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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 55145 times)
Batch
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Anti-Inflammatory Vitamin D3 Regimen and Survey
Dec 16th, 2011 at 9:40am
 
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-c5ce9710
22f6"

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 youíre 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 Ī 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 Ī 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 ďfirst passĒ 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 thatís 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
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« Last Edit: Jul 15th, 2017 at 9:08am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3637
Auckland, New Zealand
Gender: male
Re: Anti-Inflammatory Regimen Survey
Reply #1 - Dec 17th, 2011 at 3:52pm
 
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.
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Batch
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Control The Beast With
O2 & D3 You Must


Posts: 3467
Bremerton, WA
Gender: male
Re: Anti-Inflammatory Regimen Survey
Reply #2 - Dec 19th, 2011 at 10:50am
 
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
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Re: Anti-Inflammatory Regimen Survey
Reply #3 - Dec 19th, 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  Wink
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« Last Edit: Dec 19th, 2011 at 2:06pm by LasVegas »  

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Re: Anti-Inflammatory Regimen Survey
Reply #4 - Dec 19th, 2011 at 2:12pm
 
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.
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Re: Anti-Inflammatory Regimen Survey
Reply #5 - Dec 19th, 2011 at 3:01pm
 
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
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Re: Anti-Inflammatory Regimen Survey
Reply #6 - Dec 24th, 2011 at 9:14am
 
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.
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Re: Anti-Inflammatory Regimen Survey
Reply #7 - Dec 24th, 2011 at 10:14am
 
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 Smiley
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Re: Anti-Inflammatory Regimen Survey
Reply #8 - Dec 24th, 2011 at 1:04pm
 
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
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« Last Edit: Nov 22nd, 2012 at 12:19am by Batch »  

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Re: Anti-Inflammatory Regimen Survey
Reply #9 - Dec 24th, 2011 at 3:12pm
 
LasVegas wrote on Dec 19th, 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† Wink


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)
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« Last Edit: Dec 24th, 2011 at 4:40pm by PlayDoh »  

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Re: Anti-Inflammatory Regimen Survey
Reply #10 - Dec 24th, 2011 at 3:17pm
 
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 cowís 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
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« Last Edit: Dec 24th, 2011 at 4:40pm by PlayDoh »  

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Re: Anti-Inflammatory Regimen Survey
Reply #11 - Dec 31st, 2011 at 9:46am
 
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.
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Re: Anti-Inflammatory Regimen Survey
Reply #12 - Dec 31st, 2011 at 3:37pm
 
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

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Re: Anti-Inflammatory Regimen Survey
Reply #13 - Jan 10th, 2012 at 11:58am
 
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
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Re: Anti-Inflammatory Regimen Survey
Reply #14 - Jan 11th, 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
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Re: Anti-Inflammatory Regimen Survey
Reply #15 - Jan 12th, 2012 at 10:55am
 
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
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Re: Anti-Inflammatory Regimen Survey
Reply #16 - Jan 12th, 2012 at 11:35am
 
IndianaJohn wrote on Jan 11th, 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 Smiley.
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Re: Anti-Inflammatory Regimen Survey
Reply #17 - Feb 9th, 2012 at 3:59am
 
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
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Re: Anti-Inflammatory Regimen Survey
Reply #18 - May 16th, 2012 at 11:24am
 
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
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Re: Anti-Inflammatory Regimen Survey
Reply #19 - May 17th, 2012 at 1:32am
 
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)!† †Grin
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Re: Anti-Inflammatory Regimen Survey
Reply #20 - May 17th, 2012 at 6:45am
 
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
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Re: Anti-Inflammatory Regimen Survey
Reply #21 - May 20th, 2012 at 5:22pm
 
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.† Wink† Thanks for the well-wishes, Batch!
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Re: Anti-Inflammatory Regimen Survey
Reply #22 - May 20th, 2012 at 5:32pm
 
Quote:
The neuro didn't want to hear about my vitamins

Fire his @$$. He's a know-it-all.
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Re: Anti-Inflammatory Regimen Survey
Reply #23 - May 20th, 2012 at 8:15pm
 
Pfft, I fired that guy a while back.† Let's just say his note-taking skills were lacking.
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Re: Anti-Inflammatory Regimen and Survey
Reply #24 - Jun 15th, 2012 at 6:43pm
 
Bump.
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