Hey PlayDoh,

Glad you're giving the anti-inflammatory regimen a try.  By tomorrow you may be doing even better.  Response times for the anti-inflammatory regimen range from two days to three weeks with a few trickling in after four weeks.  The majority go pain free by the end of the second week.

For reference, calcium citrate is the preferred salt of calcium.  It's easier on the gut than calcium carbonate which needs to be taken with food.

Take care and please keep us posted.

V/R, Batch

Hey Eric,

Thank you for passing your results after taking the anti-inflammatory regimen.  Given the typical response times and efficacy for this regimen compared to that of prednisone, I'd say the odds are 70:50 the anti-inflammatory regimen is responsible for the cessation of your CH.

I hope you find as my wife and I do...  that this is a daily regimen for life...  Lots of good health benefits and you'll feel a lot better too with more energy each day.  You'll also find you sleep a lot better too.

Regarding the more succinct list of supplements posted on ClusterBusters for the anti-inflammatory regimen, I've been remiss...  I sent them the updated list and dosing schedules but have yet to post it here at CH.com.

I've been working on an update to this regimen complete with an overall treatment protocol for CH and dosing strategies...  Unfortunately this takes time as I'm vetting the final version through several experts in vitamin D3 therapy and among neurologists who specialize in treating CH'ers.

What I can say at this point is the supplements and daily doses in your post are correct if you add Boron.  Vitamin K (actually vitamin K2) is one of the cofactors required in vitamin D3 therapy along with magnesium, zinc and boron.

If you use the Kirkland brand of calcium citrate from Costco, you get all of the macrominerals and micro minerals you need with the exception of enough magnesium.  Two of the Kirkland brand calcium citrate tablets contain the following assay:

500 mg.  Calcium
800 I.U.  Vitamin D3
  60 mg.  Magnesium
  10 mg.  Zinc
    1 mg.  Copper
    1 mg.  Manganese
    1 mg.  Boron

The Vitamin D Council suggests 500 mg. magnesium/day so if you use the Kirkland brand of calcium citrate, pick up a bottle of magnesium citrate or magnesium gluconate and take 400 mg/day.

That brings the total list of supplements and doses used in this regimen up to the following:

Anti-Inflammatory Regimen Basic Dosing Guide:

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.

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.  This is the serum level 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, CH'ers presenting with active CH have had test results for 25(OH)D come back as high as 43 ng/mL, (107 nmol/L).

Based on reports from CH'ers who have had a favorable response to this regimen, the optimum therapeutic target range for 25(OH)D for CH'ers to remain pain free appears to be 60 to 90 ng/mL, (150 to 225 nmol/L).  It can also take as long as three months to elevate 25(OH)D levels from 20 ng/mL to 60 ng/mL (50 to 150 nmol/L) at a daily dose of 10,000 I.U. vitamin D3.  Some CH'ers may need a higher daily dose of vitamin D3

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day)
Vitamin D3 *      - 10,000 IU/day
Calcium **         - 500 mg/day (calcium citrate preferred)
Magnesium         - 400 mg/day (magnesium citrate or magnesium gluconate)
Vitamin K ***     - 120 mcg/day
zinc                    -   10 mg/day
Boron                 -     1 mg/day   

This regimen can be taken any time of the day, but it's best taken in the morning with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with with a little honey.  Honey is a natural source of Boron, which is listed as one of the "cofactors" along with magnesium, vitamin K and zinc. 

If you miss a dose, take it asap.  It's important to keep building 25(OH)D levels and to keep them in the therapeutic range.

The list of micronutrients, macrominerals and micro minerals in this regimen are all important and each plays a role in making this CH preventative as effective as it is.

For example, the 500 mg. calcium in this regimen is essential as vitamin D3 pulls calcium from the gut and puts it into solution in the blood.  If you supplement with vitamin D3 and the total intake of calcium from all sources is not sufficient, the vitamin D3 will start leeching calcium from the bones...  Hmmm...  that's not good...

With the exception of vitamin D3 and Omega 3 Fish Oil, nearly all of the
remaining supplements are readily available in sufficient quantity in a good healthy well balanced diet of meat, fish, poltry, green veggies, cheese, oysters and honey.

For example, you can get your daily vitamin K requirements from green veggies or a slice of good Swiss cheese.   You'll get all the boron you need from a teaspoon of honey and a half dozen oysters, preferably raw on the half-shell with a dash of hot sauce... will give you a week's supply of zinc.

The Vitamin D Council indicates these cofactors help in metabolizing vitamin D3 into 25(OH)D and the calcium supplements aid in maintaining calcium homeostasis.  The calcium citrate and citric acid in the lemon juice or lime juice also combine to form a buffer in the stomach that can help elevate arterial pH which aids in stimulating vasoconstriction in and around the trigeminal nerves.  See the following link at the Vitamin D Council for an explanation of the vitamin D cofactors and their natural sources:

  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Notes:
(1)  Medication Interactions and Contraindications:
     * Reactions to vitamin D3 are very rare as skin exposed to the UVB in direct sunlight produces vitamin D3 naturally.  However, if you are allergic to sunlight, do not start this regimen without contacting your PCP or neurologist first.  If you experience a reaction to this regimen including and not limited to, an upset stomach 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.

  **  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, the 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 hours.  Again, discus this regimen with your PCP, neurologist, or cardiologist 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 K is generally contraindicated.  However, studies have found vitamin K2 to be an effective stabilizer in anticoagulant therapy, proving beneficial in situations of over-anticoagulation or when the response to therapy has been variable.  See your PCP, neurologist, and or cardiologist before starting this regimen if you are presently taking blood-thinning drugs.

(2)  Safety: This regimen is safe and well tolerated with many potential healthy 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 I.U. vitamin D3 (cholecalciferol) in as little as 15 minutes.  A recent study based on data from the GrassRootsHealth project of 3667 people taking vitamin D3 at various doses concluded:  Universal intake of up to 40,000 IU vitamin D per day is unlikely to result in vitamin D toxicity.

The folks at GrassRootsHealth Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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 to capture the essential demographic and epidemiological information.  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 home page shown below, none of the 3667 participants dosing at 10,000 IU/day or less had lab tests for 25(OH)D anywhere near the lower threshold for vitamin D3 intoxication at 200 ng/mL, (500 nmol/L).

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I've attached a study titled: Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention by Garland et. al, that's based on the GrassRootsHealth D*action Project data as further proof that long term use of vitamin D3 at doses as high as 10,000 IU/day are very safe.

(3) Efficacy and Response Time.  70 out of the 100 CH'ers (both episodic and chronic), who have tried this regimen over the last year have had a significant reduction in the frequency and severity of their CH and better than 90% of them have gone pain free.  Typical response times to this regimen range from two days to three full weeks with the majority occurring by the end of the second week.

As this regimen has many other health benefits beyond being 70% effective as a cluster headache preventative, it's best to stay on it as long as possible if not for life...  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).  Moreover, chronic CH'ers who stop taking this regimen after an extended period of use greater than six months, may experience a relapse with a resumption of CH in as little as a week...

(4) Mechanism of Action.  The precise mechanism of action of the anti-inflammatory regimen in preventing cluster headache remains to be fully determined, but it includes the following two possible mechanisms:

Omega 3 Fish Oil and vitamin D3 (cholecalciferol) are well documented as having anti-inflammatory properties.  It is possible these properties counteract the neurogenic inflammation present in the cluster headache syndrome.

In addition, at least two studies have pointed to the capacity of vitamin D3 to suppress or down regulate calcitonin gene-related peptide (CGRP) and vasoactive intestinal polypeptide (VIP), both of which are elevated during a cluster headache.

(5) 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, renal, hepatic, and pancreatic insufficiencies. Sub-clinical allergic reactions and sinusitis are also suspect.  If you presently suffer from one or more of  these medical conditions, work with your PCP to resolve them as this may increase the likelihood of favorable response to the anti-inflammatory regimen.

69Strat,

Hang in there... and see my PM to you.  Regarding the oxygen...  It sounds like your medical insurance company is trying to bluff you...  If you have a valid Rx for oxygen therapy signed by your doctor and your insurance company is refusing to cover it, ask for the name and address of their physician in writing who decided to disregard your doctor's written orders...

While you're at it, you can send your insurance company the following link from the U.S. Department of Health & Human Services National Guideline Clearinghouse.  It's the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.   This standard of care guideline lists oxygen therapy at 15 liters/minute as the first abortive of choice for the acute treatment of cluster headache.

This guideline also contains the following chart showing the standard of care treatments for cluster headache:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

You can also play the code game with them... 

Diagnostic and Treatment Codes

  Diagnostic Codes

    ICD-9-CM Diagnosis Codes:
        Episodic Cluster Headaches – 339.01
        Chronic Cluster Headaches  – 339.02

   ICHD-II Codes:
       Episodic Cluster Headaches – 3.1.1
       Chronic Cluster Headaches  – 3.1.2

   ICD-10 NA Codes:
       Episodic Cluster Headaches – G44.01
       Chronic Cluster Headaches  – G44.02

The following codes for treatment and procedures are applicable to most private medical insurance guidelines are included below for informational purposes.  Inclusion or exclusion of a procedure, diagnosis or device code(s) does not constitute or imply member coverage or provider reimbursement policy.  Refer to your medical insurance contract benefits in effect at the time of service to determine coverage or non-coverage of these services as it applies to an individual member.

Playing Hard Ball When Calling Your Medical Insurance Company

The following is a modified version of an article from a 2007 OUCH Newsletter

1. Record your conversation with them about obtaining home oxygen therapy. Be upfront with them that they are being recorded. Be sure to have your policy in front of you, and know it. They may quote clauses in it that do not exist. If they quote from it let them know it is in front of you and ask exactly where in the policy they are quoting.

2. Ask for names when talking to representatives, both first and last. The insurance companies may make statements that turn out not to be true when they deny you your oxygen therapy. In my opinion this is their Achilles’ heel.  In my experience they do not want to give their full names out, if they don’t give you their name ask for their supervisor, or their supervisor’s supervisor.

3. One of the first statements that they may make is to site the fact that Medicare does not cover oxygen therapy for cluster headaches and that insurance companies are allowed to use this rule.  Unless you are on Medicare and have no secondary medical insurance, this rule may not apply to you.

4. They may also tell you that hyperbaric oxygen therapy is not covered.  While this is true, your doctor has prescribed normobaric oxygen therapy at one atmosphere barometric pressure and this method of oxygen therapy is covered.  If they quote from the FDA Legend they are making the implication that limiting oxygen therapy it is a federal regulation. This is not the case; this is where asking for the representative’s name is important. Would you want to be on the record quoting non-existing federal regulations to deny someone a lawfully prescribed medication?

5. Have your medical insurance policy/plan booklet in front of you when you call. If they tell you the limits are in your policy, tell them you have it in front of you, and ask them exactly where it is.

6. By changing or failing to honor your attending physician's orders as expressed in the prescription he/she wrote, they are practicing medicine without a license. When they tell you they have a review panel that includes a physician, the physician on their panel is committing malpractice since he's changing your attending physician's orders as expressed in the prescription when he's never examined you. Ask for that physicians name and credentials, and request to speak to him directly.

7. Another common mistake made by the insurance companies is that they are treating you as a COPD sufferer.  You may have to point out several times that you do not suffer from COPD and your blood oxygen levels are fine, but you do suffer from cluster headaches. Treating them as one and the same is a medical mistake.

9.  Remember that you are your own best advocate.  Be assertive yet polite. When given an untrue statement, tell them that it is untrue and ask from whom they are quoting and ask to speak to that person directly.  Ask them if they are sure they want to be on the record quoting that statement.  Remind them that the monthly cost of coverage for triptan injections runs from $680 to $2550 and that a month’s supply (4 M-size Oxygen cylinders) costs less than $160.  Also remind them of the cost of an ER visit, mention to them that you would have no choice but to go to the ER for the attacks. 

10. If you are still not getting any satisfaction, ask for the form and web link containing the procedures for challenge a coverage limitation.  They are required by law to provide you with this information.  Also ask for the phone number for the National Association of Insurance Commissioners covering your insurance company.  You can find this at the following link if they can’t come up with a number:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


    Healthcare Common Procedure Coding System (HCPCS) Codes

        Equipment:
           E0424-E0425 Stationary compressed gaseous oxygen system
           E0430-E0431 Portable gaseous oxygen system

       Contents:
          E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit

      Modifiers:
         QG - Prescribed amount of oxygen is greater than four liters per minute (LPM)


NHS,  You're correct about most folks getting enough calcium from milk and cheese...  It's the folks who don't that are cause for concern given the 10,000 IU/day vitamin D3.  As long as there's no reaction, the additional calcium won't hurt.

Eric, I don't take vitamin K/K2 as I chow down on lots of green veggies and we go through a lot of cheese around here... so I'm not much help on what brand of vitamin K2 to get... 

The role of this micronutrient is important, but it appears to be readily available at more than the dose required in veggies and Swiss cheese... 

see Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Vitamin K2 from any major name brand mfg. should work just fine.

Hope this helps,

Take care,

V/R, Batch