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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Anti-Inflammatory Vitamin D3 Regimen and Survey
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Message started by Batch on Dec 16th, 2011 at 9:40am

Title: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on 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-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

Title: Re: Anti-Inflammatory Regimen Survey
Post by Mike NZ on 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.

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by LasVegas 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  ;)

Title: Re: Anti-Inflammatory Regimen Survey
Post by hoosierdaddy on 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.

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by hoosierdaddy on 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.

Title: Re: Anti-Inflammatory Regimen Survey
Post by Trance on 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 :)

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by PlayDoh on 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  ;)


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)

Title: Re: Anti-Inflammatory Regimen Survey
Post by PlayDoh on 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 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by hoosierdaddy on 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.

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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


http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Am_J_Clin_Nutr-2003-Heaney-204-10.pdf (134 KB | 20 )

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by IndianaJohn 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by Chad on 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 :).

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by AppleNutClusters on 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)!   ;D

Title: Re: Anti-Inflammatory Regimen Survey
Post by Batch on 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

Title: Re: Anti-Inflammatory Regimen Survey
Post by AppleNutClusters on 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.  ;)  Thanks for the well-wishes, Batch!

Title: Re: Anti-Inflammatory Regimen Survey
Post by Brew on 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.

Title: Re: Anti-Inflammatory Regimen Survey
Post by AppleNutClusters on May 20th, 2012 at 8:15pm
Pfft, I fired that guy a while back.  Let's just say his note-taking skills were lacking.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jun 15th, 2012 at 6:43pm
Bump.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Aug 3rd, 2012 at 2:13pm
Bump

Title: Re: Anti-Inflammatory Regimen and Survey
Post by lydia nichole on Aug 3rd, 2012 at 3:11pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by lydia nichole on Aug 3rd, 2012 at 3:28pm
ive been taking since july 4th

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Aug 3rd, 2012 at 3:33pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Aug 3rd, 2012 at 3:44pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Aug 3rd, 2012 at 3:47pm
Thanks Brew...  You got the jump on me...  Good advise!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by palm on Sep 2nd, 2012 at 9:07pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Sep 6th, 2012 at 2:39pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 27th, 2012 at 10:37am
Bump.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Nov 22nd, 2012 at 12:20am
bump

Title: Re: Anti-Inflammatory Regimen and Survey
Post by pattik on Dec 1st, 2012 at 12:16pm
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.   

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Dec 1st, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by pattik on Dec 1st, 2012 at 2:20pm

Brew wrote on Dec 1st, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jan 29th, 2013 at 10:46pm
bump

Title: Re: Anti-Inflammatory Regimen and Survey
Post by zillygoat on Jan 30th, 2013 at 10:30pm
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.




Title: Re: Anti-Inflammatory Regimen and Survey
Post by 77BP on Feb 21st, 2013 at 9:55am
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..

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Feb 21st, 2013 at 10:50am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Balanchine on Feb 25th, 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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Feb 27th, 2013 at 10:14pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Balanchine on Feb 28th, 2013 at 6:12pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Chuh on Mar 6th, 2013 at 5:02am
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?


Title: Re: Anti-Inflammatory Regimen and Survey
Post by Guiseppi on Mar 6th, 2013 at 9:50am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Mike NZ on Mar 6th, 2013 at 9:55pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Globi on Mar 7th, 2013 at 5:52am
A vitamin D overdose can be dangerous.....and damage your kidneys.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by horsegirl on Mar 7th, 2013 at 7:21am
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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Mar 7th, 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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Globi on Mar 7th, 2013 at 7:58am

Brew wrote on Mar 7th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by horsegirl on Mar 7th, 2013 at 8:19am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Chuh on Mar 7th, 2013 at 9:34am

Balanchine wrote on Feb 25th, 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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Mar 7th, 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:

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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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Globi on Mar 7th, 2013 at 10:39am
@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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Globi on Mar 7th, 2013 at 10:40am

Batch wrote on Mar 7th, 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 Login or RegisterEND 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Globi on Mar 7th, 2013 at 10:43am
@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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by ktb on Mar 8th, 2013 at 3:15pm
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...

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Mar 10th, 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:

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Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Globi on Mar 10th, 2013 at 1:21pm

Batch wrote on Mar 10th, 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:

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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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by thierry on Apr 6th, 2013 at 6:24pm
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.
:)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Jeannie on Apr 8th, 2013 at 7:42pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 8th, 2013 at 8:27pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Balanchine on Apr 8th, 2013 at 8:30pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 9th, 2013 at 8:41am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by thierry on Apr 14th, 2013 at 6:02am
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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by dr1977 on Apr 14th, 2013 at 9:32am
"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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 14th, 2013 at 10:26pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by thierry on Apr 16th, 2013 at 7:24am
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.   :)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 16th, 2013 at 3:59pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by thierry on Apr 17th, 2013 at 11:57am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by JoeV on Apr 18th, 2013 at 7:05am
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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by thierry on Apr 20th, 2013 at 5:56pm
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,   :)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by HossDelgado on Apr 20th, 2013 at 6:51pm
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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Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 20th, 2013 at 8:39pm
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 Login or RegisterEND 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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by JoeV on Apr 21st, 2013 at 6:43am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Cynde on Apr 24th, 2013 at 12:10pm
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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Cynde on Apr 24th, 2013 at 2:00pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 24th, 2013 at 2:22pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Cynde on Apr 24th, 2013 at 3:55pm
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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by blacklab on Jun 13th, 2013 at 9:43am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jun 14th, 2013 at 1:07am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by LasVegas on Jun 14th, 2013 at 12:57pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jun 14th, 2013 at 3:48pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by LasVegas on Jun 14th, 2013 at 3:52pm
Crystal clear, thanks Batch ;)

-Gregg in Las Vegas

Title: Re: Anti-Inflammatory Regimen and Survey
Post by RichardN on Jun 16th, 2013 at 3:21am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by twotonejes on Jul 5th, 2013 at 3:37am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 5th, 2013 at 5:15pm
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.


Title: Re: Anti-Inflammatory Regimen and Survey
Post by twotonejes on Jul 5th, 2013 at 10:36pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by twotonejes on Jul 5th, 2013 at 10:41pm
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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Jul 8th, 2013 at 8:05pm

danallan wrote on Jul 8th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 9th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Jul 10th, 2013 at 9:13pm

Hoppy wrote on Jul 9th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Jul 11th, 2013 at 4:41pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by pattik on Jul 11th, 2013 at 4:58pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jul 11th, 2013 at 7:55pm
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


Title: Re: Anti-Inflammatory Regimen and Survey
Post by Sean McE on Jul 11th, 2013 at 11:06pm
   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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Denim101 on Jul 11th, 2013 at 11:11pm
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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by TeeJ2379 on Jul 12th, 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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jul 12th, 2013 at 6:06pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by TeeJ2379 on Jul 12th, 2013 at 11:13pm
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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Denim101 on Jul 12th, 2013 at 11:14pm
Thanks Batch! I"m taking the -oxide, so I'll go ahead and make the switch.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by roland88 on Jul 13th, 2013 at 1:58am
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)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 13th, 2013 at 3:00am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by blacklab on Jul 13th, 2013 at 3:04am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by blacklab on Jul 13th, 2013 at 3:11am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by roland88 on Jul 13th, 2013 at 3:53am
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? 

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 13th, 2013 at 4:30am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by roland88 on Jul 13th, 2013 at 4:43am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 13th, 2013 at 6:53am
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.


Title: Re: Anti-Inflammatory Regimen and Survey
Post by blacklab on Jul 13th, 2013 at 7:28am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jul 13th, 2013 at 7:21pm
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 Login or RegisterEND PRINTPAGE

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

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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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jul 13th, 2013 at 8:43pm
Danallan,

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

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Guiseppi on Jul 13th, 2013 at 8:43pm
Great news Dana...I'm 3 years pain free on the regimen.....there's something to it!

Joe

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 13th, 2013 at 10:15pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by roland88 on Jul 14th, 2013 at 4:58am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jul 14th, 2013 at 11:42am
Hey Roland,

Dictum Factum...

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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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 14th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by roland88 on Jul 15th, 2013 at 2:48am
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 14th, 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.


Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jul 15th, 2013 at 3:54am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by TeeJ2379 on Jul 20th, 2013 at 3:07pm

TeeJ2379 wrote on Jul 12th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by LasVegas on Aug 22nd, 2013 at 2:45pm

danallan wrote on Aug 22nd, 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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Aug 22nd, 2013 at 7:13pm
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:

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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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Choppo on Sep 3rd, 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!! 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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by slacker032 on Sep 3rd, 2013 at 8:47pm

Choppo wrote on Sep 3rd, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Choppo on Sep 3rd, 2013 at 8:59pm
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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Guiseppi on Sep 15th, 2013 at 6:22pm
Bumping this as I steered a lot of people at the conference this way! ;)

Joe

Title: Re: Anti-Inflammatory Regimen and Survey
Post by akage on Sep 30th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Sep 30th, 2013 at 10:47pm

akage wrote on Sep 30th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 1st, 2013 at 3:43am
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


Title: Re: Anti-Inflammatory Regimen and Survey
Post by shooky on Oct 6th, 2013 at 7:24pm
Batch, with the aggressive D3 dosing, wouldn't it make sense to up the co factors as well?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 7th, 2013 at 4:26am
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.

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

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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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Clusterman59 on Oct 7th, 2013 at 11:37pm
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!!!...:)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Oct 8th, 2013 at 12:38am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by scabtrapper on Oct 8th, 2013 at 5:38pm
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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 8th, 2013 at 11:59pm
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 Login or RegisterEND 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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by scabtrapper on Oct 9th, 2013 at 4:54pm
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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 9th, 2013 at 5:11pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by shooky on Oct 9th, 2013 at 6:53pm
Batch - thanks for the great answer.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by LasVegas on Oct 10th, 2013 at 2:16pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by pattik on Oct 10th, 2013 at 4:05pm
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. 

Title: Re: Anti-Inflammatory Regimen and Survey
Post by shooky on Oct 11th, 2013 at 3:34pm
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...

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 12th, 2013 at 2:56am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by sue_g on Oct 16th, 2013 at 8:27am
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  :)


Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 16th, 2013 at 4:21pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by sue_g on Oct 16th, 2013 at 6:20pm
Sounds good Batch.. Talk soon my friend :) Thanks again Batch  :)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by peep_nugget on Oct 17th, 2013 at 12:23pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Oct 18th, 2013 at 3:14pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Falcon on Oct 24th, 2013 at 2:38am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Oct 24th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Chuffy on Oct 24th, 2013 at 9:47am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Guiseppi on Oct 24th, 2013 at 9:51am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Falcon on Oct 24th, 2013 at 6:55pm

Hoppy wrote on Oct 24th, 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!


Title: Re: Anti-Inflammatory Regimen and Survey
Post by Brew on Oct 24th, 2013 at 9:22pm

Chuffy wrote on Oct 24th, 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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by zelenka on Oct 25th, 2013 at 3:35am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Oct 25th, 2013 at 3:48am
Hi Zelenka,
Batch is on vacation. The answer to your  :question is yes.
For the rest of your life.

Hoppy.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Marius on Oct 25th, 2013 at 6:21am
I'm gone give this a try

Title: Re: Anti-Inflammatory Regimen and Survey
Post by shooky on Nov 2nd, 2013 at 1:20pm
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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Nov 3rd, 2013 at 10:55am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by shooky on Nov 4th, 2013 at 5:27am
Batch, thanks! I sure will.


Title: Re: Anti-Inflammatory Regimen and Survey
Post by sue_g on Nov 4th, 2013 at 5:48pm
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  :)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Vinnie on Nov 4th, 2013 at 7:01pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by sue_g on Nov 4th, 2013 at 7:48pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by sue_g on Nov 5th, 2013 at 5:38am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Nov 5th, 2013 at 1:45pm
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


Title: Re: Anti-Inflammatory Regimen and Survey
Post by sue_g on Nov 5th, 2013 at 3:32pm
Thanks for your reply Batch!  I should have thought of researching the manufacturer.   ::);)

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Nov 6th, 2013 at 10:12pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Nov 11th, 2013 at 12:47am
The shadows have gone. Now i'ts back to 10,000iu vitamin
D3, plus the other co-factors.

Hoppy.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by TeeJ2379 on Nov 15th, 2013 at 11:51am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Nov 15th, 2013 at 1:14pm
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:

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Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Soul on Dec 5th, 2013 at 6:33am
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!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Rumeke on Dec 5th, 2013 at 11:24am
To Hoppy!! Fantastic news!

Judy

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Rumeke on Dec 5th, 2013 at 11:31am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Dec 5th, 2013 at 4:23pm
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:

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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.

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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.

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Take care and please keep us posted,

V/R, Batch
       

Title: Re: Anti-Inflammatory Regimen and Survey
Post by k.pascoe on Dec 7th, 2013 at 12:38pm
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!!!

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Jan 27th, 2014 at 6:58pm
bump

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Mar 27th, 2014 at 10:14am
Bump

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Apr 1st, 2014 at 1:41am
G'day Batch,
I'm just wondering. Does calcium citrate cause constipation
:question.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 1st, 2014 at 11:41am
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Apr 9th, 2014 at 7:00am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 9th, 2014 at 3:24pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Apr 9th, 2014 at 5:40pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Mike NZ on Apr 9th, 2014 at 8:06pm
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Apr 9th, 2014 at 11:14pm
G'day Mike,
I'm thinking of giving it a go with a squeeze of lemon
juice. And, see how I go.

Cheers, Hoppy.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by tpos on Apr 10th, 2014 at 11:35am
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.

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 10th, 2014 at 1:13pm
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 Login or RegisterEND PRINTPAGE

Scroll down to "Major Recommendations"

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen and Survey
Post by tpos on Apr 20th, 2014 at 2:00pm
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?

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on Apr 20th, 2014 at 2:49pm
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

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Batch on May 29th, 2014 at 12:14pm
bump

Title: Re: Anti-Inflammatory Regimen and Survey
Post by Hoppy on Jun 3rd, 2014 at 8:05pm
Got through another Autumn and no CHs  [smiley=2vrolijk_08.gif]

Hoppy.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kel77 on Jun 17th, 2014 at 2:08pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jun 20th, 2014 at 12:37pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Putter on Jul 14th, 2014 at 1:09pm
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)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by thierry on Jul 15th, 2014 at 3:34pm
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.
:)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jul 16th, 2014 at 12:18pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Putter on Jul 16th, 2014 at 10:03pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by shooky on Jul 17th, 2014 at 7:20pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Jul 21st, 2014 at 3:10pm
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 Login or RegisterEND 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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jul 21st, 2014 at 4:43pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Jul 21st, 2014 at 5:14pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jul 21st, 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.

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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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Jul 21st, 2014 at 8:38pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Jul 22nd, 2014 at 3:44pm
[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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Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Jul 30th, 2014 at 1:21pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by sue_g on Jul 30th, 2014 at 8:23pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Aug 15th, 2014 at 1:51pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Aug 15th, 2014 at 2:05pm

sue_g wrote on Jul 30th, 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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Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by sue_g on Aug 15th, 2014 at 3:27pm
Thanks Fiesty!  pfw's to you :)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by CHRD on Sep 2nd, 2014 at 8:03pm

Batch wrote on Jul 21st, 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!

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 4th, 2014 at 2:51pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by feisty on Sep 4th, 2014 at 3:48pm
Thanks for the clarification about how the Regimen is designed Batch :) .

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Shakey on Sep 5th, 2014 at 8:48am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 5th, 2014 at 11:15am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Shakey on Sep 5th, 2014 at 12:38pm
Thanks.

The reason I am asking is because there are some differences in the amounts per serving for certain contents among the products. I narrowed it down to a few. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE for instance.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 5th, 2014 at 6:03pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Shakey on Sep 6th, 2014 at 5:37am
Allright, thanks. I'll try the regimen with the B-complex. Third time lucky, I hope  :)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Sep 8th, 2014 at 12:39pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 8th, 2014 at 2:26pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by CH Wife on Sep 10th, 2014 at 1:43pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Sep 11th, 2014 at 8:14am
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. 

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 11th, 2014 at 9:38am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 11th, 2014 at 9:45am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by sue_g on Sep 16th, 2014 at 2:43pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 17th, 2014 at 4:02pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by sue_g on Sep 17th, 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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by shooky on Sep 17th, 2014 at 6:20pm
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.



Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by CHRD on Sep 18th, 2014 at 10:11pm

sue_g wrote on Sep 17th, 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]

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Schmedleyb on Sep 19th, 2014 at 4:57pm
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. 
   



Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 19th, 2014 at 7:43pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 22nd, 2014 at 6:36am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Fitzer on Sep 22nd, 2014 at 4:52pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 23rd, 2014 at 1:03am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by stevegeebe on Sep 23rd, 2014 at 2:01pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by stevegeebe on Sep 23rd, 2014 at 2:09pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 23rd, 2014 at 2:28pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Sep 23rd, 2014 at 3:12pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 24th, 2014 at 1:29am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by stevegeebe on Sep 24th, 2014 at 7:53am
Batch,
Bumped the D3.  Only two minor, minor outbreaks overnight.  Just waking up.

I will keep you posted.

Thanks,
Steve G

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Sep 24th, 2014 at 10:08am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by shooky on Sep 24th, 2014 at 10:49am
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?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 24th, 2014 at 10:03pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Fitzer on Sep 25th, 2014 at 10:40pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 25th, 2014 at 11:38pm
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



Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by shooky on Sep 26th, 2014 at 3:06pm
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?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Sep 26th, 2014 at 4:39pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by shooky on Sep 28th, 2014 at 5:59am
I surely will. Shana Tovah U-Metukah ("and a sweet one") Batch.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Oct 7th, 2014 at 9:26pm
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 >:(

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Oct 8th, 2014 at 3:24pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Oct 9th, 2014 at 6:32pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by justsammer on Oct 14th, 2014 at 4:02pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Oct 14th, 2014 at 6:43pm
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 Login or RegisterEND PRINTPAGE.

The vitamin K2 (MK-7) will run 15 to 16 cents a tablet less shipping.

Hope this helps.

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Fitzer on Oct 15th, 2014 at 6:56pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by TeeJ2379 on Oct 17th, 2014 at 1:59pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Oct 20th, 2014 at 4:36pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Oct 20th, 2014 at 7:42pm
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?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Oct 20th, 2014 at 11:14pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Oct 22nd, 2014 at 6:54am
Thanks Batch. Bloodwork before cutting back I assume?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Oct 22nd, 2014 at 10:30am
Birdman,

Dealer's choice....  Just don't wait too long.

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Oct 22nd, 2014 at 9:15pm
Thanks. And love the use of "dealers choice".   Well played

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Break_the_Cycle on Oct 26th, 2014 at 6:32pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Oct 27th, 2014 at 10:05am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by E-Double on Nov 8th, 2014 at 8:20pm
Well done Pete!!!

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Nov 15th, 2014 at 12:02pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by birdman on Dec 10th, 2014 at 1:27pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Dec 10th, 2014 at 3:24pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by sue_g on Dec 10th, 2014 at 7:25pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Dec 10th, 2014 at 9:28pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Dec 13th, 2014 at 4:44pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Dec 13th, 2014 at 6:39pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Dec 15th, 2014 at 3:48pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by nancyk on Dec 27th, 2014 at 7:21pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Dec 27th, 2014 at 8:21pm
1200mg-2400mg Fish Oil /day
400mg-500mg Magnesium /day

Good Luck
Hoppy

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Dec 27th, 2014 at 8:28pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Dec 27th, 2014 at 8:38pm
I get my Kirkland Mature Multi 400 tablets online from
Biovea.

Hoppy.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by annualheadcase on Jan 9th, 2015 at 9:23pm
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.  :)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Mike NZ on Jan 9th, 2015 at 10:31pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jan 10th, 2015 at 1:55am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Chuffy on Jan 10th, 2015 at 8:01am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jan 10th, 2015 at 2:50pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Jan 10th, 2015 at 7:08pm
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.


Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by annualheadcase on Jan 14th, 2015 at 9:11pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Jan 28th, 2015 at 7:53pm
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?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jan 29th, 2015 at 1:15am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Jan 30th, 2015 at 5:53pm
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-)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jan 30th, 2015 at 6:41pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by algraz on Jan 31st, 2015 at 3:02pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Jan 31st, 2015 at 3:34pm
That's a great idea.
Peter.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Feb 1st, 2015 at 6:45am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by LasVegas on Feb 10th, 2015 at 9:26pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Feb 11th, 2015 at 11:04am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by LasVegas on Feb 12th, 2015 at 12:58am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Feb 12th, 2015 at 1:33am
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Feb 12th, 2015 at 7:09am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Feb 22nd, 2015 at 12:13pm
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 Login or RegisterEND PRINTPAGE
Sorry if this has been well covered somewhere in here.
Thank you for your lifesaving work !

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Feb 22nd, 2015 at 4:19pm
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 Login or RegisterEND 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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Mar 1st, 2015 at 11:11pm
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!

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Mike NZ on Mar 2nd, 2015 at 12:33am
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Mar 3rd, 2015 at 10:59pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Mar 13th, 2015 at 9:24am
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 !

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Mar 13th, 2015 at 4:48pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Mar 14th, 2015 at 5:05am
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by baris25 on Mar 15th, 2015 at 6:13am
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 :)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Mar 16th, 2015 at 2:20pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Mar 16th, 2015 at 3:08pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Mar 17th, 2015 at 6:43am
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Glassman on Mar 21st, 2015 at 10:55am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Mar 21st, 2015 at 5:03pm
Gary,

Wooo Hooo!  'Luv to hear feedback reports like this...  Keep'em coming...

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Glassman on Mar 25th, 2015 at 11:01am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Mar 25th, 2015 at 12:17pm
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Mar 25th, 2015 at 2:09pm
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.
result.jpg (49 KB | 1 )

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Mar 25th, 2015 at 11:27pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Mar 31st, 2015 at 9:34am
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.  :)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Mar 31st, 2015 at 10:44pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by blacklab on Apr 1st, 2015 at 1:50am
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Apr 1st, 2015 at 4:52am
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Apr 1st, 2015 at 7:38am
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.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 2nd, 2015 at 8:00pm
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

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by blacklab on Apr 8th, 2015 at 1:47am
Hi Guys,
                as previously mentioned, last week I went in for my regular blood tests. 
Last test, in November,  240 nmol ( no calcium test)
last weeks test               222 nmol  calcium 2.35
now that with being on the regime for nearly 2 years and titrating up a fair bit last year due to persistent shadows.
the previous test was around 205 nmol, 6 months pryor
Calcium level, last time tested, no difference.
The proof is in the pudding as they say there Batch !!!!

Now, as per my previous post, with a continuing problem of looseness !!  I started a 3 month course of a good probiotic, worked well for 3 days then back to the same.....
So, after my test ( before the results) I went completely off the regime for 4 days, only taking the probiotic and 180 mg verapamil. Within 2 days, everything "firmed up" and on the 5th day, slowly introduced the regime, first day, just the multi, second day, re introduced the whole regime, but only 220 mg magnesium ( and the mag content of the multi, 50 mg)  and so far ok, ( a week).  I might leave it at that for a week or so, then lift the magnesium up to 440 mg plus multi content.
The funny thing was, with a vit d3 half life of 15 days (?)
I probably dropped from 222 nmol down to 200 nmol ?   and bugga me, wouldn't ya read about it, shadows and hits through the night for the last 3 nights !!!!   however, at this stage, its almost like a mini cluster hit, more than a shadow, getting to kip 3 ish, and only lasting 15 minutes or so. The ones in the middle of the night ( 3 last night, 12.00 am, 2.00 am and 5.00 am)  I get up, have a scratch, ponder on a red bull or an imigran tablet, have a cold glass of water and within minutes it disappears !!!
Hey, Im not complaining, because the alternative pryor to the regime, was horrific !
So, with out fear now of any so called " intoxication" of vit d3, with regard to calcium serum levels, Im titrating up tonight with 50,000 iu and a few days of 20,000 of vit d and try and smack down this current cycle.
I can live with the last 6 months of what "The beast" has thrown my way,  and now more than ever, I have no issues at all with titrating up with d3, even if my levels are over 200 nmol ( 80 ng ).
I know the key with me, is getting my stomach to accept all forms of the regime, which so far, touch wood this time all good ( a week and counting  ;D )
But I know I wont be doing another burn  down of d3 any time soon,   Batch, I don't know how you do it    :-?
anyway, just thought ide share the test results and back up what batch has been stating for a while now,   unless there's other pertaining issues, Vit d3 is pretty safe !

regards
colin

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Apr 8th, 2015 at 2:21am
I got another blood test yesterday. I am just wondering this


Batch wrote on Mar 31st, 2015 at 10:44pm:
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...


half-life time, what it should mean in practise? I have now been 26 days without any vitamins (ever since I got that 473nmol/L reading) but yesterday blood test still showed >350nmol/L. So it's over 350 but I don't know the exact number.

MOD: I am in Finland so there's no way sun would have any role. And can't think of even one thing in my diet that would. For some reason serum concentration just stays up.

:-?

MOD2: Found this

"An additional complication in assessing vitamin D status is in the actual measurement of serum 25(OH)D concentrations. Considerable variability exists among the various assays available (the two most common methods being antibody based and liquid chromatography based) and among laboratories that conduct the analyses [1,7,8]. This means that compared with the actual concentration of 25(OH)D in a sample of blood serum, a falsely low or falsely high value may be obtained depending on the assay or laboratory used [9]. A standard reference material for 25(OH)D became available in July 2009 that permits standardization of values across laboratories and may improve method-related variability [1,10]."

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Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 8th, 2015 at 12:22pm
Tony,

The two week 25D half-life is an average. It's also dependent on the actual starting serum concentration where vitamin D3 supplements are stopped. On top of that there are differing opinions on 25D half-life...  Some have the half-life at two months... but the average range appears to be one to six weeks.

Henry Lahore, the brains behind the Vitamin D Wiki website has a page on this topic at the following link:

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The following graphic illustrates the range of 25D Half-Life by 25D serum concentration.

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Body Mass Index (BMI) can play a role...  If your BMI is above 25, it's possible you've retained enough 25D in fat tissues to slow its release and this would increase the half-life. 

You've pointed out another potential answer in the lab test...  It's not uncommon to have slightly different 25(OH)D results if two different assay methods are used... 

Most medical labs us an automated Immunoassay with Liquid Chromatography–Tandem Mass Spectrometry...  The error margins for this assay method are generally less than 2 nmol/L.  Moreoever, nearly all medical labs calibrate their assay method against a known standard... so I don't think the lab results are in question.

Diet is likely the primary determinant of 25D half-life in your case.  Look over your dietary intake.

My question to you at this point is howz the head?

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 8th, 2015 at 3:27pm
Colin,

Great post and tantalizing topic...  Dosing changes and resulting lab data while taking this regimen always grab my attention.

This topic also hits the top of my list of things to do... and that's to come up with a simple rule of thumb regarding the maintenance of a CH pain free status while taking the anti-inflammatory regimen. 

Posts here at CH.com and data from the online survey of 127 CH'ers taking the anti-inflammatory regimen provide us with important findings.  For example, nearly all CH'ers with active bouts of CH have a vitamin D3 deficiency with a 25D serum concentration less than 30 ng/mL, (75 nmol/L).

This same data set also provides us with important data on the average "sweet spot" in 25D serum concentration that keeps us pain free at 80 ng/mL, (200 nmol/L). This 25D serum concentration requires an average daily vitamin D3 intake of 10,000 IU/day. 

Moreover, although this 25D serum concentration is likely higher than what is actually needed to maintain a CH pain free state, it does provide sufficient reserves to handle relatively minor cases of inflammation. 

We've also found from the empirical data provided by CH'ers taking this regimen, that there are a number of medical conditions that result in a generalized increase in inflammation that can be overcome by increasing the vitamin D3 intake. 

Examples include viral and bacterial infections, surgery and trauma.  In other words, comorbid medical conditions that compete for the same available serum substrates of vitamin D and 25D needed to stay CH pain free.

The simple course of action/rule of thumb is to increase vitamin D3 intake and if possible, treat the comorbid condition. 

This is an easy thing to do if the source of inflammation is a bacterial infection easily and effectively treated with an antibiotic.  Of course we'd need to repair the collateral damage caused by antibiotics by taking probiotics to recolonize friendly bacteria in the GI tract that were destroyed by the antibiotic.

There are no silver bullets for viral infections and the only defense is maintaining a healthy immune system...  That makes taking additional vitamin D3 and magnesium to boost the immune system, the prudent course of action.  Trauma and surgery fall into this category as well.  Both conditions have been linked to a drop in serum 25D concentration upwards of 40% within a week of the trauma or surgery.

I've found there is one general medical condition that can't be easily overcome by taking more vitamin D3... and that's an allergic reaction.  The likely reason for this is an allergic reaction generates a flood of histamines that overload the capacity of this regimen to prevent CH.

Roughly 17% of CH'ers who start the anti-inflammatory regimen don't respond with a decrease or cessation of CH symptoms...  Data from the online survey of CH'ers taking this regimen indicate comorbid medical conditions in roughly a third of these cases.

There are also a number of CH'ers taking 10,000 IU/day or more and maintaining a 25D serum concentration between 100 to 150 ng/mL, (250 to 375 nmol/L) and are still getting hit. 

In many cases, there are no outward symptoms to help in the identification of possible underlying medical conditions and that suggests the presence of a possible sub-clinical allergic reaction.

Starting at the first of March, I began titraing my vitamin D3 from a maintenance dose of 10,000 IU/day up to 50,000 IU/day to combat the high pollen count in an attempt to stay pain free.  This worked for the first two weeks... However by mid March the pollen count got so onerous I started to get hit... and I was taking 50,000 IU/day vitamin D3.  You can see why in the following photos of my formerly black pickup coated with Alder pollen...

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Not to be outdone, as the Alder pollen drop decreased... the Bigleaf Maples have started their pollen drop...  and it looks to be even more onerous...

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That's not new leaves on the Bigleaf Maple tree shown above... It's Bigleaf Maple blooms loaded with bright yellow pollen shown below.

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I've never been troubled by pollen allergies...  That said, when the airborne pollen is blowing around like a dust storm and you can see it sifting into the air...  all bets are off.

Fortunately, a solution exists for this case, at least for me and a few other CH'ers, and that is to start a course of benadryl (diphenhydramine) at 25 mg four times a day... Start this course with a 50 mg loading dose of benedryl.

The rational for taking benedryl has to do with its capacity as first-generation antihistamine, to pass through the blood brain barrier in order to block histamine receptors in brain cells... where CH'ers need this capability most.

The down side of benedryl and other first-generation antihistamines is they're a CNS depressant so cause drowsiness. Second- and third-generation anti-histamines cannot pass through the blood brain barrier so do not have this problem.

Accordingly, if you do start taking benedryl, don't drive if at all possible as you will get drowsy.  Not surprisingly, this drowsiness can also be a benefit in most cases as most of us have lost quality sleep due to the night hits and the benedryl will help get that badly needed sleep.

Hope this helps...

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Apr 9th, 2015 at 8:59am
My wonderful PCP just left on the maternity leave, so currently don't have a doctor I could talk to so now it's even more difficult to get blood tests. But at least I have one more coming in 2 weeks. I think I should be at least under 350 then.

Now that I don't have a doctor I can only talk to nurse and just went through my diet for the past month with her, could there be anything there that would keep my levels up - we didn't find anything.

I'm underweight and my BMI is 17.9 so that should not be a factor either.

I got an immediate increase in CH activity when I stopped the Vit D but mysteriously now things have seemed to calm down. Would not have believed to be doing this well at this stage.

Will keep you posted, thanks again Batch  :)

MOD: I have been using Acetium (L-cysteine) almost regularly this year, just thinking out loud could that play a role in elevating 25(OH)D level more rapidly, keeping it up and/or levels coming down so slow ?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 9th, 2015 at 4:27pm
Tony,

It took a good bit reading to get my head around the information you've provided but the combination of L-Cysteine and a low BMI explains a lot... 

It appears L-Cysteine triggers rapid hydroxylation of vitamin D3 to 25D by increasing the activity of the enzyme 25-hydroxylase which adds a hydroxyl group (-OH) to vitamin D3 at the 25th position on this molecule.

In addition, as vitamin D3 and its metabolites are lipophilic - (rapidly dissolve in fats), the low BMI (low body fat content) also accelerates a rapid increase in serum concentrations of vitamin D3 and 25D due to the lack of fat to take them out of the blood stream for storage.  So this is why your 25D shot up so fast.

I suspect L-Cysteine is also mediating another vitamin D3 enzymatic process by limiting the activity of 25D-24-hydroxylase witch hydroxylates 25D to 24,25D by adding a hydroxyl group to the 24th position on the vitamin D3 molecule.  As 24,25D is an inactive vitamin D3 metabolite that's rapidly broken down and eliminated in urine, the absence of this enzymatic process would help explain why the 25D serum concentration remains elevated.

That the activity of your CH pattern has dropped is clearly a function of the elevated 25D serum concentration.  I suspect the frequency of your CH attacks will remain low until your serum 25D eventually drops below 175 nmol/L.

The increase in CH frequency when you stopped taking vitamin D3 can also be explained.  This has to do with where vitamin D3 metabolism takes place. 

Conventional wisdom held that serum concentrations of vitamin D3 is first metabolized (hydroxylated) by the liver into 25D which then travels through the blood stream to target cells where it enters the cells and then metabolized to 1,25D the active form to support genetic expression.

Recent research indicates it's the vitamin D3 that actually enters target cells where it is first hydroxylated to 25D and then hydroxylated again to 1,25D. 

When you stopped your vitamin D3 intake, that left only 25D to feed the genetic expression processes throughout your body.  Moreover as the vitamin D3 molecule is smaller than the 25D molecule, vitamin D3 passes more rapidly through the cell wall than 25D.

Bottom line...  Your low BMI leaves little fat for vitamin D3 and 25D storage so nearly all of the vitamin D3 and 25D remains in blood serum.  L-Cysteine increases the rate of metabolism that takes vitamin D3 to 25D. It also inhibits the body's normal vitamin D3 control mechanism that metabolizes 25D to the inactive metabolite 24,25D. 

The combination of these two processes keeps 25D concentrations higher than normal.  That also means the rate at which the 25D serum concentration drops is likely controlled by the speed at which it's consumed during genetic expression... and that is not very fast...

Your next few labs on 25D will be very interesting...

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Apr 10th, 2015 at 6:45am
Wow, Batch. Just Wow.
I am overwhelmed.
Thank You SO much.
:)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Apr 11th, 2015 at 1:06am
In the spirit of keeping the experiences rolling... My Feb 25(OH)D labs came back at 72 ng/ml.  I had been feeling much better than I had in a long time at that time.  Then the shadows returned in early March and I went into a full CH cycle two weeks ago.  I got in to the doctor's office, got some Verapamil (180 mg/day), and had my 25(OH)D test run again.  Test results came back this Thursday... apparently I consume Vitamin D at the exact same rate that a T-Rex consumes a cheeseburger.  ;D

Even on 15,000 IU/day maintenance, my 25D levels had dropped to 52 ng/ml!  I am thinking a series of illnesses in mid-Feb, coupled with the start of allergy season (I literally live in the allergy capital of America), sucked up all of my D reserves.  So I have increased my D3 intake to 20,000 IU/day and have been loading an extra 50K IU for the last two days to bring it back up.  I already feel better and I haven't had a CH since Wednesday morning, although the shadows are still lingering.

A couple of points to note:  My normal cycle hits at a rate of 6 - 8 CH/day for two weeks, drops to 2 - 3 for two weeks, then gradually tapers to 1 per day or every-other-day until it fizzles out at the end of week 6 or 7.  The first four weeks worth are nothing lower than a Kip 7.  Oxygen has only ever worked to delay the onset, never abort it.  THIS CYCLE started at 1 CH/day for three days, shifted to 1 CH every-other-day for 6 days, and I've only had a few Kip 1/2 shadows for the last 3 days.  And, God bless, the oxygen works to abort most of them for the first time ever!  Additionally, only one of my CH hit a Kip 8 and it was at the very start (didn't get to the O2 tank in time).  The other two that broke through were about in the 5/6 range.  If this is all the worse it gets, it's bearable... I never thought I would ever call this condition bearable, but after having been in hell with it, this is a far less traumatic version of the norm.

As a side note, I generally have really bad allergies at this time of year and I have to take allergy meds and use a nasal spray daily, in addition to eye drops from time-to-time.  This year, a once a day allergy pill has taken care of it all.  I'm fairly confident that the higher levels of D in my system are also suppressing my usual spring allergic reaction to all things green or blooming.  I was outside a good deal of today doing yard work with nary a nasal drip, nor an itchy eye to be had.

As long as the CHs keep trending towards rapid shut-down, my next neuro appointment/D test is in June.  I will be interested to see if I can figure out how to maintain a decent 25(OH)D range.

Cheers!

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Chuffy on Apr 11th, 2015 at 5:56am
Here's one for you Batch.

I just got my Calcium Serum results back  as I have never had that test before, of course they mean absolutely nothing to me, I'm sure you'll make sense of them.

As follows:

Albumin 40 g/l
Adjusted Calcium Concentration 2.50 nmol
Calcium 2.49 nmol

It just said satisfactory so I assume all is ok?

Thanks Batch.  :)

By the way Tony, I use the same Healthy Origins D3 as you and I always struggle keeping the levels low and have gone way over at times. I now only take 5,000iu a day and that seems to keep me in the ball park.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Apr 11th, 2015 at 10:01pm
Hi Chuffy and Tony,
I get my vitamin D3 on line from Biovea, and never had
a problem keeping my levels within the green zone. just
a thought.

Cheers, Hoppy.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Apr 12th, 2015 at 12:37am
Hi there,

I get mine on-line from Iherb.com. The brand is Healthy Origins.  Cost me about $30 (US) for 360 10,000 iu soft gels (postage included) and they arrived to Ireland in a few days. They are currently on offer at $19.99, plus, of course, postage to your own country.   

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Never any problems with them and fairly good value for money.

Best wishes,

Peter.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hoppy on Apr 12th, 2015 at 3:45am
Biovea vitamin D3 are made in the US with one of the
highest safety rating worldwide GMP. 60 softgels, not
cheap, but I'm happy.

Hoppy.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Apr 12th, 2015 at 4:42am
A happy Hoppy!

Can't argue with that.

Peter.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 12th, 2015 at 6:28pm
Hey Rob,

Thanks for the update and the lab data.  You're correct, your serum calcium concentration is just fine.  Had it been above or below the normal reference range, the lab and your PCP would have gone to General Quarters...

You still on the road?

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Chuffy on Apr 13th, 2015 at 1:18pm
Thanks Batch, thought that might be the case.

No, I'm not touring at the mo. Just teaching guitar, trying to get my band back together and doing a lot of fishing  ;)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Apr 14th, 2015 at 11:27pm
For those who have been struggling with getting the Anti-Inflammatory Regimen to work, here is a suggestion...  I have been in an active cycle for two and a half weeks.  I've been on AIR for months, since I knew I was nearing the start of a CH cycle.  AIR seems to have lessened the frequency and pain of the CHs a little, and it is helping the oxygen to work better as an abortive, but it is not stopping the cycle as it has for most.  I also have been having constant, painful shadows in between CHs.  I've been loading on D3 to boost my 25(OH)D levels really high, but I haven't noticed much of a difference past 70 ng/ml. 

My neurologist's nurse practitioner suggested adding 400 mg of Vitamin B2 (Riboflavin) per day to my other vitamins.  She said it has a history of helping to reduce the number of headaches that people with headaches have and that they have added it to their suggested homeopathic preventatives.  It is tricky to find it outside of a B-Complex vitamin, but I located some at GNC.  She said that you can also take it in the B-Complex form as well. 

At any rate, I took the B2 today with my other vitamins and about two hours later the horrible, stuffy, cramped feeling in my head started to break up.  Over the last 8 hours almost all of the pain has dissipated.  I can still tell that the nerve is a little active, but considering what I've dealt with the last few weeks, this is like a picnic.  I checked into the B2 vitamin and it doesn't conflict with any medications used for treating CH or any other vitamins.  It does say that it can take up to 3 months to work, but I experience results within hours.  Additionally, after further research, I think I will include the B-Complex (B1-7, B9, B12) in my regimen.  B-Complex vitamins work to support cell metabolism, which supports healthy nerve function. Additionally, they are water-soluble, so you essentially will tinkle out any excess vitamins your body doesn't use. :)


My suggestion: if you have been having mixed or little results from AIR, add in 400 mg of B2 per day via B2 or B-Complex vitamins.  I will post back in a few more days to let you know if it is still working.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by blacklab on Apr 15th, 2015 at 6:28am
kurama,  that's great news.
for your info, quite some time ago, the vit b multi which has all the main vit b no's in it, was added to the regime.
It was recommended to take them for 3 months
looks like you may have missed that ????
batch added it after another neurologist was treating their patents with a similar vit d3 regime for sleep disorders, as batch introduced, apart from the vit b side, so Batch introduced it, or recommended we follow suit with a 3 month coarse.
At least now you've recognised it can help, So hopefully it improves your current cycle.....

all the best
colin

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 15th, 2015 at 7:03am
Hey Kurama,

Thank you for the update... I need to know if you tried the 3-month course of vitamin B 50 shown in the table of supplements and doses called for in this regimen at the following link or if you were using an older version of this regimen:

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I added Vitamin B 50 to this regimen a year ago at the suggestion of Dr. Stasha Gominak, MD.  I added it for the very reason you started taking the Vitamin B2 (Riboflavin)... It appears you had a vitamin B2 deficiency.

The vitamin B 50 called for in the Anti-Inflammatory Regimen is formulated with 50 mg each of the seven B vitamins plus 400 mg Folic Acid... Accordingly, one of these tablets will also contain 50 mg Vitamin B2 (Riboflavin)...

If you were taking the vitamin B 50 and needed to take more vitamin B2 (Riboflavin) in order to experience a pain free response from this regimen, I'll need to know that so I can make a note about this for future users of this regimen.

We've also confirmed that allergic reactions to a wide range of allergens from spring pollen to dust mites can and will overpower this regimen and keep it from working properly to prevent your CH.  Allergic reactions result a flood of histamine within the mucus membranes in the nasal passages and blood stream.  When this happens, it keeps this regimen from preventing your CH. 

If you suspect you're having an allergic reaction or you've been taking this regimen for 10 days without any relief, the simple fix is a week-long course of Benadryl 25 mg   taken 4 times a day every 4 hours.  If the CH return within a day or two after the first week, continue the taking the 25 mg Benadryl tablets three times a day.

The rationale for taking benadryl is due to the fact that it is a first-generation antihistamine that passes through the blood brain barrier to block histamine receptors in the brain's nerve cells.  This helps stop the neurogenic inflammation in and around the trigeminal nerve and in the process, helps this regimen work as intended to prevent CH.

The downside of benadryl is it acts as a CNS depressant so you will get drowsy and shouldn't drive if you take it.

Check with your PCP or healthcare provider before starting the benadryl, particularly if you're taking any other prescription medications.

Thanks again for the update.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by red ryder on Apr 15th, 2015 at 11:34am
Hey Batch,

Long time since I have been in cycle thanks to your anti-inflam. regiment. The beast came back with a vengeance last week. It has been 1 1/2 years since last episode. I think I am in the same boat as you with the pollen here in Huntsville,Al.Last check d3 level was 101. I will get my D3 levels checked again tomorrow. Getting slammed every hour at night >:( Beast wakes me up and get on O2 then pass out then whamo 50 minutes later. This goes on all night long till I give in and get up for good at 5am. They also have been hitting during day 2-4 times a day which is new for last 3-4 cycles. I am a chiropractor here in Huntsville and the sleep depravation is beginning to show!!! Upped vit d to 15,000 - 20,000 and started verapamil yesterday.
   In short I was looking on the site to see if anyone was trying antihistamines in combo with your regiment and look what I came across. I wanted to tell you I am going to try the Benadryl also today and let you know the results. Trying not to take steroids but am about to give in. Thanks for all you do. I send all my patients that have clusters to the website and give them your thread to read, then to the neuro.  Jay

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 15th, 2015 at 8:33pm
Hey Jay,

Pick up some vitamin B 50 (90 count) if you haven't already done so... a tablet a day for thee months should take care of an B vitamin deficiencies...  for some reason that happens on vitamin D3 at the doses we take.

You also need to pick up some Benadryl for the allergies... They trigger massive floods of histamines that make all forms of CH intervention limited at best in efficacy to totally ineffective.  Take one of the 25 mg tabs four times a day for a week then back off and see what happens... I'm still tapering off the benadryl at 2 per day... You should be showing the beast the way out the door after 12 to 24 hours of benadryl...

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Apr 16th, 2015 at 1:08am
Hey Batch!  I didn't take the B-50 because I have taken multi-vitamins for years that contain B vitamins.  For your records, the specific breakdown is: 25% DV of B1, B2, B3, and B5; 100% DV B9 (folic acid); 125% DV B7; and 150% B6 and B12. However, I have been on really high doses of Vitamin D for months due to illness, allergens and CHs.  I wonder if this didn't impact my B vitamin levels or if the multi DVs are too low for me. 

My car was literally greenish-yellow this morning from all of the pollen (it is actually a metallic gray).  Not surprisingly, I had two CHs last night despite feeling an overall improvement with the addition of the B-2 yesterday.  I take an allergy medication daily, but I'm wondering if it isn't working as well as the Benedryl would due to the blood-brain barrier challenge.  It's an over-the-counter medicine, so I could change it at my leisure.  I'm on low doses of Verapamil, but that's it for prescripts.  I don't see that Benedryl and Verapamil would cause any bad interactions (other than inability to stay awake during work(which may not be entirely bad considering the lack of sleep lately)).  Fortunately, I work from home and have an awesome boss that let's me do whatever I need to do to balance health and work when the CHs flair up.

I think I will go see if I can find the B-50 tomorrow or a super B-Complex and get some Benedryl, too.  I'm super determined to figure out how to get this to work!  I will post back after tinkering with it for a few days with the results.

Thanks for the tips, Batch!  You da man!

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 16th, 2015 at 11:45am
Hey Kurama,

Thanks for the feedback.  I spent some time discussing the anti-inflammatory regimen with Dr. Stasha Gominak, MD, a neurologist in Tyler TX.  She's been using a similar regimen for her patients with sleep, chronic pain and headache disorders for over six years.

She was seeing similar result to what we've seen with the anti-inflammatory regimen.  However, she also observed an interesting phenomenon that after a year or two on her regimen, a number of her patients started reporting it was no longer working and the symptoms that had been under control and absent for so long were reemerging again.

She ran tests on a number of these patients and couldn't find any reason why they stopped responding.  Then one of her patients called to say she had started taking Vitamin B2 (Riboflavin), like you, and that the vitamin D3 began to work again.

Dr. Gominak ran tests for the B vitamins on some of her other patients who had stopped responding to vitamin D3.  What she found was they all had one or more B vitamin deficiencies...  Her solution was to take a shotgun approach using vitamin B 50 to make sure any deficiencies among the seven B vitamins were being addressed.

Why this happens is still a mystery, but a logical reason follows.  Our bodies need nutrients to stay healthy and it's also clear that vitamin D3 is so essential, our bodies make their own when exposed to the UV-B in sunlight. 

It's equally clear vitamin D3 helps our bodies function more efficiently so it's not unreasonable to assume that many of the processes helped by vitamin D3 also consume other nutrients more rapidly.  This is likely the case with respect to the B vitamins.

The 3-month course of vitamin B 50 should help.  However, Dr. Gominak also cautioned not to take the vitamin B 50 for more than 3 months.  This warning came as some of her patients who had taken vitamin B 50 for more than 3 months started reporting the vitamin D3 regimen had again stopped working.  A few days to a week after stopping the vitamin B 50, the vitamin D3 started working once again.

Bottom line, as you've already been supplementing with most of the B vitamins, you may not need a full three month course of vitamin B 50.

The other interesting thing we've discovered over the last few months is allergies play a major role in CH due to the flood of histamine they cause. As allergies can easily cause a significant increase in frequency and severity of CH, it's best to treat them as soon as you detect any symptoms or experience an up-tic in CH activity.  It's common for some allergies to be sub-clinical, i.e., no obvious symptoms other than an up-tic in CH.

I've found a one-week course of 25 mg benedryl taken 4 times a day every four hours is sufficient while taking the anti-inflammatory regimen.  Benedryl is a potent antihistamine and it's also a CNS depressant that will cause drowsiness, so don't drive if possible and if you do drive, be very careful.

If your CH symptoms return after the week of benedryl, start a second course or 2 to 3 benedryl tablets a day and try to taper off it completely in two weeks.  It takes roughly three hours for oral benedryl to reach a maximum serum concentration and the half-life is 8 to 12 hours depending on age.

As always, please keep your PCP or neurologist in the loop with any change in supplements and medications like benedryl.

Thanks again for the update.

Take care and please keep us posted.

V/R, Batch



Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Apr 17th, 2015 at 7:11pm
I'm having one of those days where I feel really defeated.  The B-2 stopped them for one day, then they fired back up.  I couldn't find the B-50, but I found a B-100, so I figured that would work well enough for the time being.  Started the B-100 and the Benadryl almost 48 hours ago.  By my count, my 25(OH)D concentration should be hovering around 107 ng/ml.  I still had 3 CHs last night and had to use the Miganal to get them to stop.  Honestly, the only thing that seems to be working is the Migranal.  If I use it I get about a 48 hour break before they return.

My neuro just upped my Verapamil to 120 mg 3x/day.  So far, that hasn't been working either.  O2 works to stop the first hit, but none of the ones that come after.  The D3 Reg seems to lessen the constant pain I have in between hits, but doesn't appear to be slowing or breaking the cycle.  I'm going to stay the course and hope for the best, but considering nothing other than the ergots have helped to stop them, I have a feeling I'm just going to be waiting them out as usual.  :'(

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 17th, 2015 at 11:31pm
Kurama,

Sorry you're having such a rough time.  Regarding the Vitamin B100.  Take one every other day...  That will give you the same net intake as vitamin B50.  This supplement can take a few days to bring up any deficiency among your B vitamins.

I suspect it's going to take a little longer for the Benadryl to kick in...  Cmax is about three hours and the half-life for adults is 10 to 12 hours...  It still takes a while to block the histamine receptors... longer if you had a big gush of histamines.

Take care and please keep us posted...

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hans on Apr 18th, 2015 at 1:21am
Batch, thx a lot for your time spending to help other clusterheads. would you be so kind a post a link to your updated specification including Vit B or else. Thank you

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 18th, 2015 at 4:35pm
Hey Hans,

Good question...  Go to page one of this thread and scroll down...  The latest list of supplements, doses and the basic "How To" are all there.

Take care and keep us posted when you start this regimen.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Hans on Apr 18th, 2015 at 10:13pm
i ordered all the different capsules and pills which is not that easy in Germany. i will keep you posted trying to give you some valueable details because we will monitor different parameters at least weekly. my goal beside kicking clusers ass is to link the improvements with changing parameters and to find some benchmarks.

i studied the mechanism of Clusterheadache and had a few discussions with the s c specialist in Germany. after all it is more or less dispappointing. looking forward to do something with a new perspective.

anybody ever added Melantonin 10 mg (NOT RETARDED)?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 19th, 2015 at 8:01am
Hans,

Thanks for the update you've got the supplements on order.

Regarding the availability of these supplements in Germany... it's always a shame when the MPH bean counters and bureaucrats decide what over the counter supplements you can and can't have.

A CH’er in the UK has found a source for all the needed supplements at iherb.com.  See his post at the following link for details on pricing and how to order them over the Internet:

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You might want to check on pricing as iherb.com gets aggressive with its specials and shipping...  You just need to keep orders under 4 pounds weight.

Regarding Melatonin - We have several CH'ers who have continued with their prescribed CH preventatives and Melatonin while taking the anti-inflammatory regimen with no problems noted.

There are also several CH'ers in Germany using the anti-inflammatory regimen...

There should be some posts about this regimen and possibly other sources for the needed supplements at the following link:
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Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by red ryder on Apr 20th, 2015 at 5:25pm
Update,

Batch my D3 came in at 96ng/ml, all other labs checked out normal. I tried Claritin and did not help maybe Benadryl would have been better but already was walking zombie due to no sleep. Gave in and started prednisone taper and verap at 400mg a day. Good news is since starting steroid taper no bad headaches for last 5 days and sleeping through night. Tomorrow is last day of taper. Hopefully the verap. is up to speed. I got the vit B complex going. We shall see how things work out. Fingers crossed I can tell the beast is still lurking. Vit d back to 10,000 iu daily. Thanks for all you do.      Jay

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 21st, 2015 at 12:08am
Hey Jay,

Claritin (Loratadine) is a second-generation antihistamine and much larger molecule than Benadryl, so can't get through the blood brain barrier like Benadryl to block histamine receptors in the brain...  Switch to Benadryl if possible.

10,000 IU may not be enough vitamin D3...  I'm presently taking 10,000 IU vitamin D3 in the A.M. along with a 25 mg Benadryl tablet and the same thing at night and that's keeping the beast away.

If I skip one of these doses, the beast comes a knocking...

Your 25(OH)D is fine for normal times... If you've got an allergic reaction in progress... that's not normal and may require a higher serum concentration of both vitamin D3 and 25(OH)D to keep the beast away...  particularly so if your pred taper is ending.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Tony Only on Apr 23rd, 2015 at 7:32am
Finally I'm back in the range they are able to measure here (350 nmol/l or under). Now my blood test showed 279 nmol/l. I've been pretty accurately 40 days without any vitamins and since starting count was 473 nmol/l (probably a bit higher since I used regimen couple days before I got the first results) it looks like I have been coming down around 5nmol/l per day.

I'm trying hard to figure out at what kind of dose to continue beginning from next blood test (in 3 weeks) since my levels seem to rocket high so easily.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Kurama on Apr 26th, 2015 at 12:01am
Ugh!  I win a battle here or there, but I'm still losing the beast war!  Neuro finally upped the verapamil to 360 mg last week, but won't go any higher for another week or so.  I've been on four 25 mg Benadryl per day for a week.  B-100 every other day for a week.  20,000 IU Vitamin D daily along with all the other cofactors.  Still getting hit once every other morning, which is an improvement, but not a victory.  Natural cycle should end in about two-ish weeks, so I'm trying to get this figured out before then.  Mine are spaced so far apart (two to three years between cycles) that I don't have much time to test and tinker.  Not that I'm complaining about the time between cycles, but it would be nice to find something that works when they do hit and to help with the random shadow attacks I get every few months.

I think I'm going to try a few more loading doses of D3.  Any bad juju from going up to 120 ng/ml territory?  150?  By my count, I should still be hovering in 100-110 ng/ml range.

Hope it's going better for everyone else.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Apr 26th, 2015 at 2:28pm
Kurama,

Another day or two at a loading dose of 50,000 IU vitamin D3 shouldn't cause any problems... 

Just be sure to drop back to a maintenance dose of 10,000 IU/day when you're done loading...  If you experience an up-tic in CH frequency when you drop back to 10,000 IU/day, up the maintenance dose to 15,000 IU/day for a week or two.

My 25D is running between 125 to 145 ng/mL this time of year with all the pollen.

you can also increase the Benadryl intake to one 25 mg tablet in the morning and a second 25 mg tablet 12 hours later...

That should get you through the night and next morning PF.

Take care and please keep us posted if you have a significant decrease in the frequency of your CH.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jun 3rd, 2015 at 11:33am
The link below is an interesting article by Dr. Whitaker MD titled:

Facts About Vitamin and Mineral Supplements

It's a short read and well worth the time.  It starts with the following...

"I can’t tell you how many patients have told me that when they tried talking to their doctors about using vitamin and mineral supplements, they were met with condescension, laughter or belittlement.

So how do you get your doctor to work with you and help you incorporate vitamin and mineral supplements into your daily health regimen?

Here are some of the most common stumbling blocks patients encounter when discussing supplements with their physicians—and suggestions for countering them."

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Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by thierry on Jun 3rd, 2015 at 1:36pm
Hey Batch, Hope you're well.
When i talked to my neuro 2 years ago about the D3 regimen he said "I suppose there's the placebo effect". I told him that there has been an extensive survey done of CH sufferers who have taken/are taking the D3 regimen and that it seems that it is working for 80% of sufferers, his reply was "The power of the mind can be very strong".
I haven't been to see him since. I have a much better doctor for my CH now, his name's Batch.
;)

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jun 3rd, 2015 at 8:40pm
Hey Thierry,

Thanks for the vote of confidence...  I'm still getting calls from neurologists since AAN published the abstract from our online survey of CH'ers taking this regimen and the poster presentation I made at the 2014 AAN Annual Meeting in Philadelphia, PA.

Regarding a possible placebo effect in CH medications...  The raw efficacy of 60% for a sustained pain free end point response to the anti-inflammatory regimen in preventing CH is well beyond the highest possible placebo response in CH of 14 to 43%. 

The lowest value was reported using the strict endpoint; cessation of headache attacks.  Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.

and we all know the good Dr. Goadsby is a straight shooter when it comes to CH...

I also did a little research into the above article and it appears 75% of the CH'ers surveyed in this study were episodic... 

As it is very easy for episodic CH'ers to confuse a pain free response to any CH preventative medication with end of cycle...  and given the fact that it's downright next to impossible to wish or will away CH pain... I suspect the actual placebo effect is somewhere South of the 14% listed in the study above and likely closer to 7%.

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Mike NZ on Jun 3rd, 2015 at 11:36pm

Batch wrote on Jun 3rd, 2015 at 11:33am:
"I can’t tell you how many patients have told me that when they tried talking to their doctors about using vitamin and mineral supplements, they were met with condescension, laughter or belittlement.


Not all doctors are the same. The last time I saw my headache specialist one of the first things she asked me about when discussing medications was if I was taking vitamin D3 as she had found that it was working well with her patients with both CH and migraine.

The benefits of vitamin D3 is making its way around the world.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by blacklab on Jun 4th, 2015 at 2:53am
I was, a while back, when I was getting my Blood tests done, and couldn't see my normal doctor,  was told, do you realise this Vitamin regime could only be seem to be working, because of the placebo effect !!!!  REALLY !
yes, when in cycle, I find there are things that can trigger an attack,  But in all seriousness, does anyone think a placebo effect can stave off a cluster cycle ?  some one give you a sugar capsule and miraculously your cluster headaches disappear ? mind over matter.  Just don't think the beast is dumb enough to be tricked into that sort of head space. I think as an episodic sufferer, and no that everyones different in there cycle times, but if you get hit with a cycle every three months for 5 years, I don't think any type of placebo or mind over matter pill is going to break the routine, You know yourself when something has changed, something is different within,  if you know what I mean.
colin

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Mike NZ on Jun 5th, 2015 at 3:54am
I've been thinking about this all day and have come to the conclusion that I am pretty sure that a placebo effect could impact CH. If you look at some of the common triggers for CH, like stress (high / low / changes between), being hungry, tired, etc. they all have an impact that is controlled by the brain / nervous system. So it isn't beyond the realms of possibility that a placebo effect could impact CH.

Just a simple example could be where someones CHs can be triggered by high stress. If they were given a tablet which they were told had a very high success rate against CH then it is quite likely that their stress levels will be lower which could result in CHs not being triggered.

It could make an interesting trial where people with CH were told that they were being given a tablet that was a very good preventive but it is actually a placebo, with some people getting a placebo and not being told it was, some being told it was a placebo, with others getting something like verapamil, some told it was, some told it was a placebo.

The only group who should benefit should be those getting the verapamil. However a placebo effect could result in those with verapamil but told it is a placebo getting less benefit. Plus those with the placebo but being told it wasn't benefiting more than those with a placebo and told it was.

I strongly suspect that this trial would find evidence of a placebo effect with CH, although I've no idea how large the effect is likely to be.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by shortstraw on Jun 5th, 2015 at 9:50pm
The human mind is a curious thing.

I don't think for one minute that I could stop a CH with my mind, but the mind can certainly affect it's impact.

The pain I feel from CH's is still same and hurts like hell but the impact that pain has on my psyche and my life has been reduced through education and action.

Power of the mind ?

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Sean McE on Jun 6th, 2015 at 1:27am
      Placebo effect Huh, I'll tell ya what I think of that.  Years ago, 4 or 5 episodes into this malady, every episode almost exactly 8 weeks long and I had zero tools to combat the monster with. Then I heard about Feverfew, so grasping at any straw offered, I started taking it in capsule form and lo and behold my cycle ended abruptly at 5 or 6 weeks. Finis, gone, done and done, you can't imagine how elated I was ( actually you probably can). I had the answer! I got you now you B$%#*&. When you come back I know how to handle you!

      Placebo effect?   Possibly or my cycle just happened to take an early exit. I know that now but I didn't know that then.

       Fast forward 5 or 6 months and when he came calling I was prepared. My understanding of placebos is the greater the faith, the greater the effect and trust me I had absolute confidence in my new found friend, Feverfew, so you can imagine how disappointed I was when nothing happened.
I kept at it, still nada except for getting hammered.  Never did work. And I believed in the stuff!!! Placebo effect, my A$$. I know pain when when I feel it.

       Read about oxygen here, got on it and it worked the first time and mostly every time since. (With adjustments) No placebo here.

        Read about D3 here in 2013, got on it, nothing happened and almost gave up on it but 2 and 1/2 weeks in things started to work and it killed that cycle in under 4 weeks. But I was expecting instant results and really doubted it was going to work. Placebo, my foot.  Same thing this year, in fact I remember telling my wife that I didn't think it was gonna work this time cause nothing was  happening for so long. I started checking the expiration dates on the vitamins (some of those bottles were 2 years old now), anything to explain why it wasn't working. But it finally did work, does work ---  for me, I guess it takes some time but I had lost faith there for awhile. For a placebo to work ya gotta believe in it. No placebo here either.

   I gotta go with shortstraw, we know pain when we feel it.         Sean


   P.S.  How do I know my episode didn't end early? In spite of D3 rather than because of it?  Cause in 2013 it came back a month later when I quit D3 after the first bout and this year because it hasn't really ended, I'm just pain free. I'm still getting little shadows and occasional stabs now and then. Plus, in 19 years I've never had 14 to 20 day episodes (I wish!) and don't think there's many here that have either

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jun 6th, 2015 at 2:52am
Interesting comments...  There's no question in my mind that a placebo effect exists in CH pharmaceutical and nutraceutical intervention...  The only issue Mike pointed out in his bottom line...  How big is the placebo effect for CH?

I'll side with the 14% arrived at in the study titled: Placebo response in cluster headache trials: a review... as that value was reported using the strict endpoint; cessation of headache attacks...  That said, I still have reservations with the 14%...

The two studies they used to come up with the 14% figure included episodic CH'ers...  They represent a built-in confounding factor due to confusing a favorable response, in this case a cessation of headache attacks with end of cycle.

We recognized this confounding factor and attempted to qualify and quantify its effect in the online survey questionnaire by adding the following question for episodic CH'ers who experienced a favorable response to the anti-inflammatory regimen:

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If you throw out the first and last category due to possible errors in estimating when the response occurred and in estimating the episodic cycle length, then take the remaining last quartile... you get 17% as a reasonable, ball park estimate of the number of episodic CH'ers who could have possibly confused the favorable response with end of cycle...

My rationale for going through these mental gymnastics is simple...  the end of cycle confounding factor apples to the placebo effect just as it applies to the overall efficacy of any given pharmaceutical and nutraceutical method of CH intervention for episodic CH'ers...

Sooo... if you've followed me so far...  the 14% placebo effect in the above study is likely high...  If we use the ballpark estimate for the confounding factor of 17%, the likely placebo effect is somewhere between 11% and 12% for episodic CH'ers.

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by blacklab on Jun 7th, 2015 at 4:41am

Mike NZ wrote on Jun 5th, 2015 at 3:54am:
I've been thinking about this all day and have come to the conclusion that I am pretty sure that a placebo effect could impact CH. If you look at some of the common triggers for CH, like stress (high / low / changes between), being hungry, tired, etc. they all have an impact that is controlled by the brain / nervous system. So it isn't beyond the realms of possibility that a placebo effect could impact CH.

Just a simple example could be where someones CHs can be triggered by high stress. If they were given a tablet which they were told had a very high success rate against CH then it is quite likely that their stress levels will be lower which could result in CHs not being triggered.

It could make an interesting trial where people with CH were told that they were being given a tablet that was a very good preventive but it is actually a placebo, with some people getting a placebo and not being told it was, some being told it was a placebo, with others getting something like verapamil, some told it was, some told it was a placebo.

The only group who should benefit should be those getting the verapamil. However a placebo effect could result in those with verapamil but told it is a placebo getting less benefit. Plus those with the placebo but being told it wasn't benefiting more than those with a placebo and told it was.

I strongly suspect that this trial would find evidence of a placebo effect with CH, although I've no idea how large the effect is likely to be.

I agree Mike with all of your above comments.
I think that ( as stated)  stress, food, and for me, lack of sleep is a huge trigger. recently went on holiday and one flight was delayed for 8 hours, so ended up being awake for nearly 24 hours, my sleep routine was interrupted and it immediately started my clusters.
But, I think where I initially and others were coming from, was taking a placebo during a full on cycle, one not bought on by stress or sleep, which for me, don't last very long and aren't as intense as when I'm in a full on cycle, and don't last for more than a few days, in this instance a placebo I feel would be useless !
certainly taking a placebo, as a replacement for let say verapamil, or another preventative, I also don't believe that mind over matter will halt an episodic cluster sufferer from going into cycle,( not bought on by stress etc) that would indicate to me to being a cure and we all know this disease is definitely not one created in the mind.
But yes, where certain factors trigger an abnormal cluster attack, ( one out of normal cycle time ) then I definitely believe in the placebo effect.
I guess too, if we knew what  the ultimate cause was, that firstly gives us this affliction, we would be a lot more advanced in treatments and methods to combat it.
I've managed to realise my triggers and manage them successfully, excessive hot weather for me will trigger a hit, sleep as mentioned, dehydration and acohol, by managing these factors, I didn't get hit with any more than shadows outside my normal 3-4 monthly cycle, and thank heavens for the Vit d regime as I've ( touch wood ) missed two full cycles so far this year.
I think that our clusters are always with us, just waiting for some one to wake it up and give us a reminder !
but our regular episodic cycles, I think that's a different beast, and one that doesn't doesn't get fooled by sugar pills.
but an interesting subject and one that I'm sure will make people think about things.
regards
colin

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Mike NZ on Jun 7th, 2015 at 3:49pm
The only way to understand the role of placebo in CH is through trials. There is almost certainly the likelihood of it appearing, so the only question is on the degree.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by tangerinearmy on Jun 9th, 2015 at 6:39am
finally managed to get GP to test vit D and guess what im low real low.
im 10.5 nmol/L

i havnt been hit for 18 months though and im guessing thats because of busting :D
so i can now start vit d regimn and hopefully get another 18 months.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by thierry on Jun 9th, 2015 at 8:54am
Hey Tangerinearmy, give me the D3 regimen anytime before busting. Although i do "bust" in a recreational way once -sometimes twice- a year.  ;)
Your D3 level is alarmingly low. Batch recommends taking 600000iu D3 over the 1st month before leveling at 10000iu/day, of course that needs to be taken with the other elements of the regimen with which you are probably familiar as you have been around this site for a while.
All the best

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jun 9th, 2015 at 1:01pm
Hey Tangerinearmy,

Thierry is spot on...  With a 25(OH)D serum concentration that low, you're at risk for several other medical conditions besides CH...  Peruse the following link for a very long list of health problems linked to a low vitamin D3 status...

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That list should be more than ample motivation for starting the anti-inflammatory regimen with the vitamin D3 loading schedule...

The vitamin D3 loading instructions are a third of the way down page 1 of the following link:

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The 25(OH)D response to dose curves for 10,000 IU/day vitamin D3 are illustrated in the following graphic...  Starting the loading schedule cuts the time to one fifth of the time to reach 80 ng/mL at 10,000 IU/day.

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I've been tracking several CH'ers over on Clusterbuster and have yet to hear of any problems from CH'ers busting and taking the anti-inflammatory regimen at the same time.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Jun 9th, 2015 at 2:41pm
Tangerinearmy,

I thought I was low at 33 nmol/L when I started the D3 and it has changed my life. My Doctor too was shocked at how low I was.

Listen to Batch & Thierry.

Good luck.

Peter.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by tangerinearmy on Jun 9th, 2015 at 3:33pm
Thanks
Much appreciated

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by MiRose on Jun 10th, 2015 at 5:19pm
There are a great number of reasons why there's no way this vitamin D regimen is a placebo effect.

I personally used 8 different regimens/plans to stop cluster headaches.  The first 7 did absolutely nothing.  The 8th one, the batch vitamin D regimen, took three days before my headaches went down 75%!   After 5 weeks, gone 95%!  100% most days.

This wasn't a positive thinking or hoping placebo because I thought the vitamin d regimen would not work.  I expected it to do nothing.  This is why I waited so long to even try it. 

And, what about people that have tried everything and nothing worked for 30 years!!!  But then this works???  It's just luck that the 1,000th thing they tried works and its all just the power of the mind.  That doesn't even make any sense!  If this was true, there would be MANY MANY MANY placebo cures with good results.  There isn't!!!  You have a bunch of cures with 10-20% success rates and this one is at 70%.  It is what it is....

Placebo effect is when someone is given a drug, they think, but its fake.  They believe they are given a real drug and their body sometimes takes on changes, even if its a fake pill.  I didn't believe the vitamin D would work at all, so there was no power of faith going on with me.

Anyone who even mentions this is all a placebo effect has never had a cluster headache.  It happens the EXACT same time, every day, same symptoms for weeks.  You could NEVER take a fake pill (a sugar pill), believe its a cure for cluster headaches, then it cuts down 75% in three days.  It's not going to happen.  You can take a different vitamin every day for weeks and believe its a cure, and its NOT going to stop these headaches.  Not until you take D3 with fish oil, calcium, magnesium, etc.

Also, myself and others have mentioned that when the vitamin D is reduced, the headaches start to return.  If I skip three days I get a little flair up until i start taking it again.  Then it stops.  This is too coincidental to just be me thinking something will or will not work. 

Lastly, why didn't the other 7 regimens I tried, that I believed would cure me, do nothing???  But the vitamin D regimen, that has a high % of success, it works for me and many others.  So, it's all a coincidence for us that this works and nothing else does?  The odds are too great against that. 

Certain drugs or vitamins ARE cures for ailments.  Some noteworthy scientist has to "say its a cure" before its official.  Penicillin was considered snake oil for many years, but it was really a cure.  Vitamin D regimen is really a cure for CH too.

But why isn't it 100% cure for everyone.  Well, A lot of CH sufferers are very heavy drinkers.  If your liver is totally shot, or it has to process huge amounts of liquor along with vitamins, your body will not be able to absorb the vitamins the same way a healthy non-drinkers liver would.  This could be a reason why it doesnt work for some people.

Thanks for the regimen Batch!!!  I had to suffer with this for only 5 weeks thanks to you!  That was bad.  But I've ready about some dealing with this for 30 years!!!!!

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Mjedwards409 on Jun 10th, 2015 at 5:43pm

MiRose wrote on Jun 10th, 2015 at 5:19pm:
There are a great number of reasons why there's no way this vitamin D regimen is a placebo effect.

I personally used 8 different regimens/plans to stop cluster headaches.  The first 7 did absolutely nothing.  The 8th one, the batch vitamin D regimen, took three days before my headaches went down 75%!   After 5 weeks, gone 95%!  100% most days.

This wasn't a positive thinking or hoping placebo because I thought the vitamin d regimen would not work.  I expected it to do nothing.  This is why I waited so long to even try it. 

And, what about people that have tried everything and nothing worked for 30 years!!!  But then this works???  It's just luck that the 1,000th thing they tried works and its all just the power of the mind.  That doesn't even make any sense!  If this was true, there would be MANY MANY MANY placebo cures with good results.  There isn't!!!  You have a bunch of cures with 10-20% success rates and this one is at 70%.  It is what it is....

Placebo effect is when someone is given a drug, they think, but its fake.  They believe they are given a real drug and their body sometimes takes on changes, even if its a fake pill.  I didn't believe the vitamin D would work at all, so there was no power of faith going on with me.

Anyone who even mentions this is all a placebo effect has never had a cluster headache.  It happens the EXACT same time, every day, same symptoms for weeks.  You could NEVER take a fake pill (a sugar pill), believe its a cure for cluster headaches, then it cuts down 75% in three days.  It's not going to happen.  You can take a different vitamin every day for weeks and believe its a cure, and its NOT going to stop these headaches.  Not until you take D3 with fish oil, calcium, magnesium, etc.

Also, myself and others have mentioned that when the vitamin D is reduced, the headaches start to return.  If I skip three days I get a little flair up until i start taking it again.  Then it stops.  This is too coincidental to just be me thinking something will or will not work. 

Lastly, why didn't the other 7 regimens I tried, that I believed would cure me, do nothing???  But the vitamin D regimen, that has a high % of success, it works for me and many others.  So, it's all a coincidence for us that this works and nothing else does?  The odds are too great against that. 

Certain drugs or vitamins ARE cures for ailments.  Some noteworthy scientist has to "say its a cure" before its official.  Penicillin was considered snake oil for many years, but it was really a cure.  Vitamin D regimen is really a cure for CH too.

But why isn't it 100% cure for everyone.  Well, A lot of CH sufferers are very heavy drinkers.  If your liver is totally shot, or it has to process huge amounts of liquor along with vitamins, your body will not be able to absorb the vitamins the same way a healthy non-drinkers liver would.  This could be a reason why it doesnt work for some people.

Thanks for the regimen Batch!!!  I had to suffer with this for only 5 weeks thanks to you!  That was bad.  But I've ready about some dealing with this for 30 years!!!!!


Awesome to hear you only had to experience it for 5 weeks total!  The beast returned for my wife this week.  Only the second cycle of her lifetime.  The D3 regimen kicked it the first time, but she stopped during the fall.  Hoping this will be a lifelong thing starting today and she will go through life thinking, "wow, those two clusters sucked.  Glad I will never go through that again!"

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jun 11th, 2015 at 10:01am
Hey MiRose,

Welcome to CH.com.  Thank you for the kind words and for the wonderful back brief on your experience with the anti-inflammatory regimen.

Your last question, "But why isn't it 100% cure for everyone?" has been a motivating factor for me since the early days of this regimen in 2011 when the raw efficacy of this regimen in preventing CH, based on posted comments, was around 70%.

We've learned a lot about this regimen over the last four years and the most recent findings are proving to be significant game changers for the non-responders to this regimen.

The first finding came from Dr. Stasha Gominak, MD.  She's a neurologist in Tyler TX who developed a similar vitamin D3 regimen for her patients with sleep, chronic pain, and headache disorders over six years ago. 

Dr. Gominak recommends the same vitamin D3 dose and cofactors as used in the anti-inflammatory regimen, but adds a lab test for vitamin B12 as an indicator of overall status of the seven B vitamins and she adds a 3-month course of vitamin B 50.  I've incorporated her suggestions in the anti-inflammatory regimen as of April of 2014.

One of the latest finding involves the role of allergic reactions in CH and their impact on the efficacy of the anti-inflammatory regimen as a CH preventative.  It turns out that allergic reactions, primarily to pollen, result in a flood of histamine that triggers the obvious signs of an allergy.  What is significant is these allergic reactions are also occurring in the brain where they cannot be seen... except for their impact on the anti-inflammatory regimen...  in short, making it less effective or not effective at all in preventing CH.

The breakthrough came in an attempt to treat these allergies with Benadryl, (Diphenhydramine).  Benadryl is a first-generation antihistamine that passes through the blood brain barrier to block histamine receptors in brain cells.  Second- and third-generation antihistamines cannot do this.

I started using Benadryl last March when the Alder and Big Leaf Maple pollen was blowing around my home like a dust storm.  Up until that point I had my chronic CH well under control with the anti-inflammatory regimen at a dose of 10,000 IU/day vitamin D3.

All that changed in March.  Within 6 hours of the pollen fall, I noted a clear allergic reaction, 12 hours after the pollen fall started, I got hit with an eye watering KIP-6 CH... 

My usual response to a burn-through or break-through hit is to increase the vitamin D3 intake...  I did that and was up to 50,000 IU/day vitamin D3 plus extra magnesium, but that wasn't working... I was still getting whacked every two hours.

That's when the clue bird made a low pass and my Good Idea light came on bright and flashing...  "TREAT THE ALLERGY !!!"

After a little research, I selected Benadryl and a 25 mg tablet four times a day.  24 hours after starting the Benadryl, I was again CH pain free.  I've sense found that two tablets a day, (one every 12 hours) is more than sufficient to keep me pain free while taking the anti-inflammatory regimen.  I also found I could lower the vitamin D3 dose to 15,000 IU/day and still remain pain free.

I've tested this three times over the last two months by stopping the Benadryl...  As expected, if the pollen was still present, my CH returned, then stopped when I restarted the Benadryl.  As you noted... that helps rule out any placebo effect.

One of the presentations at the 2014 American Academy of Neurology Annual Meeting in Philadelphia was on the human microbiome...  essentially the friendly colonies of flora and fauna in the GI tract, their role in the immune system, and how to keep them happy and healthy.   

The researchers found they could reduce flare-ups in remitting recurring multiple sclerosis (RRMS) patients by administering probiotics...

This got me thinking why wouldn't this work for CH as well.  That led to some additional reading that resulted in the following:

Treating cluster headache (CH) patients with the anti-inflammatory regimen to prevent their CH represents a paradigm shift from the conventional Standards of Care recommended treatments for CH.   The standards of care recommended treatments address the neurological symptoms of CH as a trigeminal autonomic cephalalgia (TAC) with neurogenic origins in the hypothalamus and manifestations in the trigeminal nerves.  Acute treatments include oxygen therapy inhalation with non-rebreathing mask at flow rates of 15 to 25 liters/minute, followed by Sumatriptan Succinate (Imitrex).  Subcutaneous injections of Imitrex are effective in aborting CH in 5 to 10 minutes.  Imitrex nasal spray can be effective in 10 to 20 minutes.  Imitrex tablets are usually effective in 20 to 30 minutes.  Typical prophylactic treatments include a prednisone taper as a transitional preventative while titrating up with the longer-term preventative verapamil, a calcium channel blocker and in some cases, lithium.  Greater Occipital Nerve (GON) blocks and Sphenopalatine Ganglion (SPG) blocks have also proven to effective preventative treatments.

The anti-inflammatory regimen with vitamin D3 is a completely different treatment modality that addresses vitamin and mineral deficiencies as an underlying cause or contributor of CH.  That > 82% of over 600 CH’ers respond favorably to a daily regimen of vitamin D3, Omega-3 fatty acids and the vitamin D3 cofactors that support vitamin D3 pharmacokinetics, suggests CH is a genetotrophic disease. 

In 1956 Dr. Roger J. Williams, PhD., the biochemist who discovered the B-vitamin pantothenic acid, coined the term "genetotrophic disease" to describe diseases which resulted from genetically determined nutritional metabolic needs not being met by the individual and which result in poor gene expression. Motulsky has recently argued that many of the common degenerative diseases are the result of the imbalance nutritional intake with genetically determined needs for good health.

When you stop and think about it, there are a number of diseases that meet the definition of a genetotrophic disease such as Scurvy - lack of vitamin C, Rickets - lack of vitamin D3, Osteoporosis - lack of vitamin D3, Berberi - lack of vitamin B1 (thiamine)...

What is also clear, is the CH disorder is also associated with neurogenic inflammation in and around the trigeminal nerves and very possibly elsewhere throughout the brain.  As inflammation is the result of an immune system response to insult from a number of sources, CH could also be classified as a chronic neuroimmune disease.

Once you make that distinction,  CH falls in with more than 80 other autoimmune diseases like Multiple Sclerosis, Guillain-Barre syndrome, Rheumatoid arthritis, the irritable bowel diseases: Crohn’s, Ulcerative Colitis, Celiac and IBS.  The list goes on… 

That makes CH very likely an autoimmune disease with neurological manifestations that can be treated and prevented by genetic expression made possible with vitamin D3.

Accordingly, there is no question in my mind that the success of the anti-inflammatory regimen with vitamin D3 as a CH preventative represents an "out of the box" new insight into the pathogenesis of CH...  It just needs to be reverse engineered to look at causality.

I'm also firmly convinced that the mechanism of action for this regimen lies with the autocrine/paracrine signaling role vitamin D3 plays at the genetic level triggering genetic expression. 

This is where a 1,25(OH)2D3 molecule combines with one of the retinoid molecules (vitamin A), to form a dimer bridge that then attaches one end to a vitamin D receptor (VDR) and the other to a Retinoid X Receptor (RXR) in a vitamin D response element (VDRE) on a candidate gene.

When this happens, Dr. Robert Heaney explains it best by saying, "vitamin D3 unlocks the cells genetic library of instructions and the cell starts executing them" i.e., genetic expression.

During genetic expression, the cell starts performing one or more of the following activities:  it replicates, differentiates, starts producing or inhibiting the production of peptides and other active chemicals that signal or control other biological processes within the cell or nearby or the cell dies.

Research in this area reveals several studies that indicate there are vitamin D3 receptors and the enzymes needed to hydroxylate vitamin D3 to 25(OH)D and 1,25(OH)2D3 found in brain cells throughout the brain.  What is particularly interesting is the highest concentrations of these genetic expression precursors are found in the hypothalamus and trigeminal nerves…  With the hypothalamus involved, we're talking the neurogenic headwaters of CH pathogenesis.

If we follow this confluence of findings and add in calcitonin gene-related peptide (CGRP), which several studies have found is produced in the trigeminal ganglia and elevated in the bloodstream during the pain phase of CH and migraine... we have a possible trigger. 

Adding one more factoid that vitamin D3 has been shown to down regulate/suppress the production of CGRP, (quite possibly through genetic expression), we have a viable candidate mechanism of action for vitamin D3's capacity to prevent CH.

I say possible candidate, as a 2010 study identified 2776 genomic positions occupied by the VDR and 229 genes with significant changes in expression in response to vitamin D3...  Accordingly, there are thousands of other candidates for genetic expression made possible by vitamin D3... and any one or more of them could easily play a role in a mechanism of action inhibiting CH pathogenesis...

And so ends a long winded update... with more info on CH to ponder...

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Jun 15th, 2015 at 7:07am
Hey Batch,
Over the last 2 weeks I've been getting hit with K6 - K8's every couple of hours and a decent night's sleep is a distant memory.

I have not missed a single day on the D3 regimen since I started and it all seemed to be going well until now. I have been taking 20,000 D3 daily and took the B Complex for 3 months ( back on it now over the last few days).

In addition I have been taking 1 Benadryl (50mg) at night. I dare not take them during the day due to the drowsey feeling they cause.

Any ideas why the last 2 weeks have been so rough? I have been chronic for the last two and half years ans so get mild shadows or K2 - K4's every day anyway. Is it possible to have a cycle within a cycle?

Incidentally, you may remember that my better half, Christine, broke her leg in March and on your kind advice I started her on the Regimen. She says she feels great on it and her leg has healed very well. The surgeon is very please with her recovery.

Anyway, any advice would be most welcome.

Kind regards,

Peter.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Batch on Jun 15th, 2015 at 3:13pm
Peter,

Good on you for getting your wife started on this regimen...

I've been on travel for the last week in Northern VA, and Lewes, DE and am having the same problem...  Pollen is still flying in this neck of the woods... 

As a result, I'm also taking 50 mg/day Benadryl, 25 mg every 12 hours...  I've also had to bump my vitamin D3 intake to 50,000 IU/day in order to stay pain free...  I take 25,000 IU in the a.m. and 25,000 IU in the evening along with all the rest of the supplements prior to bed.

There are enough studies available that indicate a couple weeks at 50,000 IU/day vitamin D3 to get the edge on any allergic reaction is very safe...  If your 25(OH)D was already at 80 ng/mL, a couple weeks at a vitamin D3 intake of 50,000 IU/day will elevate it up to around 150 ng/mL... but it will drop as soon as you return to your maintenance dose.

I'd also suggest you pop the vitamin D3 liquid softgels between your back teeth and swirl the contents around your mouth, cheeks, and under the tongue without swallowing for at least 5 minutes.  This will get most of the vitamin D3 directly into your blood stream and bypass the GI tract where absorption may be a problem.

The contents taste slightly sweet and gel caps turn into a gummy bear consistency then dissolve.

My rapid response (less than 2 hours) to this method and dose of vitamin D3 provides an interesting piece of data, and that is it may be the vitamin D3 entering target nerve cells in the hypothalamus and trigeminal ganglia that produces the preventative effect in stead of just the first vitamin D3 metabolite, 25(OH)D.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by blacklab on Jun 16th, 2015 at 3:53am
Hi peter510,
                   sorry to hear your getting hit at the minute.
I should look over your posts for the answer, But, you say you were chronic ?  how long were you taking the regime, and how long were you getting a benefit from it before the last 2 weeks of worse hits came along ?
did you get a definite period of sorts of definite relief ?
I only ask out of interest, I have been on the regime for about 2 years with slow results, but the last 6-8 months for me have been great, I can feel when the cycle comes and apart from some heavy shadows and maybe the odd sneak thru hit, I haven't had my last 3, full on 3 week, 5 hits a day ( kip 8 plus) cycles. I've also found taking a really good probiotic daily from the fridge has really made a difference for me, which I suspect, I had an absorption issue, even though my blood tests showed I was at a good level.
Anyways, just interested in your experience..
good luck with breaking this cycle, sooner than later too
regards
colin

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Jun 16th, 2015 at 6:57am
Colin,
I've been taking D3 since January and I have been getting good results from about early March. I define good results as shadows and 1/2 K 3/4's a day, which is very manageable. Indeed, an energy drink gets the job done most of the time.

The weather here has been pretty good over the last couple of weeks and that does mean high pollen counts, which is why I take the Benadryl.

My last blood test was at 175 nmol/L which is not too bad.

I have never tried a daily probiotic, but will give it a go.

Best regards,

Peter.

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by blacklab on Jun 17th, 2015 at 4:14am
Hi Peter,  Thanks for that.
  Its interesting, when a definite impact is made by the regime, especially one being chronic. Some times its hard to know when your episodic just whats working or not if you know what I mean. So being chronic, the regime has definitely made an impact !
Ive struggled with it, but Finally it seems to having an effect. Pryor to this last 6-8 months, it still made an impact, it reduced the pain level dramatically. So Its been a case of working with batch and "tweeking things" for me.
The probiotic, was in direct relation to me not handling to much magnesium and probably the fish oil too, but I definitely was able to tolerate things better on a daily probiotic and definitely would have allowed me to then properly absorb everything.  Now the talk is with pollen spores !  Of which, I do suffer from during that time of year, so there's always something to add and tweek as we go,  sure beats drugs !
Peter, I currently have found that 200-220nmol is my sweet spot and every 6 monthly blood test has shown that my serum levels are perfect !  so don't be afraid of titrating up if necessary, I even got to 250nmol at one stage.
regular blood tests is the key !!!
So I sit here at the minute, knowing that this is my time for a cycle, I can feel it there ( for the last week) but its not breaking out ! very mild shadows which a red bull kills off, and touch wood nothing else. This will be the 3rd cycle I've skipped in a row (normally every 3 or so months like clock work)   
good luck with your current issues, hope to just withers away !
regards
colin

Title: Re: Anti-Inflammatory Regimen Update and Survey
Post by Peter510 on Jun 17th, 2015 at 6:40am
Hey Colin,

Thanks for the note. On Batch's advice I upped my D3 to 50,000 per day, 30,000 of which I melt under the tongue, and at day 3 it seems to have chased the Beast away. Although I can still feel it trying to break through.

Onwards and upwards.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by krmacchi on Jul 14th, 2015 at 10:55pm
Please excuse my ignorance...a lot of these measurements and such have me very confused.  I should also say I don't have insurance and can't afford to do any of the follow up tests everyone is speaking of. 

What I have to say is this;  THANK YOU To "Batch"! 

I'm 36 years old and have had Clusters since about 21.  For the first few years, no doctor would diagnose me with them even though they were super classic Clusters.  I would only get them while I slept-typically 2-3 hours after I would fall asleep.  I would wake up with a full blown CH.  The pain so terrible that I would grind my head on anything hard and cool that I could find.  My episodes would ALWAYS start with a drastic change in weather-Since I  live in Michigan, that made things hard to predict.  I  always had the faucet-like nose on only which side the CH was happening on, They lasted 3-8 weeks, only while I slept and always only one side of my head (behind the eye).  After seeing many doctors I finally found one that talked to me for 5 minutes and said "You have Cluster Headaches".  I was so happy for someone to recognize that there WAS a name for what I was experiencing! I eventually saw a neurologist that prescribed me Verapamil & Prednisone.  I was so happy that that combination did bring my episode to a halt.  I didn't love the weight gain or the long term effects of either of those medications-but it worked. 

I had about 3 years with with no attacks.  But they of course came back and have gotten stranger.  I have been suffering from this current episode for longer than ever and they've been more frequent.  I completed 12 weeks on my right side.  Extremely intense, much more frequent (not just at night anymore) about 4+ per day. Randomly they stopped for 2 weeks and then started again on the opposite side :( Whenever they switch sides, it's supper depressing because they always stay for equal times-which means 12 more weeks.  Now the nasal drama is present, but not faucet like but in the last few years my eyelid on the CH side would completely swell shut.  The pain of all this is more than anyone should bare, but the anxiety, stress and depression is almost as bad.  When I only got them in the middle of my sleep, I would try my hardest to stay awake ignorantly trying to avoid them.  As a single mom  and someone who has always worked a minimum of 6 days a week...all of this really took a toll.  Those of us without insurance know how much any migraine medication that even has a slight chance of helping can cost. 

This past Friday I decided to go back online and search for help.  CH's hurt my mental health, family life, job and basically any relationship or aspect of my life.  At this point I'm 2 weeks into my left side switch.  On Saturday I purchased all the vitamins suggest and took all of them.  There was so much info and technical measurements and such that I really wasn't sure if I was supposed to take them all or start with some....but I figured they're vitamins, not illegal drugs and at this point, I had nothing to lose.  This is what I started taking, all at once-4 days ago:

10,000 IU of D3
630mg Calcium Citrate W/500IU of D3
400mg of Magnesium
1200mg of Fish Oil w/360mg of Omega-3
One a Day Womens 50+ which provide me with the needed:
3500IU of Vitamin A
20mcg on Vitamin K
24mg of Zinc
And additional Vitamins not suggested in the "Batch"
regimen.

I went with the One a Day Womens 50+ even though I'm only 36 because it had a larger dose of Vitamin A and a few other key nutrients.

I don't know if it's God, a coincidence or just "Batch" but my Clusters haven't been less painful or less frequent...

They've been non-existent. 4 days CH free and tonight will make 4 nights.

Is this really possible?  I don't want to get my hopes up but how can I not?

Thank God!  Thank Batch!  Thank God for creating Batch!   :)

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 17th, 2015 at 9:53am
Hey Krmacchi,

Thank you for the very kind words...  Yes, this regimen can work that fast...  and I'm so happy it has worked that fast for you.

The latest response time data harvested from the online survey of CH'ers taking this regimen is illustrated in the following graphic.

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What's important now is to understand why this has happened and what to do next. 

For starters, plan on a visit with your PCP for a lab test of your 25(OH)D serum concentration after at least a month on this regimen and one more test after 6 months.  It's always a good idea to keep your PCP informed.  Your 25(OH)D lab results should plot out on the top line in the chart below for a daily intake of 10,000 IU/day vitamin D3.

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Second our bodies, given the opportunity, will consume vitamin D3 and its metabolites at a rate equivalent to an intake of 3,000 to 5,000 I.U. vitamin D3 a day.  Accordingly, as you're an episodic CH'er, it's wise to stay on this regimen year round for a few good reasons. 

This regimen is not a cure.  You still have CH.  However, if you do stay on this regimen year round, your next cycle will likely be a non-event... and you'll skate through the usual cycle pain free. 

What's equally important are all the other health benefits of staying on this regimen.  That means getting kids on this regimen as well.  A good dose of vitamin D3 for kids is 50 IU per pound of body weight and the other cofactors at the RDA for their age group.

You can find the RDAs for each supplement by age group at the Linus Pauling Institute Micronutrient Information Center at OSU at the following web site.

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Finally, when you do get the lab test for your 25(OH)D, please take five minutes and take the online survey listed in this thread.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Nicolás on Jul 20th, 2015 at 5:20pm
Dear friends of Clusterville:

I am episodic CH (first right side, and later also left side, both independent from each other), 34 years old, diagnosed at my 28, the first attack I remember was when I was 24, and I am almost sure I had attacks at least since I was 20.

In October 2012 I got the worst episode I ever had, and then I found this great site, where I found the advices of our friend Batch and the Anti-Inflammatory regimen.

I got the vitamins as soon as I could from Internet (I live in Chile, where you find no more than 400 IU of VitD3 OTC), and in no more than three days after taking VitD3 and some of its cofactors I got a relief from my episode, and a few days later the beast had gone away.

Since then, no more than one episode a year, with just mild headaches, aborted with O2 (anyway I keep renting my cylinder of O2 at home).

I filled the survey after 30 days in the regimen, and I was sure I wrote a message in the other thread of this forum (123 days PF and I think I know why) telling my experience many months later, but I am unable to find it now. Perhaps it got deleted by some reason...

And everything went fine until four weeks ago, when I got ChickenPox (yes, at my 34).

A summary:

  • June 17: I got a strong shadow on left side.
  • Between June 18 and June 29, some shadows and two mild night attacks (left side).
  • June 28: Got loading dose of 50,000 IU of VitD3. Daily intake of 20,000 IU of VitD3 after that.
  • June 30: Diagnosed with ChickenPox.
  • Between July 1 and July 10, PF days and nights, just recovering from ChickenPox.
  • Taking Aciclovir (antiviral) and Desloratadine (antihistamine).
  • Then... July 10, and the beast stroke back from the right side, always at night (1 hour after getting asleep), with the worst episode since October 2012.
  • Since July 10, got hit each and every night (exception in one night only), with headaches between Kip 6 to Kip 8.
  • O2 as abortive after 5 minutes, when not effective, repeated after some minutes, then always effective.
  • Headaches return after 60 to 120 minutes, only gone away to the next night after taking Eletriptan or Naratriptan.
  • As of now, still with night attacks.

I made some lab test for 25(OH) after getting hit again:

  • June 27: 102.4 ng/mL
  • July 17: 114 ng/mL

These are the daily components of my regimen:

  • VitD3: 20,000 IU
  • Magnesium (citrate/oxide): 500 mg
  • Omega3: 360 mg EPA; 240 mg DHA
  • VitK2: 90 mcg menaquinone-7.

Dropped (all of them in one pill):

  • Calcium (carbonate): 1,000 mg
  • Magnesium (oxide): 400 mg
  • Zinc (oxide): 15 mg

I dropped the Calcium, following an advice from Batch given to another Clusterer many weeks ago. I hope I got it well understood.

I am trying to alkalinize my diet, since two days ago, still with no avail.

Batch, could you give me some advice, anything you think I am doing wrong or missing. I am almost sure the ChickenPox is the one to blame for this new episode, despite the high levels of 25(OH).

I want to say a big Thanks to all of you, who have built a tremendous community of people, whose help gets far far away, even here in South America. It is terrible not knowing a clear cause for this condition, but having the Anti-Inflammatory regimen has been a huge relief for me, and for so many others.

Every MD I see (neuro or from other fields), I talk to him/her about the regimen. Some of them say they consider it interesting, others just ignore it. Fortunately, the neuro I see is specialist in Multiple Sclerosis, that also has a overdose of VitD3 as some of its new treatments, so when I told her about our regimen, she gave me all the support I needed.

Batch, thanks again, and I hope you have something to tell me about this new episode.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 20th, 2015 at 8:32pm
Nicolás,

Thanks for the update and sorry the beast decided to make an encore...  If you connect the dots, your bout with ChickenPox was the likely invitation for the beast to jump ugly on you.

Infections of any kind, viral or bacterial, put a load on our immune systems and ChickenPox is no exception.  Although your 25(OH)D is clearly in the green zone there are a few things you need to try. 

Vitamin B 50 for one...  Vitamin B 50 contains 50 mg each of the seven B vitamins plus 400 mg Folic Acid...  A three-month course of vitamin B 50 will take care of any B vitamin deficiencies...  After that, try to order the Kirkland brand of Mature Multi...  It's formulated with most of the vitamin D3 cofactors and enough of the B vitamins to prevent any deficiencies.

Second, pick up some Benadryl (Diphenhydramine).  It's a first-generation anti-histamine that passes through the blood brain barrier to block histamine receptors...  Second- and third-generation antihistamines cannot do this.

The rationale for Benadryl is simple...  Allergic reactions from just about any source trigger a flood of histamines that make just about any CH preventative ineffective...  Allergic reactions can also be sub-clinical...  i.e., no obvious or outward symptoms...  I'd start with two 25 mg Benadryl tablets a day, one tablet every 12 hours.

Although your 25(OH)D is above the normal reference range of 30 to 100 ng/mL, it is by no means excessive or high...  RRMS patients push their 25(OH)D serum concentrations up to 140 or 150 ng/mL on a routine basis  by taking 40,000 IU/day vitamin D3 for up to a month to six weeks at a time before tapering back down to 15,000 to 20,000 IU/day vitamin D3.

If you decide to go this route, talk with the neurologist who also treats MS patients... Ask for the lab test of your 25(OH)D, serum calcium, and Parathyroid Hormone (PTH) after a month of higher vitamin D3 doses... 

Your serum calcium should remain within its normal reference range and your PTH will be depressed... This is a normal control function of calcium homeostasis as the parathyroids sense higher 25(OH)D serum concentrations so slow PTH production to prevent your body from increasing serum calcium above the normal reference range.

The next thing to add to your daily regimen is vitamin C.  I take a 1000 mg tablet of vitamin C four to five times a day at the first sign of a cold or infection...  Vitamin C helps the immune system fight off clingon infections...

Finally, as most of the immune system resides in the gut hosted by friendly colonies of microbiota...   also called the human microbiome...   I'd start a course of a good microbiotic and continue taking it until the bottle is completely gone. 

The vitamin B 50 will also help culture friendly colonies in the GI tract...  Eating fresh yogurt, goat or sheep cheese, pickled veggies like sauerkraut, kimchi and pickles will also help feed and culture a friendly microbiome.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by CHaStever on Jul 21st, 2015 at 2:16am
Hi all, a little update on my experience with D3 so far.

My cycle started on June 5th and built up over a few days to where I was getting hit 3-4 times a night, about an hour after going to bed, then every couple/few hours through the night, with some hits also coming between 7-10:00 p.m.. The worst attacks came about 7-10 days later with hits in the KIP8,9,10 range. It wasn't until 6/17 that I finally got in to the doc for some Rx relief (O2, Verapamil, Sumatriptan nasals). The O2 was the biggest relief, Verap I'm not sure about since it was only 240 mg 1x / day, and the Sumatriptan I've only used once... mainly rely on O2.

So I decided to give the D3 regimen a go. Started it on Fri. June 26th. That Saturday was the first night of uninterrupted sleep I had in almost three weeks. I was stoked... WOW, this is really working. Well, that was just one PF night. Sunday we drove 6 hrs. to the U.P. of Michigan and that evening I had a beer... the first in over a week... well 6:00 p.m. I felt it coming on... only a KIP 2-3, and it was aborted in less than 5 mins. with O2. I got hit two more times that night after going to bed but again they were only KIP 2-3's and aborted in less than 5 minutes with O2. Monday and Tuesday were PFDN's, Wednesday night I had 1 cocktail and got hit twice during the night, but again only KIP 2-3's easily aborted. Thursday and Friday were PF, Saturday being 4th of July I thought I'd try the beer test again and remained PF. Sunday, a couple beers and a couple cocktails around the campfire and still PF. Monday, Tuesday, Wednesday PF, except some light shadows. Wednesday night got home, had a few cocktails after the long drive and got attacked twice that night, but still only in the KIP 2-4 range. Thursday and Friday were again PFDN's. Saturday night got hit a little harder, KIP5 or 6. Now I've only been getting hit once a night, usually between 9-11 p.m., and only KIP 2-4, easily aborted in less than 5 minutes. Last Tuesday was a weird one... 10:30 felt it coming so started the O2. It was only a KIP 2-3 but after 10-15 mins. on the O2 it was still hangin' on so I slammed a 16 oz. Java Monster and another 7 or 8 mins. on O2 finally aborted it. Last night was the first time in a week and a half that I got attacked after going to bed, 1:45 a.m..

So that's my story and I'm stickin' to it. Sorry it was the loooong version.

So my thoughts are that the regimen definitely is helping... reducing the frequency, intensity and duration of my CH.
THANK YOU BATCH!!!
My problem is I like beer... and my evening cocktails... and I think the alcohol has probably interfered with my livers ability to properly process the vitamins. At least that's my theory. And that's why I'm giving up the alcohol again, at least for a while.
I also know it's been talked about taking Benadryl to alleviate possible underlying allergies but I'm reluctant to take it because I think it may irritate my urinary tract.

Well this has gotten long winded and it's getting late.

I'm thinking I will have to order one of the D3 blood spot test kits and in a few weeks will provide another update and take the survey, if that's still available.

Thanks everyone, and thanks again Batch. 

   

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Nicolás on Jul 21st, 2015 at 10:38pm
Thanks Batch for your detailed answer.

I was thinking about taking Chlorpheniramine instead of Diphenhydramine, because the former is easier to find here in Chile, as far as I am aware of.

I've started to increase the daily dose of VitD3, and will look for B-50 or something similar here as well.

I am modifying my diet trying to increase its pH in order to make it more alkaline.

Last night got hit again, and O2 has been very useful.

Thanks again Batch, and I will keep you all posted about any improvement or discovery I may get.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 21st, 2015 at 11:57pm
Ncolás,

Chlorpheniramine might work as a first-generation antihistamine... but it's listed as less than effective as Diphenhydramine as an antihistamine...  It's worth a try if that's all you can find.  Please keep is posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jul 22nd, 2015 at 3:56am
You can buy generic Benadryl on E-bay:

Search under DiphenhydrAMINE.


image.jpg (978 KB | 11 )

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Morran on Jul 27th, 2015 at 7:29pm
Nicolas; You don't seem to mention vit a in your regimen. Have you missed that one? My clusters return whenever i stop taking vit a.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 27th, 2015 at 10:59pm
Hey Morran,

The following graphic helps explain at least one role of vitamin A (retinol) in preventing cluster headache. 

Just as vitamin D gets hydroxylated (metabolized) within a nerve cell in the following sequence...

Vitamin D3 + OH- -> 25(OH)D3 + OH- -> 1,25(OH)2D3... 

Retinol, (vitamin A) can be oxidized to retinoic acid...

When these two molecules join up within a nerve cell and attache at a Retinoid X Receptor (RXR) and a Vitamin D Receptor (VDR) located on a Vitamin D Response element (VDRE) on the nerve cell's DNA strand...  they signal genetic expression where that cell and adjacent cells down-regulate or suppress the production of calcitonin gene-related peptide (CGRP).  CGRP is responsible for the pain and neurogenic inflammation that occurs during the active pain phase of CH and migraine headaches...

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Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Nicolás on Jul 30th, 2015 at 10:40pm
Hi Friends,

Morran:
Since my last post (July 21st), I added a multivitamin formula, with VitA, B Complex, and many others (I attach a picture of its components).

I take two of these pills a day, so I'm getting 5,000 IU Vitamin A. Also, I keep the VitD3 treatment with 20,000 IU daily, along with 500 mg Mg, 2x Omega3 (360 mg EPA; 240 mg DHA), VitK2: 90 mcg menaquinone-7.

Peter and Batch:
I didn't find Dyfenhydramine at any drugstore, so I am taking two pills of Chlorpheniramine a day. I should wait for no less than two weeks to get the pills from eBay, and I risk them to get caught at the customs office here in Chile.

On July 25th I visited a new Neurologist, who received well the VitD treatment, and also agreed with the suspicion about a VitB12 and VitB6 deficiency. She prescribed me 3 injections of "Neurobionta Duo 10,000":

  • VitB1: 100 mg
  • VitB6: 100 mg
  • VitB12: 10,000 mcg

tonight I got the third injection. She also agreed with ChickenPox as the likely culprit of this new and empowered cycle.

So, what is my current status: not much better than a week ago, I still get hit every night, from 2 to 5 attacks:

  • After the first injection (July 26th) I got my first attack 6 hours after getting asleep (in these 20 days of constant attacks the better I've gotten was the only PFN and an attack 3 hours after getting asleep; the average is 1:30 after sleep, repeating all night at almost the same pace).
  • The last two nights I've been able to kill the attack with just 5 minutes of O2, and sometimes with hot towels applied directly to mi right temple.


The same neurologist last saturday prescribed me Prednisone (20 mg, twice a day for a whole week) and Topamax (Topiramate, 25 mg, every night for a month). This is a treatment I have been eluding since I got diagnosed with CH, so I am waiting until this saturday for the treatment with VitD, VitsB, VitA and 1st generation Antihistamine to stop the attacks. She was worried that I was more than two weeks without good sleep, so she expects this treatment to kill the cycle.

I am afraid of the side effects of Prednisone + Topiramate, that's why I am waiting a whole week in order to see if this cycle stops.

Anyway, today I bought the Vitamin B50, and I will take it since tomorrow (today I had my third injection of Neurobionta Duo 10,000).

I will tell you how I get these two nights before saturday and the Pred+Topamax combo.


DailyOneGold.jpg (542 KB | 4 )

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 31st, 2015 at 1:03am
Nicolás,

I like your new neurologist...  I also agree on holding off on the prednisone and Topiramate...  They can wait...

You're taking everything I would take with the exception of the vitamin D3...  I would bump it up to 40,000 IU/day for the next 5 days then drop back to your present dose.

I would also pop the vitamin D3 softgels between my back teeth and swirl the contents under my tongue and keep them there for at least 5 minutes without swallowing or drinking any fluids.  The contents taste slightly sweet and the gel coat will slowly soften to a gummy bear consistency then dissolve.

Taking vitamin D3 this way will bypass the GI tract and will get the vitamin D3 directly into the bloodstream much faster in a higher concentration.  If you do this, you should experience a favorable response within a matter of a few hours and have a good night's sleep within a day or two.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by theydontunderstand on Aug 1st, 2015 at 9:26pm

CHaStever wrote on Jul 21st, 2015 at 2:16am:
Hi all, a little update on my experience with D3 so far.

My cycle started on June 5th and built up over a few days to where I was getting hit 3-4 times a night, about an hour after going to bed, then every couple/few hours through the night, with some hits also coming between 7-10:00 p.m.. The worst attacks came about 7-10 days later with hits in the KIP8,9,10 range. It wasn't until 6/17 that I finally got in to the doc for some Rx relief (O2, Verapamil, Sumatriptan nasals). The O2 was the biggest relief, Verap I'm not sure about since it was only 240 mg 1x / day, and the Sumatriptan I've only used once... mainly rely on O2.

So I decided to give the D3 regimen a go. Started it on Fri. June 26th. That Saturday was the first night of uninterrupted sleep I had in almost three weeks. I was stoked... WOW, this is really working. Well, that was just one PF night. Sunday we drove 6 hrs. to the U.P. of Michigan and that evening I had a beer... the first in over a week... well 6:00 p.m. I felt it coming on... only a KIP 2-3, and it was aborted in less than 5 mins. with O2. I got hit two more times that night after going to bed but again they were only KIP 2-3's and aborted in less than 5 minutes with O2. Monday and Tuesday were PFDN's, Wednesday night I had 1 cocktail and got hit twice during the night, but again only KIP 2-3's easily aborted. Thursday and Friday were PF, Saturday being 4th of July I thought I'd try the beer test again and remained PF. Sunday, a couple beers and a couple cocktails around the campfire and still PF. Monday, Tuesday, Wednesday PF, except some light shadows. Wednesday night got home, had a few cocktails after the long drive and got attacked twice that night, but still only in the KIP 2-4 range. Thursday and Friday were again PFDN's. Saturday night got hit a little harder, KIP5 or 6. Now I've only been getting hit once a night, usually between 9-11 p.m., and only KIP 2-4, easily aborted in less than 5 minutes. Last Tuesday was a weird one... 10:30 felt it coming so started the O2. It was only a KIP 2-3 but after 10-15 mins. on the O2 it was still hangin' on so I slammed a 16 oz. Java Monster and another 7 or 8 mins. on O2 finally aborted it. Last night was the first time in a week and a half that I got attacked after going to bed, 1:45 a.m..

So that's my story and I'm stickin' to it. Sorry it was the loooong version.

So my thoughts are that the regimen definitely is helping... reducing the frequency, intensity and duration of my CH.
THANK YOU BATCH!!!
My problem is I like beer... and my evening cocktails... and I think the alcohol has probably interfered with my livers ability to properly process the vitamins. At least that's my theory. And that's why I'm giving up the alcohol again, at least for a while.
I also know it's been talked about taking Benadryl to alleviate possible underlying allergies but I'm reluctant to take it because I think it may irritate my urinary tract.

Well this has gotten long winded and it's getting late.

I'm thinking I will have to order one of the D3 blood spot test kits and in a few weeks will provide another update and take the survey, if that's still available.

Thanks everyone, and thanks again Batch. 

   



I am on the Batch treatment and I like my beer too. Alcohol metabolizes to acetylaldahyde in the liver. Acetylaldehyde is a histamine and there has been a lot of evidence lately that histamines are a trigger for CH and blocking them can help.

I actually can drink beer now while in cycle. here is what I do. When I drink I take two dyphenhydramines, two magnesiums and two L-cysteines. I also take them before I go to bed. We have a member here that swears L-cysteine has stopped his CHs. L-cysteine does not seem to do anything for me, unless I am drinking. What it does is block acetylaldehyde production in the liver. Without the acetylaldehyde there is no histamine reaction.

This may not work for you, but it could be worth a shot. It doesnt work for me unless everything else is right. I will be starting another thread about multivitamins after this because I just went through one not working for me.

Cheers!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by annualheadcase on Aug 28th, 2015 at 3:08am
Just wanted to check in after my last success story about a 8 months ago. My big mistake was in letting my regimen lapse. I didn't realize this was an ongoing therapy. I thought since I was an episodic sufferer, and had seemingly been through a cycle, I was done for a year and could go back to my business.

Then I left on vacation which took me through Boston and summer storms...a trigger that used to get me when I lived there long ago. Low and behold, I found myself in another cycle. I made my way to get the supplements, but I hadn't caught it soon enough and I started suffering one or two a day. That was almost a month ago now, and I'm still getting them. I've been sick on top of that from air travel, which hasn't helped matters.

I resorted to Verapamil, which has worked for me in the past. I found that the lower dosages that worked before weren't doing it this time. I think I've got it under control, but really wanted to avoid the Verapamil altogether for the obvious reasons.

I'll continue the anti-inflammatory regimen, and soon get a blood test (which I also forget in January). I'll report back on the findings.

Thanks again for being an amazing resource.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by feisty on Sep 1st, 2015 at 12:31am
Annualheadcase, please consider trying oxygen - it helped my husband cope before the supplements kicked in!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Sep 1st, 2015 at 3:01am
Feisty is right.

Oxygen is quickly effective and harmless. I wouldn't be without it myself.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Sep 27th, 2015 at 4:26pm
I just started Batch's D3 Regimen yesterday, and I've gone from 3-4 CH/day to one very minor one this morning that was easily quelled with a Zomig 5mg, so an auspicious beginning!

A bit of background. I'm a 46 year old man, and have been getting CHs since 2007. My CHs have been episodic rather than chronic, until about August of 2014. From October 2014 until August of this year, my CHs have, for the most-part been largely controllable with verapamil and Zomig. However, since August of this year, I've been finding the verapamil dosage of 6x120mg (2 in the morning, 2 at mid-day, 2 in the evening) to be robbing me of my vitality in every way. It makes me insanely tired, and unable to engage in any meaningful exercise, so I stopped taking it. Without fail, I started getting CH every day, and sometimes 3 in a day, since early September. In the last week, I started getting 3-4 in a day, so I resumed the verapamil, but yesterday, something happened that was the straw that broke the camel's back.

I was at the hospital yesterday afternoon after getting a force 10 (I was already using a 1-10 scale for my headaches before I ever heard about the other guy's 1-10 scale!) CH at around noon yesterday. Not only was it the worst CH I'd had in while, I had had another force 10 CH only 3 weeks ago, and that made me concerned, as force 10 CHs have always been quite rare for me (up to 8 or 9, yes, but not 10). The last straw for me was that a 5mg Zomig nasal spray, 2 verapamils, 2 extra strength advils and a lithium carbonate, all taken at the very start of this headache, did absolutely NOTHING whatsoever to mitigate it. The force 10 pain lasted about an hour solid, and the only relief of any meager sort I could get was running hot water from the bathtub tap over the right side of my head while holding my hand to channel the hot water over my eye socket area. But the even scarier thing for me was, this headache did not entirely disappear, even after the hour, though it dissipated down to a force 2-3, enough for me to be able to have my girlfriend drive me to the hospital. I decided that I would ask the doctor in the Emerge for a prescription for anything he would give me to put a dent in that kind of pain, since I didn't think I could endure it again.

At the hospital, while on a cocktail of narcotics waiting to see the doctor, I cracked open my laptop and scanned the threads on this site again; though I had joined a couple of weeks ago, I had not seen any mention of Batch's regimen. Well, yesterday, I finally did, and amazingly enough, my girlfriend happened to have enough Vitamin D3 with K2 capsules, and the other ingredients at home, for me to start the formula. So, at the hospital, I did ask the doctor if he could take some blood for the serum 25(OH)D level baseline before I started the regimen, but he said he's never ordered that test before, and that I'd have to ask my family doctor or neurologist to order that.

I didn't want to wait to start the regimen, after just having had a force 10 headache, so I just started last night by taking the 50,000UIs of D3, along with the Kirkland multivitamin and Magnesium. I had to take 50 capsules of D3+K2! But I did it. I'm now on my way out the door to go get a more manageable D3 dosage product, but one obstacle I'm already running into is that in Canada, Health Canada has ordered all Vitamin D3 in dosages over 1000UI off the shelves, so I probably can't get any 5000 or 10000UI D3 from a store here :( however, it looks like I can order it through Amazon.ca, so all is not lost. If worst comes to worst, I'll drive down to the US and buy some over the border on a day trip. It's only about an hour or so to Ogdensburg, NY from Ottawa where I live, so I'll look into doing that.

I'll just have to get the level tested asap and see what it is. Assuming my serum 25(OH)D was low to begin with, it probably won't be that much higher after only a few days of the regimen, so I'll report whatever it's at when I do the test. I'll provide updates as time passes.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Sep 27th, 2015 at 4:31pm

annualheadcase wrote on Aug 28th, 2015 at 3:08am:
I resorted to Verapamil, which has worked for me in the past. I found that the lower dosages that worked before weren't doing it this time. I think I've got it under control, but really wanted to avoid the Verapamil altogether for the obvious reasons.

I'll continue the anti-inflammatory regimen, and soon get a blood test (which I also forget in January). I'll report back on the findings.

Thanks again for being an amazing resource.


I also have started the Batch regimen to avoid verapamil. If your health insurance covers it, I highly recommend Zomig 5mg (Zolmitriptan) nasal sprays. They are the single most effective response to a CH I've ever tried, including oxygen, and you can walk around with one in your pocket. I highly recommend them until the Batch regimen kicks in, as they will stop most CHs dead in their tracks, or at least greatly reduce their intensity (like from an 8-9 to a 2-3). The huge drawback to them is that they are extremely expensive if you have to pay for them out of pocket. Here in Canada, they are $100 for a box of six! I can only use them because they are covered by my company's health insurance (thank god, or I might have killed myself a few years ago).

On only the first day of Batch regimen, but already, I'm feeling a lot better, and I'm off the verapamil for good if this works!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Mike NZ on Sep 27th, 2015 at 7:46pm
A lot of people order vitamin D3 online, with iherb.com being one that a lot of people have posted as having used with no issues. This is probably cheaper than driving to the US to get them, unless you are going for something else too.

In general most people with CH find that going to the ER (casualty / A&E) is just about useless for complex headaches as the doctors there are clueless on dealing with things like CH (much better with something like a broken leg, heart attack, etc.). So most people avoid them.

I hope that D3 works as well for you as it does for me, I'm one of those who have been CH pain free using it for multiple years.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Sep 28th, 2015 at 10:07am

Mike NZ wrote on Sep 27th, 2015 at 7:46pm:
A lot of people order vitamin D3 online, with iherb.com being one that a lot of people have posted as having used with no issues. This is probably cheaper than driving to the US to get them, unless you are going for something else too.

In general most people with CH find that going to the ER (casualty / A&E) is just about useless for complex headaches as the doctors there are clueless on dealing with things like CH (much better with something like a broken leg, heart attack, etc.). So most people avoid them.

I hope that D3 works as well for you as it does for me, I'm one of those who have been CH pain free using it for multiple years.


Thanks for the tip about iherb.com. One problem is that Health Canada will not allow Vitamin D3 products into Canada with doses in excess of 1000IUs. So I've asked my neurologist to see if it's available by prescription (which would be good, since my health insurance would pay for it) or if he can order it through Health Canada's 'Special Access Program', which says: "A doctor will need to call "Special Access Program" at 1-613-941-2108, to obtain permission to import the above products; and he or she will need to place the order for you."

Also, going to Emergency at the hospital was what I did in desparation just before I found Batch's formula on here. Of course I didn't expect them to have a cure or effective long-term remedy. At that point, I was looking for narcotics, just so I wouldn't be utterly defenseless the next force 10 CH I got.

Finally, I think there's a strong case to be made that Batch's regimen be more prominently linked to on this site, as I had to dig into a thread titled 'I don't know what to do anymore.' In order to find it. If this treatment really is effective, and it would appear to be after 5 years of trials by hundreds of CH sufferers, with over an 80% effectiveness rate, I think the recipe should be linked to right on the main page. There's people on the verge of killing themselves, after all (I even contemplated it last force 10 CH), so I think it's kind of a duty of the site to do this. Batch's regimen may be saving lives, for goodness sake!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Sep 28th, 2015 at 6:54pm
Anubuis,

Welcome to the anti-inflammatory regimen...  I'm confident you'll find it to your liking...

You'll find a list and photos of all the supplements, doses and a lot more half way down the first page of this thread... I'm working on a write up for DJ that will take up a new tab at the left next to oxygen info as the "How To" for this regimen needs a prominent and protected spot of its own.

You're correct that your Health Care system in Canada does not allow import of capsules with more than 1000 IU vitamin D3.  Isn't it wonderful when bureaucratic bean counters and liberal progressive politicians, neither of whom know anything about nutrition, make up rules and regulations that deny access to a very healthy and very safe nutrient like vitamin D3 at the doses needed...

That said, I'm unaware of any Canadians having shipments from iHerb of 5,000 or 10,000 IU capsules of vitamin D3 confiscated...

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by shadia on Sep 29th, 2015 at 2:09am
Hi there i am from Quebec,Canada and ordered vit D 3 10 000ui online and did not have any problems with customs or receiving it from th states. Maybee it depends on the province you live in, but you should try, worked for me. And the regimen WOW! i had one cluster headache since starting the regimen around twelve  days ago. Good luck!!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Sep 29th, 2015 at 9:08pm

Batch wrote on Sep 28th, 2015 at 6:54pm:
Anubuis,

Welcome to the anti-inflammatory regimen...  I'm confident you'll find it to your liking...

You'll find a list and photos of all the supplements, doses and a lot more half way down the first page of this thread... I'm working on a write up for DJ that will take up a new tab at the left next to oxygen info as the "How To" for this regimen needs a prominent and protected spot of its own.

You're correct that your Health Care system in Canada does not allow import of capsules with more than 1000 IU vitamin D3.  Isn't it wonderful when bureaucratic bean counters and liberal progressive politicians, neither of whom know anything about nutrition, make up rules and regulations that deny access to a very healthy and very safe nutrient like vitamin D3 at the doses needed...

That said, I'm unaware of any Canadians having shipments from iHerb of 5,000 or 10,000 IU capsules of vitamin D3 confiscated...

Take care,

V/R, Batch


Thank you very much, Batch.

Just an update. I'm on day 4 of the regimen, but I've already been very pro-active. Yesterday, I had a blood test to check my 25(OH)D level (that was before my 3rd dose), and today, I picked up a prescription from my neurologist for 10,000IU dosage D3. Apparently, it does exist in Canada, it's just prescription-only. The great part about this is that my medical insurance covers the cost, so I only pay for the dispensing fee of $3.99 at Costco. He only gave me a prescription for 30 of these as a trial, but it beats having to take tons of 1,000IU capsules.

On a more sour note, unfortunately, just today, I had not one, but two pretty bad CHs (first one at about 11am at work-lasted nearly an hour-about a 8 in strength) and the second one, only 1/2 hour after taking my fourth dose of Batch regimen after dinner tonight. This CH was slightly worse, about a 8-9. I took a 5mg Zomig nasal and 1x240mg verapamil for the first CH, and another 5mg Zomig nasal and 2x240mg verapamil for the second. However, I also read on this thread about histamine responses negating the effects of the Batch regimen, so I had my brother go out and get me some benadryl. I just took 2, and we'll see how well this works.

Although getting two CHs on day 4 of the regimen was disheartening to say the least, I am so convinced by the anecdotal and scientific evidence of the efficacy of the regimen that I am going to stay on it, and give it a trial of at least a few months, as I really don't like verapamil, and verapamil didn't even seem to stop the force 10 CH I had last Saturday at noon at all. Based on what I've read on this thread, I think it's quite probable that my latest CH cycle is due to some sort of histamine response to something. I have been sneezing intermittently for a few weeks, which is about as long as my latest cycle has lasted. In addition, I remember that the first CH cycle I believe I ever had, back when I was about 20, seemed to be brought on by delivering the university newspaper. I had terrible headaches for about two or three weeks, and then mysteriously, they stopped. I remember my mum saying it might be the ink on the newspapers, as I had 5,000 papers stacked in the back of my VW Rabbit every Saturday on the drive from the printers to the university, and she said that newsprint ink always made her sick, too. But the mystery of why my headaches stopped was solved when I asked the guy at the newspaper printer about the ink, and he said that they had just switched over to vegetable-based inks around the time my headaches stopped!

Anyhow, I only mention this in case it helps anybody else with their CHs. Unfortunately for me, I work around ink at my current job, and just before the 11am CH today, I went down to help a guy who works on a large ink-jet transport that has about 18 inkjet heads that print labels all day long. Hmmm.... We'll see if the Benadryl helps me, along with the Batch regimen. I've also decided to boost my D3 intake to 50,000IU for the next couple of days, and breaking them up into 20,000 morning and 30,000 dinner-time, along with the rest of the cocktail at that time. I'll keep you all posted.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Mike NZ on Sep 30th, 2015 at 12:17am
Whilst for some people D3 can work in a day or three, for quite a few people it can take a week or three to take effect, so don't give up too soon. Batch also suggests people follow a loading schedule to speed this up. Send him a PM and he'll be able to help.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Sep 30th, 2015 at 7:34am
Yes, thanks Mike. I started the Batch regimen last Saturday with a loading dose of 50,000IU of D3 right off the bat. That much seemed to make me feel quite a bit better, and I did get a whole night's sleep for the first time in a few weeks, which is one reason I am optimistic about the longer term efficacy of the regimen. I subsequently took 20,000IU of D3 just after dinner, on Sunday and Monday nights. However, as I had a CH yesterday morning at about 11am, and a second one not long after taking yesterday's dose of 20,000, I decided to boost my D3 intake back up to 50,000IU (as per a recommendation I saw Batch give another CH sufferer in this thread) by taking another 30,000IU in an attempt to speed the increase in my 25(OH)D blood serum level. Also as per a recommendation in this thread, I also took 50mg of Benadryl, as I wondered if a histamine response might explain why the Batch regimen had failed to prevent two CH 3 days into the regimen.

Well, I'm writing this early this morning, as I started to feel like another CH was coming on at 6:45am which woke me up. I decided to just take another 50mg of Benadryl and a couple of extra strength advils to try to bring down any inflammation, and so far, it seems they've halted the onset of a full CH. Of course, this is only one instance, so I'm going to try this again at the next onset of a CH to see if it works.

I'll keep you all posted. Incidentally, it is so wonderful to have the people on this site, and the site itself, as a resource. Although my girlfriend is a gem and is extremely understanding and comforting, the support and advice of fellow CH'ers is immeasurable. I firmly believe now that I will figure out a working treatment regimen that works for me, and publishing what works for me, I know I will also be helping others. That means a great deal to me, as I wouldn't wish the pain of CH on even the worst of enemies.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by shadia on Sep 30th, 2015 at 7:43am
Welcome anubis 44, this site saved my sanity,especially Batch what a great man. I am on the regimen myself , before findind this site i had 24 hres shadows and CH up to 5 times a day for one month, thought i would go crazy. But the regimen really workes since 2 weeks i had on ch took 02 and a shot of imitrex then it was gone . So i hope you have the same results with vit D3 , and remember to have your bllod work for vit D3 checked out, i was low like Batch predicted.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Sep 30th, 2015 at 8:04am
Hi Anubis,
delighted to hear that another CH sufferer is taking the Batch D3 regimen.
It can take a few weeks before it becomes 100% effective so hang in there, you're on the right track.
I have found that when i started the regimen, my CH symptoms became a bit unusual, sometimes getting hits a a time when i wouldn't usually get them, they even changed side once or twice., but then it all went away  :)
Now pain free since I started the regimen in march 2013.
YIPPIE.
All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Guiseppi on Sep 30th, 2015 at 8:19am
Welcome to the nut house Anubis! I started the Batch Regimen in March of 2010 and have been headache free ever since, this after over 30 years of episodic CH. I hope it does the same for you.

Joe

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Sep 30th, 2015 at 8:43pm
Thanks for the warm welcome, Nadia, Thierry and Giuseppe.

After taking a 50mg dose of Benadryl around 6:45am this morning, I managed to abort the oncoming CH. Took another 50mg dose at noon just for good measure, and still headche-free this evening as I write this at 8:41pm. Also took 40,000IU of D3 in my Batch regminen, and will taper it down to 20,000IU for tomorrow as per the usual dose for this part of the regimen (still in first week).

Time will tell if this works!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Oct 1st, 2015 at 1:03pm
So a quick update. The Benadryl/Advil combination seems to be keeping me CH free, and I highly doubt it is a coincidence, as I've been feeling a sense of shadows off and on since yesterday that just never seem to turn into CHs. I should also note that I've been religiously keeping away from things I'm pretty damn sure can trigger a CH, like Monosodium Glutimate and alcohol (haven't had a drop in over a year and change-even a splash of red wine in a stew recipe could bring one on for me!), and dark/white chocolate (the Lindt brand especially triggers them for me). Frankly, I love chocolate, so I still eat milk chocolate sometimes (in a candy bar or ice cream bar), and I'm pretty sure that's been triggering them, too.

No matter what the specific details of individual CH sufferers, I am now convinced that inflammation and strong histamine response is a major factor in the onset of my CHs at least, and I am increasingly convinced it's the Benadryl that's largely keeping my CHs at bay right now! I'm going to try taking just the Benadryl and no Advil to see if it still keeps them from coming on. But I can't emphasize enough that you must also stay away from foods/alcohol and probably tobacco, that can also trigger a histamine response, as your bodies' histamine response can probably overwhelm even a maximum dose of Benadryl. If you want to be pain-free, you're going to make yourself do this.

Thank you so much, Batch, for mentioning the Benadryl and how, as it's a first generation anti-histamine, it can cross the blood-brain barrier! I had tried another anti-histamine (I'll publish the name when I get home) in desperation a few weeks ago, but it didn't help, so I figured CHs were not related to histamine response! Now I think only the antihistamine diphenhydramine, or one very similar to it, can abort a CH, but you've got to take the full 50mg max dose either at regular, pre-emptive intervals throughout the day (in 4-6 hour increments), or at the very least, the very instant you start to sense a CH coming on so it has time to dissolve in your stomach and take effect.

I'll continue to update you all, but really, this is a godsend. I actually feel like I'm able to control my CHs and prevent them before they even begin. This is a sense of control over 'the beast' I've never had before. Let's hope that I won't continue to need Benadryl to ward off CHs indefinitely, and that the Batch regimen of D3 will work its magic on me, too.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Oct 2nd, 2015 at 3:11pm
So the plot thickens.

Still no actual full-on CHs, but I did start to get one last night at about 5:30am. Took two 25mg Bendryls and 2 extra strength Advils and managed to avert a CH by a narrow margin. But for me, this is major, MAJOR progress. I now know that 50mg Benadryl (diphenhydramine) and 800mg Advil (ibuprofen) will abort a CH if taken early enough. I tried just taking the Benadryl, but after 15 minutes, with that all-too-familiar sensation of imminent CH pain threatening to break through in my skull, I downed the two Advils at 5:45am. I'm happy to say that these two managed to wrestle the CH to the ground and abort it!

If Benadryl and Advil together can prevent or abort a CH, how exactly are they doing that? And why were they able to take effect before the onset of the CH? Normally, a CH would hit me full force within 5-10mins of me noticing one is coming. This last time, I was able to sense it coming a full 20 minutes or more early--enough time in which to take the Benadryl and the Advil. So, my CHs seem to be weaker or at least, taking longer to start. This is probably because of the high Vitamin D3 regimen. But why?

Which has got me researching. What I have just read is really quite interesting. Ibuprofen works by: "inhibiting the synthesis of prostaglandins, which are fat-like molecules derived from arachidonic acid, which are involved in mediating inflammation (swelling), pain, and fever." (Wikipedia - "Ibuprofen" entry)

So I looked up prostaglandins (wikipedia - "Prostaglandins" entry), and found out that:

    Prostaglandins are produced following the sequential oxidation of arachidonic acid, DGLA or EPA by cyclooxygenases (italics mine) (COX-1 and COX-2) and terminal prostaglandin synthases. The classic dogma is as follows:

          COX-1 is responsible for the baseline levels of prostaglandins.
          COX-2 produces prostaglandins through stimulation.

    However, while COX-1 and COX-2 are both located in the blood vessels, stomach and the kidneys, prostaglandin    
    levels are increased by COX-2 in scenarios of inflammation and growth.
"

Another Sherlock Holmes 'A-ha!' moment! So, COX-2 (cyclooxygenases) "produces prostaglandins through stimulation". That's the one we're interested in, as it's the COX-2-produced prostagladins that likely cause the inflammation responsible for our CHs, which makes sense because they cause inflammation, and "have a short half-life." Since our CHs tend to only last 45 mins or so max (yes, I've had one last an hour at full-strength, too!), it would seem that whatever causes them is rapidly produced in our bodies, and dissipates in strength comparatively rapidly, too.

So I looked up COX-2 under "Cyclooxygenase" in wikipedia and noticed under the section "Natural COX inhibition", the following list:

    -Culinary mushrooms, like maitake, may be able to partially inhibit COX-1 and COX-2.[3][4]
    -A variety of flavonoids have been found to inhibit COX-2.[5] (italics mine)
    -Fish oils contain a natural inhibitor of COX.[6] (italics mine)
    -Hyperforin has been shown to inhibit COX-1 around 3-18 times as much as aspirin.[7]
    -Calcitriol (vitamin D) significantly inhibits the expression of the COX-2 gene.[8] (italics mine)

A-ha! That last line is critical, so it bears repeating. "Calcitrol (Vitamin D) significantly inhibits the expression of the COX-2 gene."

So, Batch's high Vitamin D3 regimen probably works because vitamin D "significantly inhibits the expression of the COX-2 gene." This means, simply put, that having lots of vitamin D in your system will drastically curtail the potential of your body to produce prostaglandins, the very things which cause the inflammation (along with histamines, if you're also exposed to something which triggers a histamine response) which strangles our tri-geminal nerve! However, because the vitamin D has to be present at all times to inhibit this gene's expression, you must continually maintain a high 25(OH)D serum level (level of vitamin D3) in you blood at all times for this to work.

Meanwhile, in the event that something you're eating or are otherwise exposed to produces a strong histamine and/or prostaglandin response in your system (like, say, acetaldehyde), even with the high 25(OH)D serum levels inhibiting the COX-2 gene, you may still need to augment your anti-inflammatory regimen by taking a CH1 receptor inhibitor that crosses the blood-brain barrier, like Benadryl, to help reduce the histamine response in the brain tissues surrounding your tri-geminal nerve, and for good measure, a good high dose of Ibuprofen, to further inhibit the synthesis of prostaglandins in the immediate term. Ideally, however, you should stay away from sources of acetaldehyde, if possible.

It's also probably a good idea to eat a diet rich in flavanoids, which also inhibit COX-2 prostaglandin production, like ginko-bilboa, bananas and blueberries, and finally, stay away from acetaldehyde, the chemical that triggers CHs that's produced when you drink alcohol, and is also in things like coffee, bread and some ripe fruits.

So, my current (evolving) CH regimen is:

1) Keep 50mg of Benadryl on me at all times, along with 2x400mg Extra Stregnth Advil, ready to pop at the slightest hint of a CH. So far, they have been spaced far enough apart that I'm still within the acceptable daily dose limits for both. I'm also keeping a Zomig 5mg in my pocket, just in case, but so far, have not needed one since I started Benadryl/Ibuprofen as an abortive.
2) Continue with the Batch D3 regimen, possibly even boosting the omega-3 fish oil levels in order to hopefully reduce the requirement for Advil, as they are both COX inhibitors, and I'd rather take more fish oil than Ibuprofen if it'll work. :) 

As usual, I shall keep you all apprised of my results!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Oct 4th, 2015 at 5:23pm
Hey Anubus,

I love reading feedback like yours and admire your hunger for information on the pathogenesis and treatment of cluster headache...  The more CH'ers read about CH, what makes it tick, and how best to prevent it... the better. 

Inflammation (more specifically neruogenic inflammation), from any cause makes CH worse so your comments on Omega-3 fish oil and calcitriol, the active hormonal form of vitamin D3 and their capacity as anti-inflammatory agents are spot on.

This is why I call the formulation of vitamins and minerals I take to prevent CH...  the "Anti-Inflammatory Regimen."

Genetic expression is clearly part of the mechanism of action enabling vitamin D3 to prevent CH.  Down regulating/supressing the production of CGRP (Calcitonin Gene-Related Peptide) in neurons within the hypothalamus and trigeminal ganglia is one of the leading candidates in vitamin D3's autocrine and paracrine signaling associated with genetic expression. 

CGRP is elevated during the pain phase of migraine and cluster headaches and it's one of the leading causes of neurogenic inflammation and pain associated with CH.

I agree with your regimen and disciplined approach of determining a causal relationship... with the exception of taking the NSAID Advil (ibuprofen).  All of the NSAIDs including aspirin result in bleeds in the GI tract. While taking NSAIDs for a day or two is likely ok, there's a growing body of medical evidence that taking them for weeks or months appears counter productive.

A review of the FDA's Adverse Reaction Database of information reported over the last 10 years revealed the following statistics:

Over The Counter NSAIDs                  
Deaths due to NAPROXEN (Aleve)      - 142
Deaths due to ASPIRIN                     - 645
Deaths due to TYLENOL                    - 964
Deaths due to EXCEDRIN                  - 500
Deaths due to IBUPROFEN                 - 661

Deaths due to Vitamin D3                  -    0

As vitamin D3, a.k.a., calcitriol and 1,25(OH)2D3 also has the capacity to down regulate the production of prostaglandins... is taking ibuprofen really necessary?

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Oct 4th, 2015 at 10:04pm
Batch, thanks for your kind response.

I agree that taking Advil (ibuprofen) is not ideal over the long-term. However, what I'm finding at this stage of the regimen is that I'm faced with the choice of enduring a lower level CH (about 2-3) in my head that feels like the beginnings of a CH, take a couple of advils, take a Zomig or start taking verapamil again. I am determined to stay off verapamil from now on, and the Zomig is... well, simply less desirable than taking some advil if the advil will do the trick, in my view. At this point, even the extremely high levels of D3 I've been taking haven't been sufficiently curbing my bodies production of protaglandins, so yes, I'm finding I still need the advils right now. Perhaps my 25(OH)D serum levels haven't quite made it over the minimum threshold hump of 60ng/mL yet?

I've now been on you regimen for just over 1 week, and have noticed that full-blown CHs have stopped (ie. the 'stabbing' sensation CHs). What I have been getting since I had my last full-blown CH last Tuesday (3 days into the regimen) is the weaker level CHs--the pressure on the nerve (so, less than about a level 3), but without it turning into the stabbing pain sensation (which I would consider 6-7 or higher). So the D3 IS helping to reduce the intensity of the CHs in my opinion, but they are happening, albeit at a noticeably reduced strength and onset speed. This is also important. Before the regimen, my CHs would waylay me within 5-10 minutes of the first sensations. Now, I have the luxury of time to go grab the Advil and possibly, the Benadryl, and know that it will work soon enough that I won't need a Zomig. Right now, Advil (and possibly, Benadryl, too) is doing the job of arresting these (I'm using the quick release gel caps - 2x400mg).

On a more pro-active note, I'm also trying to help the D3 inhibit my body's production of protaglandins by eating more things that are rich in flavinoids (bananas, black tea, blueberries, apples, peaches, pears, strawberries, etc.), which are also known to reduce prostaglanding production. Hey, I was able to eat dark chocolate covered figs yesterday and today without risking a brutal ice-pick in my skull for the first time in a few years! Your regimen MUST be doing something for me already!

I'm also staying away from coffee and bread to the extent possible and really ripe fruit, as these are all sources of acetaldehyde, the thing that gets produced in your liver when you drink alchohol, a classic CH trigger, at least until I can be certain I won't get a CH from consuming any of these. So it's black and green and herbal teas for me!

Again, I am dedicated to staying on the D3 regimen, and I will continue to meticulously record my results. I'm eagerly awaiting my 25(OH)D serum level results taken last Tuesday, but they'll probably take a couple more weeks to get back to me.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Oct 5th, 2015 at 1:26am
Anubis,

Thanks for the update and I understand the ibuprofen...  although it usually has no direct effect on CH...

We'll know more when your 25(OH)D lab results come back.  In the mean time, stay the course... you're doing everything I'd do.

Take care and please keep us posted,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by blacklab on Oct 5th, 2015 at 4:27am
Hi anubis
great news your getting some results with the regime. My advice is to stick with it for the long term.
I've probably been one of batches problem cases, for me it wasn't an instant success, in fact didn't really have an effect for some months, reducing the intensity of the hits but still needing imigran and continuing on with verapamil. But over the journey and batches dedicated help, I've managed to get my vit d levels to where I need them, sorted out my gut with a few months on a really good probiotic, be off verapamil and only need the occasional red bull should a shadow rear its head.
I like the methodical way you are treating the regime, rather than take someones word for it, your cross referencing the actual benefits of all parts of the regime parallel with actual drugs we are prescribed. My first neurologist prescribed ibuprofen and fast acting verapamil, I was knocking back ibuprofen like lollies, didn't know that imigran existed until I was in such a mess and found another neurologist.  I think everybody reacts differently to both the regime and indeed prescription drugs and its just a case of finding that sweet spot or balance.
Its taken me a fair bit longer than most, but I have my life back now, not completely pain free ( yet ) but compared to before I'd have to say 90 % better off.
Good luck with your quest.
regards
colin

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Oct 5th, 2015 at 1:12pm
Thanks for the supportive comments, Colin.

Just another quick update. Less than an hour after my last comment last night, I started feeling a CH coming on (around 11pm). I downed a couple of Advils and a couple of Benadryls, something that has put paid to the other minor CHs that have attempted to happen since starting the Batch D3 regimen last Saturday September 26th, but after the CH intensity slowly increased, after about 15 mins, I used a Zomig 5mg nasal spray. However, after reaching about an intensity 5-6, the pain still did not abate. In addition, the telltale indicator to me that this was at least a partially an allergic-type response CH was that I actually sneezed even though I had no cold or other sneeze-inducing condition immediately prior to the onset of the CH! What the heck was going on, I wondered? The last time I had a CH this strong was last Tuesday September 29th, in the early evening. So what was similar about last night and last Tuesday evening? Well, I was assembling a new IKEA CD particleboard shelving rack last Tuesday, and last night I had been assembling an IKEA particleboard Billy bookcase. Hmmm....

So I wondered, is it possible that there are high enough levels of Acetaldehyde in the IKEA particleboard shelves to trigger a CH? After all, Acetaldehyde is the thing that alcohol produces in your liver that triggers CHs, too. So I looked it up. Low and behold, the apparent answer seems to be... yes. There are significant amounts of acetaldehyde in new particleboard and laminates. Did this cause the only two CHs I've had since starting the Batch D3 regimen that didn't readily succumb to Ibuprofen/Bendryl, or even Zomig? I think it's seriously worth considering. I've even just now recalled starting CHs whenever I've been walking around IKEA's showroom for a little while, so definitely, it IS worth considering acetaldehyde off-gassing as a possible trigger.

I am now researching the question of what might help us process acetaldehyde into acetic acid as quickly as possible, in the hopes that this might lead to a preventative for CHs in the case of acetaldehyde as a trigger.

As super quick aside, this morning, I woke with a bit of nerviness, which promptly abated once I had brushed my teeth and completely vanished by the time I had eaten a banana on my way out the door to work. The tooth-brushing would have killed the (comparatively small) build-up of acetaldehyde in my mouth that naturally occurs from plaque producing it overnight, and the banana is a source of flavinoids, which help inhibit the production of prostaglandins! But the banana was not fully ripe yet, so it would not have contained any significant amount of acetaldehyde as result of fermentation that comes from full-ripeness.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Oct 5th, 2015 at 1:36pm
Hey Anubis,

Sounds like a theory worth investigating further. Let us know how you get on.

In the meantime, stay away from IKEA stores and DIY in general.

Keep well.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Oct 5th, 2015 at 4:28pm
Anubis,

A couple observations... For most CH'ers, sleep brings on a perfect storm...  The depressed respiration rate increases the arterial partial pressure of CO2 and decreases the arterial partial pressure of O2...  Both of these conditions can easily trigger and sustain a CH...

When you wake up in the morning, stand and start moving around... your respiration rate increases and that flushes excess CO2 out with exhaled breath and increases O2 with every inhaled breath...  so you feel better...

The second observation...  IMHO, If you're trying to fend off an approaching CH... you're better off taking a 30,00 to 50,000 loading dose of vitamin D3 sublingual, than swallowing an NSAID and Benadryl.

By sublingual, I mean pop the vitamin D3 softgels between your back teeth and swirl the contents under your tongue and keep them there for at least 5 minutes before swallowing or drinking any fluids...

The sublingual administration gets vitamin D3 into the blood stream and up a maximum serum concentration within minutes... where swallowing the vitamin D3 can take up to 12 hours to reach a maximum serum concentration...

Give this a try the next time you think the beast is going to jump ugly...

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Oct 5th, 2015 at 10:05pm
Batch, thank you so very much for continuing to provide personal feedback to me! It's very, very appreciated!

As you can see from my frequent posts, I'm entirely focused on getting to the bottom of this dreadful medical condition once and for all, with at least an extremely effective treatment if not a cure, that means for EVERYBODY who now deals with CH, not just me. Now that I may be nearer to this holy grail for myself than I ever imagined possible, I wonder if I might have saved my marriage somehow, which is currently going through the process of legal papers, had I known about this treatment regimen earlier. But somehow, I have to believe that what has happened is all for the best. I see that you published your initial posts back in late 2010, but somehow, I didn't come across any mention of a high D3 dosage regimen as an effective treatment on the web until Saturday Sept. 26th of this year. There is no mention of high dosage vitamin D3 treatment in the wikipedia entry on 'Cluster Headache', but there SHOULD be.

So, on a more positive note, I just got my results of my 25(OH)D serum level over the phone from my doctor's office. Bear in mind that I had started the D3 regimen with a 50,000IU dose on Saturday September 26th, and that I had also taken another 40,000IU the following evening (Sunday Sept. 27th), and a 20,000IU dose of D3 on Monday Sept. 28th, all in an attempt to get the serum level up as quickly as possible. My blood test was performed around 12:30pm on Tuesday Sept. 29th, before my 20,000IU dose of D3 for that day (I've been taking the regimen just after dinner each day), so it reflects the 25(OH)D serum level after 3 days of the regimen, and ~110,000IUs of D3.

So, my 25(OH)D level reported by the lab was 63nm/mL, which my doctor considered 'low', and she recommended that I continue the high D3 regimen! To be honest, I was surprised that it was even that high, considering the crazy CHs I had been experiencing just immediately before I started the regimen. I guess I've been able to load up on D3 effectively enough to get it up there even after only 3 days of D3 loading! God only knows what it must have been back on Saturday Sept. 26th, the day I had my girlfriend drive me to the hospital after a level 10 CH.

So, other than the faint shadow this morning that seemed to disappear after I got up and brushed my teeth and ate a banana, no CHs today! Keeping my fingers crossed and being mindful about scents and chemicals around me that might be triggers.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Oct 10th, 2015 at 4:36pm
Anubis,

Thanks for the update and your lab results.  Even with the vitamin D3 loading schedule, it can take a couple weeks to a month to elevate your 25(OH)D up to the target serum concentration of 80 ng/mL, 200 nmol/L.

The rules for updating Wikipedia make it difficult for me to make an input on preventing cluster headache with 10,000 iU/day vitamin D3. 

That said, you can go to Vitamin D Wiki website at the following link where I have a page on the anti-inflammatory regimen with reports of efficacy provided by CH'ers like you.

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Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by birdman on Oct 27th, 2015 at 12:40pm
Haven't logged on in a while and it was great to see Batch is still the man!!  Have a question that I think I posed to you a while back but couldn't find.  I have been doing the D3 and fish oil for a while and will do it forever.  Have been pain free for a while(I need to look at my last sign on to fi gure out since when).  But experience a lot of leg and arm stiffness, more achy bones than muscular.  I realized that I haven't been taking the calcium, magnesium, etc.  Only the D3 and fish oils.  Could this be the reason for the aches??  Would love your thoughts

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by MDR on Oct 27th, 2015 at 12:50pm
I take the fish oil, magnesium,and the D3 for around 3 yrs haven't experienced that .

Mark.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Oct 27th, 2015 at 1:49pm
Hey Birdman, it does sound like you could be suffering a Magnesium deficiency.
You could do with adding Vit A, Calcium, Magnesium, SuperK, zinc and Boron to your daily regimen if you want to take it as per Batch.
All availlable on iberb

All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Oct 27th, 2015 at 11:37pm
Hey Birdman,

Thanks for the update and question.  The short answer is yes.  You may have a wide range of deficiencies starting with magnesium, calcium, zinc, boron, vitamin A and many of the B vitamins.

There's a sufficient body of evidence indicating the enzymatic process of hydroxylating (metabolizing) vitamin D3 by adding a hydroxyl [-OH] group to make 25(OH)D and a second hydroxyl group to make 1,25(OH)2D3, consumes magnesium. 

Without supplementation, magnesium levels within the cells can drop while taking 10,000 IU/day vitamin D3 and this can result in an overall magnesium deficiency as well as a calcium - magnesium imbalance.

Bottom line, we need to take all the vitamin D3 cofactors in the anti-inflammatory regimen to ensure effective CH prevention and avoid deficiencies.

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Oct 31st, 2015 at 2:20am
Hi all

I have a couple of questions re the D3 regimen, which doesn't appear to be working for me.  I'm an episodic sufferer and have been on the full D3 regimen since March 18th 2015 after some nasty shadows.  I normally get the clusters in October each year for around 6 weeks.  It's now October and, i'm sad to report, my cycle started again - worst its ever been with 4-6 attacks in a 24 hour period, luckily aborted with Oxygen.  I just had my bloods done again (23rd October 2015) and 25(OH) was 205 nmol/L.  That's after 7.5 months on the regimen. I would have thought that i should be up in the 25(OH) green zone at this concentration.  So, my questions are:

* should I ramp up the daily D3 dose to 20,000IU for a week or two to see if can go pain free (chasing the 215nmol/l target) and then drop down again to 10,000IU?  I note that some sufferers who went pain free were up at 371 nmol/l according to Batch's survey
* if my serum was at 205nmol/l after 7.5 months on 10,000IU, does this mean the maintenance dose is potentially too low for me to achieve a higher PF serum concentration?  Would my maintenance dose actually need to be higher? I note the GrassRoots health study indicated taking up 40,000 IU per day is unlikely to cause toxicity, but i'm nervous to push higher than 10,000 for protracted periods as a maintenance dose
* With my serum concentrations already technically high, do i run the risk of entering D3 toxicity territory if i ramp up to 20,000 IU for a few weeks?  For how long could i risk inflating the D3 dose to 20,000?
* The D3 survey running on this site states "78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free". That means there are a bunch of us who are not going pain free.  I wonder if this is to do with even higher rates of D3 serum metabolism and that these individuals would benefit from taking more of the vitamin.

All thoughts most appreciated. 

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by blacklab on Nov 1st, 2015 at 1:01am
Hey Engles,    I too am in Aussie and get hit the same times as you.   200 nmol is the green zone when you convert it from ng.  I have had to go up to 240 nmol at times in an attempt to go pain free. Intoxication, well my blood tests showed absolutely no intoxication being at that level at all !! You are quite safe. I get bloods done every 4-5 months and can basically pick what my levels will be.
The big question is what was your level when you stated ?
Have you taken the course of Vit B's that was recommended and listed in the regime ?
Are you taking all of the Vit on the regime ?
I have dropped the calcium as my diet is high in calcium, but, its very important to take everything else.
It took me 2 or 3 cycles to finally get to a relative pain free state, with the Benadryl being a great addition recently with our onset of spring.
I still go thru cycles, I feel when they come, I'm just tapering off one that's hung around for a good 6 weeks. I get the shadows, with the occasional break thru kip 2, and that's as far as they get.   So compared to before I wasn't on the regime, Its an absolute life saver and I can deal with the symptoms I get now very easily.  everyone react differently, some go completely pain free, and others have dramatically reduced symptoms ( like me ).
As far as ramping up on the D3, I had no problems taking a50k dose then 6 days of 20k D3 when symptoms appeared , as I said, that would lift me to about 240 nmol with no intoxication issues at all and generally eased the cluster effects.  I'm a firm believer of those regular blood checks and getting your G.P on side, mine is now convinced of the regime's benefits and see's the results for me over my journey over the last 2 years.
Batch will more than likely chirp in and offer suggestions, My advice, is to stick with it and listen to everything that Batch has to say and follow his advice to the letter !!!!!
good luck
colin

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 1st, 2015 at 5:54am
G'Day Engels,

As Colin pointed out, your 25(OH)D is spot on in the middle of the green zone at 205 nmol/L.  What I suspect may be happening is you've a sub-clinical allergic reaction that's been running for some time... 

By sub-clinical, I'm saying no outward or obvious allergy symptoms...  Just because you haven't noticed them doesn't mean they're not there.  Even people who are relatively immune to allergies still experience them albeit at a low or sub-clinical level.

During an allergic reaction i.e., inflammation, mast cells (part of the immune system) in the skin, lining the nasal passages, lungs and GI tract start releasing histamines. 

During typical allergic rhinitis, also known as hay fever or pollinosis, our immune system overreacts to allergens such as pollen, mold spores or other chemical toxins and we experience a runny or stuffy nose, sneezing, red, itchy, and watery eyes, and swelling around the eyes. Guess what...  The brain is suffering from a similar inflammation during an allergic reaction except it's called neurogenic inflammation.

Here is where an allergic reaction hits cluster headache sufferers the hardest...  When neurons within the hypothalamus and trigeminal ganglia are insulted by histamine from an allergic reaction, they trigger the release of calcitonin gene-related peptide (CGRP) and Substance P.  Both are key parts of the cluster headache pathogenesis.  CGRP triggers rapid neurogenic inflammation and severe pain.

The term ‘neurogenic inflammation’ has been adopted to describe the local release of inflammatory mediators, such as substance P and CGRP, from neurons. Once released, these neuropeptides induce the release of histamine from adjacent mast cells. In turn, histamine evokes the release of substance P and CGRP; thus, a bidirectional link between histamine and neuropeptides in neurogenic inflammation is established.

What all this means is a simple allergic reaction can trigger a chain reaction and self-sustaining perfect storm within the brain producing more CGRP and Substance P than can be down-regulated or suppressed by vitamin D3... hence no response or at best, only a limited response to the anti-inflammatory regimen.  In other words a CH'er suffering from an allergy whether obvious or sub-clinical (no outward or obvious symptoms) becomes refractory to the anti-inflammatory regimen's capacity to prevent CH... 

This same mechanism likely accounts for the CH'er being refractory to most other CH prophylaxis and likely makes oxygen therapy less effective with longer abort times.

Fortunately, I stumbled across a solution for this self-sustaining perfect storm last March during a very heavy pollen fall from Alder and Big Leaf Maple trees that coated my black pickup truck turning it gray. 

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Within hours of the pollen fall starting... it looked more like a bad dust storm, I began to experience symptoms typical of allergic rhinitis...  A few hours later during a nap, the CH beast jumped ugly.  I aborted same with hyperventilation and oxygen therapy, but was concerned like you, that 10,000 IU/day vitamin D3 wasn't sufficient during an allergic reaction...

I began loading vitamin D3 at 50,000 IU/day (chewing the softgels and swirling the contents under my tongue and holding them there for 5 minutes... i.e., sublingual). I also doubled my magnesium intake to 800 mg/day...  After three days on this dosing schedule, the CH beast was still jumping ugly 3 to 4 times a night.

Now you need to understand... that as the guy who developed the anti-inflammatory regimen in October of 2010 and who had remained pain free ever since
(with the exception of a couple 25(OH)D burn down tests a year where I intentionally stopped taking the entire regimen until I got hit...) getting hit like this was a wake-up call...

About that time the clue bird made a low pass and my Good Idea light came on bright and flashing...  TREAT THE ALLERGY !!!

After a few hours researching the pathogenesis of allergic rhinitis and available antihistamines, I selected Benadryl (Diphenhydramine), a first-generation antihistamine that passes through the blood brain barrier to block H1 histamine receptors in neurons throughout the brain and in particular, the hypothalamus and trigeminal ganglia where production of CGRP and Substance P are highest.  Second- and third-generation antihistamines, the "non drowsy" type, cannot do this so will not be effective in blocking the histamine receptors in neurons throughout the brain.

I started dosing at 25 mg Benadryl (Diphenhydramine) four times a day.  Within 3 to 4 hours, my allergy symptoms began to subside.  Within 12 hours, the CH beast was nowhere to be found and I was back CH pain free.

After a few days on this dosing schedule, I reduced my vitamin D3 intake down to 20,000 IU/day and the Benadryl (Diphenhydrmine) down to a 25 mg tablet twice a day.  I stayed on this dosing schedule until the pollen fall was over... ~ another 2 weeks, then dropped my vitamin D3 intake back down to the 10,000 IU/day maintenance dose and stopped the Benadryl (Diphenhydramine).

So there you have it...  The likely reason you've not responded to this regimen and the same reason many of the other 18% of CH'ers don't respond to it either.  As a side note, I've had several of the anti-inflammatory regimen "non responders" and partial responders, start a course of Benadryl (Diphenhydramine) at 25 mg twice a day and report they are now experiencing a pain free response.

There are a few other anti-inflammatory and immune system helpers you can try.  A 1,000 mg tablet of vitamin C taken five to six times a day (every two hours) will help jazz up your immune system and also help quell inflammation.

Why vitamin C?  Vitamin C, also known as ascorbic acid, is a water-soluble vitamin. Unlike most mammals and other animals, humans do not have the ability to make ascorbic acid and must obtain vitamin C from the diet. 

Vitamin C is very safe...  However, like magnesium, if you take too much... you'll get loose as a goose...

Dr. Linus Pauling used to take 19,000 to 20,000 mg of vitamin C a day...  He had lots of critics when he suggested vitamin C doses like this...  but then he had two more Nobel prizes than any of his critics and had outlived most of them when he passing away at the age of 91... 

You can read about the Linus Pauling therapy at the following link:

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The Linus Pauling Institute Micronutrient Information Center at Oregon State University has a very informative section on Vitamin C at the following link:

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"Although the upper intake level (UL) for vitamin C is 2000 mg/day, there is no reliable scientific evidence that large amounts of vitamin C (up to 10 grams/day in adults) are toxic or detrimental to health."

Like vitamin D3 and the prevention of rickets, the amount of vitamin C required to help prevent chronic disease is higher than the amount required for prevention of scurvy.

If you're like me, and read through the entire fascinating link on vitamin C and what it can do for you healthwise, you'll run to check the medicine cabinet... and if there's none there, you'll pick some up at the next opportunity..

Curcumin (Turmeric) is another anti-inflammatory.  400 mg/day should be sufficient.  Just be sure to take it on a full stomach as 400 mg is equivalent to the amount of turmeric you get 3 or 4 curry dinners...

I realize this is a long read... but I hope this helps.  Just make sure you keep your PCP or neurologist in the loop when taking anything new...

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Nov 1st, 2015 at 6:06am
Hey Engels,

I'm similar to Colin, in that I have been on D3 and all the cofactors since January this year, and I too am not fully clear of the Beast. Shadows and Kip 2/3 's mainly, with the occasional serious one thrown in.

I am chronic, meaning I get hit single everyday of the year with no seasonality whatsoever.

The D3 has been a life changer for me too, in that what I deal with now is nothing compared to before. My wife has been on it since April after some surgery and she says the general health benefits are doing her a world of good, and the speed of her recovery was noted by her Surgeon.

So, as Colin says, stick with it, even if it takes time and keep the serum levels monitored.

Best of luck,

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Nov 1st, 2015 at 6:50am
Hey blacklab, thanks for the advice, gives me some hope.  Very interesting you've had to elevate to 240nmol/L. Does that mean you were experiencing severe attacks at 200 but that these disappeared when you elevated to 240?  Are you on the D3 regimen year round or do you just take when you feel a cycle starting - hitting it with the 50K dose then 6 days at 20k?  Once you've done this and/or achieved 240, do you then drop back down to 10K maintenance dose? 

I'd still like to understand whether i need to elevate my d3 maintenance dose above 10K to achieve a static serum concentration above 205, which isn't getting me to PF.  Or, should my strategy be use 10K maintenance dose which i accelerate whenever i get breakthrough clusters (50K x 1day; 20K x 6days; dropping back down to 10K maintenance)? I must say that in the 2 days since inflating my D3 from 10K to 20K, the number and severity of attacks has dropped.  In some instances, awoken by a few false alarm shadows that may or may not have built, so i aborted with oxygen anyway.   

I sure am on the full monte D3 regimen:

Swisse Men's Ultivite 50+ 1 tablet/day
Vitacost Vitamin K2 (MK-7 only) 200mcg/day
Citracal calcium citrate  630mg/day (+ the 10mg orotate in the ultivite)
D3 10,000IU/day (now elevated to 20,000 IU)
Fusion Health Organic Magnesium (140mg glycinate, 120mg citrate, amino acid chelate 120mg, aspartate 20mg = total mg per day of 400mg)
Healthy essentials super B (B1= 100mg, 2 = 100mg, 3 = 100mg, 5 = 100mg, 6 = 82mg, 12 =200mcg  plus folic acid, biotin, choline bitartrate, inositol)
Swisse high strength wild fish oil 3000mg (540 EPA, 360 DHA)
Planetary Herbals Full Spectrum Kudzu 3000mg (4 tablets but all taken at the same time and i now remember seeing something about the need to spread three doses over the course of the day)

I've also just started taking a 2 week regimen of liquorice and skullcap extract (not tincture, which i am attempting to source).  Given the particular formulation, i've been taking this once per day too rather than splitting it into three doses over 24 hours, which i will rectify once the tincture arrives.

Looking at all of this - i feel like i should probably strip everything out except the D3 regimen to see if i can get that to work properly.  But when the attacks hit, i just want to throw everything at it.  Hugely unscientific.  At times, feels a little like throwing peanut shells at godzilla. 

Thank God for this community

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Nov 1st, 2015 at 6:07am
My goodness, thanks for the support everyone.  And, BATCH,  you're a  genius.  I am fully allergic to something at the moment - the past few days (could even be weeks) i've been getting sporadic itchy throat, which drives me nuts.  I reckon the biggest culprit will be a dirty air conditioner unit in my bedroom. We've just started turning it on overnight because it's heating up here in Aus and, truth be told, it's got a bit of a funk to it.  No doubt inoculating myself with billions of fungal spores and God knows what every night. Your theory fits my pattern.

You know what?  I'm driving to the late night chemist right away to get me some Benadryl and Vitamin C.  Tomorrow you'll find me cleaning the air conditioner filters!  Serve me right for stewing in filth every night.

Thanks again. I shall report back (and i'm not just saying that)

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 1st, 2015 at 3:56pm
Hey Engels,

Good move picking up the vitamin C and Benadryl (Diphenhydramine)...  You may need an Rx for the Diphenhydramine hydrochloride down under as several brands of "Benadryl" sold outside the US use second- and third-generation antihistamines so don't contain Diphenhydramine.  As always, check the label for the "Active Ingredient."

Before you clean your air conditioner, pick up some Lysol Power & Free® and read the following link on how to clean your air conditioner:

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The Lysol Power & Free® contains hydrogen peroxide as the active ingredient so should do a good job killing off mold and bacteria as well as preventing their buildup in the finned evaporator cooler coils, air filter and condensation drip pan.

The compressor on our heat pump in our home in Virginia went out one summer many years ago and left us without AC for a couple very hot days...  The unit was 30 years old so we had a new heat pump and air handler with heating and cooling coils installed. 

When I asked if the heat and cooling ducts needed cleaning, the technician said he would use a disinfectant spray... and he did...  Unfortunately the industrial strength disinfectant he used had the house smelling like sheep dip for weeks...  The hydrogen peroxide should work just as well and be a lot safer in the process.

Take care and please keep us posted.

V/R, batch


Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Nov 1st, 2015 at 7:27pm
Hi Batch

I couldn't get benadryl (diphenhydramine) from the late night pharmacy (will try again today).  However, I sourced Phenargan (promethazine hydrochloride) that also crosses the blood-brain barrier and is a first generation anti-histamine (it made me noticeably drowsy).

Brings up another question or two: 

(A) Is the antihistamine something that can be taken throughout a cycle - i.e protracted dosing for 6 weeks?  I see two potential issues with this (1) drowsiness during the day obstructing the need to work (2) potential liver toxicity.  Last night i took two of the antihistamines and i was really groggy in the early hours.  However, I have taken one this morning and will see whether the ensuing fog is something i could work through

(B) If many of these allergies are sub-clinical/asymptomatic and the allergen is invisible (e.g. fungal spores, unlike the pollen on your car), then it's going to be hard to know when to start and stop the antihistamine.  Do you see the antihistamine dosing becoming a natural part of the d3 regimen for people who identify as allergic or who do not respond to D3 in the normal way? 

(C) phenargan / promethazine hydrochloride is also first generation antihistamine.  The literature indicates its primary use is as an anti-emetic but that it is also indicated for allergy.  What made you specifically select Benadryl out of the list of 17 or so alternative first gen drugs?

Thanks for all your thoughts


Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by blacklab on Nov 2nd, 2015 at 2:10am
Hi Engles,
               Yes, I elevate the D3 when shadows appear, and that usually elevates me to around 240 nmol, I then drop back to 10,000iu after a weeks load up.  I'm due to get tested again, so it will be interesting to see where I have ended up, but past history when I did the same thing, I never ended up more than 240 nmol.
As far as the Benadryl goes, try chemist warehouse, they actually keep the "original type" behind the counter, so you have to ask. There starting to get real particular about selling it. So after I got that bottle, I went on line ( ebay)and ordered the 5o mg pills, from a U.S supplier, cost me about $18 all up, I wondered whether it would get stopped at customs, but it arrived in about a week.  I found by taking the Benadryl at night, 2 hours before bed, it really cleared my nose up and sent me off quickly to sleep. I found that I didn't have to take it thru the day. I used it for about 2-3 weeks, I haven't used it for about a week as it seemed to settle down, at the same time my cycle slowed down and basically finished.  as mentioned, my cycle, was basically 4-5 weeks of mainly shadows, and 1 or 2 kip 2 hits a day, which a red bull killed fairly quickly. So while I'm not totally pain free, my last few cycles have been nothing but a mild nuisance.  I've tried quite a few different extra things, as recommended by batch over the
journey, and slowly but surely, its improved each cycle.
I dropped the calcium last year, as I have a good dairy diet, and when I did, things got better for me. Other than that, the only annoyance with the regime is the " loosness effect "  LOL   I split the doses now, taking the fish oil and magnesium citrate in the morning and that seems to be make thing a bit better.
Its funny, but I can always feel something there, just a tingle or a twinge, waiting for that trigger to set it off, this last one was the abnormal hot weather we had in October, plus the high pollen count we have had, plus, my other trigger, staying up quite late at nights into the wee hours, watching the world cup rugby !!   So I was on a hiding to nothing for October !!!! 
I agree that if you try to many things at once, you wont know what has actually made things better,  Its a hard call when your going thru a bad cycle, but something I think is the best thing to do, try one thing at a time, a process of elimination, especially when you can play with the regime, in regards to titrating up on D3 and waiting for a reaction.
I've been off all other preventatives now since Febuary, when I was on verapamil, which did the opposite thing for me, in regards to everyone saying it was like a lead balloon, for me, both times I was on verapamil, for at least 6 months at a time, I couldn't keep weight on, losing probably 6-7 kilo's while I was on it.   So while I've been soley on the D3 regime, my only other abortive/ preventatives, has been red bull and imigran 50 mg tablets, which are hopeless for killing an attack, but when shadows appear in the wee hours, I take one before I go to bed and it gives me an un interrupted nights sleep every time, I only had to take them 2 or 3 times this cycle, so I don't need to do it on a regular basis. I haven't needed to use 02, for at least 18 months now.
If you need the contact address for that ebay seller for the benadryl, sing out and I'll email you the contact.
hope it continues to improve for you.

colin

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 2nd, 2015 at 2:28pm
Engels,

Good questions...  Please let me start by saying the obvious...  I'm not a doctor, so please talk with your PCP or neurologist, whoever is most familiar with your overall medical history and currently prescribed medications before taking anything new... including a first-generation antihistamine and the anti-inflammatory regimen.

I selected Benadryl (Diphenhydramine hydrochloride) for a couple reasons.  The first is I'd taken it in the past and was familiar with it's efficacy and side effects during an allergic reaction.  It will make you drowsy even taking a single 25 mg tablet a day.  It was also readily available at a very reasonable price.

As to the duration of dose with a first-generation anti-histamine, the general rule is the shorter the duration of dosing the better.  Accordingly, a week to 10 days taking a 25 mg tablet twice a day would appear to be sufficient.

If you need to drive to work and back, one or two 25 mg tablets with the evening meal should provide a pain free sleep and limit the drowsiness in the morning for the drive to work.  Available literature on H1 histamine blockers indicates a single bedtime dose achieves almost as good results as divided doses.

Available literature also indicates liver toxicity does not appear to be a problem with diphenhydramine hydrochloride or promethazine hydrochloride due to their rapid clearance rate, (half-life 8 to 9 hours).  That said, there are warnings about taking first-generation antihistamines with known liver problems, during pregnancy or while breast feeding.

In practical terms, if the source of the allergic reaction is still present, you might need to continue taking the first-generation antihistamine until the pollen count has dropped or obvious allergen source has ceased to be a problem.  Just remember allergic reactions can also be caused by dust mites (they're in your bedding and pillows), animal dander and a host of chemicals including some pharmaceuticals.

Regarding how long to take a first-generation antihistamine... the best course of action would be to "test the water" so to speak, by stopping the first-generation antihistamine after a week to see what happens. 

Here is my logic on all this for what its worth: 

We take vitamin D3 to down-regulate or suppress the production of CGRP and Substance P from neurons in the hypothalamus and trigeminal ganglia to prevent CH.  We know this works for 82% of the CH'ers who take the anti-inflammatory regimen.

Histamine released by an allergic reaction works the other way to trigger the release of CGRP and Substance P from neurons in the hypothalamus and trigeminal ganglia.  This appears to be one of the major reasons why 18% of CH'ers who start this regimen don't respond or only partially respond.

Accordingly, we have two competing biochemical processes and it appears histamine is the stronger of the two so we continue to get hit with CH even while taking vitamin D3.

By taking a first-generation antihistamine that blocks H1 histamine receptors on neurons within the hypothalamus and trigeminal ganglia and in the process, down-regulate or suppress the release of CGRP and Substance P.  This allows vitamin D3 to do its thing through genetic expression to further down-regulate the production of CGRP and Substance P so we can prevent CH.

This begs the question...  What happens if we stop taking the first-generation antihistamine and the source of the allergic reaction is still present?

The short answer...  I haven't a clue...  All I know is I'm a chronic CH'er.  When the pollen fall stopped, I stopped taking the Benadryl (Diphenhydramine) and the anti-inflammatory regimen continued to prevent my CH...

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Nov 2nd, 2015 at 7:59pm
Very interesting.  Thanks Batch and Blacklab.  And, Batch, I totally understand you're not a doctor.  I will be working with my GP on this, but appreciate your perspective nonetheless. 
I took 3 x 25mg Phenargan tablets over the course of 7 or so hours yesterday and slept through with no clusters or shadows.  Similarly, no clusters this morning, though the head was clogged.  So, that is very positive (TOUCH WOOD, is the beast listening?).  I did have a few palpitations yesterday evening and my heart rate was noticeably elevated.  This, together, with an uncharacteristic feeling of depression yesterday daytime suggests that i'd taken too much of the Phenargan ("negativism" is another side effect along with aforementioned heart issues).  I will just try taking one tablet before bed and see where that gets me.  I note that the half life of different H1 drugs is markedly different. Diphenhydramine is 2-9hrs whereas promethazine is 16-19hrs.  I'll speak with my doctor, but won't be dosing up like that in future.

Thanks again everyone for thoughts.  This feels like a really positive development [**TOUCH WOOD, TOUCH WOOD**].  I'll post another update shortly
half_life.png (343 KB | 0 )

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 3rd, 2015 at 8:13am
Engels,

Thanks for the feedback and another datum on the effectiveness of first-gen antihistamines wrt CH prevention with the anti-inflammatory regimen.

My PDR lists the dose of promethazine hydrochloride for allergies at 25 mg qhs (bedtime) so you were over jetting a bit...

The good news is it worked!  Now to find the lowest effective dose...

Take care and please keep us posted...

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Nov 8th, 2015 at 8:18pm
Redskins player misses game due to Cluster Headaches.  Wish there was some way to let him know about this regimen.

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Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 10th, 2015 at 9:55pm
If any of you have a twitter account, tweet Terrance Knighton and invite him to CH.com.  His address is @MisterRoast98 

He needs to know he isn't alone and he may want to know about vitamin D3...

I left a message with the Washington Redskins Team Physician when I saw Slacker's post... No reply so far...

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Nov 10th, 2015 at 10:21pm
I tweeted a link to this thread to both Knighton and his wife.

Here's another article about what he's going through:

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Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 10th, 2015 at 11:43pm
Slacker,

Good on you for reaching out to Terrance!!!

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Mike NZ on Nov 11th, 2015 at 12:25am
I hope he and others with CH see the tweets and come here where they will find a welcome that only people with CH can give with advice that works.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Nov 11th, 2015 at 8:33pm
His wife or GF replied back and said she would check out the thread. Hopefully, she gives it a real chance.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Nov 17th, 2015 at 6:19am
Hi all

Just thought i'd post an update.  The phenergan (promethazine hydrochloride) appears to have worked as an adjunct to the D3 regimen.  I'm taking 1 x 25mg tablet just before bed.  Prior to supplementing with phenergan, the D3 regimen alone was insufficient to block my episodic cycle this year.  In fact, it was my worst cycle to date with 4-6 attacks per day.  However, a few days after getting on the phenergan, my attacks dropped to zero.  I'm still hugely allergic to something in the environment, but haven't had clusters for two weeks now.  Interestingly, my allergy is pretty severe this year and this may be linked to the severity of the underlying clusters.

I had a mini-binge of 8 little squares of white chocolate the other evening around 9pm (lulled into false sense of security) and developed low kip2 cluster at just past midnight, indicating i'm still in-cycle.  Given chocolate is vasoactive, this was probably a stupid idea.  Hey ho.

I need to find the source of my allergy though as i'm not keen to keep taking phenergan long term - back of pack it says not to take consecutively for more than 7-10 days and i'm on day 16 now! This raises the same question - what do cluster sufferers do when there's concomitant, long term allergy at play.  I will speak with my GP, but wonder if alternating between different first generation antihistamines would be less harmful. I'm also going to schedule a broad-spectrum allergy test to determine what i'm allergic to.  Beyond the first night when i clearly took too many phenergan (3 x 25mg doses over the course of a 12 or so hours = cue heart palpitations and strong, negativity), I've had no side effects though.

Thanks again, all, for magic support. I'll drop the phenergan in a day or two (after some industrial hoovering) to see if i can make it to the end of this cycle on d3 alone. 

Cheers all

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Nov 17th, 2015 at 6:42am
Correction: Phenergan back of pack says not to use for SEDATIVE purposes for more than 7-10 consecutive days.  There is no such contraindication listed under relief of allergies.  So, jury's out about longer term usage.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 17th, 2015 at 12:28pm
Hey Engels,

Thanks for the wonderful feedback.  I've been tracking several CH'ers who started taking a first-generation antihistamine as an adjunct therapy to address an allergic reaction in order to kick start the anti-inflammatory regimen's capacity to prevent their CH. 

Although the number of CH'ers who have started a first-generation antihistamine on top of the anti-inflammatory regimen is still too low to provide statistical power, the results have been surprisingly high... like a 100% favorable response so far...

That's good enough for me to add a new section to the first page of this thread discussing the use of a first-generation antihistamine as an adjunct therapy.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Visperas on Nov 17th, 2015 at 5:41pm
I'm afraid I might be the one to break that 100%. Well, I don't know if an alergic reaction is what is nulifying the power of the D3. All I know is that the regimen worked wonders for months but aprox a month ago it stopped working. I've already tried the Benadryl and it doesn't seem to do the trick. The details are on this thread: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by MDR on Nov 17th, 2015 at 7:21pm
Visperas It might have something to do with the time change just my 2 cents worth,

Mark.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Nov 21st, 2015 at 12:46am
Do you guys think it's OK to take 25 mg of Benadryl during the day and 50 mg before bedtime or is that overdoing it?  These Santa Ana winds are killing me.

I normally take 50 mg before bed but I was getting hit in the afternoon so I decided to split the dose by taking 25 mg at noon and 25 mg at night.  But then I was getting hit during the night again.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 21st, 2015 at 8:03am
Hey Slacker,

Good question.  I've checked several sources and 50 mg Benadryl (Diphenhydramine) every 12 hours appears safe... Check with your PCP to make sure and be careful if you need to drive.  This much Benadryl will make you drowsy.

In addition, you might want to pick up some Curcumin (Turmeric) tablets...  400 mg/day taken with the largest meal of the day should help.  Curcumin has both anti-inflammatory and antioxident properties.

I've a long time friend, fellow fighter pilot and squadron mate who takes 400 mg curcumin a day along with a tablespoon of coconut oil to increase curcumin absorption.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Nov 21st, 2015 at 9:08am
Thanks Batch.  Will do.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Nov 22nd, 2015 at 3:40pm
Hi all,

Here's my (slightly more than) 1 month update. It is somewhat detailed, because I really want anyone who might benefit from my situation to have as many answers as possible to help them decide if it could help them, too.

Quick recap:

Been on the Batch D3 regimen since Sept. 26th, (the day I had a level 10 CH and had to go to Emergency at the hospital). I had taken my usual Zomig 5mg nasal spray, and a couple of extra strength Advils, but to no avail: even after 15-20mins, I was still suffering, albeit at about a level 8. At the hospital, they gave me a cocktail of pills which I probably took too late to be sure they aborted my CH. However, the Emerge doctor did also give me a prescription for the two main medications in the cocktail: Tramadol and Naproxin. Tramadol is a narcotic-like pain killer, but it's the Naproxin that will be coming back into this story shortly.

In addition, there were two other health issues I had been noticing. The first seemed pretty minor. For many years, probably around 20 years, I had slowly noticed that the frequency in my urge to urinate had been increasing to a point where I thought it was not normal. This urge had been waking me up in the middle of the night, often two or three times, but my doctor never really bothered to follow up with this, and since it didn't actually seem to be a real problem, I ignored it. I mention it because it will come again during the D3 regimen. The second and more worrisome health problem I had noticed was that back around the time I went from being an episodic CH sufferer to a chronic CH sufferer last August, I had also noticed that I would wake up with stiff and sore finger joints in my right hand. As I was primarily focused on dealing with my CHs, and I am loathe to jump to conclusions, I didn't see a doctor about the hand joint pain until this past August, when I was diagnosed with simple arthritis. I did note that the hand pain coincided with the transition to chronic CHs, and once again, this hand pain will come back into the story lower down!

Since starting Batch D3 regimen:

After starting the Batch regimen, and taking the D3 religiously, I went for about 3 days with no CHs. Then, by day 4, I was getting CHs, but much weaker ones. I was also supplementing with additional D3, but it didn't stop the CHs altogether. So, after reading again about COX-2 and how its production can be inhibited by NSAIDs like Advil, and also after reading Batch's recommendation for Benadryl to a CH sufferer who also was dealing with allergies, on Sept. 29th, I started to supplement my D3 regimen with 50mg Benadryl and 2x400mg Advil, just to see if it would work. The results were very encouraging. The Bendryl and Advil alone were able to halt CHs from manifesting as full headaches every time I took them together! I have no doub that the D3 was greatly weakening the CHs to begin with, but somehow, it just wasn't enough on its own. But with the D3, Bendryl and Advil together, I had finally found a combination that could actually stop the CHs, both from developing into a headache at onset, and as a preventative!

However, the effectiveness of the D3/Bendryl/Advil combination seemed to largely rest on taking the Advils every 4 hours, which is essentially the maximum dosage. So long as I took the Advils every 4-6 hours, I didn't even start to get a CH, but this seemed like an unsustainable regimen. Then I read up on alternatives to Advil, and one that jumped out was Vimovo. It jumped out at me because it is essentially Naproxen (the anti-inflammatory from the Emergency room doctor) plus esomeprazole magnesium, which counteracts the potential of the Naproxen to cause bleeding in the stomach. The nice thing about Vimovo over Advil is that it is a slow-release formulation. You can take only one or two pills a day, rather than every 4-6 hours. So I asked my doctor for a prescription for the Vimovo, and he gave it to me to try for a month.

Since starting the D3/Vimovo regimen:

While continuing the D3 regimen, I started taking Vimovo on Oct. 15th, at first at the prescribed 2 Vimovo (500/20mg) per day dosage, and then I dropped down to 1 per day, as I feel I should take the minimum dosage that works. The results are exceptional. For the first time since I became chronic in August of 2014, I have gone for over a month with no CHs, save for the following exceptions:

1) I got a level 5-6 CH on Oct. 23rd, probably because I had forgotten to take a Vimovo that day and the day before, and likely because I had my first cigarette in months. (If you suffer from CH, you MUST quit smoking. It is almost certainly one of the major sources of inflammation in your body!) I also got woken up from sleep by a level 4-5 CH that same night, and I took a loading dose of Vitamin D3 and 2 Vimovo. No CH again until Nov. 1st.

2) Nov. 1st, got woken up by a lvl 7 CH, this time it was probably the strenuous yoga I did earlier that day which really pulled on a muscle between my right shoulder blade and spine. Since the earliest days of my CHs, I had often wondered if there was a correlation between the CHs and a specific nerve or muscle in my right shoulder. Who knows, maybe when you pull a muscle, it causes your body to produce COX-2? Got woken up by a lvl 7 CH the very next night, too (Nov. 2nd), almost certainly due to the same pulled muscle.

After Nov. 2nd, no CHs. None. Natta!!!! By Nov. 15th, after having gone 13 full days without so much as a real twinge in the head, I decided to try to stop the Vimovo, and see if the D3 by itself could keep the CHs away. On Nov. 17th, two days after stopping the Vimovo, I had just a slight nervy feeling in that part of my head, but absolutely no pain. It was as if I WOULD have gotten a CH, but the inflammation in my body was low enough that it couldn't manifest itself as one. Same thing on Nov. 18th. Just a nervy feeling, but no CH.

On Nov. 19th, I had a follow-up with my Neurologist, and he said that, if the Vimovo and D3 work, keep taking them. I told him about my reservations over the Vimovo as a long-term medication (ie. potential for stomach bleeding/increased risk of cardiac events), but he said that, since I don't have any heart or stomach issues, I should weigh the relative benefits against the relative risks. My quality of life when getting CHs is in the toilet, and if the D3/Vimovo combination seems to completely eliminate CHs, I should stay on this regimen. He was so impressed with my experience on the Batch D3 regimen + Vimovo that he is putting another one of his patients on it, as they had to stop taking Verapamil.

Other benefits of D3/Vimovo:
There is another important benefit to taking the D3/Vimovo regimen. Since starting the D3 regimen back in September, I also noticed that frequent urge to urinate has dramatically subsided. It seems the D3 deficiency had other side effects for me besides CH! In addition, and this is especially noteworthy for me, the pain/stiffness in my right hand has disappeared because of the Vimovo! This is partly to be expected, as Naproxen is also used to treat arthritis, but it is fascinating to me that the very same thing that reduces the inflammation in my joints also reduces the inflammation which causes my CHs. In fact, while reducing my Vimovo intake experimentally, I'd bet that I will be able to use any joint pain in my right hand as a bellwether for whether my inflammation levels are high enough to be at risk for CHs again. :)

At this point, I am still on the D3 regimen, and taking one 500/20mg Vimovo per day, and I am sometimes skipping the Vimovo the occasional day.

So, mainly due to Batch's characterization of his D3 regimen as an 'anti-inflammatory' regimen, it is best to think of CHs not as headaches per se, but as a manifestation of too much inflammation in the bodies of CH sufferers. For some people, this inflammation might manifest as arthritis, for some it might manifest as CH.

Role of sleep in stopping CH:
One final thing I should also point out is the role of sleep in reducing my inflammation. I have known for years that staying up late greatly increased my chances of getting a CH, but for years, I have also suffered from insomnia because I was in a bad marriage which preoccupied me at night, and also, I simply had bad sleeping habits. Luckily, my new girlfriend gave me a Trazadone to try to help me sleep, and those things knock you out so incredibly effectively that I asked my GP for my own prescription. So in addition to the Batch D3 regimen and the Vimovo, I sometimes take a Trazadone to make me sleep early enough to get the full 8-9 hours. I have also been taking a 10mg melatonin supplement before bed in order to ensure a solid night's sleep since Oct. 10th, though generally, I don't take the Trazadone with the melatonin. I recommend the Nature's Bounty 10mg melatonin, rather than the piddly 1.5mg Webber Natural's Super Sleep, as a CH sufferer REALLY needs their sleep, and badly. 10mg will knock you out much more effectively than 1.5mg. In addition, the Webber Naturals melatonin also contains xylitol, an alcohol that actually triggers CHs! So sleep is an overarching, critical component to reducing inflammation, as your body repairs itself when you're asleep. By not getting a good night's sleep, you are increasing the amount of inflammation in your body.

I hope some or all of this information helps somebody. Please feel free to ask any questions or make any comments.

Best,
Greg

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Nov 22nd, 2015 at 5:07pm
Hey Greg,

Great post. I'm delighted that things are working out so well for you.

There's a lot to read there and as its Sunday night here in Ireland, I think I'll go through it again in the morning. I might come back with a few questions then.

Thanks again for sharing your experiences.

Keep well,

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Nov 23rd, 2015 at 11:23am
Thanks Peter for the kind words.

I realize I wrote a novel last post, so, just to summarize. I was an episodic CH sufferer since 2007. I went 'chronic' in August of 2014. I started the Batch D3 regimen on Sept. 26, but added Vimovo (slow-release Naproxin with esomeprazole magnesium) on Oct. 15th. I further augmented my routine with 10mg melatonin, and even the occasional trazadone (very effective sleeping pill) before bed (Oct. 10th) in order to regulate my sleep cycles (the 1.5mg melatonin  are not adequate). I have been entirely, utterly CH free since Nov. 2nd!

What I'm taking that seems to be keeping me CH-free:

1) A single Vitamin D3 10,000IU tablet each day around mid-day after eating lunch. I'm also occasionally (though not religiously) taking a 'For Men' multivitamin in the evening. Once every week or two, I double the dose to 20,000iu D3 for one day.

2) A single dose of Vimovo (500/20mg), always with the Vitamin D3. (I started with the prescribed two Vimovo's per day, but cut it down to one.)

3) A 10mg dose of melatonin before bed virtually every night, to ensure a deep, repairative sleep. I have also gotten a prescription for trazadone, a very effective sleeping pill, but I restrict the use of this to times when I feel I won't be able to go to sleep without something knocking me out. (I think this is a key part of what's working--getting consistent, deep sleep helps your body repair itself and reduce inflammation.)

Note: I keep the Benadryl handy, just in case I have to deal with a histamine response. So far since I’ve started the D3/Vimovo together, I have not needed any Benadryl.

Evidence this is working
:

1) For the first time since August of 2014, I have gone for more than 5 days without a single, solitary CH. In fact, now been 21 days! Utterly CH-free! My last CH was on Nov. 2nd.

2) I can even drink ALCOHOL! I tried my first sips of booze (some strawberry beer) in late October without getting a CH! I also had a couple of sips of beer last night at my in-laws, as my sister-in-law works for a craft brewery, and once again, not the slightest whiff of a CH! :)

A quick note about a new CH trigger:

As I mentioned in an Oct. 5th post (after starting the D3 regimen, but before starting the melatonin/Vimovo on Oct. 15th), assembling some new Ikea furniture seemed to give me a CH the last two times I did it. My theory is that the IKEA particleboard contains significant amounts of Acetaldehyde (which is the same substance your body produces in your liver that triggers CHs, too! The excess acetaldehyde off gasses and dissipates once you’ve pulled the boards out of the packaging, so you can have it in your living space, but it might very well trigger a CH in some people when it’s first being put together.) I looked into this further, and there are indeed significant amounts of acetaldehyde in new particle board, so, you visit IKEA/assemble new IKEA furniture at your CH peril!

Keep well and ask me any questions!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by engels100 on Nov 24th, 2015 at 6:45am
Hi Anubis

Interesting you mention the pain in your right hand.  I've developed joint (left shoulder, left index finger) stiffness, pain and reduced mobility over the last year - and this is despite taking the full D3 regimen (last 8 months) and antihistamine (phenergan, last couple of weeks).  My mum also suffers from arthritis and had really bad headaches, though she was never diagnosed as a cluster head.  I'm still pain free - though may now be coming to the end of my cycle.  At some point i will stop taking both the D3 and antihistamine to see what happens.  Gulp.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Nov 29th, 2015 at 8:41pm

engels100 wrote on Nov 24th, 2015 at 6:45am:
Hi Anubis

Interesting you mention the pain in your right hand.  I've developed joint (left shoulder, left index finger) stiffness, pain and reduced mobility over the last year - and this is despite taking the full D3 regimen (last 8 months) and antihistamine (phenergan, last couple of weeks).  My mum also suffers from arthritis and had really bad headaches, though she was never diagnosed as a cluster head.  I'm still pain free - though may now be coming to the end of my cycle.  At some point i will stop taking both the D3 and antihistamine to see what happens.  Gulp.


Yes, engels100, I found it interesting, too, that my CHs went chronic around the time my hand started to feel arthritic. It was almost like a Rosetta stone for me: since we know arthritis is caused by inflammation of the joints, it 'translated' the pain in my head as also being caused by inflammation of some kind for me. I do want to emphasize that I am wary of staying on an NSAID for a prolonged period of time.

I know Vimovo (Naproxen with esomeprazole) is not ideal over the longer term, so I'm still on the lookout for any other, better kinds of anti-inflammatory that will do the same job of keeping my CHs and joint soreness banished. To that end, I've just started taking serrapeptase. It was given to me by my mum, so it was free, and I'm perfectly willing to try it.

In the meantime, I'm keeping my intake of the Vimovo to the minimum. So far, I've gone all day yesterday and today without one, and so far so good (no joint pain, which does seem to come back after about 4-5 days of no Vimovo).

Also, just to mention, I'm still pain-free! Not a single, solitary CH of any kind since Nov. 2nd. And I was able to have a whole beer yesterday, for the first time in almost two years!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Nov 30th, 2015 at 3:24am
Anubis,

Wonderful news being CH pain free since 2 Nov.  Stick with it and I'm confident the anti-inflammatory regimen will also help prevent most of the joint pain as well. 

I've never been a fan of Naproxen or any of the other NSAIDs for that matter...  They all cause GI tract bleeds...  When you couple bleeds with the other side effects, the risk reward ratio is unacceptable... particularly when vitamin D3 works more effectively in reducing pain due to inflammation with none of the side effects......

Are you taking vitamin K2 MK-7?  The menaquiones MK-4 and MK-7 have the capacity to reduce calcium buildup in joints, arteries and soft tissue.  They also serve as a bone mineral density catalyst building stronger bones.  A 2010 study reported that increased dietary intake of menaquinones (vitamin K2), but not phylloquinone (vitamin K1), is associated with a reduced risk of incidental and fatal cancer.  That's a winning combination of favorable effects in any book.

If the joint pains continue, you might want to consider adding some glucosamine condroiten to the anti-inflammatory regimen.  It can take a few days to a week for it to "kick in," but when it does...  the joint pain goes away in most cases.

I take it frequently... particularly after working out with my chainsaw bucking up large Douglas Fir and White Pine trees for fire wood after the wind has blown them down along (and sometimes across) the driveway ...

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Bucking up the logs with the chainsaw is the easy part...  It's loading the cut logs in the pickup, then hauling them back to the house for splitting and stacking in the woodshed that takes its toll on 71 year old joints...

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Dec 1st, 2015 at 9:48pm
Thank you so very much for taking the time to reply personally to me, Batch. Although I well realize it's before your time, I was thinking of you while I was watching some documentaries about the air war in the Pacific during WWII. Something that would be closer to your time, I wonder, did you ever fly the F104? There's one here in the aviation museum, in RCAF markings, of course! (Sic itur ad astra!)

I agree with you completely that the anti-inflammatory regimen will also help prevent most of the joint pain. You have an absolute believer in me, that the key to stopping CHs cold is to reduce inflammation. That is the strategy that is working for me, and that I am also convincing my neurologist to follow with his other CH patients as well. After hearing my results on your D3 regimen, he has put one of his other patients on it now, too.

I definitely will be discontinuing the Vimovo (Naproxen), as I am extremely wary of the possibility of GI tract bleeds. I resorted to it only because the D3, even in stupidly high levels, was simply not arresting the CHs by itself. I felt I needed to call in the big guns. :) However, I am already weaning myself off of the Vimovo, and will go out and buy some K2 MK-7. For some reason, it's kind of hard to find here in Ottawa, but I will make a point of it, I promise!

My joint pain is basically gone at this point, so I'm certain that I'm doing something right, and I really must say I'm also pretty confident that, in addition to the D3 and the Vimovo (Naproxen), my taking crazy strong (10mg per tablet!) melatonin  before bedtime is also helping tremendously in keeping my inflammation down, as it not only helps me get to sleep, but keeps me asleep all night most of the time, something I haven't done consistently in years.

I will also consider taking the glucosamine condroiten if there's any recurrence of joint pain. I wondered if you had heard anything about serrapeptase? I've heard everything from that there's no evidence it does anything to hearing that it's a wonder substance for reducing inflammation. For what it's worth, I've just started taking it, and I'll see how it goes. As usual, I will report any findings.

Since I live in Ottawa, Canada, I'm afraid there are no large Douglas Firs or White Pines for me to chop up. However, it is only a very short drive to all kinds of parkland with trees, trails, the Ottawa river of course, and the wilds of Quebec. Perhaps if I am lucky, I will have a cottage or cabin of my own one day (I'm 46), and think of you splitting wood at 71(!) and be grateful to you for all the years I'll have had since 46 being CH-free. Thank you once again, from the bottom of my heart, I am grateful to you for publishing your anti-inflammatory D3 regimen.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Dec 2nd, 2015 at 1:05am
Anubis,

Thanks for the feedback. I'm happy to hear the joint pain has gone away...

We didn't have any F-104s in the US Navy, but a few of the Navy Test Pilots who attended Navy TPS Pax River or the Air Force Flight Test Center at Edwards in the 60s and 70s managed to snag a few hops in them. 

I do recall some very exciting dissimilar air combat training (DACT) in the early 70's with RCAF CF-104 Starfighters from CBF Cold Lake, Alberta while I was flying the F-8 Crusader.

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We spent a week at CBF Cold Lake, flying two and three short 30 minute DACT hops a day... and drinking like fish all night...  The debriefs at the O-Club were colorful and by the end of the night, nobody could remember who won or lost... but we did have fun...

The Starfighter couldn't turn worth a hoot, but it sure could accelerate away from the fight... usually straight up... "to the stars" and that made it difficult at best to get off a good AIM-9 Sidewinder shot much less Guns...   The F-104 was essentially a J-79 after burning jet engine with a needle nose, stubby wings, blinding speed and enough gas for two passes...

When the week was up, we moved the entire gaggle down to NAS Miramar, San Diego, CA for another week of  DACT...  The only problem at Miramar was we had to share the RCAF Starfighters with the F-4 Phantom squadrons...

I transitioned to the F-4 Phantom in '74 while at VX-4, Pt Mugu, CA...
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The Phantom had two J-79s and clean bird could go Mach 2... but not as quick as the Starfighters...  They had the trust to weight advantage...

Take care and please keep us posted.

V/R, Batch


Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Dec 2nd, 2015 at 1:14am
Hi Anubis,
I've enjoyed reading your posts and Batch's replies.

The Vit K that Batch recommends as part of the regimen is this one from Life Extension.

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It is usually for sale on iherb.com (U.S) but it looks like they might not have it right now.
The link above is from amazon in the UK but I'm sure there are plenty of other places where it can be got.

All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by lbh on Dec 10th, 2015 at 7:07pm
Hi all,

I posted yesterday on one of the other threads. Would somebody kindly update the state of the art on this regimen? I know it changes some over time and I'd like to go pick up all the cofactors tonight to get started. Getting seriously worn down by prednisone and verapamil and want to give myself the best chance of getting off this stuff in the next 2-3 weeks. Thanks very much for all the great work you do.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by lbh on Dec 10th, 2015 at 7:10pm
Let me just clarify because I think I have steroid brain: it would be really helpful if the leading scholars here would post a list of the vitamins and cofactors in one place so I can buy 'em and start to take 'em. Thanks.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Dec 10th, 2015 at 7:44pm
Ibh,

See photo below. Can't find it in the threads.

This is the most recent I have, within the last few months.

Good luck,

Peter.

image.jpg (978 KB | 11 )

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by lbh on Dec 11th, 2015 at 12:17am
Thanks! Huge help. So what's all this I'm seeing about Benadryl?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Dec 11th, 2015 at 12:25am
Hey IBH,

Sorry you're having trouble finding the latest version of the anti-inflammatory regimen.  I keep the latest version of the anti-inflammatory regimen complete with a photo of the supplements I take updated on page one (half way down) of this thread...  or you can click on the following link and scroll down page one: 

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To save you a little time here is the photo of the supplements I take. If you stick with the brands in this photo you'll be getting everything you'll need.

With the exception of the Super K that I order over the Internet from Amazon, I buy the rest of these supplements at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the internet:

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You're not the only CH'er to ask for a single location for this regimen here at CH.com.  I'm working up a draft of the anti-inflammatory regimen supplements, doses, dosing strategy and other useful information for DJ to post next to the Oxygen Info in the column at the left.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Dec 11th, 2015 at 3:42am
Benadryl is an anti-histamine that can be taken with the D3 Regimen if you are suffering from some allergy or infection that is interfering with the D3 and allowing the Beast to rear its ugly head.

At this point I don't think you need bother with it, until your D3 levels have increased.

You should get your Doctor to check your 25OHD level now, as you start taking the Vits, so you have some idea as to where you are starting from.

Good luck,

P.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Dec 16th, 2015 at 2:55pm

Batch wrote on Dec 2nd, 2015 at 1:05am:
Anubis,

Thanks for the feedback. I'm happy to hear the joint pain has gone away...

We didn't have any F-104s in the US Navy, but a few of the Navy Test Pilots who attended Navy TPS Pax River or the Air Force Flight Test Center at Edwards in the 60s and 70s managed to snag a few hops in them. 

---

The Phantom had two J-79s and clean bird could go Mach 2... but not as quick as the Starfighters...  They had the trust to weight advantage...

Take care and please keep us posted.

V/R, Batch


Awesome pics of you and wonderful anecdotes from your days of flight, Batch! Thanks for sharing!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by mrsbenson03 on Jan 3rd, 2016 at 8:12pm
I am so excited to be starting this today.  As I also have histamine intolerance (chronic hives) and some GI issues going on.  I will keep the Benadryl on hand, but does anyone have any insight on how this protocol may impact histamine release? 

Thank you!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jan 4th, 2016 at 12:24am
Miranda,

Hello and welcome.

I have been on the D3 Regimen for nearly a year now with excellent results. I am chronic, that is to say that I don't get episodes. I simply get hit every day, without fail. It's been like that for nearly 3 years now.

The D3 has reduced the severity of the attacks to a 3/4 on the Kip scale ( read about that on the top left hand side of the page) and quite manageable.

I frequently take Benadryl if I feel an increase in pain levels and/or frequency, as it usually indicates a minor infection or allergy ( for example to pollen in the Spring). Benadryl is the recommended solution in such an event and never caused me any problems.

A word of warning though, it can make you drowsey, so take it in the evening when you know you won't be driving for the rest of the day.

One more thing. It is important that you take ALL the cofactors specified in the D3 Regimen and that you take them consistently, not just when you are in an episode.

Again, welcome and we wish you pain free days ahead.

Keep asking questions.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jan 4th, 2016 at 1:31am
Hey Miranda,

Thanks for the headzup you've started the anti-inflammatory regimen...  Good move!

Histamine is a trouble maker for CH'ers as it can inhibit the preventative capacity of the anti-inflammatory regimen... That's why I suggest a first-generation antihistamine like Benadryl (Diphenhydramine).  It passes through the blood brain barrier to block H1 histamine receptors in neurons throughout the brain and in particular, the hypothalamus and trigeminal ganglia. 

A week to 10 days course of Benadryl at 25 mg every 12 hours should work to suppress the effects of histamine long enough for vitamin D3 to do its magic in preventing your CH.  Just be careful not to drive if possible as Benadryl will make you drowsy.  If you need to drive during the day, take two of the 25 mg Benadryl tablets when you're home for the evening.

This regimen is also very effective in treating IBS and other GI tract autoimmune disorders.  As absorption can be a problem with GI tract issues, try popping the vitamin D3 softgels between your back teeth and swirling the contents under your tongue for at least 5 minutes without drinking any fluids or swallowing...  I do this all the time...  The contents taste slightly sweet and the gelcoats turn into a gummy bear consistency that is easy to chew and swallow.

Taking vitamin D3 this way bypasses the GI tract as it passes directly into the bloodstream with sublingual application. 

Be sure to check with your PCP about taking this regimen and try to get the 25(OH)D lab test.  Knowing your serum concentration of 25(OH)D is helpful in determining how large a loading dose you need.  You'll need a second lab test for 25(OH)D after a month or two.

Once you're comfortable taking this regimen, be sure to get your guy taking it too...  The health benefits are very exceptional.  There's only one word of caution when you and your guy are both taking this regimen...  Fertility goes way up...

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by mrsbenson03 on Jan 4th, 2016 at 9:23pm
Hi Batch!
Fantastic info.  I have been avoiding histamine containing and releasing foods, but still having some the occasional hives, so I do think I will add this to my routine.  Little nervous though-has anybody had any issues with Benadryl revving the cycle up at all?  This has been so manageable so far I am scared to mess it up-lol.

I did have the Vitamin D, 25-Hydroxy test in the middle of September, I was 26.6.  Is this data good or is it better to retake the test right now? 
Also, the Vitamin D I have are the drops instead of the gel capsules, which I do take sublingual. Is this fine? 

One question:  On the loading day-do I just pick any day to do the 50000 IU of this first week (and second week)?

On fertility, luckily my husband is snipped.  While pregnancy could also suppress my cycle, I would much rather take a different route. Ha ha!! :)

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by mrsbenson03 on Jan 4th, 2016 at 10:06pm
Also, I am slowly moving through this entire thread, so forgive me if this has been mentioned before but in certain states (AZ I know for sure) you can actually order your own blood tests through Theranos (in Walgreens clinics).  The Vitamin D-25 Hydroxy cost about $20.  Obviously you still want to work with your doctor and loop them into the regimen, there may be circumstances where people just want to run in and get the test themselves.  This isn't everywhere, but check your state- it just started in 2014 or 2015 here in AZ. 

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jan 5th, 2016 at 2:54am
Miranda,

No need to start the Benadryl (Diphenhydramine) until you've completed the 2-week vitamin D3 loading schedule and then only if you haven't experienced a favorable response with a significant reduction in the frequency, severity and duration of your CH.

The vitamin D3 drops taken sublingual should be ok but most vitamin D3 drops are rated at 5,000 IU per 1.0 mL...  What brand are you taking?  It may be easier to pick up some 5000 IU vitamin D3 liquid softgel capsules.  I take Nature's Bounty 5000 IU Vitamin D3 softgels shown on the left in the following photo...

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The results from your last 25(OH)D lab test are still valid so no need to retest.  The results have likely not changed much since mid September.  If anything, your 25(OH)D serum concentration is probably a little lower by now.

Regarding the vitamin D3 loading schedule... I was going to suggest the 2-week 600,000 IU loading schedule.  However after reading your other post from today, it's apparent you've already started to respond to the anti-inflammatory regimen. 

Accordingly, I suggest you stick with the 10,000 IU/day maintenance dose for another two to three days.  If you're not substantially pain free by then you can start the two week vitamin D3 loading schedule.

The average 25(OH)D response to a loading dose of 600,000 IU of vitamin D3 is a gain of 60 ng/mL above the starting serum concentration. 

For example, if your starting 25(OH)D serum concentration was 25 ng/mL, your total serum concentration should be around 85 ng/mL at the completion of the two week loading schedule.  At that point drop back to a maintenance dose of 10,000 IU/day.  Your 25(OH)D time course response should look like the the 2-week vitamin D3 loading dose schedule (first green curve) in following chart:

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This loading schedule is very safe.  There have been a couple studies where study subjects with a vitamin D3 deficiency were given a single oral dose of 600,000 IU of vitamin D3...  No adverse reactions and no indications of vitamin D3 intoxication... What did occur was their 25(OH)D serum concentration went up by an average of 60 ng/mL above their starting concentration by the third day...  See the following link for the abstract from one of these studies:

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The real take away from this study is the drop in serum magnesium at day three...  This points to the importance of taking at least 400 mg/day magnesium.

You can wait a couple weeks after returning to the 10,000 IU/day vitamin D3 maintenance dose for your serum concentration of 25(OH)D to stabilize then go in for another 25(OH)D lab test.  It should come back close to 80 ± 5 ng/mL.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Jan 29th, 2016 at 9:30am
*** A 3 month update on Vimovo (naproxen with esomeprazole magnesium)/10,000iu vitamin D3/10mg melatonin ***

I was an episodic CH sufferer since 2007, and I have been a chronic CH sufferer since August of 2014. Since starting a regimen of Vimovo, a 10,000iu vitamin D3 tablet, and regulating my sleep cycles with 10mg melatonin tablets, I have not had a single CH since Nov. 2nd! It has been 100% effective!! No, I'm not exaggerating! NOT ONE CH since I started taking it!! So I just HAD to tell you all!

I have been taking 1 tablet (500/20) of Vimovo most days since Nov. 2nd, generally just after lunch or dinner, along with a 10,000iu Vitamin D3 tablet. Those are the only consistent supplements/medications I've been taking (besides the 10mg melatonin) so I know my pain-free period has to be the result of the Vimovo, either alone or in combination with the D3. The D3, even when I was taking it as part of the full Batch D3 regimen, was simply not stopping my CHs, (although I believe they were somewhat reduced in intensity). The key was that I knew Batch was onto something with the anti-inflammatory approach. So I looked further into anti-inflammatories, and of course, came across the literature on NSAIDs. Normally, NSAIDs such as Ibuprofen take far too long to work once you start to sense the onset of a CH. But I wondered, as a now chronic CH sufferer (I was getting 1-2 every day, and sometimes even 3 in a 24 hour period), what would happen if I took an extra strength Advil (Ibuprofen) once every 4-6 hours (maximum dosage) for several days. Would I get a CH? The answer was no! I did not get a headache so long as I took the Advil every 4-6 hours. But of course, you can't take Advil every 4-6 hours forever. So I looked at other treatments in the NSAID family, and quickly came across Naproxen.

Naproxen had been one of the emergency room 'cocktail' pills I had been given at the hospital when I had to be admitted back in September of last year with a force 10 CH (a CH so strong, even the normally somewhat effective Zomig 5ml nasal spray couldn't put a dent in it, and one which kept going, even after an hour!), and had started to feel better very quickly. At that time, I had written off any of the pills in the 'cocktail', and figured the CH had just petered out on its own. But armed with the knowledge that continuous dosing of Ibuprofen had blocked any CHs for 5 days solid, I was encouraged to try Naproxen. However, Naproxen by itself is also problematic when taken over time, due to the potential it has to cause upper gastro-intestinal tract bleeds. I was somewhat discouraged, but luckily, I came across a version of naproxen called Vimovo, which comes with another ingredient called esomeprazole magnesium which mitigates the stomach bleed potential of the naproxen, and is considered safe for long-term usage for most people. In addition, the Vimovo is a slow-release formula, which lasts for 12-24 hours, instead of Ibuprofen's wholly inadequate 4-6 hours. Aha! I will try this Vimovo, I thought, and see if it can also stop my CHs! I lucked out and got a quick appointment with my specialist, who agreed to give me a prescription for Vimovo. I started taking it on Oct. 15th, and I also focussed hard on getting myself to sleep before midnight every night possible (as I've always had trouble falling asleep). I even got a prescription for Trazadone (an anti-depressant which also works very well as a sleeping pill) to make me fall asleep when necessary, and I started taking 10mg melatonin tablets to keep me asleep. (Although I only rarely use the Trazadone, I've been taking the 10mg melatonin almost every night since late October. If you take them together, you'd better not have to be somewhere in the morning! They REALLY knock you out!) I got 5 CHs from Oct. 15 to Nov. 2nd, but after Nov. 2nd, none at all!

Vimovo dosage

I have been taking only 1 Vimovo a day, although the maximum dosage on the prescription is 2/day, which is great, since it seems to have power to spare for stopping CHs! I have also been experimenting with skipping Vimovo tablets, and I've gone up to 5 days before the soreness in my hand and an extremely faint shadow in my head warned me I'd better resume taking them. For me, the Vimovo has been so effective, I even get warnings to resume them BEFORE I ever get a CH!!! How awesome is that?!!

Although there are some health considerations/concerns with the longer-term effects of Naproxen, they are entirely manageable for most people, and from what I have read (and been personally experiencing) significantly less worrisome for most people than treatments such as verapamil, which slows your heart to the point that you must get tested before and during the time you are on it, made me extremely tired (I could barely climb small flights of stairs) and mentally dazed at the dosages which seemed to be required for mere partial efficacy. Considering I am a relatively fit 46 year old, the verapamil, with only questionable efficacy and a seemingly dangerous propensity to slow my heart down to the point I couldn't exercise properly seemed out of the question.

Role of melatonin/sleep regularity

I don't know just exactly how much of a role the 10mg melatonin and the improvement in my sleep regularity is playing in all this--probably quite a bit--so I can only say that if you try the Vimovo/D3 treatment, and you're still getting any CHs, you really should get serious about taking strong melatonin tablets every night (mine are Nature's Path 10mg - the 1-1.5mg ones are nowhere near strong enough to keep me asleep effectively) to help you get a good sleep, as this almost certainly reduces inflammation in your body, too.

Anyhow, this is such fantastic news that I am going to start a new thread on the site for this. Please, if you are a chronic CH sufferer, ask your doctor/specialist about getting a prescription for Vimovo. Your CH's CAN be stopped dead for good!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by blacklab on Jan 30th, 2016 at 1:21am
Hi annubis,
                Firstly I'm glad you've managed to get to a pain free state, that's fantastic.
Regarding Vimovo, especially with reference to being less worrisome than Verapomil, I'm not a doctor so I googled it and there are some serious side effect issues to be considered here, far more than what Verapomil appears to have. While I don't doubt its effectiveness it is having with you, my doctor classed it as a " dirty drug" when I asked about it, she said the variables of issues that it can cause make it quite a selective anti inflammatory. Now I know probably most of the drugs we cluster sufferers swallow have a " risk" factor, batch has put up here a list several times of deaths caused by most of them.
My only concern was the possible side effects it lists, which pretty well covers most of the major organs, as well as being those over 50 years old, high blood pressure, asthma sufferers, smokers etc. They list the proton pump as being used to lessen the stomach acid to stop ulcers but don't mention that it stops bleeds, infact the warning explicitly warns that a possible side effect of Vimova is bleeds, as well as, kidney and liver function.
Now I know you said that it can be managed in most people, as I'm sure you are being and I'm glad to hear you've managed to become pain free from being chronic.
I know what it's like to try and break that continual cycle of pain.  Early on, I was offered a drug, I cant for the life of me remember the name, but my neurologist called it a "dirty drug" its success rate in keeping sufferers pain free was high, you could only be on it for a maximum of 6 months at a time, during that time you had to have both liver and kidney function tests, gain weight and possibly loose hair  !!and  if you remained on it any longer than that, fibrosis of the heart and liver were high risk !
For me, that was just to many potential risks.
The melatonin side of things is something I've not done yet, Its only available under doctor prescription here and there quite stand offish about it when you ask. But for along time people here have touted its effectiveness. Cluster headaches and sleep are related, its connected in a big way, whenever my sleep is interrupted, Bang, I'll get hit.
Sorry if I was sounding negative about Vimova, I read your post and was immediately interested in something I hadn't heard about, that someone was having success with ! 
  But for me, over 50, have had asthma, a smoker, that has had an issue with stomach ulcers,   to many risks.......
But for those that could handle it,  well, anythings better than a cluster cycle !!!
Keep us informed on how you go with it over the duration.

colin

   

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by SouthernCluster on Jan 30th, 2016 at 12:18pm
After nearly 3 years of PF living since my last cycle, using a maintenance dose of 5000 IUs of D3, had a CH last Saturday night. Dusted off the Oxygen tank and worked well to limit to <10 mins per headache once or twice a day. Immediately increased the D3 dose to 30000 IU daily.  Plus sitting in the sun right now (finally, as it's been mostly raining for weeks).  No alcohol for the weary!  Had to get the tanks refilled - what a PITA...neurologist insists on seeing me since it's been so long (thanks to Batch) before he renews the O2 script - but persistence paid off and I've got my supply in advance of the appt.  seems like what I eat really is a trigger....especially chocolate and sugar. Do any of the threads discuss this? Doesn't seem to be an easy way to find only the useful threads with a lot of activity.  Interested to know what, other than alcohol, to avoid during the cycle.....thanks.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Hoppy on Jan 30th, 2016 at 6:06pm
[smiley=wow.gif] their are so many that effect different folk, for example.
For me, it's all processed foods, including dairy, for others it's Perfume and all chemicals including the fumes from fire lighters when starting a BBQ. As for the chocolate which is also a trigger for me when in a cycle is not the cocoa, but the chemicals they add to it are the culprits.

Hoppy

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by mrsbenson03 on Jan 30th, 2016 at 8:20pm
In addition to the anti-inflammatory regimen that I started 3 weeks ago, I cut out pretty much all inflammatory foods. Sugar (outside of fruit and limited that the best I could) all grains, all nuts, seeds, legumes, dairy and of course gluten. I followed the autoimmune paleo diet, and even limited some of the foods that are anti-inflammatory, but are histamine containing or releasing.  Ultimately, it only made sense to me that if an anti-inflammatory vitamin regimen has found to be successful-then eating inflammatory foods could be counterproductive.  Lost 11 pounds-so I guess that's an exciting side effect of trying to abort my cycle.   One awesome thing that I noticed about the regimen is that it really seemed to help with cravings, probably because my body is getting the nutrients it needs. 

I am pretty sure that my typical 6-8 week cycle has now been shortened down to 4 weeks (I am pretty sure I am done!) but beyond it being shortened, it was unbelievably mild and mostly had shadows with very few true hits.  I was using Indomethacin and Benadryl for about 10 days, but jumped off as soon as I could.  NSAIDs make me incredibly nervous, really most pharmaceuticals do. 

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Mike NZ on Jan 31st, 2016 at 1:05am

mrsbenson03 wrote on Jan 30th, 2016 at 8:20pm:
Lost 11 pounds-so I guess that's an exciting side effect of trying to abort my cycle. 


That is pretty good, but from my experience nothing compares to the weight loss I had from topamax, but then that was from forgetting to eat as it fogged my brain up so much.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Feb 2nd, 2016 at 1:20pm
A detailed explanation because you deserve details

Since a lot of responders seem to be skeptical about the Vimovo/D3/melatonin approach, I decided to explain how I arrived at it in the first place.

BlackLab, I completely understand that there will be people who can't take Vimovo (Naproxen+Esomeprazole Magnesium). My comment about Verapamil is based on personal experience, as well as my own neurologist's opinion. The fact that I had to get regular blood pressure tests just to be allowed to start and continue taking it should give you some idea of how potentially dangerous it is. My GP was very concerned about me trying Verapamil, and by contrast, she didn't bat an eyelash at me taking Vimovo. Verapamil wasn't very effective for me anyhow. I had to take it at the maximum dosage of 960mg (very nearly the maximum permitted dosage of 1,000mg) in order to see any changes in my CH frequency at all, and at that dosage, I was starting to have trouble concentrating and physically exerting myself. Even climbing a small staircase was wearing me out. I considered that unacceptable, as I'm a relatively fit 46 year old. In the end, Verapamil didn't even completely stop the CHs, so what was the point? Vimovo, by contrast, does not cloud your brain or make you tired/unable to exert yourself. You are entirely yourself, physically and mentally. It has had no more noticeable effect on me than taking an Advil: basically zero. In addition, the naproxen in Vimovo is considered much less associated with cardiac effects than other NSAIDs, and for me, the esomeprazole magnesium negating the potential of naproxen to cause stomach bleeding potential renders it safe enough for me, and clinched the deal as a potential treatment.

Obviously, if you have any of the medical conditions or risk factors mentioned by the manufacturer of Vimovo, you will need to speak with your doctor before considering it. Now that I'm CH-free, I am going to look around for possible alternatives to Vimovo. But I felt it was my civic duty to report what led a chronic sufferer to a CH-free experience with Vimovo to other CH sufferers. Just a note to those nattering at me about Vimovo: If you're not chronic, you have the luxury of knowing the cycle you're in will probably end. When you're chronic like I was for over a year, the possible side-effects of taking Vimovo seem piffling, as your quality of life is in the toilet. You want the pain to stop, and you'll do whatever it takes to make it stop. What I'm offering is advice on possibly the least dangerous way to do this there currently is, so please bear this in mind when sniping. The idea is not to stay on Vimovo for the rest of my life, but to use it as a 'big gun' to just make the damned CHs stop and stop for an extended period of time. On this count, it has, in combination with the rest of my routine, been 100% effective. Note that I said '100%' and not some lower figure. I have had NOT ONE (not even a little, tiny level 1 CH--even that sensation which preceded a CH and lingered after the pain left, or shadowing, is now absent) in 3 months on this routine.

I do think the Batch D3 regimen is on the right track--the anti-inflammatory track--it just wasn't quite effective enough on its own for me, and that's why I'm posting this supplemental anti-inflammatory treatment in this thread. I don't know if Vimovo 500/20s would stop CHs by themselves, as I haven't tested that, but as a major component of an over-all anti-inflammatory routine, including a rigorous attention to regulating my sleep patterns with strong (10mg) melatonin tablets, I'm merely reporting that I'm CH-free, and I wasn't CH-free on just the D3 regimen after over two months of meticulously following it.

The story

So, after a month and a half of taking the full Batch D3 regimen, and finding that it was not stopping my CHs, I felt I had to resort to some kind of anti-inflammatory supplementation. I based my research on the basic premise behind Batch's regimen, which is that CHs are caused by an inflammation response in our bodies. After all, many people had reported success with the Batch D3 regimen, it just hadn't been as effective for me, and several others in this thread have also reported less than stellar efficacy.

What actually causes inflammation?

Since many had reported success using Batch's anti-inflammatory D3 regimen, I believed the essential approach was sound, but perhaps, just not potent enough: that CHs are caused by inflammation, and specifically, inflammation of the tissues surrounding the trigeminal nerve. I believe that during a cluster attack, the tissues around the trigeminal are swelling, constricting the the nerve in much the same way that a boa constrictor crushes its prey. The immediate question for me as a victim of this torture was simply, what is the proximate cause of this inflammation? What makes your tissues around your trigeminal nerve swell? My reading indicated that prostagladins are responsible for tissue swelling, and that there are two things in your body that produce prostaglandins:

COX-1: responsible for "baseline levels of prostaglandin", and COX-2, which produces additional prostaglandins through "stimulation". (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE)

Bingo! COX-2 is produced on demand by your body in response to tissue stress. In other words, put simply, it's COX-2 that makes your thumb swell if you bang it with a hammer, and my reasoning is that somehow, in CH sufferers like us, SOMETHING is causing the production of too much COX-2, likely on a circadian cycle (or a messed-up circadian cycle) of some kind, and over-production of COX-2, and consequent over-synthesis of prostagladin is causing inflammation in the tissues surrounding our trigeminal nerve.

An arthritis aside

In my case, I also 'lucked out' (if you can call arthritis of any kind 'lucky') in noticing that my right hand joints were starting to get arthritic joint pain around the time that I went from episodic to chronic back in August of 2014. For me, this was another clue that Batch was on the right track with an anti-inflammatory approach. After all, arthritis of the type my doctor says I have is caused by inflammation of the joints. Hmmm. Inflammation! COX-2!

Reducing your COX-2 level is the key


So the issue for me quickly became, if my body is over-producing COX-2, and that's causing excessive prostaglandin production which is now giving me arthritis and CHs, what will inhibit that? Since the vitamin D3 regimen (D3 helps to inhibit COX-2's catalysation of arachidonic acid into prostaglandin) was not eliminating my CHs; (at best, they were somewhat milder, and almost as frequent) I decided it needed some help. If even extremely high doses of D3 were still not sufficient to stop my CHs, perhaps I simply had far too much COX-2 in my system to begin with. I am chronic after all. So I decided I had to find something that would reduce the amount of COX-2 in my body in the first place: to look for a 'big gun' that would work in partnership with the D3, to help push down my inflammation levels even more and keep them down: a knock-out blow, so to speak, and NSAIDs are that 'big gun'.

NSAIDs are known, effective inhibitors of COX-2 levels. They don't reduce COX-2's ability to produce prostaglandin like D3 does, instead they reduce how much COX-2 you've got in your body to begin with. As I've already mentioned, just as a test for my theory that inhibiting COX-2 production should halt CHs, I experimented on myself by taking two extra strength Advils (Ibuprofen) every 4-6 hours continuously for 5 days. In the past, and even at the very beginning of my CH odessey back in 2007, I had tried taking Advils to deal with the headaches, but of course, as I quickly discovered for myself, and as my specialist subsequently confirmed, orally-administered Advils don't kick in quickly enough to prevent the onset of a CH (although they did seem to help once they did start to take effect--but of course, I was never really certain it was the Advil that curtailed the duration of a CH, or if the damned thing had just ended on its own), so like all of you, I had long-since abandoned Advil as an effective treatment for a CH onset. However, what I wanted to find out for this experiment was, would taking Advil on a continuous basis, ie BEFORE I even get the sense of a CH onset PREVENT the CH from happening. So I timed the Advils to approximately an hour before I expected the next CH. This started pushing the CHs around in terms of timing, but didn't stop them altogether, so I decided to go all-out and just take them every 4-6 hours (maximum dosage, though hospitals regularly administer much higher doses of ibuprofen for certain conditions) continuously, for a set period of 5 days. I've always had a cast-iron stomach, so I knew this would not be an issue. Note that immediately preceding this experiment, I was getting at least 1 CH each and every day (often two or even three in a 24 hour period) for over a year, with only the occasional exception, and even then, I never enjoyed more than one skipped CH in a row. The round-the-clock, maximum dose Advil experiment worked like a charm! I did not get a single CH for those 5 days! Could be fluke, I thought. I had been let down many times with different treatment approaches, but I decided to pursue the notion that it HAD worked, just in case.

Round the clock Avil works, but what is a more sustainable NSAID?

So it was then that I decided to find the most sustainable form of NSAID that would do what the Ibuprofen was doing, and based on my own evaluation of the risks, and the fact that Vimovo was both naproxen accompanied by a protein pump inhibitor, esomeprazole magnesium, and was designed as a slow-release, coated formula, I chose to try Vimovo. An interesting coincidence, is that Vimovo is normally prescribed as an arthritis treatment! So I made an appointment with my neurologist and told him my idea. He said that, as he did not have anything known to be effective as a treatment for chronic CHs, he was willing to write me a prescription for Vimovo. I went out and filled it that same afternoon, and started taking the maximum dosage of 2x500/20mg Vimovo every day on Oct. 15th, while also continuing to take 10,000iu Vitamin D3, a Centrum multi-vitamin, 10mg melatonin each night after sundown, and making myself go to bed between 9-12am, even if I had to also take a sleeping pill (Trazadone in my case.) My symptom diary says I had 9 CHs from Oct. 15th to Nov. 2nd, and then nothing. I have not had a single CH since Nov. 2nd of 2015 (I am not exaggerating--I mean not a single, solitary CH, not even the sense of a strong shadow, although I've noticed a couple of very minor shadows when I have tried going for more than 4-5 days without any Vimovo).

Do I think this is the magic cure for CH, and no further work needs to be done? Of course not. Is it a substitute for the D3 regimen? No. But if you can take it (ask your doctor/PHP) and especially if you are chronic, this may be the only thing that gives you your life back, as it has done for me.

Role of regular sleep

As part of a comprehensive, all-out assault on anything that could cause inflammation in my body, in addition to the Vimovo, I also decided to get very serious about regulating my sleep schedule. Ever since I was a teenager, I have had trouble falling asleep consistently at a set bedtime (I've had enough experience since my first definite CHs in 2007 to know that staying up late almost guaranteed CHs/stronger CHs). So I decided, in addition to taking the Batch D3 regimen, and the Vimovo, to get something that would knock me out to sleep, if necessary (trazadone), and something that would keep me asleep if I didn't take a trazadone (melatonin). To further guarantee sleep success, I even got a prescription for Tramadol in order to eliminate the possibility that a CH might wake me up an hour into sleep. I only took 2-3 of these over the course of the preliminary period Oct. 15th-Nov. 2nd. They are an opioid, so not recommended for any sustained use, but the sure as hell kept me asleep when a CH might well have woken me up!).I had found that the 1mg or 1.5mg melatonins were not strong enough to keep me asleep, so I found 10mg melatonin tablets at Costco (Nature's Path 10mg). These do an admirable job of this.

So my approach from Oct. 15th of last year can be summarized as:

1) Daily use of Batch D3 regimen (10,000iu of Vitamin D3 if nothing else).
2) 2 Vimovo 500/20mg per day, always with meals, while trying to break the chronic cycle, then 1 Vimovo 500/20 (or less) for maintenance. (I am still experimenting with how many days I can go without the Vimovo, just taking the D3/melatonin--I can now go several days at a time before sensing any shadows; that I should take a Vimovo).
3) Sleep regulation, using 10mg melatonin, and occasionally, using trazadone to make me unconscious if necessary. (I even got a prescription for Tramadol in order to help me sleep--only took 2-3 of these over the course of the preliminary period Oct. 15th-Nov. 2nd, to keep me asleep in the event of a CH). This involves going to bed around the same time and getting up whenever you need to, but sleeping in is absolutely recommended whenever possible. You can never get 'too much sleep'. That is a myth. Your body will never sleep longer than it needs to! This is important!

It took about 18 days to completely stop the CHs, but after Nov. 2, not a single CH. I scaled back the Vimovo to 1 500/20mg tablet per day, and have tried 2 or 3 times cutting out the Vimovo, and just taking the D3+multivitamin and the sleep regulation routine. So far, no CHs, but I have resumed the once daily Vimovo whenever I have sensed a shadow, which is also often accompanied by additional arthritic soreness in my right hand. I am now experimenting with taking only 1 Vimovo whenever I have the vague sense of a shadow, and then going more days to see how long I can go before the next vague sense of a shadow. Note that these are not full-on shadows, like I would get before an actual attack. These are even less intense that those. They're more like a hint of a shadow, which is more than enough!

All I know is that this Vimovo/D3/melatonin routine has worked flawlessly for me for over three months now. Not a single CH. I don't know how much of a role the various parts of my routine play in the cessation of my CHs, but probably, all of them are needed. It's possible there is a synergy between the D3 and the Vimovo. I have not tried stopping the D3, so I don't know.

Believe me, as a fellow CH sufferer, I would not lie about my results to fellow sufferers. What would be the point? I promise that if anything changes, and the treatment routine I'm following suddenly proves itself ineffective, I will update everybody. I don't know how helpful this will be for episodic sufferers, though I'd venture to guess that it will work for you, too. But if you are a chronic CH sufferer and you can do what I'm doing: if you can get approval from your doctor for Vimovo 500/20mg, and you can take 10,000iu of D3 and get yourself to sleep on a regular sleep schedule, using melatonin and/or something even stronger whenever necessary, to make yourself sleep, you owe it to yourself to try this for at least a couple of weeks. I promise it will not be a waste of your time.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by anubis44 on Feb 5th, 2016 at 12:49pm
Just another quick supplemental information update to the D3/Vimovo/melatonin variation I've been taking, and which has been working for me, a hitherto chronic CH'er, for over 3 months.

What causes the inflammation that triggers CHs?

My thought is that CHs are caused by inflammation in the tissues surrounding the trigeminal nerve. The inflammed tissue expands and much like a boa constrictor crushing its prey, the tissue crushes the trigeminal, causing a CH. The chemical that inflames the tissue is prostaglandin. How is prostaglandin produced? To keep this simple, for the purposes of CH, the relevant culprit for prostaglandin synthesis is COX-2.

Now, looking more carefully at both Vitamin D3 and what it does and the naproxen in Vimovo and what it does, here's my basic summary to make it easier for everybody to perhaps understand why these two seem to have been so effective for me when taken together to halt CHs:

-Vitamin D3: basically inhibits COX-2's production of prostaglandins
-Naproxen: basically inhibits the production of COX-2 in the first place

Thanks to Batch sending me an article about Vitamin D3's ability to inhibit prostaglandin pathways, I've been able to get a better overview of what's going on. My theory is that in CH sufferers, like many other inflammatory disease sufferers, the body is periodically overproducing COX-2, possibly in some kind of synch to the body's circadian rhythms. High doses of Vitamin D3 help mitigate the effectiveness of COX-2 in catylising arachidonic acid into prostaglandin, which is very helpful, but if you have a huge amount of excess COX-2 released into your blood, this is only going to have a somewhat limited effectiveness. My idea was to add a 'right hook' to Vitamin D3's 'left hook', and to simultaneously reduce the body's ability to produce COX-2 in the first place. So there's less COX-2 to catalyse arachidonic acid, as well as a reducing the remaining COX-2's ability to synthesize arachidonic acid into prostaglandin. My goal now is to find the minimum effective dosage of Vimovo. Bearing in mind that I was and still am taking at least 10,000iu of D3 everyday, regardless of my Vimovo dosage, I have gone from taking the maximum 2x500/20mg daily for 2 weeks in order to stop the CHs, to 1x500/20mg daily maintenance once they stopped, to taking less than 1 per day now. I can now reliably go for 3-5 days without taking any Vimovo before sensing any shadows, and so far, resuming a single Vimovo dosage has kept me from getting any CHs. I now get a warning shadow long before I ever get a CH! I have not yet tried to see how long I can stay off the Vimovo before I get an actual CH, as I'm sure all of you will understand, I am not eager to get one. However, when I am satisfied that I have been pain-free for long enough that this treatment is incontrovertibly effective, I may try to see how long it would be without Vimovo before my COX-2 levels increased naturally back up to the levels where I once again get a CH.

Just an interesting side note: Massages gave me even worse CHs?

Not only am I a chronic CHer who has been completely CH-free for over 3 months now on a D3/Vimovo/melatonin regime, but there are other factors which seem to make the reduced COX-2/reduced COX-2>prostaglandin anti-inflammatory theory 'add-up'. For one thing, I used to get particularly bad CHs immediately following after a deep-tissue massage. I now know why. Arachidonic acid, the 'fuel' for COX-2 to produce prostaglandin, exists in the largest concentrations in your skeletal muscle tissue! So, whenever I had a deep-tissue massage or did strenuous exercise, it was releasing larger quantities of arachidonic acid into my bloodstream, providing my already elevated levels of COX-2 with more 'fuel' with which to produce prostaglandin, and thereby, inflame the tissues surrounding my trigeminal nerve! It all makes sense now!

Also, I started getting osteo-arthitic pain in my right hand around the time I went from being episodic to chronic back in August of 2014. This lends credence to the theory that excess COX-2 was at least partially responsible for both the arthritis and the chronic CHs. Also, the fact that the D3/Vimovo routine has not only halted my CHs, but also largely mitigated the arthritic sensations in my right hand is only further evidence that maintaining low COX-2 levels is an effective treatment for both conditions. At Batch's suggestion, I have also started taking Vitamin K2 (K7) on a regular basis--something I only just started doing 2 days ago--and it already seems to be helping to further eliminate the arthritic sensation in my hand that I was waking up to, in the last two mornings.

That's all for this update!

Please do not hesitate to ask me any questions!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Joshua on Feb 9th, 2016 at 1:43pm
Day 4 of the regimen for me. After coming off my meds a few weeks ago (bad idea) and going right back to chronic, I started back on 240mg of Verap and nightly Migranal spray in each nostril when the beast attacks like clockwork around 20:00.  So far with that regimen I'm down to 1 headache a day. 

I hope to be able to not get the nightly headache now that I've started D3, but not sure how long it will take (or if it will) work.  When should I get the first blood test?

More to come as things develop.


Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Feb 9th, 2016 at 4:01pm
Hey Joshua,

Thanks for the update.  It appears you're already starting to respond to this regimen.

Are you doing the vitamin D3 loading schedule?  That will speed up the increase in your 25(OH)D serum concentration to 80 ng/mL and that should help you get CH pain free as fast as possible.

Try to see your PCP for serum 25(OH)D, calcium and PTH lab tests and discuss the anti-inflammatory regimen.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by blacklab on Feb 11th, 2016 at 5:14am
Annubus,
             I enjoy reading your up dates and especially the detailed depth in the way your reporting it.
You obviously have researched or have some type of maybe medical background ?  but at least I can follow the journey you've taken and so far, even with my limited I.Q I am understanding the logic you present in your updates.
look forward to your next up date,  good luck with it.
colin

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by cmorrish on Feb 19th, 2016 at 11:47am
My experience with A-I D3 regimen:

from ages 22-32 I could count on 2 cycles per year like clockwork.  usually mid November, and sometime in June, with the summer one lasting 30 days and the fall one lasting through January sometime.

I started taking 10000 iu D3 along with the rest of the regimen in the summer of '14 and have not had a cluster headache since.  If i feel the hint of a shadow, and i mean a hint which simply might be the wind blowing on my forehead, I will up the D3 to 20K iu for a few days.  By my count I have skipped 4 cycles now.

cheers,

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Feb 19th, 2016 at 1:32pm
Cmorrish,

Always great to hear of a Clusterhead without pain. Long may it last.

Mind yourself,

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by jk247g on Apr 4th, 2016 at 8:32pm
Is it best to take the entire regimen at the same time with the same meal. Or if there's 2 pills per serving like the Kirkland's vitamin, to do one with lunch and one with dinner?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 5th, 2016 at 4:01am
Hey JK,

Good question...  After more than five years taking this regimen, I've found it's best to take everything with the largest meal of the day, preferably right after eating.

This does two things.  Vitamin D3 absorption goes up when it's taken with food, particularly food relatively high in fats.

Taking the magnesium and Omega-3 fish oil with a meal helps prevent GI tract problems and osmotic diarrhea.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by jk247g on Apr 6th, 2016 at 8:45pm
Batch,
I have Vitamin K2 from maxx labs with natural mk-7 and mk-4. Will it work or is it missing anything? I saw it said the mk-7 was from Natto and yours from Menaquinone. I tried to post the link but i'm too much of a newbie for it to let me.  It's on amazon.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 7th, 2016 at 5:18pm
Hey JK,

You've got the right vitamin K2... MK4 and MK7 are the two vitamin K2 menaquinones we need. 

The Life Extension Foundation has an excellent section on vitamin K2 complex at the following link:

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Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by jk247g on Apr 11th, 2016 at 5:49pm
Thanks Batch! The regimen is working. I'm an episodic. When I posted last, I had a day of relief with only one KIP 2 after doing my latent loading dose and now I've had 5 days with just a few kpi 1's. Prior I was having at least two a day of KPI 9 and 10's and in the past, it  usually turned into 3 a day before going back to 2 a day and then to 1 a day.  I was never able to get out to do the test but I was on the full regimen for about a week before it started to work.  When I had the KPI 1, I broke a vitamin d under my tongue and it seemed to take out the headache in about 10 minutes.  So if I keep having luck, this cycle will have only lasted 2 weeks when it usually lasts 5-6 weeks before going into remission.  Do I wait to take the survey until i'm pretty sure my cycle is over?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 12th, 2016 at 3:05pm
Hey JK,

Thanks for the update.  Glad to hear you've got the CH beast on the run...  Keep it up and everything gets even better.

Regarding the survey, wait until you've been taking the maintenance dose of 10,000 IU/day for at least a month to let your 25(OH)D reach a stable equilibrium and then if possible, see your PCP for the 25(OH)D lab test.  Once you have the lab results back, take the survey.  If the lab test for 25(OH)D isn't doable... a month on the maintenance dose then take the survey will be just fine.

So far, the survey results have shown a clear correlation between a sustained CH pain free response and a serum 25(OH)D concentration around 80 ng/mL.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 12th, 2016 at 3:06pm
Hey JK,

Thanks for the update.  Glad to hear you've got the CH beast on the run...  Keep it up and everything gets even better.

Regarding the survey, wait until you've been taking the maintenance dose of 10,000 IU/day for at least a month to let your 25(OH)D reach a stable equilibrium and then if possible, see your PCP for the 25(OH)D lab test.  Once you have the lab results back, take the survey.  If the lab test for 25(OH)D isn't doable... a month on the maintenance dose then take the survey will be just fine.

So far, the survey results have shown a clear correlation between a sustained CH pain free response and a serum 25(OH)D concentration around 80 ng/mL.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by mfocht on Apr 12th, 2016 at 11:03pm
Batch,
What are the symptoms if we get an infection during the D3 regiment?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 13th, 2016 at 10:36am
Mfocht,

Interesting question.  From my experience, I've found the anti-inflammatory regimen with 10,000 iU/day vitamin D3 plus the co-factors turbocharges my immune system...

Just as vitamin D3 triggers genetic expression in neurons in the brain and trigeminal ganglia that helps us prevent CH, vitamin D is also expressed on vitamin D receptors in immune cells (B cells, T cells and antigen presenting cells). 

As these immunologic cells are all are capable of synthesizing the active vitamin D3 metabolite, 1,25(OH)2D3, vitamin D3 has the capability of acting in an autocrine manner to support an improved immunologic response.  In simple terms, vitamin D3 can modulate (improve) the innate and adaptive immune responses.

What all this means is viral infections like colds and flu are significantly reduced after you've been on the anti-inflammatory regimen for a month or two and you've elevated your serum 25(OH)D up around 80 ng/mL.

That doesn't mean you won't catch a cold.  The adenovirus that causes the common cold mutate a lot so the adaptive immune cells may not recognize a new mutated version and react accordingly.   However as the innate immune cells also get jazzed up on vitamin D3, they act like caped crusaders and jump ugly on the adenovirus as fast as possible.

That means the common cold which would ordinarily last a week or more before you started vitamin D3, now last only a day or two...  There are several studies out indicating better than a 40% drop in influenza infections when serum 25(OH)D is >40 ng/mL.

What we've also learned over the last five years is an immune system response to an infection consumes more vitamin D3 and its first metabolite 25(OH)D.  As this can lead to a return of the CH beast, we've found its best to double the normal vitamin D3 maintenance dose while the infection symptoms are present... 

Taking a 1000 mg vitamin C tablet three to four times a day can also help shorten the infection duration.

An immune system turbocharged with vitamin D3 handles bacterial and fungal infections in much the same way.  Ultimately, it's a numbers game...  If the source of the infection is massive, it takes the immune system longer to control the infection.

In some cases with bacterial or fungal infections, an antibiotic or antifungal medicine is indicated... Your PCP should recognize the symptoms and treat accordingly.

If you do end up taking an antibiotic or antifungal medicine, they tend to be indiscriminate so wipe out friendly colonies of biota in the GI tract called the microbiome.  If this is the case, taking a probiotic is also a good idea. 

We've run the information trap line on taking antibiotics and probiotics...  The consensus is the probiotic can be taken with the anitbiotic as long as the doses of each are separated by 12 hours.

I hope all this answered your question...

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Mojocassie on Apr 13th, 2016 at 11:24am
I'm not sure if this is the place to ask but in the past few years my mums headaches have turned chronic and I found information about the vitamin d regimen and started her on it. Recently her vitamin d test came in at 84ng but she is still having terrible headaches. Today has been the worst in a while. Last week before her test results came back I upped her vitamin d to 20,000 and the next day her test said it was high enough so I lowered it to 10,000 again but the day after she had a pain free day. I don't know if it was a coincidence or not.

Should I up her vitamin d to 20,000 for a bit longer?

I have seen a first generation antihistamine recommended but I don't know if she can take it with her topirimate. The only kind we can get in the uk is chlorphenamine.
Would you recommend she try that?

Thanks

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 13th, 2016 at 4:06pm
Hey Cassie,

Welcome to CH.com.  We know what your mother and you are going through and the good news is it doesn't need to be that way.  Your mother is lucky to have a proactive supporter like you.

For starters, 20,000 IU/day is a very safe dose of vitamin D3 and it may be all your mother needs to reach the tipping point towards a CH pain free response.  Accordingly, its unlikely the pain free day after taking 20,000 IU of vitamin D3 was a coincident.

There are several clinical trials indicating vitamin D3 doses up to 40,000 IU/day and 25(OH)D serum concentrations up to 164 ng/mL are beneficial for the condition being treated with no evidence of hypercalcemia or hypercalciuria... 

Hypercalcemia (a serum calcium concentration above its normal reference range) is the only real indication of vitamin D3 intoxication, a.k.a. "vitamin D3 toxicity" not a serum concentration > 100 ng/mL (250 nmol/L). 

That said, your mother needs to keep her PCP in the loop with labs for her 25(OH)D, total calcium and PTH (Parathyroid Hormone).  As long as her total calcium stays within its normal reference range, your mother should be good to go at 20,000 IU/day vitamin D3... or higher.  PTH labs should come back at the low end of its normal reference range.

As a side note, I've run my serum 25(OH)D concentration over 164 ng/mL and my total calcium stayed well within its normal reference range.  I kept my PCP in the loop during all this and all he did was smile when the lab results came back... all in the green.

Regarding the first-generation antihistamine, chlorphenamine (chlorpheniramine maleate oral) should work just fine blocking H1 histamine receptors. 

However, chlorpheniramine maleate oral and topiramate oral both increase sedation so your mother's PCP should be consulted prior to starting the chlorphenamine.  No driving while taking either of them.

As the topiramate (Topamax) appears to be ineffective in preventing your mother's CH, I suggest you or your mother discuss with her PCP a plan to stop taking the topiramate while taking the chlorphenamine.

If a week to 10 days of chlorphenamine has no effect on the frequency of your mother's CH... it's unlikely that an allergic reaction and flood of histamine is triggering her CH.

You can find suggested dosing instructions for an adult allergic reaction at the following link.  Again be sure to discus all this with your mother's PCP.

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Hope this helps.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Joshua on Apr 14th, 2016 at 7:13am
Batch,

New blood tests hot off the presses:
D3 147 ng/mL
PTH 12.7 pg/mL
Calcium 10.6 mg/dL

I've been largely pain free since about 3 weeks ago when I started taking 35-50,000 IU daily to get the levels up. I'm beginning a taper down now to see if I can hold at the suggested maintenance dose going forward.

I've also halved my previous dose of Verapamil from 480 to 240 many weeks ago when I started, no ill effects it seems.

I'm very happy!  And very grateful to this group.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 14th, 2016 at 1:42pm
Hey Joshua,

Thanks for the update and lab results.  The lab results are very interesting.  I'm guessing the lab printout flagged the serum calcium concentration as "High" and your PCP advised you to lower your vitamin D3 intake.

That said, your CH pain free response to doses of vitamin D3 > 10,000 IU/day is proving what I've suspected for the last few years... and that is many of the 18% to 19% of CHers who do not respond to the anti-inflammatory regimen at 10,000 IU/day and serum 25(OH)D around 80 ng/mL need higher doses of vitamin D3 with resulting 25(OH)D serum concentrations higher than 100 ng/mL in order to experience a CH pain free response.

Several CHers, myself included, have run serum 25(OH)D up to a range between 140 to 165 ng/mL, (350 to 410 nmol/L) under a physician's supervision.  In all but one case, the serum total calcium stayed within the normal reference range of 8.5 to 10.5 mg/dL.  One lab for calcium came back at 10.6 mg/dL, but dropped within the normal reference rang on a subsequent lab test a month later after lowering the vitamin D3 dose.

Your total serum calcium at 10.6 mg/dL has "bumped" the upper limit for total serum calcium.  In NASCAR speak, your motor is running a little hot.  What this really means is the vitamin D3 doses you were taking have pushed your calcium homeostasis to the limit of its capacity to maintain a serum calcium concentration between 8.5 to 10.5 mg/dL.

As you have already lowered your vitamin D3 intake, you've taken appropriate corrective action.

It's important that CHers taking the anti-inflammatory regimen to prevent their CH understand calcium homeostasis, what it is, what controls it and the role played by vitamin D3.

In simple terms, calcium homeostasis is a biological control mechanism that maintains serum calcium concentration in a very narrow range.  It's a lot like the thermostat in your car that maintains engine temperature in an optimum range by controlling the amount of radiator fluid passing through the radiator.

Vitamin D3 from supplements or generated in the skin as cutaneous vitamin D3 enters the bloodstream and passes through the liver where it is hydroxylated (metabolized) to 25-Hydroxy Vitamin D3, a.k.a. 25(OH)D. 

This name comes from the chemical naming convention meaning a hydroxyl radical [OH] was added to the 25th position on the vitamin D3 molecule.

Here is where things get interesting...  Chemical sensors in the brain, parathyroids and elsewhere in the body are constantly monitoring serum calcium concentrations.  Under normal conditions, when serum calcium approaches the lower limits of its normal reference range, the parathyroid glands sense this condition and they start releasing more parathyroid hormone (PTH).

This additional PTH signals the kidneys to hydroxylate more 25(OH)D to 1,25(OH)2D3, (calcitriol), the active hormonal form of vitamin D3.  If you follow the naming convention, the kidneys have added a 2nd hydroxyl radical to the 1st position on the vitamin D3 molecule.

Serum 1,25(OH)2D3, the active hormonal form of vitamin D3 now travels through the bloodstream to the gut where it pulls more calcium into the blood stream to maintain serum calcium within its normal reference range.  If there is insufficient calcium in the gut, 1,25(OH)2D3 pulls the needed calcium from bones.

Under normal conditions, if serum calcium approaches the upper limit of it's normal reference range, calcium sensors detect the rising serum calcium concentration and signal the parathyroid glands to stop or slow the production of PTH.  This slows the extraction of calcium from the gut and bones and this allows serum calcium concentrations to drop.

Your PTH labs at 12 pg/mL are at the low end of the normal reference range 10 to 65 pg/mL.  This is consistent with your higher serum calcium concentration.

Sooo... what does this lesson in biochemistry tell us?

You'll note the above explanation of calcium homeostasis was under "normal" conditions where we take a physiological dose of vitamin D3 around 10,000 IU/day.  By physiological dose, we're talking the amount of cutaneous vitamin D3 normally produced by the skin if we were running around outside exposed to the UV B in direct sunlight like paleo man clad in skins of an animal we ate.

By taking doses of vitamin D3 greater than what would normally be generated by paleo man... we're taking what is called a supraphysiological or pharmacological dose of vitamin D3 to achieve a therapeutic response, i.e., a cessation of CH symptoms. 

What I'm saying here is the CHers who don't respond to the anti-inflammatory regimen with a physiological dose of vitamin D3 at 10,000 IU/day may need to take higher, pharmacological doses of vitamin D3 in order to prevent their CH. 

So what happens when they find a pharmacological dose of vitamin D3 that prevents CH... but it results in too much serum calcium... like above the normal reference range for total calcium at 10.5 mg/dL? 

This almost sounds like being between a rock and a hard place... but there is a solution.

The solution in this case is stop taking calcium supplements and eliminate as much dietary calcium as possible.  That means no milk, cheese, ice cream or any other food type high in calcium.

To be clear, most of the above is for discussion purposes only... 

If you are among the 18% to 19% who do not respond to the anti-inflammatory regimen at a vitamin D3 dose of 10,000 IU/day, and you want to take higher doses of vitamin D3, do not do this by yourself. 

You need to work with your PCP or neurologist if you want to take sustained doses of vitamin D3 greater than 10,000 IU/day to prevent your CH.  You and your doctor will also need to monitor lab test results for your serum concentrations of 25(OH)D, calcium and PTH.

If serum calcium gets too high, lower the vitamin D3 dose.  If you can't lower the vitamin D3 dose because your CH return if you do, then you need to stop taking calcium supplements and eliminate dietary calcium the the maximum extent possible.

Again, all this needs to be done under a physician's supervision.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Joshua on Apr 14th, 2016 at 1:54pm
Wow!  Great info! I actually am not taking a calcium supplement.  But I do drink milk and eat cheese. I'm taking all the other co-factors, Mg, Fish Oil, Super-K and Multi-Vitamin.

I'll continue to drop down to 20k for a while, and then get another test at 6 weeks.


Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Apr 14th, 2016 at 7:30pm
Joshua,

Sounds like a great plan.  As long as you've cut back on the vitamin D3, milk and cheese shouldn't be a problem.

Please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on May 23rd, 2016 at 10:29pm
For CHers who have been on the anti-inflammatory regimen for at least a month, if you haven't already done so, please take the survey listed on page 1 of this thread.  Be sure to see your PCP for a 25(OH)D lab test if possible...  The 25(OH)D lab results are a very important part of the survey data.

In addition... there are nearly 100 CHers who started this survey, but never completed it.  If you fall into this category, please go back into your survey, the link is on page one of this thread, answer as many questions as possible then click the submit button.

Many thanks,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jun 25th, 2016 at 10:08pm
Quick question about the magnesium dose in this regiment.  I know 400-600 mg is recommended. 

I'm currently using 500 mg Magnesium Citrate but on the back label it says that the actual amount of magnesium in a serving is 200 mg.

So should I be taking 2 caplets or would the 1 suffice?

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Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jun 26th, 2016 at 12:15am
Hey Slacker,

Good question...  The RDA for magnesium is based on the elemental content of 400 mg/day for men.  Given magnesium has a propensity to trigger osmotic diarrhea if too much is taken at one time, splitting the dose with one capsule in the AM with breakfast and the second in the evening with dinner should keep things from becoming too fluid.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jun 26th, 2016 at 12:40am
Gotcha...thanks Batch.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jun 29th, 2016 at 6:28am
I'm a bit miserable and tempted not to post - but then again, I often surprise myself.

My guess is that it's been about 2 years since my last post and have been PF for most of that time. Just a couple of migraines throughout the year. The lat migraine commencing the start of my CH's again.

Not sure if it's been a perfect storm or not: winter here and no sunshine, been a bit slack with the vitamins and been missing most Fridays and weekends (although 10K of D3 and the others religiously on weekdays), a tooth infection (mild) followed by a course of anti biotics, and a reasonable amount of stress.

The migraine happened just after the trip to the dentist and that had me wiped out for the rest of the day. About 4 or 5 days later the CH's started again. That was nearly 2 weeks ago and the CH's have been getting worse. Like clockwork - 1PM, 7PM and 3AM. I've been taking 20-30,000 daily of D3 along with the 2x  Magnesium, 1 x Calcium, 2 x Fish Oil, 1 x Multi and last night I had a loading dose of 50K of D3. So all up over the last 2 weeks I have had around 350,000 of D3.

I now have a stash of Imigran - both tablets and nasal spray. The spray is better, taking around 15 minutes. The tablets have me sitting in a corner somewhere with me clutching my head and rocking backwards and forwards for 40 minutes or so until the pain dissipates. 40 minutes would probably have seen the pain go away by itself anyway..?

I'm slowly convincing myself that the Vitamin D is not working anymore.

I've read this thread backwards 2 times in the last few days. Why backwards you may ask? Well, I always look for the latest post, and since I am on page 20 already, seems like a great place to start.

Maybe I should read it all again to get some inspiration................. :(

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jun 29th, 2016 at 10:23am
Hey Rolan,

Thanks for the update...  From the descriptions of all you've been going through it's easy to see you've encountered a perfect CH storm.

It's also easy to have doubts about the effectiveness of any CH preventative when the beast is jumping ugly several times a day.

Your action to start loading is good, but it should have been coupled with a trip to your PCP for a 25(OH)D lab test.  In short, you can't really say the vitamin D3 regimen isn't working unless you're taking the complete regimen at 10,000 IU/day vitamin D3 with all the cofactors and you know your 25(OH)D serum concentration is around 80 ng/mL or higher with a recent lab test.

There are a number of other things you need to do.  The two year period of essentially CH pain free time coming to an end may be an indication of a B vitamin Deficiency.  The best course of action is to start a 3-month course of vitamin B 50 complex.  A tablet a day will do just fine. 

The second thing to start is Benadryl (Diphenhydramine HCL).  It's likely you're experiencing an allergic reaction that results in a flood of histamine.  When that happens, nearly all CH preventatives become ineffective.  A week to 10 days taking 25 mg tablet every 12 hours can have a dramatic effect...  Just be careful if you need to drive as Diphenhydramine will make you drowsy.  If you need to drive during the day, take 50 mg Diphenhydramine after eating the evening meal.

Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors throughout the brain and in particular, the hypothalamus and trigeminal ganglia where histamine triggers the release of CGRP and other cytokines that result in neurogenic inflammation and pain. 

Once these histamine receptors are blocked, vitamin D3 and other CH preventatives have a much better chance of preventing CH.

Infections are just as bad as allergies when it comes to CH preventatives...Infections trigger inflammation as part of the body's immune system response and that includes seemingly minor tooth infections.  When that happens, our immune systems go into hyper drive taking priority on the consumption of vitamin D3 and its metabolites leaving too little to control and prevent CH.

Finally, if you've taken an antibiotic, you need to start taking a good probiotic.  The reason for this is simple once you understand that nearly all antibiotics are indiscriminate, so wipe out the friendly colonies of bacteria called the microbiota living in your GI tract along with the offending bacteria causing the infection.

The microbiota includes bacteria, fungi, and archaea are also called the microbiome.   Most people get loose as a goose within a day or two after starting an anitbiotic.

Medical science is finally starting to understand the role played by the microbiome and why it is an important part of the human immune system we need to have functioning properly to keep us healthy.

Taking a good probiotic is just the first step.  The microbiota also need special food to flourish and that includes fermented vegetables like fresh sauerkraut and kimche.  A serving of one or the other once a week can work wonders...

If you want to get smart on the Human Microbiome Progect (HMP), check out the following link.  It's a fascinating read.

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Regarding how to read this thread...  You're right, it can be a daunting task, particularly so when the CH beast is jumping ugly.  I suggest starting on page 1 as I try to keep the latest version of the anti-inflammatory regimen posted there.  The later (most current) posts generally cover individual situations and why we need to take these supplements.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jun 29th, 2016 at 10:25am
Roland,

Read the second part of this link for the latest update:

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Also, try taking 50mg of Benadryl with your evening meal. Benadryl is an anti-histamine and it's possible your tooth infection has upset the balance.

Generic Benadryl is just as effective. Take it for 4/5 nights. It makes you drowsey, thus the advice about taking it with your evening meal, avoids driving. Photo below of the product I buy from Ebay.

Best of luck,

Peter.


image.jpeg (1083 KB | 3 )

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jun 29th, 2016 at 10:29am
Oops,

I see Batch got to you first......even better.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jun 30th, 2016 at 3:49am
Thanks Batch and Peter

Woke with a heavy shadow and a bit of a headache - knocked that back with an Iboprofen. 2 x CH's so far today - 1 at 10am and 1 at 3PM both killed with an under the tongue Imigran. The tablet form of Imigran takes too long to be effective if swallowed. It's 5.42PM now and normally I have another CH at 7PM, but think they have shifted in timing a little.....

Got myself some B complex becuase the pharmacy didn't know what B50 was. Had one of these at lunch time.

Can't get Benadryl in Australia in tablet form. Best I could get is something labelled as a sleep aid and contains 50mg of Diphenydramine Hydrochloride. I'm guessing, that although double the strength, they should be OK. Obviously for pre bed time use only zzzzzzz.

Will be taking another 20K of D3 with the other factors at dinner time tonight.

Wish me luck!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Jun 30th, 2016 at 4:12am
Hi Roland,

the sleep aid containing 50 mg of Diphenydramine Hydrochloride will do just fine.
I find that when i take 50 mg, i sleep a long and heavy sleep.

All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jun 30th, 2016 at 5:42am
Roland,

You can also take 10mg Melatonin, if you want to up the odds of a great sleep.

Hope you have a PF night with a good 8 hours sleep, minimum.

Everything is easier to cope with after quality sleep.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jul 3rd, 2016 at 4:46am
No relief yet :(

Headaches are worse and now I have a morning one as well at 6am. So last night at 2am, then 6am, then 2.30pm and just fighting one off now 6.30pm with an under the tongue Imigran. My Imigran tablet dissolved in the mouth at 2.30pm today took nearly an hour to work!

I have limited nasal sprays, so save these for the nocturnal one - the spray works in 15 minutes.

I did add the B complex and the Bendryl equivalent 50mg which I take just before attempting some sleep. Tonight will be the 4th day of the added Bendryl and B.

I've taken a lot of D3, the 2 weeks up to the 29th June my count was 350,000, I've added another 150,000 in the last 3 days since then with another 50,000 by the end of today.

Should it really take this long to find relief?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jul 3rd, 2016 at 6:51am
Roland,

Sorry to hear that you have not found relief yet.

I suspect that your 25 OH (D) is depleted to the point where you are effectively starting the D3 Regimen again.

As Batch pointed out, you need to get your levels checked to confirm (or deny) this theory.

If it is the case, it can take some weeks before you start to feel the benefits. I was a chronic sufferer for a couple of years when I started and it took all of 4 weeks and more, before the D3 started to work.

Persevere and get your bloods done.

Best of luck,

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jul 3rd, 2016 at 6:55am

Peter510 wrote on Jul 3rd, 2016 at 6:51am:
Roland,

Sorry to hear that you have not found relief yet.

I suspect that your 25 OH (D) is depleted to the point where you are effectively starting the D3 Regimen again.

As Batch pointed out, you need to get your levels checked to confirm (or deny) this theory.

If it is the case, it can take some weeks before you start to feel the benefits. I was a chronic sufferer for a couple of years when I started and it took all of 4 weeks and more, before the D3 started to work.

Persevere and get your bloods done.

Best of luck,

Peter.



Where you taking 50,000 a day beck then, or just the original 10,000 per day?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jul 3rd, 2016 at 7:50am
Roland,

I was taking 50,000 per day, but you have already taken 500,000  in the last few weeks, so you're already well on your way.

Batch can come back and correct me if I'm off the mark here, but I would suggest 20,000 per day and an additional 50,000 at the end of each week, for two weeks.

That should put you a little over the target 600,000 in 4 weeks, with a maintenance dose of 10,000 per day included.

Again I would emphasise the importance of getting your bloods done in the meantime. At that level of dosing you should get your Doctor to test your 25 OH (D), Calcium and PTH.

Best of luck,

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Jul 3rd, 2016 at 8:28am
Hi Roland, like Peter, I am sorry to hear that you're in pain.
The fact that the pattern of your headaches is changing since you have started the D3 regimen is usually a good sign of things to come.
it looks like you're doing everything as per Batch. You are therefore in with a good chance of exeriencing less pain.
I understand that you are probably finding the wait frustrating, however 80% of us are relieved to some extent (Partial or full PF) with the D3 regimen, so try to hang in there.
It took me a fw weeks too to get PF.
I still experience shadows but very rarely, and in spring i occasionally experience a kip 5 or 6, but they are very few and far between and only in spring and maybe 1 or 2 around november/december.
The d3 regimen has been a huge relief for my life and I've now found that i can live my life for 6 to 7 months more every year rather than spend my days recovering from unbearable pain only to be hit again 40 minutes to an hour after i went to bed.
All the best.
Keep us posted please

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jul 6th, 2016 at 2:26pm
Is there a specific brand of probiotic you guys recommend?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Jul 6th, 2016 at 4:55pm
Hey Slacker,
this probiotic is of a high quality

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All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 6th, 2016 at 5:04pm
Hey Slacker,

Good question...  I go to Costco and look for the best bang for the buck...   In the case of probiotics, it's the brand with the highest number of probiotic strains, the highest number of live probiotic cultures and lowest cost.

I've found the Probiotic 10 sold by Nature's Bounty meets my needs...
10 different probiotic strains and 20 Billion live probiotic cultures per serving (2 capsules) at $20 for 70 capsules or 54 cents per day...

Or you can go the Cadillac route with 1MD Complete Probiotics Platinum at $39 for a bottle of 30 capsules ($1.30/day) containing 50 billion live cultures in every serving and 11 robust, clinically studied strains.

It's also important to know these little beasties need fermented veggies to flourish.  That means a serving of fresh Kimche or Sauerkraut a week...   The alternative is a good Dil Crock with garden fresh veggies pickling away...

Hope this helps...

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jul 6th, 2016 at 5:59pm
Thanks Batch...I'll check out that Nature's Bounty.

And I'm Korean so getting some kimchi in my diet won't be a problem  :).

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jul 7th, 2016 at 7:02pm
No relief for me yet. Still have the CH at 10am, 2am, 6pm, 10pm and the nocturnal 2am.

2 nights ago I went all nauseous and got a mixture of cluster and a "normal" intense headache. I ended up chewing an Imigran tablet followed by the Imigran nasal spray am hour later. The cluster went away after about 2 hours but I was left with an intense headache on the same side. Took me a while to realise it wasn't a cluster and ended up coming to my senses and took 2 x ibuprofen at 3am. 20 minutes later I was able to fall asleep.

Same thing happened last night, wake with with a CH, try to abort and it morphs into an intense non cluster type headache. I'm now waking with annoying headaches on my cluster side. This I can knock back with the Ibuprofen. I am left with a shadow and slight headache all day between the clusters.

It's confusing trying to work out if the pain that starts to develop is the start of a cluster or will turn into a painful non CH. If it's not a CH and I abort, I waste $$'s with the meds and time with the treatment. If I don't try to abort and take Ibuprofen and it turns into a CH, then I've lost valuable time to abort.

I try to abort using the Imigran tablets dissolved in my mouth because the nasal spray is so expensive, but if I leave the abort attempt too long - it's close to useless and I end up with an hour of CH pain.

I,m into 3rd week of D3 loading and now down to 30,000 D3 a day with all the other stuff. I feel a bit cheated since I have been taking the regime for 2 years since my last CH attack - 10K a day (missing most weekends though).

I'm now thinking that maybe I didn't respond last time to the regime and my cycle naturally ended on it's own.

Yep - shooting in the dark without knowing my D3 levels.

Question is (after all the ranting) is it common for the D3 regime to break a cycle similar to what I have experienced?

P.S. Do others wish Batch was on here 24/7? Sometimes I don't post because being in Australia, the replies take a long time. By then there are other problems to worry about!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jul 7th, 2016 at 7:07pm

thierry wrote on Jul 6th, 2016 at 4:55pm:
Hey Slacker,
this probiotic is of a high quality

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All the best


Sorry, I missed this post originally.  Thanks for the suggestion.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 7th, 2016 at 8:40pm
Hey Roland,

Thanks for the update and sorry you're still having a rough time.  Have you tried the Diphenhydramine you reported on 30 June?  That should make a difference in your CH patterns if an allergy is causing the problems preventing the anti-inflammatory regimen from doing its thing in stopping your CH.

The following chart illustrates the response by day of CHers after starting this regimen.

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As you can see, most CHers respond to this regimen in the first 10 days...  only a handful take longer than a month.

The best course of action at this point is to see your PCP for a lab test of your serum 25(OH)D, calcium and PTH.  Knowing your 25(OH)D serum concentration is important at this point. 

If your 25(OH)D serum concentration is not up to 80 ng/mL (200 nmol/L) or above, you may have a vitamin D3 absorption problem.  If your 25(OH)D is up in that range and the Diphenhydramine hasn't made a difference after 3 to 5 days, then you've got something else cooking like a low grade infection or some kind of inflammation.

In any case, if there's no joy in a few days, I'd head for my PCP for a checkup including a CBC.

As far as being on line 7X24...  I stay logged into this forum around the clock and check it several times a day and night...  I do need sleep so after being up most of the night responding to posts from all over the world, I crash for 6 hours between 6 am and noon...(Pacific Daylight Time). I also grab a combat nap after dinner.  At 73, that works just fine for me. 

My wife Joyce and I spend a good bit of time together, and as she reads many of the posts by CHers, she understands the time I spend responding to those posts.  After that, there's a yard and garden that need constant attention so although I'm logged in, I may not be at my laptop.

I try to respond to posts for information as soon as I see them...  but then with only one good eye... and it goes on the blink from time to time, I may miss one for a while...  If I've taken too long to respond to a post, shoot me a PM.  They pop up when I refresh my screen so are hard to miss.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jul 7th, 2016 at 9:15pm
Batch, I did try the Benedryl for 5 nights, just made me groggy through the early hour CH's. The clusters now abort into a huge headache which does respond to Ibuprofen. One thing to note is that the D3 has improved my hearing. I sufferer from tinnitus which has dropped to half the volume over the last 3 days.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Mike NZ on Jul 8th, 2016 at 1:52am

roland88 wrote on Jul 7th, 2016 at 7:02pm:
Do others wish Batch was on here 24/7? Sometimes I don't post because being in Australia, the replies take a long time. By then there are other problems to worry about!


Certainly wish we had Batch around 24/7/365 for his wisdom.

However there are a few of us in this corner of the world, both in Australia and New Zealand, plus people seem to post around the clock around the world, so there is always someone around.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 8th, 2016 at 1:58am
Hey Roland,

Let's be thankful for small blessings...  A reduction in tinnitus may be a small blessing...  but it's still an improvement. I've found vitamin D3 has reduced my tinnitus over the last six years to the point it no longer bothers me.   It's still there, but not the roaring hiss it used to be.

I suspect you're starting to respond to the anti-inflammatory regiem and first-generation antihistamine, so I wouldn't change anything at this point...  Stay the course and please keep us posted...

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jul 8th, 2016 at 8:01pm
Cluster timings are all getting messed up - hope this is a good thing.

I aborted yesterday at 5.30pm and sailed through the evening without the usual 7-8PM one. Went to sleep at 10.30PM feeling pretty good. Even thinking I was actually going to miss the ritual - what a strange thought!.

Wham - one at 12.30am - aborted with a nasal spay, then another at 2am :( Got through the night and woke with a huge headache at 7.30am, had 2 x ibuprofen and layed back down, then chewed on another Imigran tablet at 8.30am which has me sitting here now in relative painless comfort.

Took this ugly palm out a few days ago:
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Now dealing with the stump, hoping to see the CH's disappear when the stump disappears!

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The fibrous nature of the stump is really hard on my little chainsaw!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by roland88 on Jul 11th, 2016 at 3:56am
Missed my 1PM CH - feeling like maybe I've broken the back of the beast :)

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by JC11 on Jul 11th, 2016 at 4:01am
batch it looks like you are doing great work for people, question on the survey, i think im still episodic but ive been on topomax for over a year straight (wasnt worth the risk coming off anymore) so maybe im chronic. i just started d3 sat and will get the rest of the supplements today, i had recent blood work and my vitamin d was low so hopefully i can get you that number when i get a script for virapimil (new topomax isnt working at all)

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jul 11th, 2016 at 4:55am
Hey JC11,

Have you discussed using Verapamil with the D3 Regimen?

It is very important that you work closely with your Doctor if you are doing both.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Jul 11th, 2016 at 8:23am
Hey JC11,

Don't worry about the survey until you've been on this regimen for a minimum of 30 days and obtained a second lab test for your 25(OH)D.

Regarding verapamil and the anti-inflammatory regimen... the only possible issue arises with the calcium supplement reducing the effectiveness of verapamil. 

Cardiologists treating heart patients with verapamil allow for some calcium supplements so this caution has mixed reviews.  Separating the verapamil and Mature Multi (220 mg Ca) by 12 hours provides ample time for both to be effective.  Be sure to discuss this with your neurologist.

Did your neurologist order an EKG before prescribing verapamil?  A study done in 2007 found roughly 19% of CHers taking verapamil encountered arrhythmias, (atrioventricular block and symptomatic bradycardia).  That makes a baseline EKG an important first step in prescribing verapamil and periodic EKGs after you've reached an effective verapamil dose a good idea.  See:

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Take care and please keep us posted.

V/R, Batch   

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by JC11 on Jul 19th, 2016 at 3:06pm
i think it works for me. ive been off topomax for a week now (and finally sweating again) and only took the verapimil for four days, i figured i was pain free before the verapimil lets give the d3 a full run on its own. ive been on d3 for 11 days now and havent followed the regimen but its still working. i was at 1 calcium 1 magnesium 1 multi 2 fish oil and 40,000iu d3, due to digestive issues i have cut back to just 1 mutli 1 fish oil and 20,000iu for the last 5 days, this has been well tolerated and im pain free.                                                                                                                                                                                                                                                                                                                                                                                              batch do you still want me in your survey if im not following the full regimen, or are you mainly concerned d3 blood levels and effectiveness ?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by SECAuthentics on Jul 19th, 2016 at 3:12pm
I am 39 and was diagnosed with CH about 9 years ago. I got them in the spring time each year for the first few years. I was prescribed the various common medications used to try and slow the beast down, along with several different pill forms of triptans. The first few years I only got about 2-3 headaches a week.....never more than one a day and NEVER in the middle of the night while I was sleeping.

About 3-4 years after I was diagnosed I read about mushrooms/psilocybin having tremendous results busting the headache cycles and sending sufferers into extended periods of remission. I decided to give it a shot and microdosed a couple mushroom caps each night before bed. Immediately the cycle was busted and the headaches were stopped in their tracks. I still got shadows for the remainder of the cycle but never more than that. After the first use my remission period was extended to 18 months. I did it again the next cycle. Same result. Next cycle same result. I was still seeing my neurologist and getting triptans prescribed but I rarely if ever used them. I kept them lying around the house or in my vehicles for when a cycle started unexpectedly and I didn't have any access to mushrooms......which actually happened during my last cycle in Summer of 2014.

That summer was hot and I could not find any mushrooms so my PCP prescribed me Verapamil. I'd tried a dozen various prescriptions over the past 8 years so I wasn't real optimistic. Surprisingly, after about a week the headaches stopped! Same pattern as the mushrooms.....still got shadows but the beast never matured and went full blown. Nothing ever higher than a 3-4 on a 1-10 pain scale....and I can live/function with a 3/4. I rode the cycle out that summer and come Fall 2014 the cycle ended.

Fast forward to Spring of 2016. I felt some shadows around March or April and I knew that it was probably time for my next bout with the beast since it had been almost two years. I happen to run across someone who had LSD (hadn't even seen that stuff since high school) and I'd actually read that LSD had higher/better results than mushrooms. So I got some and took half one night. Headaches never went full blown.......until about 3 weeks ago. Thinking maybe the LSD just didn't work for me I quickly found some mushrooms and started my microdosing protocol that had worked to perfection for me 3-4 times over the past 6+ years. Except this time.....it has not worked. I've eaten a whole quarter ounce of mushrooms in the past month.....didn't phase the beast one bit. I called my PCP 4 weeks ago and got her to refill my Verapamil. I've been on it for 22 days.....it has not worked.

I have gotten two headaches over the past couple weeks that have awaken me in the middle of the night. That has only happened once in the past 9 years.....it's now happened twice in the past 2 weeks. I got two CH in one day last week.....that had NEVER happened to me before.

Last week I started Batch's D3 regimen and although I'm only on Day 8 I can not tell any difference in my CH frequency or intensity. I also started taking 10mg of Melatonin at night. My neurologist put me on Neurotin last Thursday.......I can not tell any difference from ANYTHING! I woke up at 8am today with a CH and I took a Treximet pill.....it DID NOT work! Well....the pill worked because I felt that fuzzy tired, lethargic feeling those triptans give you when they kick in, but the CH did not cease. That has NEVER happened to me before. I try not to take triptans because I know they can do more harm than good but I had stuff I needed to do today so I took one....and it didn't work. Nothing has seemed to work this time and to make matters worse the CH seem to have become more erratic and aggressive. Is this normal? Does this thing adapt to prior treatments? Have you guys had something work one cycle but not the next? I'm kind of at the end of my rope here and I do know what else to do. NOTHING has worked this time.......not even the triptans.

:'(

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by JC11 on Jul 19th, 2016 at 3:22pm
sec, lsd has never helped me with my ch's. i treated for about 2 years with elavil then 3 years on topomax  and have had great relief from imitrex (injections only, pills and spray didnt work). i just started d3 and it seems to be working. sorry you hit a wall intreatment, i know its scary

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jul 19th, 2016 at 4:05pm
Sec,

Sorry to hear you're in trouble.

Stick with the D3 and follow the loading doses to the letter. It might take a bit more than 11 days but it will be worth it.

Did you have your blood 25(OH) D level checked before you started?

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by SECAuthentics on Jul 19th, 2016 at 8:40pm

Peter510 wrote on Jul 19th, 2016 at 4:05pm:
Sec,

Did you have your blood 25(OH) D level checked before you started?

Peter.


Going tomorrow to have my levels checked. I know it'll be 12 days after I started D3 protocol but I'm sure they'll be low since I live in the southern US and bathe in sunscreen

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by SECAuthentics on Jul 19th, 2016 at 8:46pm

JC11 wrote on Jul 19th, 2016 at 3:22pm:
sec, lsd has never helped me with my ch's. i treated for about 2 years with elavil then 3 years on topomax  and have had great relief from imitrex (injections only, pills and spray didnt work). i just started d3 and it seems to be working. sorry you hit a wall intreatment, i know its scary


I had never used LSD until this spring. Always used mushrooms the past 5-6 years and they worked like a champ. Every. Single. Time. Until now... :-/

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jul 20th, 2016 at 4:53am
SEC,

12 days in is no problem getting your bloods done. They will be low, most likely.

Keep us posted.

Best of luck,

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by SECAuthentics on Jul 25th, 2016 at 12:14pm
Guys-

I think I stumbled on to something I wanted to run by everyone. Now, this may have been post somewhere else before, but as I stated earlier I'm a 9 year sufferer and if you're like me I've read about every single page on the internet about this disease trying to find something, anything I could do to treat this beast. That's how I came across the mushroom treatment years back. I have never seen this post or suggested anywhere in 9 years on any site I've been to. Anyway here is the skinny:

Started the bout with the beast about 3 plus weeks ago and as I stated in my earlier posts mushrooms did not work...small microdose of LSD did not work. Verapamil has not worked nothing. I hate taking the triptans, but I hate trying to white knuckle thru a headache as well. The past couple of weeks I've been mixing a sumitriptan shot with Treximet pills. I'm self employed and most of the headaches have came in the middle of the day when I've been really busy and can not afford to take a day or rest of the day off. I do feel like since I have taken a combined total of 4-5 triptan doses the past couple weeks the frequency of the headaches have increased.

Anyway, my girlfriend and I bought a new house on July 1 and I have not cut the grass since we moved in. I live just outside of Birmingham, AL so it's hot as Hades down here. I was cutting the grass yesterday around 2pm and just as I got about 90% finished I felt the beast coming on. Angry that the beast was going to interrupt the yardwork my new house desperately needed, I quickly finished just cutting the grass for about 10 minutes as the beast grew stronger, I finished up then ran inside, popped a Treximet and got into the shower to clean up before I had to lay into my bed and ride this out before the Treximet kicked in....usually about 30 minutes for me.

Since I was so hot I got into a cold shower....not a cool shower but COLD....washed up, got out and crawled into my bed. Less than 5 minutes after I got out of the shower the beast went away.....it went away within 12-15 of taking the Treximet which is way too quick for the pill to have kicked in and started working. I can always tell when the triptans hit because it gives me the light headed lethargic feeling which also makes me worthless the rest of the day.

My GF came in to check on me and I told her that the headache went away before Treximet kicked in. She's a registered nurse at UAB Hospital in the bone marrow ward. She said that the ice cold shower probably caused vasoconstriction in my body which is similar to what the triptans do. Anyway beast was completely gone and about 15 minutes after that I felt the triptan kick in.

This morning, I was awaken by the beast (3rd time this cycle the beast has awaken me in the morning) so I quickly got up and jumped into a cold shower. Being that I was not hot and sweaty this morning, that shower was not very pleasant....it was so cold I was in there squealing like a little girl. I toughed it out for as long as I could while the beast inside was growing. I got out, dried off and crawled back into the bed. Low and behold within 3-5 minutes the beast was GONE!

Maybe there is something to the vasoconstriction of a cold shower. I've never seen or read about this anywhere before in 9 years. Maybe it's old news. Has anyone ever heard of this? Tried this? Or had any success with this? I really hope this works with some consistency. I do not like taking those triptans and would love to find something that works, especially something natural.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Potter on Jul 25th, 2016 at 12:43pm

SECAuthentics wrote on Jul 25th, 2016 at 12:14pm:
Guys-

I think I stumbled on to something I wanted to run by everyone. Now, this may have been post somewhere else before, but as I stated earlier I'm a 9 year sufferer and if you're like me I've read about every single page on the internet about this disease trying to find something, anything I could do to treat this beast. That's how I came across the mushroom treatment years back. I have never seen this post or suggested anywhere in 9 years on any site I've been to. Anyway here is the skinny:

Started the bout with the beast about 3 plus weeks ago and as I stated in my earlier posts mushrooms did not work...small microdose of LSD did not work. Verapamil has not worked nothing. I hate taking the triptans, but I hate trying to white knuckle thru a headache as well. The past couple of weeks I've been mixing a sumitriptan shot with Treximet pills. I'm self employed and most of the headaches have came in the middle of the day when I've been really busy and can not afford to take a day or rest of the day off. I do feel like since I have taken a combined total of 4-5 triptan doses the past couple weeks the frequency of the headaches have increased.

Anyway, my girlfriend and I bought a new house on July 1 and I have not cut the grass since we moved in. I live just outside of Birmingham, AL so it's hot as Hades down here. I was cutting the grass yesterday around 2pm and just as I got about 90% finished I felt the beast coming on. Angry that the beast was going to interrupt the yardwork my new house desperately needed, I quickly finished just cutting the grass for about 10 minutes as the beast grew stronger, I finished up then ran inside, popped a Treximet and got into the shower to clean up before I had to lay into my bed and ride this out before the Treximet kicked in....usually about 30 minutes for me.

Since I was so hot I got into a cold shower....not a cool shower but COLD....washed up, got out and crawled into my bed. Less than 5 minutes after I got out of the shower the beast went away.....it went away within 12-15 of taking the Treximet which is way too quick for the pill to have kicked in and started working. I can always tell when the triptans hit because it gives me the light headed lethargic feeling which also makes me worthless the rest of the day.

My GF came in to check on me and I told her that the headache went away before Treximet kicked in. She's a registered nurse at UAB Hospital in the bone marrow ward. She said that the ice cold shower probably caused vasoconstriction in my body which is similar to what the triptans do. Anyway beast was completely gone and about 15 minutes after that I felt the triptan kick in.

This morning, I was awaken by the beast (3rd time this cycle the beast has awaken me in the morning) so I quickly got up and jumped into a cold shower. Being that I was not hot and sweaty this morning, that shower was not very pleasant....it was so cold I was in there squealing like a little girl. I toughed it out for as long as I could while the beast inside was growing. I got out, dried off and crawled back into the bed. Low and behold within 3-5 minutes the beast was GONE!

Maybe there is something to the vasoconstriction of a cold shower. I've never seen or read about this anywhere before in 9 years. Maybe it's old news. Has anyone ever heard of this? Tried this? Or had any success with this? I really hope this works with some consistency. I do not like taking those triptans and would love to find something that works, especially something natural.


O2 at 25lpm+.  With this mask.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

      Potter

         

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Hoppy on Jul 25th, 2016 at 5:46pm
Hi SEC,
Yeah! When it comes to having a shower to get some relief from the  [smiley=evil.gif], some folk like it hot, and some folk like it cold.

Hoppy

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jul 29th, 2016 at 2:22am
Anyone know if 2800 mg of fish oil per day is too much for this regimen?  I bought this Nature's Bounty Maximum Strength Fish Oil which is 1400 mg per gel. 

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Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Jul 29th, 2016 at 3:25am
Hi Slacker,

the fish oil below is the one Batch recommends and takes, it is 1200mg/softgel, so total daily dose is 2400mg.

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I see no harm in taking the one you bought until you finish the bottle. Omega 3 helps regulate cholesterol levels.
You'll still be consuming less than 2 grams of omega 3, which is the max recommended daily dose.

I'm no expert so hopefully someone else will give their opinion.
I would take it if i was given a bottle of it though.

All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jul 29th, 2016 at 1:39pm

thierry wrote on Jul 29th, 2016 at 3:25am:
Hi Slacker,

the fish oil below is the one Batch recommends and takes, it is 1200mg/softgel, so total daily dose is 2400mg.

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I see no harm in taking the one you bought until you finish the bottle. Omega 3 helps regulate cholesterol levels.
You'll still be consuming less than 2 grams of omega 3, which is the max recommended daily dose.

I'm no expert so hopefully someone else will give their opinion.
I would take it if i was given a bottle of it though.

All the best


Thanks thierry. 

So even if my Omega 3 is pushed over 2 grams via diet plus two of these 1,400 mg gels per day, it wouldn't be harmful?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Jul 29th, 2016 at 1:43pm
Hey Slacker,

I take 3,000 mg daily.  No problems.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Jul 29th, 2016 at 1:56pm
Hi Slacker,
I just found this article

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And from healthcentral.com
"Fish oil is very safe even at high doses with virtually no side-effects beyond stomach upset or belching (which can be minimized by taking with meals, refrigerating the capsules, or taking enteric-coated fish oil tablets). Occasionally doses of omega-3s as high as 5000 mg or more are required for unusual disorders like "familial hypertriglyceridemia," in which triglycerides can reach into the thousands, and lipoprotein(a), a high-risk marker for heart disease."

All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Jul 29th, 2016 at 2:27pm
Thanks Peter and thierry.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by coreyn on Aug 4th, 2016 at 6:19am
I was on verapamil and prednisone at the start of my cluster cycle which has been my usual course of treatment whenever I start a new cycle (approx every 2 yrs)  After about 5 days the meds were making me sick so I stopped.  I am thankful I found your posts.  I have been taking 15,000 IU of D3 with 2400mg Omega 3 and Magnesium Citrate.  Within a few days I noticed the intensity of the headaches had dropped significantly and after about a week so has the frequency.  I still have shadows and overall pressure but that I can live with and can usually knock out with a maxalt.   I am hoping that this continues for the rest of my cycle (about 2 months).  I think you may have found the miracle cure !  Thank you !

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 4th, 2016 at 8:01am
Coreyn,

Not a cure , but thanks to Batch's generous work, a very healthy and, in the main, effective preventative.

It's great that you are already getting the benefits. Two things you need to do now:

Firstly, get your blood 25OH (D) level checked with your Doctor. Your target for a pain free state is 80 ng or 200 nmol, depending on the scale used in your country.  Let us know how you get on.

Secondly, don't ever stop taking the D3 Regimen, at the maintenance dose, even when you're not in cycle. It has loads of other health benefits (see the Vitamin D Council website).

Best,

Peter.




Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by adamv on Aug 9th, 2016 at 4:57pm
Question:  "3-month course of vitamin B 50"

What would be the example of this "course", dosage, frequency, ingredients?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 9th, 2016 at 5:02pm

adamv wrote on Aug 9th, 2016 at 4:57pm:
Question:  "3-month course of vitamin B 50"

What would be the example of this "course", dosage, frequency, ingredients?


A lot of us use this:

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One per day until the bottle runs out.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Aug 9th, 2016 at 5:10pm
Good Anser Slacker,

I buy the 90 count bottle of vitamin B 50 and take one tablet a day until empty. 

This 3-month course of vitamin B 50 takes care of any deficiencies among the 7 B vitamins and it also helps develop a healthy microbiome...  a.k.a., the friendly symbiotic colonies of biota residing in the GI tract.  As the microbiome plays a key role in our immune system, this is a big plus...

After that the Kirkland Brand 50+ Mature Multi has enough of the seven B vitamins to prevent any deficiencies.

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by adamv on Aug 9th, 2016 at 5:18pm
Thank you both for your helpful answers!  Should get this going in the next week, fingers crossed, will share my findings and do the survey thereafter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by 976_Clusters on Aug 22nd, 2016 at 4:56pm
I have been on the D3 regimen for only 4 days now and I got instant relief after only 48 hours!

I thought it was too good to be true.  I have tried so many other treatments, have a large welders 02 tank & small medical sized tanks, taken almost every prescription my neurologist was able to prescribe me....  Nothing has ever brought me relief like this D3 regimen.

I can't believe that it worked so quickly for me.

I was getting 3-4 hits a day, really bad ones, now I don't get any.

I will wait until 30 days and then take the survey.

Thanks a million Batch :)

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 22nd, 2016 at 4:59pm
Great to hear!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 22nd, 2016 at 5:21pm
Great post....great news.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Aug 22nd, 2016 at 7:37pm
Hey 976,
:)  nothing makes me happier than to read posts like yours.
Sooo happy that you are pain free and even better still, without the intervention of big pharma.
Batch and his regimen have been live savers -literally- for lots of us.
Keep taking the regimen for life. It has a string of other benefits too -see link-
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All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Gaz Jones on Aug 24th, 2016 at 6:00am
Hi Everyone
After 2 year absence the beast returned a couple of weeks ago and started to give me pounding. I am getting 1 - 2 attacks during the day and 2 - 3 during the night. The night attacks were around the 7-8 scale.
I have had a cold and had taken antibiotics for a minor bacterial infection so I assumed this was why the beast had broken through my usual D3 regime
I immediately upped the dose of D3 and had a look at the latest information from Batch on the AI regime and noticed he had dropped the calcium and added K2 and Vit B complex to the mix. It took me a while to get these additions but in the meantime I was taking 50,000UI D3, Centrum Men Muti- Vits (can't get Kirkland here in Romania), Omega 3 and 500g of magnesium.
After about 5 days the beast seemed to be getting under control with shorter and less intense attacks but I was still getting hit and as I am a hayfever sufferer and live a rural area of Transylvania and after reading Batch's latest advice I also added a first generation anti-histamine to the mix just to be sure.
I also received the B complex and K2 and started taking them, since then I have seen an increase in pain and length of the hits over the last few days, this was a bit worrying because normally the D3 should be reducing / stopping my attacks by now.
Last night I had a really bad night without any sleep, one hit after another as soon as I closed my eyes.
Today I have had a good look at my regime over the last couple of weeks and tried to understand what is going wrong, the headaches have increased since I started taking the anti-histamines, B complex and the K2, so obviously I looked at these first and I think I may have found the problem.
The B Vit complex is made from Yeast and plant POLLEN!
Obviously I did not realize this, and I am convinced that I may have been putting a concentrated form of something I am allergic to into my body and although I have no outward symptoms of allergy it is increasing my histamine levels and sucking up the healing power of the D3
I am going to stop the Vit B complex until I get some that does not contain pollen (and yeast for that matter as I am not sure that is helping to much) and continue to load with D3 and take the anti-histamine to try and undo the damage that I think I may have caused
If anyone has any further advice it would be very much appreciated, if not I will let you know how I go after dropping the Vit B

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by 976_Clusters on Aug 24th, 2016 at 8:40am
Hey thiery,

Thanks a lot for the added info.

It feels so weird (in a good way) that I'm not getting ANY hits anymore.

My family is stunned.  I used to act like there was a demon possessing me when I got a bad hit, which was multiple times a day. 

And the thoughts racing through my head were not nice.

I would ask anyone new I met within a couple minutes if they could get any shrooms or even dope, I just pretty much gave up on suffering through the hell it brings.

I actually contemplated selling my small & large oxygen tanks & equipment.

I basically started an account here to thank everyone for their input in coming to this realization about the D3 regimen, especially Batch.  What a headache Hero 10/10.

I never got a "seasonal" break like some cluster headachers get, mine were constant all year long, but I was wondering if maybe the fact that some people get seasonal breaks was because of maybe extra sun exposure which would give them more vitamin D which probably isn't enough D, but could it be the reason some people got seasonal relief?  Just a theory.

Can someone point to the survey to take after my 30 day run?  Sorry I can't seem to find it.

Thanks a million everyone.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 24th, 2016 at 10:28am

Gaz Jones wrote on Aug 24th, 2016 at 6:00am:
The B Vit complex is made from Yeast and plant POLLEN!


Which vitamin B-complex were you taking?





Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Kutsuki on Aug 24th, 2016 at 4:03pm
Hello again, the beast is back. Since last time, I started the Vitamin D3 regimen and it's cofactors.

Before the attacks restarted, I did lower my Vitamin D intake to 5000IU on weekdays. On my last blood test was a month ago and I came in at 44.1ng/mL for vitamin D.

Since the attacks have restarted, I immediately bumped my Vitamin D intake to 20,000. I'm 3 days in with this and I'm suffering through an attack as I'm writing this :(

My cluster headaches are episodic, it happens daily or once every other day then it goes away for a year or two if I'm lucky. My neurologist prescribed me 100mg Sumatripans and wants me to take them until my episode is over.

The only changes I have made recently was talk to an Allergist about my hay fever. I wanted to start taking the injections to become desensitized to pollen and other environmental effects. I also got new glasses.

Any thoughts or suggestions welcome! Thanks again and best of luck to everyone else suffering.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Aug 24th, 2016 at 4:37pm
Hey Kutsuki,

I would start a modified 2-week vitamin D3 loading schedule: 50,000 IU/day vitamin D3 for 7 days then drop back to a maintenance dose of 10,000 IU/day vitamin D3.

Your 5,000 IU/day weekday dose of vitamin D3 was clearly too low to provide a therapeutic response...  The allergy made that response impossible.

Accordingly, in addition to the modified vitamin D3 loading schedule, I would start a week to 10 day course of Benadryl (Diphenhydramine HCL) asap to treat the allergic reaction.

Allergies create a flood of histamine.  When histamine reaches the trigeminal ganglia it stimulates the release of calcitonin gene-related peptide (CGRP).  Several studies have found CGRP serum concentrations elevated during the pain phase of migraine and cluster headache.

It gets even worse...  CGRP in turn stimulates the production of more histamine.  This results in a circular, self-perpetuating, perfect storm CH headache that will continue unabated until the reactants are consumed at which point the CH ends... for the moment.

As long as the allergy continues, the CHer will be refractory to nearly all forms of CH intervention...

Fortunately, there's a relatively simple solution.  Benadryl (Diphenhydramine HCL.)  This is a first generation antihistamine that passes through the blood brain barrier to block H1 histamine receptors throughout the brain and in particular, the trigeminal ganglia where CGRP is produced. Second- and third-genertation antihistamines cannot do this so will be less effective for CHers.

Blocking the H1 histamine receptor stops the circular, self-perpetuating perfect storm and allows the vitamin D3 in the anti-inflammatory regimen to do its thing to prevent CH through genetic expression.

Take care,

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Kutsuki on Aug 24th, 2016 at 4:46pm

Batch wrote on Aug 24th, 2016 at 4:37pm:
Hey Kutsuki,

I would start a modified 2-week vitamin D3 loading schedule: 50,000 IU/day vitamin D3 for 7 days then drop back to a maintenance dose of 10,000 IU/day vitamin D3.

Your 5,000 IU/day weekday dose of vitamin D3 was clearly too low to provide a therapeutic response...  The allergy made that response impossible.

Accordingly, in addition to the modified vitamin D3 loading schedule, I would start a week to 10 day course of Benadryl (Diphenhydramine HCL) asap to treat the allergic reaction.

Allergies create a flood of histamine.  When histamine reaches the trigeminal ganglia it stimulates the release of calcitonin gene-related peptide (CGRP).  Several studies have found CGRP serum concentrations elevated during the pain phase of migraine and cluster headache.

It gets even worse...  CGRP in turn stimulates the production of more histamine.  This results in a circular, self-perpetuating, perfect storm CH headache that will continue unabated until the reactants are consumed at which point the CH ends... for the moment.

As long as the allergy continues, the CHer will be refractory to nearly all forms of CH intervention...

Fortunately, there's a relatively simple solution.  Benadryl (Diphenhydramine HCL.)  This is a first generation antihistamine that passes through the blood brain barrier to block H1 histamine receptors throughout the brain and in particular, the trigeminal ganglia where CGRP is produced. Second- and third-genertation antihistamines cannot do this so will be less effective for CHers.

Blocking the H1 histamine receptor stops the circular, self-perpetuating perfect storm and allows the vitamin D3 in the anti-inflammatory regimen to do its thing to prevent CH through genetic expression.

Take care,

V/R, Batch


Thank you very much for your fast response. I will give this a try. Do you recommend trying the allergy immunotherapy where you get shots of the things you're allergic to until you become allergy free? or to avoid this?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Batch on Aug 24th, 2016 at 5:36pm
Kutsuki,

Depending on the type of allergy immunotherapy, you may be given a weak form of the allergen(s) to help desensitize your immune system to the particular allergen.  This process will create an allergic reaction albeit hopefully mild...  That said any immune response will trigger the release of histamine so it will likely affect the capacity of vitamin D3 to prevent your CH.

Accordingly, I suggest just the Benadryl (Diphenhydramine HCL) for now.  Once you have your CH under control and have been pain free for at least a month, then go in for the allergy immunotherapy.

Hope this helps.  Check your PM InBox for more information.

Take care and please keep us posted.

V/R, Batch

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Gaz Jones on Aug 25th, 2016 at 1:45am

slacker032 wrote on Aug 24th, 2016 at 10:28am:

Gaz Jones wrote on Aug 24th, 2016 at 6:00am:
The B Vit complex is made from Yeast and plant POLLEN!


Which vitamin B-complex were you taking?

Natural Vit B Complex from Dacia Plant.
My fault really, I went into a health food / herbalist shop here in Sibiu and asked them for Vit B complex and K2 vitamins. They didn't have any in stock so I asked them to order me some to pick up later, they did ask me which type of Vit B complex I wanted and I told them I wanted a good brand in the higher cost range so I didn't get rubbish. Based on the name of the product it is a Romanian brand, I am pretty sure the lady in the shop thought that this product was the best as it is all natural, it is made up from yeast and concentrated plant pollen. I have researched it a bit more and it is definitely not recommended for hayfever sufferers.
Anyway, since dropping the Vit B pills I have seen a significant improvement in the intensity and duration of my attacks already. Last night I had 3 attacks but all of them on the KIP 3-4 and none of them lasted longer than 15 minutes, I am going to continue on 50,000 UI of D3 per day + co-factors and antihistamine until the weekend and see if I can reduce the attacks further and then drop down to 20,000 UI.
I am in the US next week on a business trip so I will pick up the Vit B 50 that others here have recommended and start to take them.
I am very motivated to get PF by the weekend because I really don't want to do a transatlantic flight with the beast hanging over my head

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 25th, 2016 at 1:52am
Gaz - Yea, that natural vitamin B supplement sounds like bad news.  The Nature's Plus B-50 should work out better for you.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by merle64 on Aug 25th, 2016 at 11:17am
55 year old husband has suffered from CH since he was 30.  Tried everything-- but has found complete relief from a low-histamine diet.  Just found out our 32 year old son has been getting cluster headaches for the last two weeks, and as debilitating as these headaches can be, we want to help.  In addition to the low-histamine diet, could you please share the vitamin regimen again?  I've been searching through the posts, but haven't found the original recommendation?  Thank you so very much!! 

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 25th, 2016 at 12:11pm
Merle,

Welcome. We just love supporters here.

Has your son had a formal diagnosis from a Primary Headache Specialist? If not, he should get checked out as soon as he can.

Although his father suffered, he must eliminate all the other primary headache conditions that can mimic Cluster Headache. Only then can he feel confident about treatment.

In the meantime, here is the information on Batch's D3 regimen that you asked for.

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Section 2 is most relevant to you.

Keep us posted.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Gaz Jones on Aug 26th, 2016 at 4:38am
On day 6 of my D3 loading now with 50,000 UI of D3, multi vits, mag, K2 and 2 antihistamines per day
I got hit with 1 Kip 7/ 8 last night around 10pm that lasted for around 30 minutes which was pretty bad but got a reasonable nights sleep
I was woken twice with some twinges which I could not shake while lying down (1 at 12.15am and another at 5am) but as soon as I sat up and took a few deep breathes they disappeared. This is a new one on me, they felt like the beast was about to break free while I was lying down but as soon as I sat up and breathed deeply they disappeared and was able to go back to sleep straight away.
I am also getting consistent shadows during the day that don't go anywhere but I am not sure if these CH related or due to other factors, tiredness, computer use or even the anti-histamines I am taking.
I get the feeling I am on the cusp of the PF zone but just need something to push me over the line.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by pattik on Aug 26th, 2016 at 10:23am
Gaz,

Your description of your current CH behavior is pretty similar to what I experienced the first time I started the D3 regimen at the beginning of a CH episode. The episode wasn't knocked out completely, and I had low level all day pain. Sometimes it will even switch sides. All in all, fairly manageable. I stay on the regimen year round now. When an occasional attack manages to break through, it's mild enough that a low dose sumatriptan tablet will stop it in its tracks. If you're episodic, you may have to put up with the strange CH behavior for the duration, but it will likely be much less intense.

~Patti

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Kutsuki on Aug 26th, 2016 at 2:35pm
I tried adding Benadryl, so far I am 1 day PF. Hopefully this keeps up. I hope it was the allergies that are causing the beast to come back and I hope it was simply this easy fix.

Also, I have been using the D3 regimen for a while now. I have been having issues with constipation so to remedy that I added more Fiber to my diet. I don't have the constipation issue anymore but now I am having problems with diarrhea. I have tried changing my diet to all sorts of different food and I am still consistently getting diarrhea. Are there any cofactors I am not getting enough of? Any advice would be great, thank you very much.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 26th, 2016 at 2:56pm
Mutsuhito,

What type of magnesium are you using and what dose?

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Kutsuki on Aug 26th, 2016 at 3:42pm

Peter510 wrote on Aug 26th, 2016 at 2:56pm:
Mutsuhito,

What type of magnesium are you using and what dose?

Peter.


If you were referring to me, it's magnesium glycinate at 400mg. I've tried magnesium citrate to see if that would help with my problem but it doesn't.

I think it might be related to the brand of Vitamin D3 I might be taking. I was using my generic brand from my local wegmans super market. Any Vitamin D3 brands you recommend?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 26th, 2016 at 4:04pm
Kutsuki,

My apologies about the error in your name, it was due to predictive text and I overlooked checking before I posted.

I was going to suggest Citrate if you had been using Magnesium Oxide. You could also try Magnesium Malate.

The D3 brand I use is "Healthy Options", which you can get on EBay.

Best regards, 

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Mike NZ on Aug 26th, 2016 at 10:54pm
Great that it is working for you and so quickly too. Long may it continue.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by adamv on Aug 27th, 2016 at 5:49pm
Launching day 1 today of the regimen...fingers crossed for tolerance and results!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 27th, 2016 at 6:01pm
Best of luck.

Keep us posted.

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 28th, 2016 at 1:31pm
Do most of you guys take extra Zinc, Boron, Vitamin A and Calcium supplements or does the Kirkland Mature Multi suffice?

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 28th, 2016 at 2:28pm
Hey Slacker,

I just use the Kirkland as recommended by Batch.

I do take extra Vit C, but that's a habit left over from my smoking days. If you're a smoker you don't absorb Vit  C very efficiently.

Best,

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 29th, 2016 at 2:01am
Thanks Peter.  I've been taking a 15mg Zinc oxide supplement but was thinking I might not need it.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 29th, 2016 at 3:49am
Slacker,

Were you taking it for a particular reason?

Peter .

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 29th, 2016 at 3:59am

Peter510 wrote on Aug 29th, 2016 at 3:49am:
Slacker,

Were you taking it for a particular reason?

Peter .


I just thought the 11mg of Zinc in the Mature Multi might not have been enough.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 29th, 2016 at 6:56am
Well, it won't do you any harm.

P.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by thierry on Aug 29th, 2016 at 8:18am
Hey Slacker,
Batch recommends 10 mg of Zinc, so you' re good with the multi.
All the best

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by slacker032 on Aug 29th, 2016 at 10:24am
Thanks guys.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by valerie_d on Aug 29th, 2016 at 10:34am
Another D3 success story! Hi everyone, wanted to give an update and a D3 success story to give others hope. My last cycle was 2 years ago (Sept 2014), that's when I first learned of Batch's regimen. At that time I started popping D3 like crazy but it didn't seem to help me. It was very frustrating but I battled through my typical cycle. For me, the beast hits every 2 years and lasts about 5-6 weeks. Since that last cycle I have taken 10,000 IU's of D3 everyday. I hoped and prayed it would do the trick and I wouldn't get hit this year. Unfortunately, a few weeks ago I started to get the tell tale shadows. This time I was going to get some facts and arm myself with everything possible to head into battle. My neuro, as usual, is of no help and couldn't get me in for 3 months. I made an appointment with my GP instead. I obtained prescriptions for oxygen, verapamil, prednisone, zomig spray, and maxalt. I also asked for a D3 test. I started the verapamil a little over a week ago (has never really helped but I feel helpless doing nothing). Got the oxygen tank on Friday and was ready to put it to use over the weekend. And then...barely any shadows. I think my cycle is ending, normally I would be in the thick of it with another 3 weeks to go. My lab results came back today...D3 is at 132. Just before my last cycle 2 years ago it was 32 and it was 19 the year before that. I am 48 years old and these things started when I was 12. I have lots of experience dealing with these things and nothing has busted a cycle for me, ever. Based on how I am feeling this cycle will be less than 2 weeks total, with only a few days of kip 7-8's. The only thing different is the D3. It works. It may not get rid of them completely but it sure did shorten my cycle and the intensity of the attacks. Peace and love to all of you!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Kutsuki on Aug 29th, 2016 at 1:50pm
After 3 days pain free, I was woken up last night with a cluster headache. I thought Benadryl was all it took and I think it has really helped.

I think it may of happened because:
1. I went to sleep hungry.
2. I lowered my vitamin D from 20000 IU to 10000 IU because my loading period was over.
3. Greek Yogurt was the only thing i ate different from what I normally eat?

Any suggestions welcome. Thanks!

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Peter510 on Aug 29th, 2016 at 2:49pm
Kutsuki,

Your last mention of your 25 (OH) D was 44 ngl, if I'm not mistaken. Your target is to get to 80.

Can you get tested again to see where you are now?

Peter.

Title: Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Post by Gaz Jones on Sep 1st, 2016 at 11:08am
Hi everyone
I am in second week of my loading schedule now, 40,000 D3, Mag, Multi Vit, and K2 in the recommended doses. I have also got some B50 complex in the US which suits me better and I am taking that (it has made my urine a bright yellow color but I suppose that is OK). I have also got some Benedryl  because as soon as I landed in the US I could feel my eyes getting itchy and my nose running and I am taking 2 per day, 1 in the morning and 1 in the evening.
I will probably drop the Benedryl at the weekend when I return to Romania and also drop the D3 to the normal 10,000 UI dose
I am not totally pain free but my CHs are limited to 1 kip 4-5 in the night around midnight that only lasts 10 minutes and some mild shadows during the day.
This is a massive improvement on my normal cycle, normally I would be hit with multiple kip 8 / 9s during the night and a couple during the day for 6 - 7 weeks
I am sure the D3 has made this difference, and although I was hoping for completely PF it has made my cycle manageable and I have been able to live a relatively normal life.
I am hoping that it will also help to shorten my cycle from the normal 6-7 weeks but we will see.

I have 1 question which is sort of related, I have been looking on the OUCH UK website and the moderators and admin on that site seem very reluctant to allow people on that forum to promote or share information on the D3 regime, they post disclaimers and even  shut down threads very quickly if someone mentions it. I can understand their reluctance to allow discussions on bustin due to the laws in the UK and their registered charity status but I don't understand the reluctance to discuss D3, it is a natural and safe method that seems to have helped a lot of people including me.
I think they do good work over there especially with advice on how to get o2 on the NHS etc but why are they so closed to the D3 regime?

Title: Re: Anti-Inflammatory