn't have one, the rest of the supplements in the complete anti-inflammatory regimen are already at or near the RDA.  We're going to need some dedicated lab tests to find out if increasing any or all of the cofactors is needed when loading vitamin D3.

That said, in the RCT where 48 youths were given a single oral dose of 600,000 IU vitamin D3, they gained an average of 60 ng/mL in 3 days.  PTH dropped, Ca and P increased and magnesium dropped.

See: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The following link takes you to the NIH Dietary Supplement Fact Sheet for Magnesium:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The Linus Pauling Institute at OSU also has some fascinating information on magnesium supplements at the following link:

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After all that... it might be beneficial to add additional magnesium malate, magnesium glycinate or magnesium citrate up to 600 mg/day split AM/PM in two 300 mg doses to avoid osmotic diarrhea.
 
The only two supplements I increase when I use an accelerated vitamin D3 dosing schedule after a burn down test of my 25(OH)D reserves are the Omega-3 Fish Oil to 2000 mg/day, and magnesium up to 500 mg/day. 

Some CH'ers still not responding to the accelerated vitamin D3 dosing schedule after a couple weeks have bumped the magnesium up to 500 mg/day and cut the calcium out completely or half the normal dose for a week or two.

Hope this helps.

Take care,

V/R, Batch

Hey Clusterville!
I just have to say that I have been helping Batch promote the D3 anti inflammatory regimen on the face book support groups for a year now as I am one of three administrators on the 2500+ member group "Cluster Headaches".

I have helped many sufferers with the regimen and it is just incredible to see so many become CH free or get significant relief from this horrid disorder by using this wonderful treatment for cluster headaches. It does not work for everyone but 80% is an amazing figure!

This regimen is one of the most exciting new natural alternative, preventative treatments that is available to us today.

My doctor, Dr. Gene Kallenberg head of family medicine for UCSD in San Diego was so impressed by the results for me after trying so many meds over years of treatment that did not work for my CH.

I have been mostly chronic for 37 of the last 40 years since 1973 and went CH free in 3 days after starting the regimen and using the accelerated dosing for the first two months then dropped down to the normal dosing schedule and have remained mostly CH free for a solid year now.

This is not a "Cure" and the beast still lurks but is an extremely affective treatment for many to keep the beast at bey. PATIENCE IS CRITICAL! HANG IN THERE!...:)

Dr. Kallenberg has treated other CHers with the regimen with great results. He is spreading the word!!
...Thank You Pete Batch!!!...:)

It's great to read that so many clusterheads are becomeing
pain free from this terrible disease inflicted upon us. I to
have been CH free for 12mths since starting the vitamin
D3 Regime. [smiley=2vrolijk_08.gif]

Hoppy.

These reports are so encouraging!

Last week, my doctor prescribed some imitrex which knocked out an attack over the weekend.

On Sept 24th, I started the D3 regimen and had some relief. Then I had some bad attacks (KIP >7) so I upped the daily intake to 15000 IU with a one time 25000 IU dose along with continuing the calcium citrate and fish oil.

On Oct 2nd, my doctor did the 25(OH)D test with some encouragement and I heard back today from his nurse that my 25(OH)D level was 35ng/ml. They have suggested to finish the D3 bottle and then taper down to 1000 IU/day.

However, I found an acupuncturist and health practitioner and she told me to keep on the D3 at 15000 IU. Thinking that I will to stay on the D3 regimen but don't know whether I should increase to get to PF and increased 25(OH)D levels. There are still some attacks that I abort with red bull....no 02 yet but working on it.

Any suggestions are greatly appreciated!

Hey Scabtrapper,

You're on the right track taking the anit-inflammatory regimen...  Given your 25(OH)D came back at 31 ng/mL after a week on this regimen, that indicates you were clearly deficient prior to starting this regimen.

You might want to try what other CH'ers have done to get pain free as fast as possible and that's to bump your daily vitamin D3 dose to 25,000 IU/day and take a 50,000 IU loading dose once a week on top of the daily dose...

Two weeks on this accelerated vitamin D3 dosing schedule should elevate your 25(OH)D to around 60 ng/mL.  At that point you can drop back to 15,000 IU/day vitamin D3 and get tested again after another two weeks... then adjust your vitamin D3 intake as appropriate.  The target 25(OH)D serum concentration is 80 to 85 ng/mL and a maintenance dose of 10,000 IU/day vitamin D3 should keep you there.

If your doctor goes into atrial fibrillation or suffers anal leakage over your vitamin D3 intake and resulting 25(OH)D serum concentration when you go in for the next 25(OH)D lab test, tell him to check out the following link where 48 youths were given a single oral vitamin D3 dose of 600,000 IU.  In three days they all averaged a 60 ng/mL increase in 25(OH)D and nothing bad happened...

The accelerated dosing schedule above comes out to 660,000 IU over a one month period...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Be sure to take all the other supplements in this regimen and for sure, keep your magnesium intake around 400 to 500 mg/day.

This is a very safe and effective vitamin D3 loading schedule.  In nearly three years, we have yet to have a CH'er on this regimen report any vitamin D3 intoxication as indicated by a total serum calcium concentration above the normal reference range. 

If you've got questions... ask away... There's no such thing as a dumb question when it comes to this regimen.

Take care and please keep us posted.

V/R, Batch

Thanks Batch for the reply. I've had 3 attacks per day recently but all were KIP 3 or 4....but sure would be great to have a PF day! I will try the increased dosage for a couple of weeks and then retest.

Is there a best time of day to take the 25000 IU?

Scabtrapper,

Good question... The best time to take vitamin D3 is with the largest meal of the day... with the most fat...  This aids absorption by as much as 50% over taking vitamin D3 on an empty stomach...  Another reason to take the vitamin D3 with the Omega-3 fish oil...

Eating a handful of almonds also helps vitamin D3 absorption.

Take care and please keep us posted.

V/R, Batch

Batch - thanks for the great answer.

My cycle pattern for the past 33 years of being an ECH'er have narrowed down to every other year, on odd years, beginning August/Sep, left side, average 12 weeks.

2013 is an odd year and my last cycle was Fall 2011.  I am proud to announce that my anticipated cycle did not begin this past August nor last month as expected.  I am still PF and attribute my cycle not starting to this anti-inflammatory regimen that Batch has created.

I follow this vitamin regimen protocol nightly and do not take one day for granted.  Thank you Pete!  Please get in contact with me when you are in Las Vegas next month.

-Gregg in Las Vegas

Congratulations Gregg...and thanks for posting your great news!  Episodics who have really predictable cycles are in the best position to measure the success of the D3 regimen. Even then, we still take all the supplements for months on end with a lot of hope and faith that it will pay off.  Did you notice any of the other syndrome symptoms happening, like tearing, sleep disruption, etc?
All in all...more great news for this new preventative. 

That is great news Gregg.

My episodes are quite predictable as well - now should be the time, and I do have some shadows but only 2 KIP3-4 hits so far, a week apart, easily aborted. Cross your fingers for me...

Hey Gregg,

Great news! I know you've given this regimen a lot longer than most would have, so it's very special to hear it has finally become an effective CH preventative for you...

I'll let you know when our travel arrangements to Las Vegas firm up...

Take care and thanks again for the great news.

V/R, Batch

Hi Batch and Clusterman 59 & all :)
Last time I spoke with you I had just started the D3 Regimen.
Test results:
Sept 25 = 86 nmol/L
Oct 11 = 170 nmol/L  (yay!)
Still on Verapamil, but have tapered down to 40/80/80mgs per day ( total 200mg/day), today I'll taper to 40/40/80 per day, totalling 160/day.

Because of my last cycle hit me so hard and I was at my lowest I've ever been over the 28yrs with CH's. I am very excited about joining you on my new journey of D3, however still a little scared, I must admit.  Not frighten of the regimen, reason being; I don't ever want to feel how I did sumer of 2013 again and this is my normal time for a cycle. From October to April is when I normally get hit with CH's. I'm not sure how the summer hit will affect my usual CH time hit.
Batch, shall I continue taking:
25,000 mg D3, with the rest of the regimen that is suggested by you? To increase my level to 200+ ?
And how long would you suggest to keep the D3 at 25,000/day.
I would like to taper down the Verpamil to 80mg/day, but I'll consider any suggestions to help me figure this out.
Appreciate your thoughts, as always  ;)
Thank you again,
Sue  :)

Hey Sue,

Thanks for the update...  You're doing great but 170 nmol/L (68 ng/mL) is in the low end of the green zone, 150 - 275 nmol/L.  Your target 25(OH)D serum concentration is 212 nmol/L, (85 ng/mL).

I would continue the present vitamin D3 dose and test again in a month.  At that point you should be able to drop back to 10,000 IU/day vitamin D3 as a maintenance dose.  That should hold your 25(OH)D at a stable concentration around 212 nmol/L.

As far as coming off the verapamil, tell your PCP or neurologist what you want to do and work out a scheduled taper.

Take care and please keep us posted.

V/R, Batch

Sounds good Batch.. Talk soon my friend :) Thanks again Batch  :)

Ok Batch - starting this regimen today. I had to switch docs and neuros because I moved across the country. New doc knows nothing and new neuro doesn't believe I know what I'm talking about (despite being diagnosed by three other neuros, every time I move).  Has prescribed Indicid because he thinks I have Chronic paroxysmal hemicrania.  Of course, it doesn't work.  Being a plebe, the neuro disregards everything I say I've tried.  That said, he's fairly forthright and responds when I, in turn, am also forthright.

So, at my wits end (again) I turn here to see what's new in treatment and find your regimen.

I've started with the following:
Vit D3 - 5,000IU
Omega 3 - 1000mg
Multi Vit - contains slightly lower doses of all your recommended supps, but I can bump up to to two per day in a week or so.

Last cycle I hit the "end."  I know all of you will understand what that means, but for the first time I realized that I didn't know what I'd do when I got the next hit. I told my neuro (at the time) and he did a nerve block. It stopped the cycle in it's tracks.

This new neuro did a block, but only needled the base of my nerve (bilaterally, at the base of my neck), not the three or four points I remember the previous neuro needling. I told new-guy this and he said we would try the base of the neck first (combined with indicid) and see how that does.  My next appointment isn't for another 1.5 months (this is the soonest I could get in, but this is Canada and I count myself lucky to even have a neuro so fast).

People who do not experience CH seem to think that the pain is acceptable and tolerable. Why, why, why?

I'll post results to your regimen and complete the survey after the recommended month.

Thanks for all you do, Batch. You're the recognized expert!

Thanks also to everyone here who informs and supports one another.

Hey PNug,

Thanks for the headzup you're starting the anti-inflammatory regimen...

Playing Ding Dong School with new neurologists goes with the turf as a CH'er.  We're ok as long as they listen to our ideas and concerns... and work with us to find the magic needed to prevent our CH.

With a day of the anti-inflammatory regimen under your belt by now... and I'll assume no adverse reactions...  it's time to start an accelerated vitamin D3 dosing schedule.  As a first step, see your PCP or neurologist for the 25(OH)D lab test if possible.

Several CH'ers have bumped their daily dose of vitamin D3 up to 25,000 IU/day and added a 50,000 loading dose once a week on top of the daily dose. 

Staying on this accelerated vitamin D3 dosing schedule for two weeks then dropping back to 15,000 IU/day for the next two weeks should elevate your 25(OH)D by 60 ng/mL above the starting concentration and result in a pain free response.

Try to get your 25(OH)D tested again after 30 days on this dosing schedule... If you're unable to get tested, drop back to 10,000 IU/day vitamin D3...  This is the maintenance dose that should result in a stable 25(OH)D serum concentration around a target of 85 ng/mL.

Take care and please keep us posted.

V/R, Batch

Hi,

I had episodic CH since childhood, on and off, getting worse in my early 20's. Now, my monster is chronic, been drilling it's way out of my skull most every morning for the last 5 years. Afterwards I get a "tension band" headache. (The "TBH" is in check now - thanks to 200 cc of Botox in my scalp every 3 months. 30 shots don't hurt that much) I also get horrific migraines. What can I say, I know how to party...LOL.

So far though nothing has broken through and stopped my chronic CH. I tried vitamins & some herbals remedies, some lowered the intensity, but nothing made me PF more than 3 days. Never tried mushrooms, they kind of scare me.

I want to try this - but I have a few issues.

First, I need a source of Omega-3 oil. I have a severe (anaphylactic) allergy to fish & shellfish. (I carry an Epi-pen everywhere I go.) So what can I use instead? I have seen flax & borage oil in the health food store - has anyone had any luck? Do they work as well as the fish oil?

Second, what is the max amount of D3 I can take, and can I add more if I already have it Rx?

My D3 level is being treated for the last 3 years by my GP. My level started out really low, it was 8! He began me on an Rx regimen of 10,000 IU and it didn't change. So he upped it and tested every 3 months for 18 months. I've been on an Rx of 50,000 IU a week for the last year & half. I'm due for a new test soon, last one was over 6 months ago. My last test the level had just started to come up, to a 27. He said I need to stay on it & test again every 6 months.

I also am mildly anemic, For which I occasionally take ferrous gluconate and vitamin C.

I take B-12 shots.

I am also extremely sensitive to solanine (found in nightshade veggies like tomatoes, potatoes & peppers.) I avoid it at all costs. I gives me a lot of joint/soft tissue pain.


That's the short of it. Believe it or not!

Thanks in advance for any advice/help with all my issues and this protocol.

Hi Falcon,
Some folk take 25,000iu /day of vitamin D and a loading
of 50,000iu once a week.Plus the other co-factors
daily. I'm sure flax/borage would be ok. Then when they
are cluster free drop back down to 10,000iu vitamin D.

Hoppy.

Hi Folks
I am Episodic and  I have been on the basic regimen (D3, Calcium, Omega 3) for about a year now and have been totally PF so far. I usually get at least two bouts a year.

My questions are:
Is it best to stay on it or stop and start again at the sign of a cluster??

Also, looking back at Batch's first post giving the regimen levels it says - Omega 3 - 360mg EPA and 240mg DHA, but he then advocates taking two of the capsules in the picture, which would give double that dose. I have been taking two, should I just cut back to one?

Thanks
Rob

I have been on it for over 3 years, pain free for those 3 years after over 30 years as an episodic. It's a permanent part of my life now. I take 5,000 D-3 a day, for me that's the magic number. As to the fish oil, I do one 1200 unit pill with dinner.

Joe

Hoppy wrote on Oct 24^th, 2013 at 3:05am:

Hi Falcon, Some folk take 25,000iu /day of vitamin D and a loading of 50,000iu once a week.Plus the other co-factors daily. I'm sure flax/borage would be ok. Then when they are cluster free drop back down to 10,000iu vitamin D. Hoppy.

Thanks Hoppy!

Tomorrow after work - vitamin shopping!

Chuffy wrote on Oct 24^th, 2013 at 9:47am:

Also, looking back at Batch's first post giving the regimen levels it says - Omega 3 - 360mg EPA and 240mg DHA, but he then advocates taking two of the capsules in the picture, which would give double that dose. I have been taking two, should I just cut back to one?

If your family has any history of heart disease, it cannot hurt to take a higher dosage of Omega-3 fatty acids.

I stay on this regimen year-round.

Hı Batch;
ThaNk you for your suggestions about CH. I am an episodic CH sufferer.
I will try the regimen but there is one question in my mind whether I will use this regimen during attack term or every day of life.
Thank you again for your efforts.

Hi Zelenka,
Batch is on vacation. The answer to your  :question is yes.
For the rest of your life.

Hoppy.

I'm gone give this a try

My current cycle started about 3 weeks ago and it's really strange.

Previous cycles (for the past 6-7 years) included mainly nocturnal hits, ONE (never more) KIP6-8 attack every night, which I was usually able to abort with O2 + energy drinks + a tryptan every now and then. Daytime hits were rare, although I did have constant shadows.

This year, after finding out I was D3 deficient I started taking D3 - 5000IU + a decent time in the sun every day. Plus magnesium, zinc and the other co factors through diet.

Went into full D3 regimen as soon as the new cycle started (haven't had my D3 checked lately though). I also take melatonin, which I also did in recent cycles.

Now for the funny part:

I have 2-3 day of both daytime and nighttime hits (some nights 1, others 2). Then a night or two (or even three) with no hits at all, and less or no daytime hits as well. And so forth.

Some attacks are easy to abort, others are really sticky and won't go away. Going to try upping the dose to 15000IU + a loading dose strait after getting lab test results.

Any thought?
Any explanation for the new pattern?

Hey Shooky,

Your CH pattern is not uncommon while ramping up on vitamin D3.  The hit and miss nature of your hits appears to indicate you've got your 25(OH)D near the minimum therapeutic level to experience a PF response. 

Bumping the daily intake to 15,000 IU/day plus the weekly loading dose should prove rewarding for you.

My only suggestions at this point is to bump your maintenance dose of vitamin D3 to 10,000 IU/day when out of cycle.  This should buy you a higher level of 25(OH)D reserves to make the next episodic cycle less problematic.  It would also be prudent to see your PCP or neurologist for the 25(OH)D lab test now and a month or so prior to your next cycle.

Take care and please keep us posted.

V/R, Batch

Batch, thanks! I sure will.

Hi Batch and all,  An update to our last conversation.

To recap:
I started the D3 Regimen mid September
Test results:
Sept 25 = 86 nmol/L
Oct 11 = 170 nmol/L = (68 ng/mL) needs to be a little higher.

Sept 20 to Sept 27th took 7000 D3/day

Sept 28th to Oct 30th took 25,000 D3/day.

Tapered off of Verapamil slowly, last day was Oct 27th, 2013 with advise from Neuro. (tx batch)

Oct 31st, dropped D3 intake to 15,000/day. (only to be cautious because my Neuro worried me about hypercalcemia. Obviously I'm fine, I know he doesn't understand the Anti Inflammatory regimen and because I'm new at this, he freaked me out.)

Pain free continues, next 25(OH)D test this Friday, Nov 8th. I will update as soon as I get my results.

Here's my concern:
Early this morning (Nov 4) and thru out today, I've experienced a strange feeling (pressure) around my left temple, which is the opposite side of my last CH cycle. It's nowhere painful, however when I turn quickly or bend down it bothers me. I can't say its exactly like my "shadows", put it is there hangin out and concerns me. 

I can't wait to here what my next 25(OH)D result is.

Shall I bump up my Vit D3 for the next few days? I'm thinking I should, or shall I wait and be patient.
Your thoughts?
tx so much, sue  :)

Sue, for what it's worth, I consider that pressure feeling to be a shadow. At least that's how my cluster shadows seem to manifest themselves, sometimes for about a week.

thanks Vinnie... I increase my D3 tonight to 30,000. 
Also, thinkin about the post Batch had wrote..  I can't locate it at the moment.. But he mentioned to make sure the Vit D3 label is approved by the FDA.
I noticed the "Spring Valley" brand from Walmart in the U.S.A. doesn't mention anything. Only mentions quality assurance, verified an independent ISO 9001:2000 certified laboratory.
I think I maybe in trouble  :(
thanks for your comment
Sue

Ended up last night topping my D3 to a total of 50,000iu's, feel much better this morning, just a slight annoyance, nothing to complain about.  I'll continue today with 20,000/day see how that works for me.
Friday Nov 8, I will have the 25(OH)D test, which will be 4 weeks since since the last one.
thanks all

Hey Sue,

Thanks for the update.  I’ve had to up my daily vitamin D3 intake to remain PF over the last two months as well.  I’m bouncing between 15,000 and 20,000 IU/day. 

I suspect my increased requirement for vitamin D3 is due to a sub-clinical (no obvious symptoms) allergic reaction from leaf mold spores…  The Maple and Alder trees around the house are almost completely bare, but I’ve been out with the leaf blower several times over the last few weeks trying to clear the yard and driveway.  We’ll see what happens when the air clears…

Walmart’s Spring Valley Vitamin D3 is likely ok…  I did some checking…  Walmart’s Spring Valley Vitamin brand sources their vitamins from Nature's Bounty, Perrigo, Pharmavite, Schiff Nutrition, IVC (International Vitamin Corporation) and Robinson Pharma… not sure which of these companies provides the vitamin D3.

Their Q&A section states their vitamin D3 is sourced and manufactured here in the US, but they indicate some of the raw materials do come from China… 

There’s likely a lot number and date associated with the vitamin D3 liquid softgel capsules that may help identify the original manufacturer.

Their ISO 9001:2000, a Quality Management System, is also out of date… It’s now ISO 9001:2009.

Take care and please keep us posted with your 25(OH)D lab results.  I’m due for my next test in December.

V/R, Batch

Thanks for your reply Batch!  I should have thought of researching the manufacturer.   ::);)

The beast is circling. Only shadows at present. My last test
was 67.4 ng/ml. I'm upping my vitamin D-3 to 20,000iu
daily, plus Kudzu 3/day, and Licorice Root 4/day.

Hoppy.

The shadows have gone. Now i'ts back to 10,000iu vitamin
D3, plus the other co-factors.

Hoppy.

Asked my Doc for another d3 test - he said he will send me but he says the insurance may not cover it - gonna find out what the lab would charge me out of pocket.

TeeJ

Thanks for the update...  You can order the 25(OH)D home blood spot test kit from ZRT Labs through the Vitamin D Council for $65.  I keep two of these kits on hand at all times.

They have a "How To" video to do the collection.

See the following link for details:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

Hi Batch and all fellow Clusterheads,

I have been living with the beast for about 8 years. I have tried all sorts of treatment with Verapamil being the latest failure (worked the last cycle but not so much anymore).

I stumbled upon this thread a few months ago and gave it a go for about 2 weeks then went onto a pred taper because I was writing exams and could risk it coming on in an exam. It never really worked so it didn't cross my mind again until now.

I have decided to go the whole hog this time as I really don't have any other options at this point. I went to have my D3 test on Tuesday and got the results back today.

They state:
< 20ng/mL is deficient
20 -29 is partial deficiency
> 30ng/mL is optimal

I came in a a whopping 13ng/mL. I guess that is what one gets working is IT and spending days in the Bat Cave instead of the sun.

I have learnt very long ago to not get my hopes up when a treatment works because the next time the beast circumvents it and nails you.

With my D3 so low and the other peoples' feedback here I am only cautiously optimistic. I am ready to commit and I will push through. I will have a test again next month to see if this regimen is raising those levels.

My only concern is I am still on the Verap as I do think it is keeping me down to one KIP 6 hit a day so I still have my reservations about stopping it so as to not interact with the calcium.

I will keep you posted and any more advice would be appreciated.

Thanks!

To Hoppy!! Fantastic news!

Judy

Soul, I am also on Verapamil 240mg twice a day at 7a and 7p. I take my calcium at noon and haven't seen any change. You can check with your PCP for his opinion.

As for the D3 regimen..please please give it a try! Hopefully BATCH will chime in with a plan for you. It worked for me and a ton others.

Judy

Hey Soul,

Thanks for the headzup you're starting the anti-inflammatory regimen again... This time armed with more determination and the results from your 25(OH)D lab test.

For starters, the deficiency/insufficiency figures put out by the Institute of Medicine are meaningless for all but rickets, osteomalacia and osteoporosis... 

The vitamin D3 experts and Jedi Masters of vitamin D3 therapy say any 25(OH)D serum concentration less than 50 ng/mL, (125 nmol/L) is deficient.  They also say the optimum serum concentration is 60 to 70 ng/mL in order to take advantage of the full potential of vitamin D3.

See the following link for some fascinating reading about RCTs finding a long list of health problems either prevented or successfully treated with vitamin D3:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

For us as CH'ers, our target 25(OH)D serum concentration needs to be 85 ng/mL or a range of 60 to 110 ng/mL for a therapeutic cluster headache response.  An average 25(OH)D serum response in this rage requires a vitamin D3 intake of 10,000 as shown in the chart below.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As you can see the 25(OH)D time course response to dose can take several weeks and up to a couple months to reach a steady state equilibrium.

Accordingly, once you've been on the anti-inflammatory regimen for a couple days to make sure there are no reactions to the supplements, it's best to start an accelerated vitamin D3 dosing schedule to elevate serum 25(OH)D as rapidly as possible into the "green zone."  This is where 80% of the CH'ers on this regimen experience a favorable response with a significant reduction in the frequency, severity and duration of their CH.

This vitamin D3 dosing schedule amounts to taking a total of 590,000 IU vitamin D3 over a 4 week period while keeping the other anti-inflammatory supplements at the same dose.  The average 25(OH)D response is 60 ng/mL over the starting concentration.

The suggested dosing schedule starts with 20,000 IU/day vitamin D3 for two weeks plus a 50,000 IU loading dose once a week on top of the daily 20,000 IU/day dose.  At the start of the third week drop the loading dose and lower the vitamin D3 intake to 15,000 IU/day... Continue this dose for two weeks then see your PCP for another 25(OH)D lab test.

If the results of this lab test come back at 80 ± 5 ng/mL, lower the vitamin D3 intake to a maintenance dose of 10,000 IU/day.

If the 25(OH)D lab results come back < 70 ng/mL, stay at 15,000 IU/day vitamin D3 for another week then drop back to the 10,000 IU/day maintenance dose.

Data from the online survey of 110 CH'ers using this regimen indicate 80% respond with a significant reduction in the frequency, severity and duration of their CH..  The response rate chart shown below shows 60% of them responded to this regimen within the first week and 90% responded within the first month.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted,

V/R, Batch       

Gonna give this a try. I've been taking GNC's Mega Men Performance & Vitality vitapak for almost a year now, it does have most of what's needed here, just not enough of it. Off to Target!!!

bump

Bump

G'day Batch,
I'm just wondering. Does calcium citrate cause constipation
:question.

Hoppy,

I guess it's possible... but I've never had that problem...  Eating plenty of roughage, pushing fluids, and 400 mg/day magnesium along with the rest of this regimen usually keeps the GI tract moving nicely.

Take care and please keep me posted.

V/R, Batch

G'day Batch,
I think I've found the culprit. Being a chocoholic and
eliminating it  :( things seem to be getting back to
normal. I wonder, do you think i'm on the money?

Best Hoppy.

Hoppy,

It's possible chocolate is the culprit...  That said, pushing fluids and eating enough roughage and fruit should keep things moving nicely...

If that doesn't work there's always the dam buster... prune juice...

Take care,

V/R, Batch

G'day Batch,
Fluids and me seem to have a love hate relationship. 
I never drink water by itself, my wife constantly moans
to me about it, but I just don't like it, but I drink pure
orange juice daily, have a banana and sultana bran for
breakfast with a cup of tea. My wife blames it on not
drinking water during the day and says i'm dehydrated
because I have a beer and a wee dram at lunchtime.
But, not drinking water has never bother me in the past.
Do you think it could be all in the water?

Best Hoppy

Possibly it could be related, especially with living in Perth where it can be hot and dry most of the year.

Experiment with water, maybe try sparkling or filtered. Once you get used to it it seems perfectly normal.

G'day Mike,
I'm thinking of giving it a go with a squeeze of lemon
juice. And, see how I go.

Cheers, Hoppy.

hello all, I'm brand new here, I was diagnosed with cluster headaches about 6 years ago, had them for 3 years in a row then they disappeared for two years. well as of a week ago they are back. I've switched doctors since being diagnosed and without my records he says he can't just take my word for it so he put me on nasonex and ibuprofen for a week saying it might be temporal arteritis and to see what happens. there was no arguing so I just took it and started doing my own research. 6 years ago there wasn't as much info on CH as there is now, and I found this regimen and am on day 3. with that being said about my doctor I think he's just going to look at me like I'm crazy if I ask for a d3 test, plus I'm on Medicaid (or Medicare? I'm only 24, I get the two confused) so I'm thinking about ordering my own blood test from the link posted earlier in this thread. I really hope this D3 regimen works, I get 2 at night and usually 2 during the day and I just can't take it anymore. so it's been 3 days, and I'm already a daily vitamin taker, so there's no adverse reactions so far, do you think I should be starting the weekly loading dose? or should I wait it out? I'm really just eager for something to work. I have a doctors appointment Sunday so he'll probably send me to get an MRI during the week then who knows what that will lead to. I'm not a big fan of prescriptions, I'd much rather go the natural route.

Hey Tpos,

Welcome to the anti-inflammatory regimen...  Given you've been taking vitamin D3 for a few days with no problems noted in your post... I'd start the vitamin D3 loading schedule.  Make sure you continue to take the Omega-3 fish oil and all the cofactors...

I would also order the $65 ZRT home blood spot test kit for 25(OH)D through the Vitamin D Council and save it until you're done with the 4 week vitamin D3 loading schedule.

Nasonex and ibuprofen won't do diddly for CH so I see no real need to be taking them other than to satisfy your doctor's guessing game...  That way when you tell him they didn't do anything to stop the headaches, you can ask for home oxygen therapy at a flow rate of 15 liters/minute with a non-rebreathing oxygen mask.

You'll find oxygen therapy at the top of the list as the first abortive of choice in the standards of care recommended treatments for CH...  See the following link:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Scroll down to "Major Recommendations"

Take care and please keep us posted.

V/R, Batch

ok so it's been 9 days since I started the loading dose schedule, my headaches have been really weird for lack of a better word, some days I get very light pain for extended periods, other days excruciating for 1-2 hours, even a day or two with close to nothing. I've been trying to notice things I eat different and seeing if that has an effect, I think sugar one day makes headaches the next day worse, but I'm not positive there's still other things that could be doing it. I've noticed if I exercise in the morning I can push a headache back further but it almost always comes no matter what. also my doctor prescribed me immitrex to try and see if it helps, he said if I need more than 2-3 a week he wants to try something else, so far I've needed one every day. anyway, just to make sure, my second loading 50,000 IU dose was Friday, so that means no 50,000 loading dose this Friday correct and go down to 15,000 IU on Saturday which would be the start of the third week?

Hey Tpos,

The change in your CH patterns is an indication you're building 25(OH)D...  Avoiding sugar is a good idea...  Max out on fish, chicken with lots of greens, beans and fresh berries...  I keep a jar of mixed nuts next to my laptop...

The important thing to remember is the loading schedule is just a guide.  The 600,000 IU of vitamin D3 over four weeks should result in an average 25(OH)D response of 60 ng/mL on top of the starting value...

Some of us are clearly not average so that makes the actual 25(OH)D serum concentration the important measure...  That said, a lasting cessation of CH for more than a week is the best indication you've got your 25(OH)D up in a therapeutic range...

What you might want to try is taking the vitamin D3 a little differently.  Pop your daily dose of the liquid soft gel capsules between your back teeth and hold the contents between your cheek and gums for 20 minutes without swallowing or drinking any fluids.  The vitamin D3 tastes a little sweet and the gel coats gradually dissolve after turning into a gummy bear texture.

Taking the vitamin D3 this way should increase absorption as it bypasses the lower GI tract as it passes directly into the bloodstream.  Continue to take the Omega-3 fish oil and all the cofactors... Magnesium, zinc and vitamin A (retinol) are the big three at this point.

Take care and please keep us posted.

V/R, Batch

bump

Got through another Autumn and no CHs  [smiley=2vrolijk_08.gif]

Hoppy.

Hello
I'm new here. I don't have cluster headache (sorry if I'm gatecrashing!), but I've had an extreme constant head, neck, face, teeth pain and tinnitus since hitting the back of my head on a wall last July. No drug numbs the pain, Topiramate (evil drug), Gabapentin, Indomethacin, Tapentadol, Oxycodone etc.
Only one thing helped for a short while, 50mg of Prednisolone, but I can't be on that forever.
I can't work, and it's unbearable.
My third neurologist thinks it could be some kind of inflammation, so I found this thread, and just wanted to let you know I've ordered all the stuff and gonna give it a go.
My friend does suffer with clusters, so I'm passing the info on to him too.
It's amazing it's helped so many people. Thank you Batch :-).

Kelly

Hey Kelly,

Thanks for the post...  and gatecrashers like you are always welcome...  Good move on both counts. 

There's every reason to expect a reduction in your chronic headache pain symptoms after starting the anti-inflammatory regimen.  The odds are good your friend with CH will also experience a reduction in the frequency, severity and duration of his CH when he starts it.

I've updated this post (first few pages), with the latest version of the anti-inflammatory regimen. It now contains a 3-month course of vitamin B 50.  This came as a suggestion from Dr. Stasha Gominak, MD.  See her videos on this topic at the following link:

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Dr Gominak is a neurologist in Tyler, TX and she's been treating patients with sleep, chronic pain and headache disorders for over 6 years with a vitamin D3 regimen very similar to the anti-inflammatory regimen.  The only real difference is she adds the 3-month course of vitamin B 50.

Take care and please keep us posted

V/R, Batch

Hi,  I am a long time CH sufferer and used this site last in 2007. My last bout was in 2010 and I was so hopeful I might never get them again. Alas, they started on July 1st. I got into my Headache Doc quickly to start the verapamil, prednisone (10 pills for 10 days, then taper one down per day for 10 days). I am taking 8 tomorrow, 7 on Wed.... 
Then I read all about the Vit. D Treatment and other vitamins.  Even on the prednisone, I have had a couple of hits, but in my vitamin cabinet, I happened to have Vit D and Fish Oil capsules. Started two days ago and no CH. I am pleasantly surprised! I am going to reread the entire recommendation that Batch posted (wow, thanks!) .
I wonder how things will look in the next 8 days as I taper off prednisone. I feel like I have a lot going on with Prednisone, Verapamil, Imitrex on standby and the o2 was delivered today. Now with the Vitamins... I am going to need to buy one of those pill holders to remember everthing!  I will also look into the Vit. D test mention with my Doctor.  Amazing that you (Batch)  stumbled on this and have helped so many.  So grateful I read this, Thanks, Leanne (Putter)

Hi Putter, The Batch Vit D3 regimen is the way to go. I am pain free for 16 months now (apaprt from the occasional shadow) thanks to the regimen. The last few pages (if you don't want to read all the pages) of the "123 days pain free" thread are most informative and i would recommend to anyone on the site to read it.
I would also recommend that you start the regimen A.S.A.P with loading doses of D3 as well as all the other ingredients of the regimen.
All the best, I hope that you stay pain free.
:)

Hey Putter,

Thanks for the feedback.  Taking all the nutrients listed in the anti-inflammatory regimen at the suggested doses is important.  Taking enough vitamin D3 (the loading schedule) at the start of this regimen is also important.  This will help prevent a relapse after an initial favorable response.

When CH'ers who are clearly deficient in vitamin D3 start taking this regimen at 10,000 IU/day roughly 10% experience an initial favorable response followed by some onerous CH hits.

What appears to be happening is the initial doses of vitamin D3 start working to prevent CH within 24 to 48 hours as soon as it's metabolized in the liver to 25(OH)D, but the immune system's regulatory T-cells also start gobbling up the 25(OH)D as well. 

The first few days of vitamin D3 results in a bloom in the number of regulatory T-cells so they may be consuming even more of the 25(OH)D along with the enzymes needed to metabolize it to 1,25(OH)2D3...  This may leave too little 25(OH)D along with dips in the availability of the essential enzymes needed to prevent CH.

The simple fix for this problem is to start the vitamin D3 loading schedule.  This will ensure there are sufficient quantities of vitamin D3 and the other essential supplements to handle both the prevention of CH and activation of the immune systems regulatory T-cells.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Hi Batch,
Thanks very much for the added input. I have been reading a lot of your advice to others which has been equally interesting and insightful.
I am still tapering off prednisone, only 6 tomorrow. I had a CH this morning, after 5 pain free days. Not bad.
This afternoon my family and I arrived in New York State (vacationing) so I bought Vit. D3 5000iu and promptly took 20,000iu. We shall see what transpires, plus I will add the other supplements that I need.
I am really looking forward to having a chat with my Doctor and getting the lab test done.
Again thanks for the support.
Wishing those who read this PF days and nights.

I found the D3 and Omega 3 to be the most important ingredients of the regimen. But almost every other ingredient has really good reasons to be helpful as well - magnesium being a calcium-channel blocker much like Verapamil; Vitamin A which is needed in order to absorb the D3; Vitamin K with its crucial effect on blood vessels self correction processes (it also inhibits an enzyme that releases testosterone in the urine, which some of us lack); and so on.

I studied Vitamin D a lot when my daughter developed a bad case of early childhood caries. I stumbled on information about traditional diets and how they were high in vitamins and minerals that we don't get enough of in modern diets. I believe that taking high vitamin D cod liver oil and butter high in vitamin K were part of what worked to arrest her caries! I never expected all my research to be recycled to help my husband with CH!

This article may be useful to understand how important the cofactors are:

Is Vitamin D Safe? Still Depends on Vitamins A and K! Testimonials and a Human Study
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I have found the above site to have a lot of useful information about Vit D, A, K.

From my research, the best source of Vitamin K is butter - when it comes from cows eating rapidly growing grass in the spring and fall seasons. It's good to stock up on butter at the right time of year, freeze a year's worth, and use it in cooking and baking. (more info: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)

Please note I have no financial stake in any health-related products, information, or services. I am simply an obsessive researcher!

Thanks very much for your work on this Batch. My husband recently started a cobbled-together supplement regimen and I'm going to buy more supplements today.

Hey Feisty,

Where in BC?  I live 20 miles West of Seattle...

2000 to 3000 mg/day Vitamin C is great for teeth as well.  It helps eliminate tarter buildup and kills most of the bacteria and virus associated with dental problems.

Get you husband tested for 25(OH)D.  Be sure to ask for the actual serum concentration and not the doctor's interpretation of "adequate" or "normal."

While you're at it...  you should get your 25(OH)D tested too.  My wife has been on the complete anti-inflammatory regimen taking 15,000 IU/day vitamin D3 for over three years and loves it.  She's not a CH'er but she was a chronic migraineur for over 20 years...  She hasn't had a single migraine since starting this regimen.

80 ng/mL, (200 nmol/L) is a good 25(OH)D serum concentration to shoot for in order to prevent CH...  That usually requires a maintenance dose of at least 10,000 IU/day vitamin D3 plus the Omega-3 fatty acids and all the vitamin D3 cofactors...

Take care and please keep us posted.

V/R, Batch

Thanks for your kind reply Batch. We're in the greater Vancouver area.

I'm taking some of the supplements as well, and the children are too. We kind of "fell off the wagon" with consistency so this is a good wakeup call.


Quote:

Get you husband tested for 25(OH)D.

I am working on this. I have to get a doctor requisition for it AND pay for it - I checked with the lab  ::) . Unfortunately, my husband is extremely busy with his work schedule so it is really hard to get him to see a doctor. So frustrating. I might try to get him to see someone at a walk-in clinic on Saturday.

Feisty,

You can get a DIY 25(OH)D home blood spot test kit from ZRT labs through the Vitamin D Council at the following link.  They have a video that shows how to collect the samples you mail back to ZRT Labs.

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I have my entire family, wife, three kids, their spouses and seven grand kids all on the anti-inflammatory regimen. 

My daughter has been taking this regimen at 10,000 IU/day vitamin D3 for the last 18 months and she just delivered a beautiful baby girl.  Her OB was a little surprised at the vitamin D3 dose... but commented her labs looked great and the problem free pregnancy and delivery were reason enough not to change anything.

Colds and flu have stopped being a problem for all of us...

Take care,

V/R, Batch

Thanks Batch. I know that dh followed up on one of those home kits that was available locally - the price was insane though! I'll find out which one he sourced.

We get burned on these things in Canada - smaller market. I also found that many of the recommended supplements were not available in a large local drug store. I will order from iherb.com if necessary - I've had good experiences with them in the past.

[quote]You can get a DIY 25(OH)D home blood spot test kit from ZRT labs through the Vitamin D Council at the following link.  They have a video that shows how to collect the samples you mail back to ZRT Labs.

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FYI, they do not ship to Canada. I just ordered a kit here:
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To anyone reading this, I hope that you start/stick with the regimen that Batch is suggesting and get his help (and your doctor's help) with tweaking it. The results speak for themselves, and I am convinced of its safety - especially given the alternatives, which aren't great by comparison. I have a scientific background (not health related) so it's in my nature to want to understand and review the evidence at hand. Six years ago, after much research, I cured my daughter (who was 22 months at the time) of a horrible case of early childhood caries and the cure included Vitamins D3, A, K2, and associated minerals. That's when I first learned about the tremendous importance of these nutrients.

Batch, I hope you can humour me with a question about Vitamin A. The current regimen suggests 10,000 IU of vitamin D3 and 3,000 IU of vitamin A (for men), daily. That would be a 0.3 ratio of vitamin A to D3. I am trying to reconcile this recommendation with those of a school of thought that suggests higher proportionate doses of Vitamin A, and proposes that vitamin A acts synergistically with D3, and that each vitamin protects against toxicity of the other.

This article that reviews the thinking on supplementation summarizes recommendations of ratios of 10:1, 5:1, 4-8:1 for Vitamin A to Vitamin D from a variety of health advocates:
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From the same author:

Quote:

Another study published in the European Journal of Epidemiology in 2001found that South Indians with 25(OH)D levels higher than 89 ng/mL (223 nmol/L) were three times more likely to have suffered from ischemic heart disease than those with lower levels – and of course with such a dramatic elevation of heart disease risk, the risk may have begun increasing at levels substantially lower than 89 ng/mL. Neither of these studies were designed to show that high levels of 25(OH)D cause decreases in bone mineral density or increases in heart disease risk, but it is possible.  As I especially emphasized in my Wise Traditions and Medical Hypotheses articles on vitamin K2, bone resorption and blood vessel calcification are prominent symptoms of vitamin D toxicity in animal experiments. I also emphasized the role of vitamins A and K2 in protecting against vitamin D toxicity.  So, even if these levels are in fact harmful, they may only be harmful or may be primarily harmful in the absence of adequate vitamins A and K2. The presence of the other fat-soluble vitamins could even turn these levels from harmful to beneficial.

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This article discusses the evidence for the hypothesis that vitamin D3 supplementation increases the need for Vitamin A:
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So my question is, how did you decide on the current ratio of Vitamin A to D3?

Respectfully,
Feisty

Hi Batch and all,
An update for all... I'm doing quite well, actually I haven't felt so good in many years, its wonderful. (thank you Batch :) ) I've been following the Anti Inflammatory regimen since Sept 2013, test 25(OH)D every 3 mths and living PF.
I want to share this video/link I read on Clusterbusters FB page, and would like Batches comments.
Dr. Kate Rheaume-Bleue explains in detail the need and benefits of the K2 supplement.
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Do you agree with Kate Rheaume-Bleue opinion, with every 1000mg D3, we should supplement with 100mcg's of K2?  Therefore if we are on a daily maintenance of 10,000 D3, our K2 intake should be around 1000mcg/day.
Batch, please share your thoughts.
Much appreciated, as always :)
Sue

Tweaking the D3 dosing - I found a useful chart for those who want to use D3 supplementation to achieve a specific blood level. If you already have your blood level of 25(OH)D, you can go to page 2 of this series of charts:
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Look up how much D3 you should take per day to achieve a 60 ng/ml (Batch's recommended minimum) based on your weight and your starting level of  25(OH)D. See the example given under the chart.

Also, I found it interesting to read in this journal article that 54–90 ng/mL 25[OH]D level is considered "normal in sunny countries" (>100 ng/mL flagged as "excess"):
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That overlaps nicely with Batch's recommendation of >60 ng/mL, and it is a reassuring counterpoint to some of what I've read cautioning about maintaining levels that high.

sue_g wrote on Jul 30^th, 2014 at 8:23pm:

Do you agree with Kate Rheaume-Bleue opinion, with every 1000mg D3, we should supplement with 100mcg's of K2?  Therefore if we are on a daily maintenance of 10,000 D3, our K2 intake should be around 1000mcg/day.

Sue, Batch is currently recommending a K supplement - see his updated first post in this thread.

Vitamin K is very important!

Quote:

Vitamin K2 is the substance that makes the vitamin A- and vitamin D-dependent proteins come to life. While vitamins A and D act as signaling molecules, telling cells to make certain proteins, vitamin K2 activates these proteins by conferring upon them the physical ability to bind calcium. [...] [Chris Masterjohn has] therefore hypothesized elsewhere that vitamin D toxicity is actually a relative deficiency of vitamin K2.

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Ideal would be dietary sources of Vitamin K of course:
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Thanks Fiesty!  pfw's to you :)

Batch wrote on Jul 21^st, 2014 at 8:21pm:

Feisty, You can get a DIY 25(OH)D home blood spot test kit from ZRT labs through the Vitamin D Council at the following link.  They have a video that shows how to collect the samples you mail back to ZRT Labs. Take care, V/R, Batch

Just to let you know - they will not ship the test to NY. Disappointing...

anyway, my DH suffers from CH. Tonight he begins the Vitamin therapy. Fingers and toes are crossed! O2 has been a godsend - I can't wait to see the results of the vitamins. Thank you for all of the incredible information and support!

Feisty,

Regarding your question on how I decided how much vitamin A (retinol) to take in this regimen.  With the exception of vitamin D3, the doses listed for the remaining supplements are consistent with the RDA recommended by several nutritionists and endocrinologists.

The basic guidance on vitamin A (retinol) is a little is good and too much isn't.  Accordingly I stuck with the RDA.

That said, this RDA for vitamin A (retinol) doesn't take into account the larger doses of vitamin D3 we take to prevent CH.  As long as this regimen is providing a good preventative effect for CH, 3000 IU/day vitamin A (retinol) is likely sufficient.

However, if there are still CH problems with a 25(OH)D serum concentration between 80 and 100 ng/mL, I see nothing wrong in taking 5000 to 10,000 IU/day vitamin A (retinol) with the anti-inflammatory regimen... 

This same principal apples to vitamin K2...  The more vitamin D3 you take, the more vitamin K2 you need.

As you've pointed out there's a very beneficial synergistic effect when vitamin D3, vitamin A (retinol) and vitamin K2 are taken together.  You've provided excellent links that other CH'ers should read as well.

Thanks and take care,

V/R, Batch

Thanks for the clarification about how the Regimen is designed Batch :) .

I am about to order the B complex vitamins online.

Could someone please advise on which B complex to buy?Which of the B vitamins are important for the anti inflammatory regimen and in what doses?

Thanks for the help.

J

J,

Google "vitamin B 50"

You only need 90 capsules/tablets for the 3-month course.  After that, the Mature-Multi is formulated with sufficient B vitamins to prevent any further deficiencies.

Hope this helps.

Take care,

V/R, Batch

Thanks.

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Perfect!  You get 50 mg each of the seven B vitamins and 400 mg folic acid.

I spoke with Dr. Stasha Gominak who suggested I add the vitamin B 50 to the anti-inflammatory regimen.  The rational she provided sounded a little strange until I looked into it further. 

The B vitamins help colonize friendly bacteria in the GI tract and they work their magic from their...

Take care and please keep us posted.

V/R, Batch

Allright, thanks. I'll try the regimen with the B-complex. Third time lucky, I hope  :)

A long overdue update.  Began the regimen two years ago to help break a feisty cycle.  Been taking 10,000 vit d3 along with fish oils, need to return to the calcium and magnesium but I have had a two year break.  I believe I am either returning to a new cycle or in the middle of one.  I have been getting no more than kip4 pain but the full on sweats that I always have had.  It has been 3 weeks and "normally" I am full on into by week 2.  Hoping that the regimen is keeping it at bay or bearable. 
Probably time to re-read the entire regimen and hopefully get it down to kip0.

Hey Birdman,

Thanks for the update.  Magnesium is essential in the process of metabolizing vitamin D3 to it's active hormonal form 1,25(OH)2D3, calcitriol.

Zinc plays a similar role and also helps form the vitamin D receptors (VDR) at the genetic level.

Boron also plays a role in improving vitamin D3 absorption.

In short, you need all the vitamin D3 cofactors along with the vitamin D3 and Omega-3 fish oil.

It's not uncommon for a cold, flu, or sub-clinical allergic reaction to trigger the body's immune system into gobbling up 25(OH)D leaving too little to prevent CH.

You may need a 50,000 IU loading dose once a week for a couple weeks along with an increase in your daily vitamin D3 intake  to 15,000 IU/day in order to quell the low level CH hits.

Take care and please keep us posted.

V/R, Batch

Ok so my husband recently seen a neurologist who is ok with the vit d regimen but advises against the vit k.  My husband is on verapamil so tachycardia and bp issues so I'm thinking that's why he said not to take vit k.  But upon reading the posts here vit k is one of the major key ingredients to making the body retain the vit d.  Does anyone have any history with this type of situation we are in?

Thanks

Thanks Batch!!  Would magnesium sup and a multi vitamin be sufficient or not enough??  Already upped the D3 to 15,000 as it has ramped up a bit.  Not full blown yet but heading that way.  Definitely going to do the weekly loading dose starting today. 

Hey Lacie,

Is your husband taking verapamil for a heart condition, CH or both?

There are two kinds of vitamin K available over the counter...  Vitamin K1 - The Klotting vitamin... and vitamin K2.

Vitamin K2 is a family of chemical compounds called menaquinones... They don't affect blood clotting.... but they do help direct serum calcium away from soft tissues and arteries towards building bone mineral density where the K2 acts like a catalyst in bonding calcium to our bones...   

The menaquinones most often associated with vitamin K2 are MK-4 and MK-7. Both are effective but MK-7 has a much longer half life.  I take a combination of the two.

The Life Extension Foundation has an excellent article on vitamin K1 and vitamin K2 at the following link.  Discuss this article with your husband's neurologist.

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There's another article on vitamin K2 you should discuss with your husband's neurologist at the following link:

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There are several studies that have shown vitamin K2 does not result in abnormal changes blood clotting. 

"Both animal and clinical studies support the conclusion that vitamin K2 has no abnormal hemostatic activity. In one study, vitamin K2 given to rats at a dose of 250 mg/kg body weight per day for 10 days resulted in no appreciable change in blood coagulation characteristics or platelet aggregation.⁴⁰"

"In a clinical study, 29 elderly, osteoporotic patients were given vitamin K2 (15 mg three times daily, 30 minutes post-meals) for 12 weeks and monitored for any change in hemostatic balance. After 12 weeks of administration, all hemostatic markers remained within normal range.³⁸

In another study, examining the effect of vitamins K2 (45 mg/day) and D3 (1 mcg/day) on BMD in postmenopausal women, hemostatic measures were also examined. Increases in both coagulation and fibrinolysis were noted, but remained within normal range and in balance, with no adverse reactions observed.²⁶"

See the following link for the numbered references above:

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Hope this helps...

Take care and please keep us posted.

V/R, Batch

Birdman,

Good question...  Most multi-vitamin formulations contain less than 100 mg of magnesium... usually around 60 mg.  That means taking a 400 mg magnesium capsule plus the multi-vitamin provides a sufficient amount of magnesium.

Hope this helps.

Take care,

V/R, Batch

Hey Batch, Hope this note finds you and Joyce well and pain free :)
I had a neuro appt today, took some information with me, nice to say... I've been pf for almost a year. (txs to you).
Test Dates       25(OH)D      PTH
Sep 25/13         86      
Oct 11/13       170      
Nov 8/13        373      
Dec 18/13      155      
Jan 17/14       178      
Mar 18/14       184             3.7
Jun 11/14       182             3.7
Sep 11/14       216             3.9

I'm still overwhelmed with the fact I haven't experienced a CH cycle in almost a year.  Dr Stewart Reid, neurologist here in Kingston, doesn't seem to have any opinion of the Vit D regimen.  I think he's so busy with other neurological patients, CH's are the lower ones on his list. I spoke about K2, he looked confused, didn't seem to even know what K2 was.

At least he did requisitioned a ionized calcium test for me today.

Anyways, one question for you Batch.  What are you taking for K2 and what would you suggest I take with a daily intake of 10,000D3?

Appreciate your continuous support, thanks so much :)
Sue

Hey Sue,

Your lab results look great!  For CH'ers new to this thread, Sue lives in Canada and the medical diagnostic labs there measure 25(OH)D in nmol/L where labs here in the US measure 25(OH)D in ng/mL.  The conversion factor is 2.5.  In other words, to convert from nmol/L to ng/mL divide by 2.5 and from ng/mL to nmol/L multiply by 2.5.

PTH - The parathyroid hormone serum concentration is a good indication of serum calcium homeostatic processes.  PTH signals the kidneys to metabolize 25(OH)D to 1,25(OH)2D3.  This active hormonal form of vitamin D3 mobilizes calcium from the gut to maintain optimum serum concentrations and a healthy bone mineral density. 

People who are vitamin D3 deficient, a 25(OH)D serum concentration below 75 nmol/L, (30 ng/mL), tend to also have a high PTH serum concentration in order to keep serum calcium within normal reference range. 

As a side note, people with a vitamin D3 deficiency are almost always deficient in magnesium.

The normal reference range for PTH is 1.8 to 7.5 pmol/L.  A PTH serum concentration of 3.7 to 3.9 pmol/L is well within the normal reference range and below the midpoint of 4.5.  This indicates a healthy parathyroid function. This is also consistent with data from other studies involving vitamin D3 therapy at the pharmacological doses we take.

Regarding vitamin K2...  I take the Super K with advanced K2 Complex from Life Extension Foundation.  This provides a healthy dose of vitamin K1 and K2, (both MK-4 and MK-7). 

See the following link for more detail:

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I would also point out that some physicians who specialize in vitamin D3 therapy and understand vitamin K2 requirements opine that higher doses of vitamin D3 require higher doses of vitamin K2.  The ratio is 100 ug of vitamin K2 PER 1000 IU of vitamin D.

That means a tablet a day of the LEF Super K with advanced K2 complex is an appropriate dose.

See the VitaminDWiki link on vitamin K2 for additional info:

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Hope this helps.  Thanks again for the update and please keep us posted.

V/R, Batch

You are the BEST Batch!!
Please let us know when you attend any CH meetings or such.  I'd love to shake your hand!!
p.s. or give you a hug  [smiley=blush.gif]
Thanks so very much,
Take care!
Sue

Just got my lab test results and my 25(OH)D is 102 ng/ml.

Still not PF. Had 4 nights without attacks, than 4 nights with attacks. Still getting 1-2 daily attacks. BUT:

a. almost no shadows.
b. most of my attacks are easily aborted with 2-4 minutes of O2 at 15lpm.
c. some attacks require Imitrex, but only 1-2mg each time (using the "Imitrex tip").
d. had my 22 liter O2 cylinder replaced the other day. Managed to use it for almost 4 weeks, before it went empty.
e. I'm far less sensitive to certain triggers, especially to strong odors.

So I guess I'm not the best example for the regimen success but there is a significant improvement compared to the days when my 25(OH)D was around 30 ng/ml.

sue_g wrote on Sep 17^th, 2014 at 5:39pm:

You are the BEST Batch!! Please let us know when you attend any CH meetings or such.  I'd love to shake your hand!! p.s. or give you a hug  [smiley=blush.gif] Thanks so very much, Take care! Sue

I second that -- Batch is a lifesaver and deserves a round of applause and many hugs!! [smiley=applause.gif] [smiley=applause.gif]

Thanks for this thread Batch. I see it has been a long time in the making.
I am new here but have been with the beast for about 12 years now.
My cycles are relatively short (4-6 weeks) and spread themselves out over long periods(12-18 months).
I have been out of cycle for almost 2 years, but, about a week ago I started to get that feeling again.
I tend to have all day shadows with occasional ice pics throughout the day for about a week, and then I get a full blown event that lasts for up to 4 hours for the next 3 to 4 weeks. then they retreat to the shadows again for about a week.
I have tried a lot of medications O2,Relpax,and Imitrex.
The sumatriptan was the only thing that worked for me.

Anyway, I remembered last weekend about this forum, and looked it up again. I found your Regimen posts and read through them.
I was experiencing shadows all day while at work and stopped at the pharmacy on the way home and picked up some D3 and fish oil.
After dinner, I took 5000I.U. and 1000 mg fish oil cap with only 680 omega 3's.
Before bed (2 hours later) my shadows were almost non existent and I slept great.
Woke up this morning with no shadows and took another 5000I.U. after my cheerios.
I have felt great all day with only a couple hints of a shadow here and there.
I know this is not a lot of technical data, and that I'm not taking all the things that were recommended, but wanted to let you know that your findings seem to make a lot of sense and I am pretty sure that you are on to something with the D3.
Thanks so much.
I will let you know how it goes with only the D3 and Omega 3. 
   

Hey Schmedley,

Thanks for the headzup you've started taking vitamin D3...  You play the board game Acey Deucey?

Taking only vitamin D3 and Omega-3 will work quite well to prevent CH... for a while... until you burn through your available serum magnesium... then they won't...

You'll need around 400 mg/day vitamin D3 in order to sustain the enzymatic processes that metabolize vitamin D3 to it's active hormonal form, 1,25(OH)2D3.  The other essential cofactors can be found in a tablet of Kirkland's Mature-Multi.

Take care and please keep us posted.

V/R, Batch

Shalom Shooky,

Thanks for the detailed feedback. It appears you're starting to respond to this regimen so it may be just a matter of a few days to a few weeks before you're completely pain free.

That said, with your 25(OH)D over 100 ng/mL and you're still getting some hits, it appears "tuning" may be in order.

Understanding a little about vitamin D3 phamacokinetics, (what the body does to vitamin D3) and vitamin D3 pharmacodynamics, (the pharmacological effect of vitamin D3 on the body), may help in the "tuning" process.

Your serum concentration of 25(OH)D is near the high end of the green zone so the first part of vitamin D3 pharmacokinetics where the liver metabolizes vitamin D3 to 25-Hydroxyvitamin D3 a.k.a. 25(OH)D is working as advertised and you're taking sufficient vitamin D3...

The next phase where 25(OH)D gets metabolized to 1,25(OH)2D3 at the cellular level, requires another enzyme, 25-hydroxyvitamin D-1alpha-hydroxylase.  This enzymatic process requires magnesium. 

As there was sufficient magnesium to support the enzymatic process that metabolized vitamin D3 to 25(OH)D, it would appear there's also sufficient magnesium to support 1alpha-hydroxylase in producing 1,25(OH)2D3. 

It's this extrarenal autocrine signaling path of vitamin D3 metabolism that occurs at the cellular level that appears to be responsible for the mechanism or mechanisms of action that prevent CH. 

Molecular biologists have found that 1,25(OH)2D3 combines with retinoic acid, a metabolite of vitamin A (retinol) and that this complex molecule attaches to a gene at what are called vitamin D response elements (VDRE).  VDRE contain a vitamin D receptor (VDR) and also a retinoic acid receptor (RAR).

VDRE target genes play key roles in cellular metabolism, bone formation, cellular growth, differentiation, cell death and in controlling inflammation. 

Where all this gets really interesting is a 2010 study identified 2776 genomic positions occupied by the VDR and 229 genes with significant changes in expression in response to vitamin D3.  532 genes have been put forward as regulatory targets of retinoic acid...  Accordingly, it’s very likely the suppression of cluster headache involves several of these VDRE. 

Molecular biologists have also found VDRE contain zinc at the receptor attach points...

That makes one of the short answers in tuning the anti-inflammatory regimen in your case, increase the vitamin A (retinol) and zinc.

Finally, none of the cluster headache abortive or preventative treatments work very well if serum pH is low...  Too much acid.  The best thing to try in this case is an alkaline forming diet... 

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The GOMBS diet can also help.  GOMBS stands for Greens, Onions, Mushrooms, Beans-Berries and Seeds-Nuts.  A handful of each a day would be good for starters. 

You can find more about GOMBS diets at the following links:

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Hope this helps.

Take care and please keep us posted.

V/R, Batch

I've been on the regimen for nearly a month now so I thought I'd give an update. My headaches have definitely been reduced but not consistently. Here's how its gone. It took about 15 days until I experienced a significant reduction in my headaches (probably 50-75% better in terms of frequency and intensity). This good response lasted a few days and I also had my D3 levels checked for the first time during those few good days. My results were 81 ng/ml.

Then I caught a cold and my headaches returned as strong as ever. My theory was that the cold lowered my D levels so I bumped up my dose to 40,000 IU a day. My cold lasted a week, but once it went away, my headaches got significantly better again for a few days. So then I started decreasing my 40,000 IU dose by 5,000 a day to get back to recommended dosage. After 3 days, when I got to 25,000 IU, my headaches got bad again. So now I've bumped back up to 40,000 a day for a couple days but no relief.

There is no question that this regimen has helped my headaches significantly, more than any other treatment I've tried. But I'm just having trouble seeing consistent results. I get a few really good days, and then a few bad days. It's a pain because I keep getting my hopes up and then get slammed again. I'll probably order another vitamin d test kit this week, unfortunately it will likely take about two weeks for me to get results.

Hey Fitzer,

Thanks for the outstanding feedback...  Your observations, theory and course of action are all spot on.  Trial and error is a powerful discovery tool and learning aid...  I've been down that road a few times with respect to this regimen...

While 80 ng/mL is a sufficient 25(OH)D serum concentration to keep most CH'ers CH pain free...  some of us require more. 

I've been in contact with several CH'ers who need to maintain a 25(OH)D serum concentration between 100 and 140 ng/mL under a physicians supervision to stay pain free.  They're also being tested frequently for serum calcium and PTH.

I've also seen lab data that indicates it's not uncommon for CH'ers to experience ± 20 ng/mL variations in their 25(OH)D response to a sustained intake of 10,000 IU/day vitamin D3... with no other apparent comorbid conditions like a cold, flu, or allergy present.

Bottom line...  we're all still learning how this regimen works and how to make it more effective in preventing our CH. 

Don't be afraid to take vitamin D3 loading doses if your CH return... or to set a higher maintenance dose.   Following up with another 25(OH)D home blood spot test is prudent once you've been on a new maintenance dose for a few weeks.

It's also wise to keep your PCP or neurologist in the loop... if for no other reason than to provide continuing medical education (CME).

Take care and please keep us posted.

V/R, Batch

Hey Batch.
Quick and dirty.  Mild shadows started about ten days ago.  Noticeable uptick last Friday.  Started D3 5000 IU x 4 Saturday along with Fish Oil 1200 mg x2, Magnesium 500 mg, and Multi 50+ (made with D3).

Shadows turned to CH onset Saturday (all am) with two mild hits which were pushed back with hot showers.  Sunday same except three and hot showers.  Monday see neuro to secure O2, Pred and Vrap. Monday same except six hits.  02 gone aborting four and two pushed back with hot showers.  Hit twice today at work during the day! Nothing terrible and road them out.  Drained away rather quickly.  It's lunch (stuffed bell pepper BTW) and here I am.

1. Reluctant to bump up D3 as I am on outdoor job sites regularly and I work in the garden on weekends.
2. The number of attacks are as frequent as peak cycle but none are grueling and topping out at twos.
3. Reluctant to start Vrap at this time.

Odd cycle thus far but I'll take it.  Fear ever present.

You are the nuts.

Steve G

On another note...we will be hiking in the GSM in late October. I want to be drinking Tennessee whiskey and seasonal beer on the back porch of my cabin after a long hike in the Park.

I want them gone Batch!  I want them gone.

Hey Steve,

Thanks for the update...  Don't be afraid to load up on vitamin D3 just because you work outside...  You'd need to be running around in a speed-o without any sunblock for 30 minutes a day 5 to 6 days a week before cutaneous vitamin D3 would become a factor.

Following the 4-week vitamin D3 loading schedule is the fastest way to get through the uptick in frequency and into the PF green zone.

There are a lot of Multiple Sclerosis patients taking 40,000 IU/day vitamin D3 plus some of the cofactors.  They're maintaining a 25(OH)D serum concentration around 140 ng/mL in order to keep their MS in remission... 

They're also drinking lots of water and avoiding calcium and dairy products, but no problems with serum calcium or PTH reported...  and all are under a physician's supervision with frequent testing.

I agree with holding off on the verapamil...

As it appears your CH hit in the morning and during the day, try taking the 20,000 IU/day in the evening by popping the four 5,000 IU softgels between your back teeth. Hold the contents between your cheek and gum for 15 minutes and avoid drinking any fluids during that time.  They taste slightly sweet and the gelcap turns into a gummy bear consistency before dissolving.

This method of taking vitamin D3 bypasses the GI tract and enables vitamin D3 to pass directly into the bloodstream.  This should ensure a maximum 25(OH)D serum concentration during the day.

If the CH shift into afternoon and evening, pop the 20,000 IU of vitamin D3 gelcaps in the morning when you get up.

Take care and please keep us posted.

V/R, Batch

Update time. Have been at 20,000 ii now for almost two weeks with a loading dose of 50,000iu. Also fish oils; magnesium 400 and a Multi. Also went the vitamin mm route for the their time last night. Getting slammed with possible slapbacks or everyday clusters. Actually, this morning vomited and came very close to passing out during a kip10. All day today still getting smacked.  Not as intense but beating me down still. Any thoughts on upping my daily dose or just stick with it?  I may try the suggestion you just made about popping them with my teeth. Avoiding the gi tract a very good idea as I also have crohns disease. I need some relief soon. Hope everyone is well.

Hey Birdman,

Sorry you're having such a rough time...  I don't need to tell you that you're battling a double whammy with CH and Crohn's...

Do you have oxygen therapy available?  The latest methods with hyperventilation can abort a CH in an average of 7 minutes if started early.

One of the problems you're facing is Crohn's can interfere with vitamin D3 absorption... 

Popping the vitamin D3 softgels between your back teeth and holding the contents between your cheek and gums for 15 minutes will bypass the GI tract, get the vitamin D3 directly into your bloodstream and that should help increase serum 25(OH)D a lot faster.

The complete regimen should also help reduce Crohn's symptoms once you get your 25(OH)D well into the green zone at or above 80 ng/mL.  See the following link:

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Take care, hang in there and keep us posted.

V/R, Batch

Batch,
Bumped the D3.  Only two minor, minor outbreaks overnight.  Just waking up.

I will keep you posted.

Thanks,
Steve G

Thanks Batch. I do have o2 tanks, regulator at 15lpm. May need to by higher flow regulator. I have not been able to attempt the hyperventilation method as I have ramped so quickly I am unable to do much. Last night I got hit every hour for ten minutes and o2 cleared it except this morning. Exhausted is the word of the day. Trying to convince myself not to do a pred taper and imitrex but I am wiped out and the anxiety levels are dangerously high. Not a good mental state this morning. To pred or not to pred...that is the question

Dear Batch,

Thanks for the thorough answer. Before reading it I started thinking I may be megnesium deficient and have just changed the supplement I was using. But if I understand you right than this can't be the problem (?)

I'm already taking 22mg zinc a day so I guess the problem isn't there. Will try upping the Vitamin A and some sort of an alkaline forming diet. Although I already consume a lot of lemon juice as it is.

About the GOMBS diet - Dr. Fuhrman recommends eating hummus and tahini (which I do), but the list of Acid / Alkaline Forming Foods says chickpeas and tahini are acid forming. So who's right?

Shooky,

Good question...  The answer is both are right... but for different reasons.  A GOMBS diet is not completely alkaline forming... but it is very healthy.  I still love a dish of hummus (with tahini) covered with EVOO and eaten with warm Greek Pita...

The other thing to try is a pro-biotic or a live Greek yogurt...  The 3-month course of vitamin B 50 will also help colonize friendly bacteria in the GI tract.

Regarding the magnesium and zinc.  400 mg/day zinc and 11 mg/day zinc are the RDA. 

You can take magnesium up to the bowel limit, but 400 mg/day is sufficient for most of us and 600 mg/day is ok for a few days particularly when taking the 50,000 IU loading doses of vitamin D3...  The UL (Upper tolerable limit) for zinc is 40 mg/day but I wouldn't go over 50 mg/day...  A dozen medium sized oysters will provide as much as 75 mg zinc.

Take care and please keep us posted.

V/R, Batch

Back with another update. I had a terrific day on Tuesday. Only got hit bad one time and just a few lingering shadows throughout the day, which is a really good day by my standards. And the good effects continued until midday Wednesday. But in the last 36 hours the beast has come roaring back. Lots of hits, constant shadows.

The only thing I can think of that I've done differently in the past few days is that I began taking Betaine HCl on monday and have been increasing the dose daily. I was recommended to take it because of some digestive issues that I suspect are caused by low stomach acid. Not going to get into too much detail about that issue here, and it's obviously not as big of an issue as my CH's. I'm just curious if Betaine HCL (which increases stomach acid) could in some way be interfering with the vitamin regimen, my verapamil, or just making my headaches worse all on its own. Going to stop taking it indefinitely and see what happens I guess.

Hey Fitzer,

Thanks for the update...  Anything that increases systemic acidity and that results in a low arterial pH, will adversely affect nearly all cluster headache medications making them less effective or not effective at all.  That includes the anti-inflammatory regimen.

I can't say for sure, but starting the Betaine HCl and increasing its dose is likely the cause of the increased frequency and intensity of your CH...

I'm not a doctor... However, if you're having GI tract and stomach problems, there are other more effective natural treatments.  Avoid sugar and wheat products containing gluten...  The GOMBS diet is a good place to start.  Greens, Onions, Mushrooms, Beans-Berries and Seeds-Nuts can work wonders.  A handful of each a day can really help.

Adding probiotics, live yogurt cultures, fermented vegitables like sauerkraut, vitamin B 50 and live cider vinegar cultures can also help.  All of these food types help grow friendly colonies of bacteria in your GI tract.  We need them to function properly.

If you try the above and are still having problems, see your PCP for a checkup and complete set of labs...  You could have other deficiencies in play.

Take care and please keep us posted.

V/R, Batch

Batch, I'm already taking B-50 for some time and have at least one probiotic yogurt a week. I also get most of my Vitamin A from vegetables (carrots, sweet potatoes, greens + a weekly chicken liver), and don't eat much meat or refined sugar/carbohydrates. So I guess my diet falls somewhere between the GOMBS and the Alkaline forming diets as it is. And I also take Melatonin which, if I'm not wrong, has an alkalizing effect as well.

So what AM I doing wrong?

Shanah Tovah Shooky,

You're not doing anything wrong...  With the exception of melatonin, I've done the same things following a few of my 25(OH)D burn down tests...

You may be experiencing a sub-clinical allergic reaction to something...  Not enough to notice symptoms, but enough of a reaction to trigger an immune response.

The only thing I can suggest at this point is increase the Omega-3 fish oil... and take another 50,000 IU vitamin D3 loading dose.  Both should increase the anti-inflammatory effect and bumping your 25(OH)D up a little higher may be all it takes for a more complete CH preventative response.

Take care and please keep me posted.

V/R, Batch

I surely will. Shana Tovah U-Metukah ("and a sweet one") Batch.

Latest update. Still taking the d3 in my cheek and allowing to absorb. Cycle ended but has re started on the opposite side. Day 5 of it and it happens to coincide with some major stress as I have had to move my small business this past weekend. Lot of high stress days and wondering about the impact. Had to stick with trex and 02 as abortives as the work had to get done. Could I be starting another cycle so quickly on the opposite side???  Someone tell me no please. Guessing I should get bloodwork before raising higher d3 dosage. Grrrrr >:(

Hey Birdman,

If you want to address this most recent problem with CH scientifically...  stay at the same dose of vitamin D3 and obtain the lab test for 25(OH)D asap.  It appears your 25(OH)D serum concentration is at the tipping point.

That said, enduring needless CH attacks is silly when the likely solution to stop these attacks is to increase the intake of vitamin D3.

The simple analogy:

Is it better to know the tipping point in 25(OH)D serum concentration at and below which CH continue? 

or

Have the confidence in knowing how to stop breakout CH by increasing vitamin D3 intake?

Regarding CH switching sides...  The incidence of this phenomenon is higher than most people with CH think.  Results from a survey of 1134 CH'ers conducted by Dr. Todd Rozen and Royce Fishman found the following:

3. Pain location
   - 49.1% right-sided
   - 44.1% left-sided
   - 3.1% bilateral pain: CCH 8.3% vs ECH 1.5%.
   - 30.5% stated that pain has changed sides since onset of CH
   - 8% stated that pain shifted sides during an individual CH attack

Hope this helps... 

Take care and please keep us posted.

V/R, Batch

So...haven't needed trex since 10/7, but o2 had been used. Lot of shadows, some more significant than others.  I hear you on the tipping point but am heading on the road tomorrow morning so it looks like increasing the dosage it is for now.  Thanks for reply!!  Will keep posted

hi Batch,
i started the regimen about two weeks ago. i'm seeing some improvement. couple of questions for you if you don't mind... you mention that a 2:1 ratio for calcium to magnesium is recommended, however on your chart it shows something a bit different. can you advise as to how much calcium citrate and how much magnesium i should be taking daily?
also, i have not been able to find the K2 at an affordable price. is the k2 crucial? what are potential effects on not taking the k2 for a while? thanks

Hey Justsammer,

Great questions.  I take the Kirkland brand (Costco's) Mature Multi.  It has 220 mg of calcium and 50 mg magnesium.  I also take a 400 mg capsule of Nature Made magnesium (liquid soft gel).

The table illustrating the latest supplements and doses to be taken as the anti-inflammatory regimen shows 220 to 500 mg/day calcium and 400 to 500 mg/day magnesium.

My rationale for taking the lower dose of calcium (220 mg/day) and 450 mg/day magnesium follows:

I'm a cheese head (I eat lots of cheese) and consume a diet high in calcium so 220 mg/day supplemental calcium is sufficient for me and likely has me near a 1000 mg/day calcium intake from all sources.

That puts me close to the 2 to 1 calcium to magnesium ratio.

Of the two mineral supplements, magnesium is the most important as it's an essential vitamin D3 cofactor.  It supports the enzymatic processes that metabolize vitamin D3 to 25(OH)D3 in the liver and that also metabolize 25(OH)D to 1,25(OH)2D3 at the cellular and nuclear level throughout the body...  including the trigeminal nerve cells...

Regarding the vitamin K2...  It isn't essential in preventing CH...  That said, it is a vitamin A&D cofactor...  In addition, due to the increased calcium kinetics made possible by the vitamin D3 doses we take... it's prudent to take vitamin K2 as it directs calcium away from soft tissues and arteries towards building bone mineral density...

For CH'ers not on blood thinners, I suggest the Super K with advanced K2 complex from the Life Extension Foundation (LEF).  It's formulated with vitamin K1, the clotting vitamin, and the vitamin K2 complex (MK-4 and MK-7).

You can buy Super K directly from LEF, from Amazon or a lot of other Internet outlets.  Either way at ~ 20 cents a tablet less shipping, it's pricey compared to the other supplements in this regimen.

For CH'ers taking blood thinners prescribed by their PCP or cardiologist... (warfarin=rat poison :o  )... you'll need to take only vitamin K2 (MK-7)...  The best deals are from NOW...  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

The vitamin K2 (MK-7) will run 15 to 16 cents a tablet less shipping.

Hope this helps.

Take care,

V/R, Batch

Hi all. Thought I would give you a quick update. If you look back in this thread, you will see that I was doing well on this regimen until my headaches came back with a vengeance a few weeks ago. I originally blamed it on a new digestive supplement I was taking. But after going back and forth with Batch via e-mail, we agreed that it was actually likely due to insufficient calcium in my diet. When I increased my dairy/calcium intake, my headaches started getting progressively better again.

This past weekend, I was starting to feel great. Only was having a couple mild hits a day. Then my luck went south. I started getting sick on sunday and ended up with what I believe was a 24 hour stomach bug. Well, my headaches have now returned to the usual frequency/intensity, likely due to the stomach bug depleting my d levels I think.

So frustrated right now. This is the second time I've started experiencing a significant positive response, only to get sick and have my d levels crash. Well, I've been taking an aggressive dose of 50,000 IU a day for a while now (talked about this with Batch) because it seems that I just don't absorb the D as well as others. I'm considering upping the magnesium (currently at 600 mg) as I know its vital for d3 absorption. Also, I've been trying popping some of the D gel caps in my mouth and keeping the contents in there for a while, in hopes that it might be absorbed into my bloodstream better that way. I noticed that Batch had recommended this method to a few others using this regimen so I'm giving it a shot now. I'm angry and depressed to be honest but I'm still optimistic that this regimen will work eventually. I think it's just going to take more trial and error. Getting my levels tested later this week.

Hi all,

Just a quick update - I've been on this regiment for over a year - and I've had few if any relapses -  My D3 blood work comes back in the 90 ng/ml level every few months - most recently it dipped to 72 as I had just had a nasty sinus infection that felt like a cluster at first!  Other then that my health has been really good, even may have lost a few pounds.  If you are just starting on this regiment - be patient, get your blood work done if possible - that will let you know where you are starting from , then do one every month until you are in the green zone.  That is the only true measure of if you are where you need to be.  I had about a three month period where my hits were less, but I still had pain, but once i hit the 85 ng/ml level i really felt much better.

Update...upped the dosage to 40000iu but still getting hit on the new side.  They had minimalized to 20-30 minutes of around kip4-5 until the last two days were it has returned to full blown 60 minute kip 8-9. O2 keeps it somewhat manageable so I can avoid the trex most of the time.  The nuero wants to add the extended release version of toprimate.  Just what I need, another damn drug that doesn't work

As I backtracked, I realized my dinner Saturday night probably was the culprit for the upkick in kip strength. Anyone have any opinion on how long it takes to rid the body of preservatives etc?

Hey Birdman,

I've not seen any correlation between preservatives and CH... but that doesn't mean they don't exist.  I suspect another comorbid condition, we've miss something you need to be taking or both are responsible for the continued CH...  What brand of vitamin D3 are you taking?

If you've not already done so, lab tests for serum 25(OH)D, calcium and PTH are in order... In the mean time drop back to a vitamin D3 maintenance dose of 10,000 IU/day and cut the calcium for a week, but stay on the magnesium.

Take care and please keep us posted.

V/R, Batch

Thanks Batch. Bloodwork before cutting back I assume?

Birdman,

Dealer's choice....  Just don't wait too long.

Take care,

V/R, Batch

Thanks. And love the use of "dealers choice".   Well played

Hi Batch,

It's been awhile since I've posted.  My first/last post was on Dec. 17, 2012 to let you know our progress in your original thread.

It's been almost 2 years and my wife(then girlfriend) has been PF as the regimen prevented CH from even happening back then.  She took the regimen for about 2 months, stopped, and has been PF for roughly 22 months until 3 nights ago.  No shadows to warn her this time.  On Tuesday, Oct. 21, she was administered an IUD birth control.  Two nights later she had her first cluster in almost 4 years(as the regimen prevented the previous cycle).  Is the birth control a coincidence or did it trigger a cycle?  Who knows...but maybe someone does.

My question to you is this:  I noticed that you even have a scaled down version of this regimen for your grand niece, so is it safe to say that my 7 1/2 week old son would be ok being fed breast milk while my wife is on the regimen?  I realize this may be an odd question but it's one I didn't see an answer to when I searched the forum.  I understand that it's something we'd want to talk to our pediatrician about...but I am interested in what your opinion is on this.  We would assume a PCP or pediatrician would say "no" to this just because they don't know jack about the regimen.

As always, thanks for your help.

Break_the_Cycle,

Thanks for the update and questions.

My daughter is still taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and breast feeding.  Her OB and pediatrician are both very comfortable with this regimen.

The key to keeping them comfortable was a couple lab tests for 25(OH)D.  If your wife is shooting for a 25(OH)D serum concentration between 70 and 80 ng/mL to control her CH, a vitamin D3 dose of 10,000 IU/day should work nicely. 

That said, she needs to keep her OB and pediatrician in the loop on this regimen and with her 25(OH)D lab test results.  Check out the latest updates to this regimen at the following link:

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Vitamin K2 is an important addition for all of us and in particular, mothers who are breast feeding...  See the following link:

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Shoot me a PM if your wife gets any push back on the anti-inflammatory regimen with 10,000 IU/day vitamin D3...

On a related note...  My son in law showed me a video clip of my three and a half month old granddaughter, Fred (Winnifred), on his iPhone.  It was clear to me she was trying to talk...  but then I'm a doting old grandfather...

Regarding the return of your wife's CH after insertion of an IUD...  It's quite possible the relationship is causal and not just a coincidence.  There have been a number of studies that confirmed a measurable immune response is frequently associated with IUDs and that it's this response that's part of mechanism of action of IUDs in preventing pregnancies.

We've already found that an immune response from any source can consume available 25(OH)D leaving too little to prevent CH...

Hope this helps connect the dots.

Take care and please keep us posted.

V/R, Batch

Well done Pete!!!

Hey Eric,

Thanks.  The survey is still running and collecting data for all of us.  There are still quite a few who didn't finish and submit.  In checking, most were episodic so that's understandable.

If there are any CH'ers, who don't recall completing this survey and clicking the submit button, you can still enter your survey and complete same.

CH'ers new to this regimen, who have been on it for at least 30 days, are welcome to take it.

Take care,

V/R, Batch

Long story short....ended up with full blown second cycle on opposite side almost immediately following shortened cycle.  Ended up on Trokendi XR (topomax with a lot less side effects??) which helped immensely.  Appears to have messed up my acidity though, tingling of feet and hands.  Maybe acidity was already messed up and that is why D3 was not helping.  Being the lazy slob that I am, I know Batch knows acidity and figured I would reach out for advice.  Thanks in advance for any input!!  Have been pain free neuro speaking but still on the Trokendi.

Hey Birdman,

Sorry you were having problems with the anti-inflammatory regimen and turned to Trokendi XR for relief...

Did you get the lab test for your 25(OH)D?  If so, what was your serum concentration of this vitamin D3 metabolite?

You're correct, one of the trokendi XR side effects is metabolic acidosis...  Trokendi lowers serum bicarbonate and the enzymes needed to maintain it.  See the following link for details:

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Other than switching to another CH preventative or stopping trokendi and going back on the anti-inflammatory regimen, the best I can offer is for you to discuss a baking soda tonic with your PCP or neurologist as a counter for the metabolic acidosis.

The baking soda tonic (the directions are on the Arm & Hammer baking soda box) is just a temporary solution, so you'll need to try an alkalizing diet to elevate your systemic pH.

Hope this helps...

Take care and please keep us posted.

V/R, Batch

Hey Batch and all,  Hope all is well, me... still pf and counting, thanks to you Batch  [smiley=heart.gif]. I'm in my 14th month with the regimen.
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Well, I've got a few questions for you.

For the last 9mths or so, I've experienced muscle aches.  It started in my left elbow and was quite intense to the point where I was having a hard time picking up anything that required any strength. I blamed it on tennis elbow, but didn't have any reason for it.  Over time the ache has reduced with some care, however now I am and have experiencing muscle aches that stretch along my shoulders up into my neck. I've never known this kind of achyness.  I'm just curious if anyone else has this phantom ache. 

I've been taking:
6000 IU D3
2000mg Fish Oil (360 EPA/240 DHA
300mg Magnesium Bisglycinate (w/60mg taurine)
480mcg K2
Multi Vit that covers the following:
Vit A 2500IU
B6 30mg
B12 100mcg
Calicum 200mg
Zinc 10mg & additional D3 of400IU
and etc (other vits/minerals)

I wish I could insert my graph results, but I don't know how.. lol
My 25(OH)D results in nmol/L are as follows:
Sep/13   86
Oct/13   170
Nov/13   373
Dec/13   155
Jan/14   178
Mar/14   184
Jun/14   182
Sep/14   216
Oct/14   149
Last PTH Sept 2014 = 3.9 pmol/L

Spoke with my GP today, she thinks I'm crazy taking 480 mcgs of K2. She also is not even suggesting anything for the phantom aches. Perhaps I should steer away from the multi vit, take Vit A/zinc & B12 separately.

Please any suggestions are welcome. Other than that... I can't complain! Thanks for all your continued support!

Sue

Hey Sue,

All is well here in the heart of Puget Sound area of Washington state...  A little wet at the moment... but it's 50º F at 6 PM and it looks like at least three days ahead without rain...

Thank you for the detailed feedback and lab history...  It's fascinating how our 25(OH)D serum concentration fluctuates at the same dose of vitmain D3.  I suspect this is the result of our immune system doing its thing to keep us healthy by sucking up 25(OH)D when it needs it to combat the bugs and virus that constantly hit us.

Regarding the muscle aches and cramps... double the magnesium.  Your calcium-magnesium ratio appears to be a little out of balance.  I have this same problem if I don't take enough magnesium.

Calcium is needed during muscle contraction and magnesium during muscle relaxation.  Vitamin D3 at the doses we take consumes magnesium making muscle cramps very common if we're not taking sufficient magnesium.

Regarding the joint pain... I don't have a good answer why this is happening.  I suspect it's due to the higher serum concentrations of calcium, within the normal reference range, as a result of the vitamin D3 doses we're taking...  The extra serum calcium may be accumulating in the joints... but I've no medical proof or evidence.

I've had the same problem with a sharp joint pain in my wrists.  I cut the supplemental calcium for nearly a month and started taking Glucosamine &‎ Chondroitin.  The joint pain went away in less than a week.  Not sure if this will work for you... but it's sure worth a try.

Take care and please keep us posted.

V/R, Batch

I can remember visiting many a chiropractor over the
years, but I still had CH's and empty pockets, maybe
its the vitamins he gave you or you had neck problems
that are known to give headaches that mimic CH's.

Hoppy.

Hey Danallan,

You've got my curiosity up...  What's in your list of supplements and how much is vitamin D3?  I like your analogy too!

Take care and thanks again for the post.

V/R, Batch

Hey Danallan,

Thank you for the response.  I wanted to see what nutrient supplements you were taking to remain CH pain free...  I also don't think you're spamming for Dr. Tent.  Is he a DO/Osteopath?

For starters, a 25(OH)D serum concentration of 103 ng/mL is a little high but not necessarily an indication of vitamin D3 toxicity... or overdose.  A diagnosis of vitamin D3 toxicity requires labs for serum calcium and PTH. 

There are few CH'ers and many more people suffering from Remitting-Recurring Multiple Sclerosis taking enough vitamin D3 to maintain their 25(OH)D serum concentrations as high as 140 ng/mL... living perfectly normal lives with no indications of vitamin D3 toxicity.

The regimen you're taking includes most of the same essential nutrients we take in the anti-inflammatory regimen.  The anti-inflammatory regimen supplements and doses are shown in the table below:

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If you'll look at the supplement fact labels on the back of the bottles you buy from Dr. Tent, I'm confident you'll find the same supplements.

Translating this list of supplements to off-the-shelf nutrients yields the following illustrated by brand in the photo below:

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With the exception of the Super K, I buy all the above supplements at Costco for roughly 35 cents a day...  I buy the Super K over the Internet from Amazon for 20 cents a day including shipping. 

Overall that works out to an annual anti-inflammatory regimen cost of around $200. 

Thanks again for the reply.

Take care,

V/R, Batch

Can someone please list the doses for the fish oil and magnesium?  I'm taking the 10,000 iu of D3, but wasn't sure about the other doses.

1200mg-2400mg Fish Oil /day
400mg-500mg Magnesium /day

Good Luck
Hoppy

Nancy,

Good question... Take two (2) of the Nature's Bounty 5000 IU vitamin D3 liquid gel caps, Two (2) of Nature Made Omega-3 Fish Oil liquid gel caps, one (1) of the Nature Made magnesium liquid gel caps, one (1) of the Mature Multi tablets and one (1) capsule of the Super K with Advanced K2 Complex. 

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Regarding the magnesium...  A few months back, I switched from the 400 mg Nature Made magnesium (oxide) to taking two of the 250 mg Kirkland brand magnesium citrate gel caps (total of 500 mg).  Rationale... more magnesium at a lower cost.  It SWERKIN just fine...

I switched to Kirkland Mature Multi as it has a better formulation of the other vitamin D3 cofactors at a lower cost.

If you can't get to Costco, the following table lists the individual supplements and doses.

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Again if you can't get the Kirkland Mature Multi, try to find a "mature" "senior" or 50+ vitamin & mineral combo like Centrum Silver Plus. With the exception of the magnesium (usually only 60 mg) and vitamin K2, these senior vitamin & mineral capsules contain most of the vitamin D3 cofactors at the right dose...  Read the Supplement Facts label on the back of the bottle to make sure.

Don't forget the vitamin B 50.  It's not shown in the photo above. Take one of these tablets a day for three months...  That should take care of any deficiencies among the seven B vitamins.  After that, there's plenty of the B vitamins in the mature multi to prevent any further deficiencies.

My other rationale for selecting the above brand name supplements is because they all carry the USP logo or wording on the label indicating they've been tested by an independent lab for purity and strength... 

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There are a lot of knock-off/fake supplements coming from China that I wouldn't feed to a dog...  Too many dogs have already died from dog food containing Chinese fake protein...

Take care,

V/R, Batch

I get my Kirkland Mature Multi 400 tablets online from
Biovea.

Hoppy.

Hi all. I'm a newbie, though I've been on the site plenty of times. I'm one of the lucky ones in that I've been an episodic sufferer since 16, but as I've gotten older (I'm 46), the beast shows up less frequently. But when it does, I pay like everybody. And the cycles are worse. I've done Prednisone (what a downer!) and Verapamil mostly when I've been in the cycle. The rest of the year I can go about my business, drinking wine, beer, whatever, as if I never have a problem. But then Jan. rolls around, and I get nervous.

My tell tale sign I'm entering a cycle is the lump in the neck, with nagging pain like I've exercised too hard, and and a general feeling of being "off". Then the shadows creep in. That just began last week, yet I'd managed to go without getting a full blown CH. How, I'm not sure. But I knew it was coming.

So I'd just popped in again, as I wanted to try out the psilocybin method I'd read about. Instead I came upon the D3 info. I've just started the anti-inflammatory treatment yesterday. I have to say, my overall well-being has already improved. The lump in the neck has somewhat receded. My thinking is clearer. I have more energy, and the shadows have seemed to slip back to wherever.

I have to say it's very encouraging. I hope I'm not jinxing anything. Given the episodic nature of these things for me, I had a hunch this would work. I'll report back. Just wanted to add to the positive feedback, though hopefully not prematurely.

Most of all, thx to you all for giving me a place to go and realize I wasn't completely crazy.  :)

Hi and welcome.

Really pleased that you're getting positive results from the D3 so quickly, which is a great sign that it will be effective for you. Several of us have gone multiple years CH pain free using D3, I hope that in time you'll be one of these people too.

Hey AHC,

Welcome to CH.com and the anti-inflammatory regimen.  You've come to the right place and you've already started one of the most effective natural CH preventative regimens going.

A response to this regimen within the first 24 hours is not uncommon.  The following chart illustrates time to respond after starting this regimen for both episodic and chronic CH'ers.

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As you can see, the majority of CH'ers respond in less than 10 days with an average time to respond with a significant reduction in the frequency, severity and duration of CH around 4 to 5 days.

Roughly 5% of the CH'ers who start this regimen experience a brief improvement in CH symptoms followed by a bumpy road with an increase in the frequency of their CH.  Fortunately, most of them experience a cessation of their CH symptoms once they build their serum 25(OH)D concentration into the green zone, 60 to 110 ng/mL. 

83% of CH'ers who have started this regimen experience a favorable response by the time their 25(OH)D has reached 80 ng/mL.

Take care and please keep us posted.

V/R, Batch

Well, it is now officially 2 years since my last CH thanks to this regimen., wow is all I can say.

Ive had blood tests every 6 months or so to keep an eye on my levels which went as high as 346 nmol at one point as Batch will no doubt remember cause I emailed him in a panic. I stopped taking the D3 altogether, for a month then resumed at 5,000iu and have stayed on that since. My last test came back at 163, which is a bit low but no CH as yet (I'm episodic), so am currently taking 7500iu to see where that gets me.

Just in the process of changing my Magnesium supplement to the Doctors Best Chelated one as the Now Foods Caps can make me a bit, shall we say 'loose', and all the research i have done points to the Doctors Best one. Worth considering if Magnesium is giving you 'issues'.

Also, my migraineur 'better half', who is also on the regimen at 5000iu a day (her latest result came back at 190 nmol), hasn't had a migraine since she started the regimen over a year ago, she used to get at least one or two bad ones a month.

So all in all great news. I have to take this opportunity to say a massive thanks to Batch for not only discovering this in the first place but then having the knowledge and determination to do something about it. Imagine if he had been someone who hadn't put two and two together, now where would we be?

Anyway, hope you and Joyce are well my friend and keep up the great work.

Cheers
Rob

Hey Rob,

Thank you for the outstanding update.  I'm happy to hear your significant other has her migraines boxed and is running pain free.  Being able to prevent migraine headaches with this regimen is a real sleeper capability that will eventually catch fire...

Joyce and I are doing just fine.  Joyce started this regimen over 4 years ago and has been migraine free the entire time.  She's got more energy than I've seen in 20 years... and she just kicked the heck out of 77 at Christmas... Go figure.

Thanks again for the wonderful update.

Take care and cheers.

V/R, Batch

G'day Rob,
It's also 2yrs officially for me, since my last cycle, again,
[smiley=dankk2.gif] too Batch.

Cheers  [smiley=beer.gif] Hoppy.

Just a quick update a week in. I've had nothing but PFDs after beginning the regimen. The knot in my knock left after about three days. I'm very optimistic I've found a treatment.

Of course my biggest worry is that I didn't first go through a full blown episode to know that indeed I was entering a cycle, but the symptoms we're all there. So I'm going to assume I was.

I also have my energy levels up and will soon go in for a blood test to check my levels as suggested. Thank you again. What a game changer.

I'm off to play Ina soccer match, which should be a good test as intense workouts proved to be a trigger the last go around.

All the best.

Ok... so did the regimen for the full month as described.  I started in late December because I noticed the shadow pains had returned on a regular basis.  Week one was rough.  Fiery pain through the cluster side of my head was fairly consistent for the first 5 days, then it chilled out a bit the last two days.  Felt similar to being on prednisone.  Week two, I felt like a normal human for the first time in years.  Zero headaches or shadows.  Couldn't believe it.  Week three and four, shadows started to return about every 3 or 4 days, but were weak.  Week five, shadows have returned every other day and are getting stronger.  I have an appointment with my neurologist on Monday 2/2 to show him the treatment and get my 25(OH)D test.

Two things.  One, I think that I may need to be on a higher dose of Vitamin D.  I seemed to feel great when I was loading, but as I came down from the loading schedule, things returned to normal.  Waiting for D-test before increasing to a higher dose.  Two, I noticed that some people were taking two of the 1200 mg fish oils.  I have only been taking one.  Should I be taking two?

Anyone else have a similar experience?

Hey Kurama,

Thanks for the update...  You can take 2, 3, or 4 of the Omega-3 Fish Oil liquid gel capsules a day...  You probably get 2 to 3 times more olive oil in a caesar salad dressing... In short... no biggie taking additional Omega-3 Fish Oil. 

You really can't overdose on Omega-3 Fish Oil capsules...  You'll know long before you've taken to much Omega-3 Fish Oil... You'll get grease stains on your drawers before you run into any real problems... :o

You're spot on about needing a higher dose of vitamin D3...

Increase your maintenance dose of vitamin D3 to 15,000 IU/day.  On top of that add another 150,000 IU loading dose of vitamin D3.  Do this by taking an additional 50,000 IU/day for three days on top of your maintenance dose.

A loading dose of 150,000 IU over three days should elevate your 25(OH)D by an additional 15 ng/mL serum concentration and in the process, keep you CH pain free.

Just be sure to take all the rest of the cofactors.  Magnesium is the most important.  Take 500 to 750 mg/day when taking loading doses of vitamin D3 and don't forget the vitamin K2. 

Taking this much vitamin D3 increases calcium kinetics...  i.e., more calcium moving around your system than normal.  The vitamin K2 helps make sure any extra calcium goes to the bones and not the arteries or soft tissues.

Take care and please keep us posted.

V/R, Batch

Yeah... so I definitely wasn't taking that high of a dose of Magnesium on the first loading schedule :-?

I haven't been taking the K either.  My aunt (an MD-PhD) was concerned about it being a clotting agent and didn't think I would need it at my age (31).  I wasn't really sure what part it played in the whole regimen and I don't know if she was aware of the increase in Calcium that the D3 would cause.  It's a low enough dose that I think I would be safer taking it than not.

So I'm off to get my new viterals, try another loading dose, and up my maintenance dose.  I'll post back here when I get my 25(OH)D test back and I've been on the increased regimen for a bit.  Fingers crossed! 8-)

Kurama,

Your aunt's concerns over vitamin K are not uncommon...  Too many physicians are a little behind the times and not up to speed when it comes to taking vitamin K...  It comes in two basic forms...  Vitamin K1 a phylloquinone that comes from plants, (the Klotting vitamin) and Vitamin K2, a combination complex of two menaquinones, MK-4 and MK-7.

Not much was known about the function of vitamin K2 until recently (last 7 years).  What researchers, nutritionists and some practicing physicians have found is vitamin K2 actually functions like a catalyst in building bone mineral density.  Vitamin K2 also helps prevent a buildup of calcium in soft tissues and arteries so promotes vascular health.

The LEF Super K with advanced K2 complex that I suggest is formulated with both vitamin K1 and the K2 complex of MK-4 and MK-7. 

LEF has an excellent article on how this formulation improves the bodies clotting mechanism and at the same time helps build bone mineral density and arterial health while preventing calcium buildup in soft tissues and arteries...

Send your aunt the following link so she's singing from the same sheet of music...

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Take care and please keep us posted.

V/R, Batch

Hi Batch,
Just wanted to let you know how thankful I am to have found your posts on the vitamin D therapy! I have been an episodic CH sufferer for the past 29 years and 3 years ago turned into a chronic CH sufferer. In July of 2015, I was at my wits end, when I stumbled upon your D therapy. After 3 months of following the basic regimen without any relief, I was ready to give up and try "magic mushrooms" when I happened to find your updated anti- inflammatory regimen. Within 3 weeks of starting the new regimen, my cluster headaches were gone! Thank you!!!!
My only concern is that that the regimen was not easier to find. I hate the thought of anyone having to endure the agony of cluster headaches when they maybe able to stop the pain with your amazing therapy. Is there any possibility of adding your regimen to the menu at the left of web page?
Thanks Again,
Al

That's a great idea.
Peter.

Al,

Thanks for the wonderful feedback.  I'm always happy to hear another CH'er has sent the beast running.

You and Peter have a good point.  I'll work up a draft with the latest "How To" info on starting the anti-inflammatory regimen and send it to DJ.  It will be his call to include it in the tabs at the left.

Take care,

V/R, Batch

Hi Batch,
My best friend who is a CH'er (and that you've drunk beer with on your last trip here in Las Vegas) is not responding to this vitamin regimen.

His cycle began about July and ended in November, then gave him a PF break of a month and then started up on the other side of his head until currently in cycle still.

He has over 30 years experience as a episodic CH'er and occasionally does switch sides. So this cycle is kinda "normal" for him.

As for the D3 regimen, he has been on it since July. He takes loading doses weekly in addition to dinnertime/biggest and most fat soluble meal of his day.

Verapamil is at 480mg and doesn't want to go higher, as his attacks are "manageable" despite getting hit 1 or 2x/daily, and recently 3 to 4x/daily.

No specific triggers to mention. Of course not drinking at all.  Generally eats a very healthy diet and exercises daily with weights and cardio.


His results for the 25 OHD test came back today at 157. He is taking all co-factors as recommended. As mentioned above, he is still hit at least 3x/day, everyday.  this is what I consider bad news, as he should be PF with a 157 test result, right?

More bad news for him today from the doctors office is that he was diagnosed with Rheumatoid Arthritis of his hands, wrists, hips. He has been prescribed Methotrexate 1x/week and Folic Acid the other 6x/week.  Not sure what is going on in terms of him not responding to the regimen, especially considering his D levels are VERY HIGH as compared to others who are favorably responding.  So thought I would post here for an inquiry/hypothesis. Not sure of Methotrex--- is spelled right, but you can figure it out i'm sure.

Also would be interested to know if the two medicines mentioned above for his arthritis are going to somehow interact favorably or not to the current vitamin regimen.

Suggestions?  Thoughts?

-Gregg in Las Vegas

Hey Gregg,

I do remember Rick and the three of us having lunch at the sports bar in North Las Vegas.  I've still got a photo the barkeep took of the three of us... I'm sorry to hear he's having such a rough time.

There are no easy answers in Rick's case.  Cluster Headache (CH), Rheumatoid Arthritis (RA) and Methotrexate (MTX) represent a mean triple threat.  On top of that, the use of MTX indicates Rick may be battling a rheumatology mind set involving the latest standards of care treatments for RA.  That's neither good or bad... just an observation...

If I'm correct in this assumption, the next treatment he'll be prescribed will be one of the MABs (monoclonal antibodies).  MABs are classified as biologics.  Like prednisone, they cut both ways.  While they won't cure RA, they can lessen the symptoms and in some cases, halt the progress. 

Unfortunately, all biologics/MABs carry a long list of side effects that range in order from nasty to down-right onerous including: compromised immune system, life threatening infections like tuberculosis and pneumonia, fungal infections and a growing list of cancers.  Watch the TV ads for Humira (Adalimumab) and you'll get an even longer list of side effects.

I can give you first hand testimony to MAB side effects...  I was a participant in a study at NIH where I was given one of the MABs, daclizumab, typically given to organ transplant patients to prevent organ rejection, to treat an autoimmune eye condition...  basically to prevent my retina from rejecting me...

Over the course of the treatment with daclizumab, it knocked my immune system to parade rest, I developed squamous carcinoma and finally eosinophilic meningitis.  These were known and listed side effects of daclizumab, but they were the lesser of the evils compared to going blind.

According to Consumer Reports, "There are nine different biologics available to treat the symptoms of rheumatoid arthritis, but they are not a cure. All are very expensive, with some costing more than $5,000 per week..."

As RA is thought by many experts, to be an autoimmune and clearly an inflammatory disorder, the best advice I can give at this point is for Rick to see a good endocrinologist, tell him about all his medical problems, and to ask for a full battery of endocrine tests including tests for all the inflammatory markers. 

Of course he'll also need labs for serum 25(OH)D, thyroid, parathyroid, and calcium as well as a urine test for calcium/creatinine ratio.

My second suggestion may sound off the wall... However, having his CH under control with the anti-inflammatory regimen and then have it flare up and continue unabated with a 25(OH)D serum concentration well over 100 ng/mL indicates there's likely something else going on, over and above his RA.

It could be as simple as another infection that has what's left of Rick's immune system in a tailspin.  Accordingly, starting from the top, a visit to his dentist for an exam may be prudent.  A periodontal disease, could easily be the culprit.

This might not be as off the wall as it appears...  It turns out there are many recent studies linking RA and Gum Disease (GD).  There's a bit of chicken and egg thing as to causality.  However, researchers are in lock-step agreement that RA and GD are clearly linked and that they feed on each other making both conditions worse.  When you throw in CH, you've got a trifecta.

Bottom line... Rick needs some sound medical advice from a physician familiar with autoimmune disorders. 

In the mean time Rick needs to drop his vitamin D3 intake to a maintenance dose of 10,000 IU/day and continue taking all the vitamin D3 cofactors including the 3-month course of vitamin B 50.  I checked and there are no interactions listed between vitamin D3 and MTX.  Folic Acid is one of the components formulated in vitamin B 50.

Hope this helps.

Take care and please keep us updated.

V/R, Batch

Thanks Pete! We thought he developed this RA from a lifetime of construction work.  But after reading your thoughtful and informative reply, we now understand there's more to it than hard labor.

I passed along your kind reply, as he does not visit CH.com but every couple years.

Please clarify the B50 part of the regimen.

Thanks again  ;)

-Gregg in Las Vegas

Hi Gregg,
Over the years I've had problems with my knee, and my
shoulder, Made an appointment with my GP to talk with
him about the crippling pain in one of my knees, he
suggested I try taking triple strength joint care.
Glucosamine 1500mg.
Chondroitin 1200mg.
MSM 250mg.
I started 2/day tablets that contain all of these with food,
and within a few weeks my knee and shoulder were back
to normal function. I still take these daily, and never had
any joint pain since.

[smiley=happy.gif] Hoppy.

Gregg,

Good question...   I'll also second Hoppy's suggestion that Rick take Glucosamine, Chondroitin and MSM...  This combo helps build cartilage and the slippery stuff between bones. It worked great for me.  There are several brands at Costco...

Regarding the Vitamin B 50...  It's a formulation of all seven B vitamins each at 50 mg. There's also 400 mg of Folic acid in the mix.

The rational for taking the B 50 is interesting.  It came from Dr. Stasha Gominak, MD, a neurologist in Tyler, TX who treats her patients with sleep, chronic pain and headache disorders with a vitamin D3 regimen very similar to the anti-inflammatory regimen except she adds a 3-month course of vitamin B 50.

She and her patients were very satisfied with her regimen.  However roughly two years after starting this regimen and enjoying pain free life, some of her patients started complaining the regimen wasn't working and the pains or sleep disorders returned.

She did all the standard tests and couldn't find any reason why her regimen had stopped working.  Then one of her non-responding patients took one of the B vitamins, and like magic, the regimen started working again.

When this got back to Dr. Gominak, she started testing for vitamin B12 as a marker for the 7 B vitamins, and found it deficient in nearly all of her non-responding patients.  She took the shotgun approach and prescribed the vitamin B 50 to her non-responders and most of them responded favorably.

She explained the reason for vitamin B 50's success, was that this formulation was actually a loading dose that took care of any deficiencies among the 7 B vitamins and in the process, helped build friendly colonies of bacteria in the GI tracts of her patients.

There's more than ample medical evidence to support the fact that most of our immune systems resides in the GI tract, from the mouth to tail pipe, and in the lungs.  Researchers say that in healthy people, these areas are loaded with friendly bacterial colonies... i.e., the little engines that help with digestion and also make our immune system and other body functions work properly. 

When they've been attacked or destroyed by taking a potent broad spectrum antibiotic we tend to feel out of sorts and weak.

There are actual animal analogs when it comes to building a healthy microbiome.  I watched a special on the Koala Bear.  They had a closeup sequence of a baby koala bear instinctively eating its mother's feces.  The narrator commented that this was part of nature's way of building the young koala bear's immune system by taking a starter dose from its mother.

They aggregate term for all these colonies of friendly bacteria is the microbiome.  Most of the really exciting work in this area has been in the last 5 years.  See the following links for more details:

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The GOMBS diet that I suggest to CH'ers slow to respond to the anti-inflammatory regimen helps feed the microbiome what it needs. I've also found that a mixture of fresh pineapple, blueberry or blackberry, avocado, spinach and kale thinned with a little coconut water or cranberry juice and buzzed up in my blender makes a great smoothie to start the day... and feed my microbiome at the same time.  It's loaded with natural nutrients and antioxidants.

I hate to admit it, but I watch the NutriBullet infomercials to see if they have any new recipes...  Their existing recipes at the following link actually taste quite good.

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Hope this helps and please give Rick my best wishes.

V/R, Batch

Hey Batch,
I have not been following the Anti-inflammatory regimen front very actively but now that some people have been asking about the role of Calcitriol in regimen and cluster headaches I decided to come right to the Guru and ask you.
For myself, sleep is the foundation in my CH treatment and the brick wall built on that foundation is Anti-inflammatory regimen.
So very shortly, is the best marker to follow serum concentration of 25(OH)D when we are treating CH? Would the amount of Calcitriol be significant, is it possible to measure it? START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Sorry if this has been well covered somewhere in here.
Thank you for your lifesaving work !

Tony,

Thanks for the post... Good questions too.  One of the short answers is 25(OH)D is the best measure of vitamin D3 status. 1,25(OH)2)3, a.k.a. calcitriol can be measured... but it is not a reliable biomarker.  The other is 60 to 80 ng/mL is the optimum range for the 25(OH)D serum concentration for sleep according to Dr. Stasha Gominak, MD. 

She's a neurologist in Tyler, TX who suggests a vitamin D3 regimen very similar to the anti-inflammatory regimen for her patients suffering from sleep, chronic pain and headache disorders. 

The only real difference is she also suggests a 3-month course of vitamin B 50.  Taking vitamin B 50 for more than 3 months starts cutting into the good sleep benefits.  She has some excellent videos on her regimen at the following link:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Understanding a little about vitamin D3 pharmacokinetics, what the body does to vitamin D3, might help in understanding the above answers.

No matter how we get vitamin D3, from the UV-B in sunlight generating vitamin D3 in the skin or from supplemental intake, the first thing that happens is vitamin D3 is metabolized by the liver into 25-Hydroxyvitamin D3.  This is an unregulated process that continues until the liver has metabolized the available vitamin D3 to 25-Hydroxyvitamin D3. 

Chemically what happens here is an enzyme in the liver adds a hydroxyl radical, [OH], to the 25th carbon position on the vitamin D3 molecule, hence the name 25-Hydroxyvitamin D3 or 25(OH)D, also called calcidiol.

This is a stable metabolite of vitamin D3 with a half-life of 2 to 3 weeks depending on the serum concentration.  Roughly 20% of the serum 25(OH)D is further metabolized in the kidneys by another enzyme, 1α-hydroxylase that adds a second hydroxyl radical to the 1st carbon position on the vitamin D3 molecule, hence the chemical name 1,25(OH)2D3. 

1,25(OH)2D3 is the active hormonal form of vitamin D3 also called calcitriol.  The normal serum concentration of calcitriol is one thousand times less than the serum concentration of calcidiol, a.k.a., 25(OH)D. It has a serum concentration half-life of roughly 7 hours...

This path of vitamin D3 metabolism helps maintain serum calcium concentrations, through one of the body's control mechanisms called calcium homeostasis.  Calcium homeostasis is controlled by the parathyroid glands that secrete parathyroid hormone (PTH). 

When the serum calcium concentration is near the low end of its normal reference range, the parathyroids sense this condition and release more PTH.  This signals the kidneys to produce more 1,25(OH)2D3 that pulls dietary and supplemental calcium from the gut to keep serum calcium in an optimum concentration.  This process also helps build bone mineral density... i.e., strong bones.  When the serum calcium concentration is near the upper end of its normal reference range, the parathyroids sense this condition an slow the production of PTH.

The other 80% of the serum 25(OH)D produced by the liver gets hydroxylated to 1,25(OH)2D3, extrarenal, (outside the kidneys) in cells throughout the body by the same 1α-hydroxylase enzyme.  These molecules of vitamin D3 link up with a molecule of vitamin A (retinol) and physically attache to genes as specific sites called vitamin D receptors, (VDR). 

It's this path of vitamin D3 metabolism that's responsible for what is called genetic expression, a process that basically enables the cells to unlock their genetic libraries of instructions to do a number of things, like multiply, differentiate, control the production of special products, or die.

I realize at this point, some of you are convinced I've had a senior moment, gone off the deep end or lost the bubble completely.  Stick with me a bit longer and you'll see where I'm going with all this...

It turns out that nerve cells in the human brain produce the 1α-hydroxylase enzyme and that VDR have been found in nerve cells throughout the brain.  What is particularly curious about all this is...  the highest concentrations of VDR and the 1α-hydroxylase enzyme in the brain are found in the hypothalimus and trigeminal ganglia nerve cells.

For CH'ers new to this disorder, the big dog neurologists and experts on cluster headache all opine the hypothalamus is the head waters for the pathogenesis of cluster headache.  In other words, they think the hypothalamus manages the processes that control cluster headache.  They'll also tell you the trigeminal ganglia are where all the cluster headache pain we suffer originates...

If you've studied human physiology and anatomy, you're also likely familiar with the fact that the hypothalamus is part of the autonomic nervous system that controls sleep and the body's other circadian rhythms.

If you're like a lot of us, at this point you've just connected the dots and experienced an "Ah Ha..." moment of insight... 

Sleep and cluster headache are controlled by the hypothalamus...

The hypothalamus and trigeminal ganglia are loaded with vitamin D3 receptors and the enzyme needed to convert vitamin D3 to it's active hormonal form.

And... vitamin D3 helps control the genetic expression of these nerve cells enabling them to do what they're supposed to do... like help us sleep better and not have headaches...

Now for the conclusion of this little tale...  In order to make a really good soup, you need the right ingredients in the right proportions... 

Magnesium, zinc and boron are needed because they support nearly all the body's enzymatic processes.  Magnesium is also part of the vitamin D binding protein that transports vitamin D3 and its metabolites through the blood stream.  Molecular biologists and genetics experts have found a "zinc finger" in each VDR that helps attract and attach vitamin D3 to a gene.

Omega-3 fatty acids act as potent anti-inflammatory agents and vitamin K2 helps direct the flow of serum calcium away from soft tissues and arteries towards building bone mineral density.

So here are the soup ingredients... a.k.a., the anti-inflammatory regimen supplements...

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Hope this helps...

Take care,

V/R, Batch

Hey Everyone!

I just wanted to let you know that I finally got the results of my 25(OH)D test back from Feb 2 and I was at 74 ng/mL.  I have had 0 clusters since late January (the one I did have was laughable - literally, I laughed about how not-painful it was) and the trigeminal pains I constantly have outside of the cluster cycles has been substantially reduced.  The higher my 25(OH)D level goes, the less headaches I have in general.  It took about 60 days, but this is the best I have felt in years!  And, yes, Batch, I filled out the survey.  :) 

I don't feel that it is 100% controlled, yet, but the 90% that is controlled is a big change for the better.  And this is coming from someone who couldn't find any therapy (other than the defunct Ergomar) that genuinely worked.  I'm going to continue to work with my neurologist and see if I can get to 100% through little tweaks to the therapy.  I honestly think that I just need a higher concentration than the typical 60 - 80 ng/mL, as evidenced by my needing 15,000 IU for daily maintenance.

I also wanted to note that my step-dad suffers from migraines (multiple migraines per week), so I told him about this therapy and convinced him to try it.  I asked him last night how it was going and when he had his last migraine.  His face lit up and he proclaimed "I haven't had a migraine in 3 weeks!"  He started the therapy 3 weeks ago.  He even said he had recently dealt with a highly stressful event, which normally would have triggered a migraine, and was delighted to discover that he was able to deal with the situation and a migraine didn't start.  This is a huge deal for someone that has suffered from migraines weekly for about 40 years.  So it would seem that it does have a similar response in migraineurs.

I will post back if anything changes, but for now, all seems to be going well!

Great news Kurama for both you and your dad.

Batch has previously posted about D3 helping people with migraines and this is just another indication that it works for more than just CH.

Hey Kurama,

Thanks for the wonderful update.  A 25(OH)D serum concentration at 74 ng/mL is still a little low... but obviously doing a good job preventing most of your CH...  Try a couple 50,000 IU vitamin D3 loading doses to see if they'll take you completely pain free with no klingons...

I'm also very happy to hear your step-dad has his migraine headaches under control since starting the anti-inflammatory regimen.

There are a lot of different varieties of migraine headaches...  That said, migraineurs typically respond to the anti-inflammatory regimen with a higher success rate than do CH'ers.

My wife was a chronic migraineur for over 20 years with 3 to 5 day long attacks hitting monthly like clockwork...  She hasn't had a migraine since she started this regimen in December of 2010.

Take care and please keep us posted.

V/R, Batch

I have been using all through the wintertime 10,000IU Vitamin D + 100mcg K2 + magnesium + Omega 3 daily with largest meal of the day. Got the results of my blood test today and it was 473 nmol/l so that's gone beyond toxicity. It's hard to get a blood test here (Finland) so I got this done on private sector and I'm glad I did.

And thanks for the excellent answer on my previous post !

Tony,

473 is high alright. My last test I was at 163 and hope not to exceed 200 when I'm tested in the next couple of weeks.

I am wondering if you have experienced any symptoms or side effects?

Best wishes,

Peter.

Yes, I was very, very sick. Still am.

I had to make a real effort when started the regimen to even reach 200nmol/l. Then I was able to stay at that. But had not had my bloodwork done since I started to take K2 so I think it was the K2 that (pretty fast) got my levels through the roof.

Hi all. Greetings from Turkey!!

First of all I'd like to thank those who contributed to this site. It's been one and only source of information throughout my CH journey.

I've been an episodic sufferer since I was 25 years old (36 now). Although its now less frequent (down to once a year) the beast is still a beast!!
My heart really really goes to those who suffer from this more frequently.
My yearly cycle began 2 weeks ago .Roughly a week passed by with flu like symptoms/shadows. Than I got hit 2 nights in a row. Both nights I was able to get relief with OTC medicine.Next day I knew the worst (peak) was coming.I went to the pharmacy to get Imıgran Subject (Imitrex) which by the way cost 19 dollars here in Turkey (w/o insurance). They are really ripping people off in US :(
I also popped in hera again and I came upon the D3 info.
I've been taking 10,000 IU of D3 for 4 days now. I have to say, my overall well-being  definitely improved but most importantly while I was expecting more intensive attacks  I had NOTHING for 4 days .Slept thourgh the nights. I've never had a break like this during my cycles.
I have to say it's very very encouraging.
I will keep you posted.

Thank you BAtch :)

Tony,

I'm sorry I missed your earlier post or I would have jumped on it asap with a reply.

A 25(OH)D serum concentration of 473 nmol/l is high, but not necessarily toxic.   That said, I would stop taking the vitamin D3 for at least two weeks and get tested again for 25(OH)D.  You should be shooting for 200 nmol/L as your target 25(OH)D serum concentration.

The lowest threshold for vitamin D3 toxicity is likely closer to 500 nmol/L, (200 ng/mL) but there are some vitamin D3 experts who opine the real serum concentration associated with vitamin D3 toxicity is closer to 750 nmol/L (300 ng/mL).

It would be unethical to conduct a study to determine the serum concentration of 25(OH)D where 50% of people would experience vitamin D3 toxicity as indicated by a serum calcium concentration greater than the normal reference range... 

Instead, the people who try to determine these critical levels rely on clinical data obtained from a few obvious cases of vitamin D overdose. Then they use an abundant level of caution and cut that figure in half to build in a "safety margin" to develop the lower threshold for vitamin D3 toxicity.

I'm not a doctor, but if you've been taking 10,000 IU/day vitamin D3 all along and your 25(OH)D and your 25(OH)D is 473 nmol/l, you may have another problem.

The first thing to do is check the label on your bottle of vitamin D3 to make sure of its strength.  Is this the same brand and strength of vitamin D3 you've been taking all along?  Have you taken any cod liver oil?

See your PCP asap for lab tests of your serum concentrations of total calcium and Parathyroid Hormone (PTH).  You may have a condition called hyperparathyroidism.  This condition occurs when one or more of your four parathyroid glands start pumping out more PTH than normal.

Another prudent lab test to ask for is the Ca/Cr (Calcium/Creatinine) ratio...

As a side note... I don't think the vitamin K2 had any affect on your 25(OH)D serum concentration...  If anything the vitamin K2 complex should help keep 25(OH)D serum concentrations from getting too high.

Take care and please keep us posted.

V/R, Batch

Hey Baris,

Welcome to CH.com and to the anti-inflammatory regimen. 

Quite a few CH'ers respond to the anti-inflammatory regimen experiencing a cessation of their CH like you within a day or two after starting it.

It almost sounds too simple...  After years of trying different CH preventatives and different combinations of CH preventatives with only marginal relief, when a day or two taking 10,000 IU of vitamin D3 and the cofactors results in a pain free response, is a very pleasant surprise.

Stick with this regimen year round... In addition, make sure to take at least 400 mg/day magnesium.  Double that dose to 800 mg/day magnesium if you need to start a vitamin D3 loading schedule.

See your PCP after a month or so for the 25(OH)D lab test...  You should be shooting for the 25(OH)D serum concentration of 200 nmol/L, (80 ng/mL) in order to stay pain free and have a sufficient 25(OH)D reserves to handle any infections, allergies, trauma or surgery and still remain pain free.

Take care and please keep us posted.  It's always a good to hear from CH'ers all over the world taking this regimen.  It's even better when they've responded like you...

V/R, Batch

Thank you so much for another excellent reply Batch. I would never have figured out another potential condition, neither would have my doctor (they are basically saying never to use Vitamin D again).

Yes, I have been using the same product all this time. It's Healthy Origins Vitamin D (5,000IU) and I have been taking 2 of these daily.

Had to Google what cod liver oil is but no, have not been taking that, have been taking only that 1 Omega-3 tablet (DHA+EPA 250mg).

I too had thought 10,000IU/day as safe and would not have even thought that to be a problem, when I went to doctor I had the 25(OH)D measured just because it had been some time since it was last measured.

I have stopped taking Vitamin D ever since I got results and will have new 25(OH)D measurement as soon as possible. And all the other tests you mentioned. I hope my doctor is familiar with these or can get a hold of someone who is.

Thank you very much. Will keep you posted.

Update:
Tomorrow will mark the beginning of week eight.
And today is six days in a row PF and no sign of any shadows - a new record for this cycle.
I'm cautiously optimistic...since I've done two sets of five days PF followed by four days of morning hits. We will wait and see...and hope for the best.
Gary

Gary,

Wooo Hooo!  'Luv to hear feedback reports like this...  Keep'em coming...

Take care,

V/R, Batch

Good morning Everyone!
Well, it's now been 10 days since my last hit and I've continued to remain hit free!
I'm going to go out on a limb here and declare (with 98% certainty) that this cycle is over.
All in all, as I've said in previous posts, this was the most manageable cycle I've ever had and I'm pretty sure I can attribute that to the D3 regimen (since it was the only thing I did that was different from other cycles).

When I did get hits they mostly stayed in the kip 5-7 range (not the usual 8-9) and they were easily aborted using O2. I resorted to Imitrex only four times (as opposed to dozens during previous cycles). A good number of hits went away on their own within 10-15 minutes (which has never happened before).

I was hoping that the D3 was going to shorten the cycle or abort it completely but not so. It lasted seven weeks; still, I'll take it.

I did experience some bizarre and unexpected additional symptoms which I can't explain and have never experienced before (nor seen described on the message board), but those are gone as well, so I don't feel the need, as of right now, to see my PCP and rack up huge bills for innumerable tests. (I'll post those for perusal when I've got more time)

Thanks to everyone for all your encouragement and help during this. I'll keep in touch and continue to post hoping to help others with my input.
Gary

Gary,

Great news. I'm doing pretty good myself and have had the best couple of months in about 2 years.

Took a break to Rome (there now) and no hits on the plane (a first) and barely a shadow either.

I intend to make the D3 Regimen a part of my daily routine, permanently, as I was chronic for so long. You should do the same whether in cycle or not.

Happy days.....Thanks and God bless you Batch.

Peter.

I got a blood test taken yesterday and now the figure was 350 nmol/l. I have not been taking vitamin D for 12 days and since the starting figure was 473 nmol/l it looks like my 25(OH)D is coming down around 10 units per day.

I try to attach the other tests taken to see if I have hyperparathyroidism. To me they look ok.

I have not talked with my PCP yet to figure out what would be the next step. I've had immediate activity increase on my CH though, during this time I have been off Vit D.

---

Hey Tony,

A 25(OH)D of 475 nmol/L, (189.2 ng/mL) was clearly too high...  That said, the 25(OH)D half-life is roughly 15 days.

350 nmol/L, (140 ng/mL) isn't necessarily high if it keeps you pain free.  How is the head? 

I need to keep my 25(OH)D between 120 and 145 ng/mL in order to stay PF this time of year with all the pollen...  My serum calcium and PTH are normal...

Your serum calcium is fine and this indicates there's no vitamin D3 intoxication.

You may be one of the few who has a liver that's very efficient in converting (hydroxylating) vitamin D3 into 25(OH)D.  What was your dose of vitamin D3 and duration at that dose prior the first lab test?

Given your serum calcium is normal, I suspect your PTH will be normal as well...  i.e., no hyperparathyroidism...

Take care and please keep us posted.

V/R, Batch

I double-checked with the hospital when I noticed the ">" sign so for some reason they can't get the accurate measurement, my result just means my 25(OH)D is higher than 350 nmol/l that's why it is marked ">350". It would be good to know the actual level so one could do some counting at what pace the 25(OH)D is coming down.

Now it is 19th day without my vitamins and I have had increase in both frequency (of shadows/attacks) and severity. My CH has not had the strength it has now since I started Vitamin D so that makes me a bit worried. I have been strictly forbidden to use Vitamin D until my levels are "safe".

But since it looks like there's no intoxication I may have some room to maneuver over here. It will just get troublesome if I do something against doctor's orders.

If "liver that's very efficient in converting (hydroxylating) vitamin D3 into 25(OH)D" would mean that my liver would be in better-than-usual shape that would be very hard to imagine. Lot of alcohol use in my youth plus directly after that continuos truckloads of pills for almost 2 decades for my CH.

I started current Vit D run on fall last year (around september) at first 5,000IU daily then during wintertime 10,000IU daily. I have never exceeded the 10,000IU not even once.

Should I still ask this "PTH" to be taken if it's not that first value in my table (FP-PTHInt)? In finnish it's name is "FP-Parathormoni" and I'm pretty sure in english it's Parathyroid hormone.

Thank you again Batch.  :)

Tony,

Although I can understand why some physicians suffer fibrillation and explosive anal leakage when they see a lab test for 25(OH)D come back above the normal reference range, and in your case >350 nmol/L (>140 ng/mL), I'm not at all uncomfortable if my 25(OH)D serum concentration gets that high.

The 25(OH)D half-life is around two (2) weeks so your present serum concentration after 19 days without supplemental vitamin D3 is likely < 170 nmol/L, well within the normal reference range (75 to 250 nmol/L).  This is likely why you've experienced an up-tic in the frequency of your CH...

There's a classic study titled A Phase I/II Safety Trial of High Dose Oral Vitamin D3 with Calcium Supplementation in Patients with Multiple Sclerosis, in which patients took escalating doses of vitamin D3 from 4000 IU/day up to 40,000 IU/day for six weeks at each dose.  This elevated their 25(OH)D up over 400 nmol/L, but there were no problems noted... 

Calcium serum concentrations remained within the normal reference range and PTH, as expected was low.  They even did calcium/creatinine ratio tests and they were still normal.  The following six slides from that study tell the whole story...

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Obviously, study participants were tested at scheduled intervals throughout the year long study.

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As you can see from the study conclusions... High doses of vitamin D3 for weeks at a time were not a problem.  Moreover, there was a marked improvement in RRMS parameters.

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As a related side note, I've been taking an average of 50,000 IU/day in order to stay pain free due to a raging allergic reaction to Alder tree pollen for the last two weeks.  I've also had to take benedryl three times a day to stop the histamine flood caused by the allergic reaction.

I averaged 40,000 IU/day vitamin D3 for over a month last year in March due to the pollen storm and my 25(OH)D was 145 ng/mL, (362 nmol/L). My calcium stayed within it's normal reference range and PTH was low.

Ultimately, it's your call to restart this regimen and halt your CH... or sit back and endure some heavy sledding...  Show your PCP these slides and ask for lab tests of your serum 25(OH)D  total calcium serum concentration and PTH every month to six weeks if you decide to restart the anti-inflammatory regimen. 

Bottom line... as long as your total serum calcium remains within its normal reference range and PTH stays low... No Worries...

Take care and please keep us posted.

V/R, Batch

Hi,  I had an interesting happening today
I went into see my local doctor who is up to date with the regime, she was on holiday, so I got another one. I wanted another updated script for verapamil, i'm taking a s/r 180mg tablet daily, quite low for what i'm reading.
So I asked for my d3 to be tested and my calcium levels, she also wanted me to get both kidney and liver tests as well, So will be interesting to get results.
Ive been on 10,000 d3 for nearly 2 years, I did go from 194 nmol to 234noml from one test to the next 4 months later. My last test was in December, 240 nmol, so it will be interesting to see what's happened this time.
The interesting part of it all, was she read my notes and asked me all the questions about the d3 regime, then said that she suffers from migraines and has been taking liquid d3 for a while now, and her d3 levels are 15 nmol !  she said my levels wont increase but her migraines are hitting her less while taking oral d3. I gave her the website details for her info, and mentioned about the need to take magnesium etc, and even gave her a contact where she can purchase 10,000 iu capsules of d3 here in Australia. She was very very interested, she commented about the fact I shouldn't be taking calcium while on those doses, and I said the multi has about 200mg of calcium in it, I think she has ordered the liver and kidney test along with what I wanted for her own interest in regards to her migraine issue.  She also commented that the government here who subsidise the d3 test, has had a big clamp down and advised all doctors that no more tests should be done unless patients are required to be on excessive doses of d3. All the test results come back with any thing over 125 nmol showing in the red as to much !
I believe she wants to get me fully tested, liver, kidney, d3 and calcium to gain info for her own issues, she said she cant function as a doctor on imigran as it makes her drowsy, but the liquid d3 she's been swallowing has made an improvement,  very interesting appointment.
My other issue with the magnesium and starting a probiotic, worked for a week, then back to the old issue !!!!
I intend on carrying on with the probiotic's and diet changes as batch suggested, but these round of full blood works should show up anything un-toward, in regards to the  levels we take and probably convert the doctor to regime, as she is a sufferer !!!!!
I'll put up my results for those that are interested when I get them in 3-4 days or so....

regards
colin

Just got my test results back, 47ng/ml = 117.5nmol/L
I'm taking 5000iu vitamin D3/day, plus the other
cofactors, excluding Calcium, and only 266mg of
Magnesium Citrate /day

Hoppy.

There was 13 days completely without any vitamins in between my measurements, so it was 473 nmol/l > 13 days without vitamins > next test showed over 350 nmol/l.

I was in the phone again today with my nurse who talks with PCP (that's how system works here). PCP did not have an opinion why 25(OH)D could get so high with so "little" Vitamin D, she referred me to ask from "wherever I got the advice to use Vitamin D" (what I am doing now). She also said not to use Vitamin D in the future because it is "problematic" in my case. For me, that's not an option. I try to get a new PCP, the one that would take a look at everything offered here. I would also like to know if there is an underlying personal reason why I got up there.

That being said, I have not been at doctor's since 2010 when I detoxed from all CH medications, cancelled surgeries to avoid death. I reached 100% PF state from most severe chronic CH there is. I was not allowed to do that either. So self treatment is a big part of my CH it's just a fact that I need to cooperate at some level to get my blood levels tested; which has not been easy, even these two times.

I aim to have next blood test on April 7th and not use any vitamins until then. It's just a battle here to get that blood test taken. CH is tolerable and with my history I can take just about anything for a week.

What an excellent reply and post once again Batch. I have not received something like this in my lifetime. Feeling blessed. Thank you.

Colin, Hoppy, Tony,

Great posts!  It's clinical data like this that helps us better understand the anti-inflammatory regimen and the role of its supplements.  It's also this type of information that will help us develop rules of thumb to improve the efficacy of this regimen by tailoring the dosing to meet individual needs.

Colin, it's always exciting to hear of yet another physician taking a proactive role in this regimen taking good notes and ordering followup labs. 

As a side note, there's more than ample evidence that physicians and in particular, headache specialists, who also suffer from headaches like migraine, are far more understanding of what we go through so ensure ready access, effective treatments, and followup.

Regarding experiments in fluid dymamics during the daily constitutional, you might want to try Elemental Chelated Magnesium, Magnesium Glycinate, or Magnesium Malate.  They tend to be more expensive... but a few cents a day may be worth it.

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Vitamin D Wiki has an excellent coverage on magnesium supplements at the following link:

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Take care and thanks again for the lab data.

V/R, Batch