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Batch's anti-inflammatory regimen for CH

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Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

Pete "Batch" Batcheller's Anti-inflammatory regimen for CH.

I have been in contact with Batch about bringing the latest version and facts about the Anti-Inflammatory Regimen to the Australian site. I will be working closely with Batch to bring all the latest research here, so we can implement it in Australia and try to get some of the CH relief that so many (81% of respondents) now report in Batch's surveys.

Here's the details.
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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.
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For CH'ers new to this regimen, having your vitamin D3 status checked is the first step. Do this by asking your GP or neurologist for a blood test for 25(OH)D. That's the serum level metabolite of vitamin D3 that's used to measure its status. Be sure to tell your GP or neurologist why you want it tested and take along a copy of this post.

The normal reference range for 25(OH)D is 30 to 100 ng/mL (75 to 250 nmol/L). Unfortunately, most physicians will say you're "normal" with 31 ng/mL... That's way off the mark for CH'ers... We need a target 25(OH)D serum concentration of 85 ng/mL, (212.5 nmol/L) and that will take the average adult 10,000 IU/day vitamin D3 over a 4 to 5-month period to attain.

The latest results from the online survey Batch has been running for over a year indicate 68 of the 84 CH'ers (81%) using this regimen who completed the online survey have experienced a significant reduction in the frequency, severity and duration of their CH. 60 are completely pain free. Their response times are illustrated in the following chart:

http://i378.photobucket.com/albums/oo230/F8Driver/Anti-inflammatoryRegimenResponse_zpsd9f2d587.jpg

As you can see... 75% of the CH'ers who experienced a favourable response had it occur within the first 10 days... On the other hand... some CH'ers took as long as two months to achieve a pain free response.

This isn't a regimen you take for a few days then quit... If you bail out of this regimen after just a week because you didn't have a favourable response... you could easily miss out on the benefits of a very effective and inexpensive preventative... with no real side effects.

Stick with this regimen for at least a month then see your GP for another blood test for 25(OH)D. Even if you don't respond in a month, there's still hope as there's usually a reason why, but you'll need the blood test for starters. When you have the blood test results, please take the anti-inflammatory survey. To start this survey, click on the following link:

http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c
5ce971022f6


The next chart illustrates the time 25(OH)D serum concentration response to various doses of vitamin D3:

http://i378.photobucket.com/albums/oo230/F8Driver/25OHDResponsetoVitaminD3Dose.gif

The top line indicates the average response to a vitamin D3 dose of 10,000 IU/day. As you can see the increase in 25(OH)D serum concentration increases rapidly for the first 10 days then it takes on an exponential shape, stabilizing in an equilibrium by the 4th to 5th month. As you can also see, the higher the vitamin D3 dose, the higher the equilibrium concentration of 25(OH)D.

The green color band indicates the range of 25(OH)D serum concentrations (60 to 110 ng/mL) reported by CH'ers after going pain free while taking the anti-inflammatory regimen. Batch indicates the running tally of CH'ers at CH.com (US) who have gone pain free on this regimen is 240 out of 300 (80%) who started it. So far only a handful of CH'ers have stopped taking this regimen and that includes the episodic CH'ers. Most of them are continuing on this regimen the year round in order to avoid going back in cycle.

Most CH'ers tend get impatient when CH is hammering away and want medications to work as fast as possible. What Batch has found is that an accelerated vitamin D3 dosing schedule increases the 25(OH)D response so CH'ers can go pain free a little faster.

The most popular and well tolerated accelerated vitamin D3 dosing schedule is 20,000 IU/day plus a 50,000 IU loading dose once a week. Batch indicates you can stay on this schedule for a month or until you go pain free, which ever occurs first and then drop back to a maintenance dose of 10,000 IU/day vitamin D3.

At the end of a month on this schedule, regardless of the results, you'll need to see your GP or neurologist for another 25(OH)D blood test then adjust your vitamin D3 intake down to a maintenance dose of 10,000 IU/day. The target 25(OH)D serum concentration of 85 ng/mL, (212.5 nmol/L).

Batch indicates the rational for maintaining this serum concentration of 25(OH)D is simple... This regimen isn't a cure and the 25(OH)D half life is a week to 10 days... Go without any vitamin D3 for that length of time and you'll fall out of the "Green Zone" and the CH attacks will come after you.

In case you're wondering about vitamin D3 intoxication... the dosing schedules Batch suggests in this regimen are conservative and very safe as illustrated in the following chart.

http://i378.photobucket.com/albums/oo230/F8Driver/Safe-ToxicVD3Chart_zps3a2ea633.jpg

Notes:
- The toxicity reports are generally for Vitamin D monotherapy
- Magnesium, Vitamin K2, and other COFACTORS are needed
- True toxicity (with cofactors) is probably much higher than the monotherapy line on the chart

Source: http://www.vitamindwiki.com/Overview+Toxicity+of+vitamin+D
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Finally, don't forget to take the rest of this regimen. The vitamin D3 cofactors are very important and an essential part of this regimen.

The 2000 mg/day Omega 3 Fish Oil acts as an anti-inflammatory and also aids in vitamin D3 absorption.

500 mg/day calcium (calcium citrate) helps maintain bone mineral density (BMD).

The most important vitamin D3 cofactor is magnesium. It's essential in vitamin D3 metabolism.

Vitamin D3 at the doses used in this regimen also depletes magnesium so you'll need 400 mg/day up to as much as 1000 mg/day if needed.

Magnesium glycinate, magnesium malate or magnesium citrate are the preferred magnesium compounds to take. All three have a high bioavailability. Magnesium glycinate has the least laxative effect at higher doses... Magnesium oxide has the lowest bioavailability and can also make you loose as a goose.

Vitamin K2 MK-7 helps direct serum calcium away from soft tissues and arteries towards building BMD. 120 mcg/day should be sufficient.

Vitamin A (retinol) is also essential. It plays a significant role in the extra-renal autocrine path of vitamin D3 metabolism that takes place at the cellular level throughout the body. This is the mode of vitamin D3 metabolism we think is responsible for the cluster headache preventative effect... A little vitamin A goes a long way. Don't take more than 900 mcg/day (3,000 IU/day).

Some CH'ers want to take a multi-vitamin with B12 and vitamin C. Batch takes a multi-vitamin called Centrum Silver. He uses it as his source of vitamin A and vitamin K.

The data Batch has collected from the online survey indicates this regimen can be taken with nearly all the standard CH meds; although there are a few studies that have found that steriods slow vitamin D3 metabolism. CH'ers taking blood thinners like coumadin (warfarin), rat poison as Batch calls it, for a heart condition, need to discuss the vitamin K2 with their physician before taking it. Vitamin K1 and K2 are contraindicated for people taking blood thinners.

I will keep the site updated.

Please report your experiences taking the regimen. Help Batch to help us by clicking on the survey (link above) and reporting your outcomes. The feedback data from patients will help to get GPs, Doctors, Neurologists and other Headache Specialists to sit up, take notice and bring even more hope and relief to CHers worldwide.

Pain free days to all.

Cheers, Ben.This post was edited on 10/05/2013 at 4:49 pm
5 people like this

dev1980

(Member)
From: Northcote, Melbourne
59 total posts
Not currently suffering :D
Thanks for the info Ben. Have looked a batches thread a few times. interesting stuff.

Is the regime also suggested for people in remission to start?This post was edited on 09/04/2013 at 9:47 pm
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Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi Dev,

I would say so, if you want a shot at potential CH relief, with no real side-effects.
Batch explains that ramping up D3 serum levels, together with the co-factors can take a while before positive responses in CH are reported. Most stay on the regimen, even if episodic, it has many health benefits beyond CH - "So far only a handful of CH'ers have stopped taking this regimen and that includes the episodic CH'ers. Most of them are continuing on this regimen the year round in order to avoid going back in cycle."

dev1980 said: "still spend time getting prepared for the next bout. That was the problem when i was in cycle i was putting it off and then they went away and came back and i was in the same place."


With respect to the use of the regimen for those in CH remission; I think you answered your own question a couple of posts back Dev, but I know where you are coming from.
If you know the suckers will be back, planning ahead is a good idea, indeed.

Cheers, Ben.
3 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

I have a few PMs from people, indicating that they would like a straightforward recipe, so they can seek vitamins and co-factors from their Pharmacies and begin taking the regimen.

The following link will take you to the post titled: "Anti-Inflammatory Regimen and Survey", on the CH.com Forum in the US.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


This link also contains the latest list of supplements used in this regimen (Some call it the Recipe) suggested by Batch. He keeps this list updated on a frequent basis.

Be sure to see your GP after 30 days on this regimen for a blood test of your 25(OH)D serum concentration if possible. This is particularly important if you've been taking more than ten thousand IU/day of vitamin D3. Once you have the results of this 30-day blood test in hand, be sure to take the Anti-Inflammatory Regimen Survey.

If you have problems reaching the US CH.com web site, and you want to take this survey, click on the following link:

http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c
5ce971022f6.


If you're still having problems getting to this site, please let me know.

Cheers, BenThis post was edited on 15/04/2013 at 12:17 am
3 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
LOCALISING THE REGIMEN.

UPDATE ON SOURCING AUSTRALIAN LOCAL INGREDIENTS ON-SHELF FOR THE REGIMEN.

See this link, or those in previous posts for the current "recipe", updates and co-factors.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


If anyone is having trouble finding the right Vitamin supplements in Pharmacies with a print off of the regimen in hand, you're not alone.

Australian Pharmacists can be quick to condemn alleged "high doses" of Vitamin D3. To be fair, they are trained in "normal" safe ranges on supplements (or Recommended Daily Allowance - RDAs), when giving Pharmacist advice. They are unaware of what we are trying to achieve in CH specifically here and will often recommend against high Vitamin D dosing, with little or no evidence to back their claims.

Show them the graphs and studies Batch has provided and most will soon come around. Check out The Vitamin D Council's recommended D3 doses and many studies that support higher D3 dosing in non-migraine Headache conditions. I found some of the more knowledgeable Pharmacists most helpful, even encouraging. If they don't want to help, find another Pharmacist. Resistance to these ideas here is far stronger than in the US, where they routinely sell D3 in 5,000IU or 10,000IU capsules over the counter.

When seeking D3 capsules in concentrations higher than 1000IU, there is not much on-shelf in Australia. The Pharmaceutical Benefits Scheme (PBS) has higher dosages available via GP prescription; in powders, oils, gels etc. See your GP to get your D3 blood levels tested and while you're there, ask your GP for a supervised prescription of higher dose D3 if you want to add loading doses to get your D3 levels up faster.

In close consultation with your GP, follow Batch's instructions on his links (provided above and throughout) on D3 dosing schedules, seeking regular blood tests and always follow up on D3 serum level tests with your GP.

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I post this list of Vitamins and co-factors here (below) for reference purposes only, as the regimen may change. Keep a close eye on the link to the regimen for recipe updates and your safety.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


List of vitamins and co-factors we are seeking:

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360mg/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 K2*** - 120 mcg/day (MK-7)
Vitamin A **** - 900 mcg (3,000 IU) for men and
- 700 mcg (2,333 IU) for women
Zinc - 10 mg/day
Boron - 1 mg/day


With the exception of vitamin D and vitamin K2 MK-7, all the rest of the supplements in the anti-inflammatory regimen should be taken at Recommended Daily Allowance (RDA) or less.

Research and know your Vitamin and mineral - Recommended Daily Allowance (RDA).

The United States National Library of Medicine's, Dietary supplement's labels guide. An excellent resource to locate brands, check the studies, find datasheets and answer any questions about your Vitamin supplements and RDA.
Vitamins: http://dietarysupplements.nlm.nih.gov/dietary/vitaminIngred.jsp
Minerals:
http://dietarysupplements.nlm.nih.gov/dietary/mineralIngred.jsp

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Current On-shelf availability.

Fish Oil.
Example: Swisse High Strength Fish Oil, 1500mg.
Contains Omega 3 marine triglycerides 450mg as:
EPA 270mg
DHA 180mg
2 X these capsules per day should fulfill Batch's criteria.

Swisse advise dosages of up to 6 capsules per day in joint health, so safety of 2 of these capsules is well within range.

http://www.chemistwarehouse.com.au/product.asp?id=61283&pname=Swiss
e+Ultiboost+High+Strength+1500mg++Wild+Fish+Oil+200+capsules

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Vitamin D3.
Example:
Swisse Ultiboost Vitamin D 250 Capsules, 1000IU.
Ostelin D3 1000IU oilcaps.
Contains oil/gel capsules (not tablets).

10 X of these capsules = D3 at 10,000IU, the daily D3 dose we are after. Safety data and D3 dosing strategy is here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


http://www.chemistwarehouse.com.au/product.asp?id=63243&pname=Swiss
e+Ultiboost+Vitamin+D+250+Capsules

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Calcium Citrate.
I have found Citracal in Amcal Pharmacies here for between $12-$18.
It is also available on-shelf at other Pharmacies.

Calcium citrate (1.19g equiv, elemental Calcium 250mg)
I bought the pink labelled one in the picture on the Citracal site below.
The Citracal site. http://www.citracal.com.au/

**Warning: Verapamil users! Calcium supplements can interfere with Calcium channel-blockers, like Verapamil. Beta blocker users of Atenolol (Noten, tensig etc) and Propranolol should also be wary of Calcium supplement interactions. Calcium supplements may alter the way in which Atenolol and Propranolol behave and the way in which they are absorbed. See Batch's regimen link for more detail.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Calcium information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Calcium&id=1041


http://ods.od.nih.gov/factsheets/Calcium-HealthProfessional/
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Magnesium.
Batch advises using either Magnesium glycinate, Magnesium malate, or Magnesium citrate.

These are on-shelf in most pharmacies.
Feel free to seek alternative brands.

Swisse Magnesium 60 Tablets
Magnesium 150mg, (Magnesium Citrate 927.64mg)
http://www.chemistwarehouse.com.au/product.asp?id=66393&pname=Swiss
e+Ultiboost+Magnesium+120+Tablets


Sara has also made me aware of a more tolerable form of Magnesium - An organic form of magnesium - "Magnesium Orotate".
Thanks Sara.

Calcium information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Magnesium&id=1156


http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

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Due to lack of an Australian regulatory approval (TGA therapeutic goods register) Vitamin K2 menaquinone-7 (MK-7) "on-shelf" in Australian Pharmacies is not yet available. Most local wholesaler's inventory lists do not show any available K2 supplement, I am working with Pharmacists to establish Australian stock lines of K2 (MK-7). Regimen users will have to seek it from online Pharmacies in Australia, or perhaps ship it in from outside of Australia.

See links to vitamin K2 (MK7) suppliers in the posts following this one. Batch came up with some good ones.

***Warning: Blood thinners such as Warfarin or Coumadin are contraindicated with vitamin K2 use. See Batch's original thread for details on K2 warnings.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Vitamin K2 information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Vitamin+K2+%28as+menatetrenone%29&id=4547

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Vitamin A and Zinc.
You may want to rely on your diet and/or your Multi-vitamin, (like Centrum) for your Vitamin A and Zinc intake.

http://www.centrum.com/

Feel free to find an alternative source of Vit A and Zinc with respect to RDA.

The regimen recommends Vit A at daily doses of 900mcg/3000IU for men, 700mcg/2,333IU for Women.

There are known dangers in using excess Vitamin A, so err on the side of caution. Know your RDAs.

****WARNING: When taken in excess of 3000 micrograms retinol equivalents, vitamin A can cause birth defects. If you are pregnant - or considering becoming pregnant - do not take vitamin A supplements without consulting your Doctor or Pharmacist. The recommended daily amount of Vitamin A from ALL SOURCES is 700 micrograms retinol equivalents for Women and 900 micrograms retinol equivalent for Men.

Check your diet for sources of betacarotene, a precursor of Vitamin A.
A daily serving of carrots, spinach, or squash are all a great source of beta carotine and will meet your RDA (Recommended Daily Allowance) or RDI. Know your Vitamin A intake and proceed with caution. (If you are taking a Multi-vitamin like Centrum - read it's Vitamin A retinol equivalent (R.E) and factor this in.)

Again, Batch's important safety data is here:
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Vitamin A information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Vitamin+A&id=1282


http://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/

Zinc information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Zinc&id=1300


http://ods.od.nih.gov/factsheets/Zinc-HealthProfessional/
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Boron.
You can get this from a couple of teaspoons of Honey.

Boron information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Boron&id=1033


http://www.nlm.nih.gov/medlineplus/druginfo/natural/894.html

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Here, I have made my first attempt at Australian "on-shelf" adaption of regimen Vitamins and co-factors. In an effort to focus on safety and availability, I have gone down the "on-shelf" track, in order to avoid some disingenuous international sellers, Ebay and any postal or Customs issues. Also when you buy "on-shelf" here, there is TGA approval, personal 1 on 1 Pharmacist advice and guidance available, that you will not find online. GPs too, are familiar with "on-shelf" product here in Australia and are better versed to deal with these than unknown overseas or backyarder's versions. (Some supplements on offer online were shockers in my research). So, I hit pharmacies and their wholesalers here online and on foot, for true reflections of what is available in Australia.

Localising the regimen is challenging in Australia, I am sure it will need tweaks. I have far from exhausted all possibilities.

The original thread link, posted throughout is the place to look for all info regarding the regimen.

Not all of the co-factors need to be sourced in a bottle.
Dietary factors can assist in bringing CH relief.
Honey for Boron, more sunshine for Vitamin D, carrots and vegetables mentioned (via beta carotene) for Vitamin A.

The world and the internet are a huge place...
I am sure CHers will find Aussie resources I have not.
Feel free to find other brands, other sources, contribute your ideas here, we will all benefit.

That's what this thread is for.

As always, check Batch's thread (Yeah, I know - again).
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4

Consult closely with your GP and/or specialists on all of this.

Be sure to have regular pathology tests and discussions with your GP. Know your vitamins, read up on them, know your RDAs, potential safety issues and check all vitamin & mineral supplements for known interactions with all of your CH medications. If anything goes wrong, seek prompt medical advice from a qualified medical professional.

Hopefully, we are looking toward some pain free days.
If you do well - don't forget the survey!!!!!!

Whew... smile

Cheers, Ben.This post was edited on 10/05/2013 at 4:55 pm
3 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
P.S - I have been taking 10,000IU of D3 for quite a while and D3 loading doses. Day 3 of regimen for me, with co-factors (except K2, yet to locate). From 5-6 attacks aborted with Imigran 4 days ago, to almost entirely PAIN FREE today.
I have not taken Imigran in 3 days now.
This never happens - my Chronic CH tapers off over 2-3 months, if it ever stops.
No preventive used in the history of CH has worked this fast for me (Except transitional use of high dose Prednisolone) - and I have tried them all. (My specialist says we have scraped the barrel - it's official, we have tried everything)

Through 70 drug trials and 34+ years of chronic, intractable CH, I have never seen results either this fast (except the high dose Pred) or this side-effect free. This is not a spontaneous CH remission.
Autonomous attacks still occur in me, but severity is 0.5, where it was 10.
Frequency is 1 or 2 per day and dropping, where it was 5-6.
Duration, well it really isn't a concern, due to the reduced severity and frequency. All this by DAY 3 everyone...

Through my own experience in CH and vast amounts of pill popping, I can probably exclude any placebo or nocebo response. Wanting something to work and seeing a positive response never occurred in my 70 drug trials and I don't think it has now.

Early days for me yet. When it comes to trials of new CH treatments, I am a cynic and will wait and see what happens.

I think Batch is really onto something.
Try it and see.

Pain free days to all.

Cheers, Ben. iconiconicon

**Update: Day 7 - My D3 levels have still not been measured by pathology test, so unable to tell if I am officially in "The Green Zone" yet. Waiting one moth before pathology testing.
Still getting the occasional attack, mostly 1 at night.
Using Imigran injection for those.
This level of improvement cannot be understated!
Beats the hell outta 4-6 attacks per day, I was having.
The regimen needs time, blood testing and individual tweaks!
Fine tuning in progress...
Within RDAs, I am lowering Magnesium, seeking alternative sources of Calcium through diet, changing multivitamin etc etc.
I can feel the merits in this - my brain tells me something is changing for the better. It's this or destructive surgery for me, so I'm stickin' to it!

Ben.This post was edited on 29/06/2013 at 1:10 pm
4 people like this

grannysa

(Member)
From: Dalby
158 total posts
Not currently suffering :D
Thanks for all your work with this Ben and great to see you green
Sara
3 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Thanks Sara and all,

Vitamin K2 availability in Australia.

We are running into a few issues finding reliable and good "bang for buck" K2 vitamins here in Australia. The TGA's Therapeutic Goods Register show no listing for K2 supplements here.
That's why we won't see them on shelf in the more...let's say "credible" Pharmacies.

Vitamin K status in the form of blood tests appears difficult to achieve.
The tests are complex, perhaps not routinely conducted (must verify this with Pathologists) and results are a rough estimate at best.
Proof of K2 in serum levels would be a desirable indicator, I would expect. This would be a good way to see if we are getting any real K2 MK-7 from these alternative sources.

The good news is, Batch is on it.
He is sifting a ton of literature on K2, variants and its availability for everyone. If it's like any other supplement I have looked at, not all are created equal and some give better bang-for-buck, which can be important across the life of the regimen.

Prices on different dosages and products vary considerably, depending on whose dosage instructions you take on board and whose prices you are willing to pay.

Amazon is off the menu for us, (on my default shipping address anyway) it appears that they won't ship Vitamins here. This is a shame, as some of their K2 complex vitamins look very promising for the regimen.

Thanks again to Batch for providing links, availability and cost per dose data:

Cost in USD/100 mcg... the suggested daily dose ~ cost/day.

http://www.vitacost.com/vitacost-vitamin-k2-mk-7-with-nattokinase-1
00-mcg-90-softgels

16.2 cents/100 mcg - OUT OF STOCK

http://www.herbalprovider.com/Vitamin-K2-MK-7
16.62 cents/100 mcg

http://www.swansonvitamins.com/superior-source-vitamin-k2-mk7-100-m
cg-60-tabs
24.9 cents/100 mcg

http://www.biotechpharmacal.com/catalog/mk-7-vitamin-k2/
38.6 cents/100 mcg

Solal Technologies, a South African company, offers a Vitamin K2 formulation of MK-4 and MK-7 for R179, or 63 cents (Australian)/day

http://www.solaltech.com/new/shop/index.php?act=viewProd&productId=
5186

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One of the best all-round formulations of vitamin D3 (5000 IU/capsule plus cofactors and vitamin K2 MK-4 and MK-7 comes from Purity Products. It's formulated by the Executive Director of the Vitamin D Council, Dr. John J. Cannell, Vitamin D with Vitamin K is a next generation vitamin D complex that includes patented Super Boron, extra vitamin K2, zinc, and magnesium.

This is tantalisingly close to what we need, but is for sale only in the US:

http://www.purityproducts.com/purityEcommerce/control/productDetail
?productId=dr-cannells-vitamin-d-vitamin-k


At the best price for a 30 day supply with automatic delivery, 2 capsules taken twice a day for a total of 10,000 IU/day vitamin D3 plus K2 and cofactors) costs $40 USD or $1.33/day. Unfortunately, it's a bit pricey and only offered in the US... for now.

I have supporting research links and studies if anyone wants to further investigate. Feel free to drop me a PM and I will paste in the links for those doing K2 (MK-4 and MK-7) research.

Thanks again to Batch!
He makes me sound like I know what I'm talking about...icon

Cheers, Ben.This post was edited on 24/04/2013 at 8:45 am
2 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi again to all,

User input on sourcing and your experiences in using the anti-inflammatory regimen ingredients are always appreciated and are more than welcome here. The more feedback, the merrier.

When sourcing supplements, for your health and to ensure the integrity, efficacy and safety of the regimen:

- Be sure to check the integrity of supplements by seeking clinical trial results.

- Be sure also, to check the integrity of vitamin and mineral suppliers, by reading user feedback on theirs and others review sites.

- Try to find the best info on shipping to be sure potential suppliers state to which countries they will ship.

- Compare disclaimer information on supplement provider's sites.

Very few have FDA approval, but some companies have voluntarily participated in independent third-party Good Manufacturing Practices (GMP) audits, long before the FDA released their final regulations for the dietary supplement industry.

Others Disclaimers are at best, disingenuous, like this one from a supplement provider; "Disclaimer: Statements made, or products sold through this website, have not been evaluated by the United States Food and Drug Administration. They are not intended to diagnose, treat, cure or prevent any disease. Products, services, information and other content provided on this Site, including information that may be provided on this Site directly or by linking to third-party websites are provided for informational purposes only."

Clearly not all vitamin supplement providers offer their users accountability, or share the same level of testing or confidence in their products.

- Have a look at Customs law and verify with Customs to see if your supplement of choice is a legal import and will not be withheld.

- Try to use your banking safety mechanisms and internet smarts to make sure you don't get ripped off, or sold a bottle of sugar pills - worse still, something dangerous.

If it looks too good to be true - it probably is.

Whilst K2 (MK-7) has not met Australian regulatory approval and will not be found on-shelf here, Batch (via myself) has provided the above tried and tested links in the previous posts, so that seekers of regimen K2 (MK-7) supplements may make an informed choice in who they deal with.

Happy hunting.

Cheers, Ben.iconThis post was edited on 26/05/2013 at 11:13 pm
2 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Ho to all the good people of Clusterville,

It's just over 2 weeks since posted and Batch's Anti-Inflammatory regimen is at 200 views.

Would any CHers out there like to share their own experiences with using Batch's Anti-Inflammatory regimen?

Many people are interested and watching, as is Batch.
Perhaps some patient feedback on your experiences here would encourage more CHers to give it a try.

Cheers, Ben.
2 people like this

grannysa

(Member)
From: Dalby
158 total posts
Not currently suffering :D
Hi all
I started on Batch's regimen when it was first discussed on the site by Barry Coles in March 2011. Prior to this my CH had been quite debilitating - I'm episodic and a couple of cycles had been up to 6 attacks a day, giving me no option but to bring my annual leave forward and take 3 weeks off work in order to try and get a handle on things.
I did a bit of internet research plus talked to my GP about the effects of following such a regimen and was simply told (with disinterest) "that taking supplements within the RDI was unlikely to do me any harm".
My pharmacist was heaps more enthusiastic and very helpful, but again cautioned me to stay within the RDI if I was planning to follow this long term.

The regimen I ended up with is as follows -

Magnesium orotate (3 x 400mg) taken at night for better absorption
Calcium carbonate 1000mg (taken in morning)
D3 1000IU (taken in morning combined with the calcium)
Taurine (1/4 teaspoon) + honey (1 round teaspoon) - in breakfast smoothie with milk, yoghurt and fruit (banana preferred as it has potassium)
I also take 1/2 Berroca in the morning - as well as the B group vitamins, the 1/2 tablet contains 50 mg calcium, 50 mg magnesium, 5 mg zinc and 250 mg vitamin C.
I take no other medication, prescribed or otherwise.

Prior to started the regimen, I'd had a bit of an inkling that my diet was also playing a part, so I had been recording what I'd eaten in my CH diary -
I was using the diary available on the site, and found a few things of interest there.
In a nutshell - headaches were worse if I ate crap.
I also checked out body inflammation and pH levels on the internet - lots of "alternative" stuff, but no real medical evidence re diet and pH - but what the heck, I applied the "unlikely to do any harm' test and cut down drastically on red meat, sugar and dairy, and upped the vegies.
As well as starting the regimen and overhauling the diet, I started better sleep habits - going to bed and getting up at pretty well the same time every day, using heavier curtains and getting rid of the clock radio with its annoying red light.

The outcome - pretty well immediate improvement! Cycle continued on its merry way, but less intensity and less frequency;
so continued with regimen and other changes when out of cycle to see what the longer term effects were.
Next cycle - spring 2011, amazing!! Cycle only lasted a month (had been around 11 week cycles previously) and again, much less frequent (about 10 headaches / week) and less intense - nothing over a 6.
Since then a continued improvement - cycles occur with change of season but last only 2 - 3 weeks, have around 4 headaches a week. Pain around a 4 - easily managed with a heat pack.
Headaches now only last 20 minutes or so, whereas before 60 - 75 minutes was the norm. The only hiccups have been when I've got a bit cocky and drank alcohol mid cycle - the devil is always there waiting for you to slip up!
I haven't even bothered to change my status to red for the last couple of cycles because the whole thing is pretty well over by the time I think about making the change.

So - an appraisal of the whole thing -
Firstly, CH is only a "minor inconvenience" to me at the moment and I'm elated about that.
Has Batch's regimen made a difference?
Well, to be completely honest, I don't know. As I have said above, as well as starting the regimen 2 years ago, I also made a number of dietary changes;
and as a female at 49 years of age it's fair to say I'm undergoing normal hormonal changes associated with ageing as well.
But, my instinct tells me it has.
My advice - for what it's worth - is to give it a go. As my GP and pharmacist noted "it's unlikely to do you any harm", and be prepared to commit for the long term as it may take a while for any benefits to show.

Let me know through the thread or through PM if you need any more info - very happy to help where I can.

Cheers
Sara
Am hoping this posts - I'm using notepad and copying because like many others I'm having trouble....
1 person likes this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

Firstly an acknowledgement.
Batch has done the heavy lifting on all this, long before I even joined the site here. I am a regimen newcomer. Barry T Coles was Batch's friend and Australian CH contact point for all things O2 and on the regimen.
Although no Barry substitute, by any stretch, I was appointed a mod by Roger after turning the position down on more than one occasion.
In Barry's absence, I was also appointed "the man" (Batch's words, not mine) for passing on the regimen in Australia.

Barry bought the regimen to us all and I couldn't thank him enough for it, and did when he was still with us. At the time, I had my own discussions with Batch going, on seeking a clinical trial of the regimen here in Australia. Somewhere in the middle of it all, I ended up as an appointee by default.

Barry started the regimen work here.
Someone has to continue the work, so here I am, very much ill-equipped to fill such shoes.

I have no business posting a vitamin regimen here, but perhaps I am the only man here for the job... (Hi Batch!)

I will do my best by Barry, Batch and their work.

Sincerely, Ben.
---------------------------------------------------------------------------------------

Vitamin D research is a HUGE are, as I have been finding out.
Dozens of studies on Vitamin D are published every week.

For those interested in Vitamin D studies, discussion and a jumping off point for research, I will drop the Vitamin D council's website link here.

http://www.vitamindcouncil.org/

------------------------------------------------------------------------------------
Below: An interesting position statement on Vitamin D dosing.
(In Australian Pathology labs, we use nmol/l indication in reference to 25(OH)D serum levels, not ng/ml, as in the US)
-------------------------------------------------------------------------------------

For health professionals:
Position statement on supplementation, blood levels and sun exposure

Posted on January 12, 2010 by Vitamin D Council

Blood Levels

The marker for vitamin D status is 25-hydroxyvitamin-D [25(OH)D], a metabolite of vitamin D3. A 25(OH)D level determines whether a person is deficient, sufficient, or toxic in vitamin D. At this time, there is not a consensus in medicine in what blood levels define these categories.

The Vitamin D Council recommends maintaining serum levels of 50 ng/ml (equivalent to 125 nmol/L*), with the following reference ranges:

Deficient: 0-40 ng/ml (0-100 nmol/l)
Sufficient: 40-80 ng/ml (100-200 nmol/l)
High Normal: 80-100 ng/ml (200-250 nmol/l)
Undesirable: > 100 ng/ml (> 250 nmol/l)
Toxic: > 150 ng/ml (> 375 nmol/l)


(*Note: 25(OH)D levels can also be defined in units of nmol/L. The conversion between the two is [nmol/L]=2.5*[ng/ml])

The Vitamin D Council makes a recommendation of 50 ng/ml and defines the above reference ranges for the following reasons:

- The human genome was selected with abundance of vitamin D. Humans evolved in the sun near the equator, synthesizing robust quantities of vitamin D in the skin. Research has shown that lifeguards, farmers near the equator, and sun dwelling hunter gatherers maintain blood levels between 40-80 ng/ml on sun exposure alone1,2,3.

- The Vitamin D Council believes that the maternal 25(OH)D status necessary to provide antirachitic activity for offspring should be considered a biomarker for optimal vitamin D status in humans. Research shows that antirachitic activity in breast milk occurs at 45 ng/ml or higher, but not at 38.4 ng/ml or lower4.

- Research has generally shown that parathyroid hormone is maximally suppressed at 40 ng/ml or higher, another finding that the Vitamin D Council considers a biomarker for optimal vitamin D status5,3.

- The human body is usually unable to achieve 25(OH)D levels above 100 ng/ml on UVB exposure alone3. There are no studies to date to suggest that 25(OH)D levels over 100 ng/ml are beneficial, so the Vitamin D Council believes that the upper limit should be set at 100 ng/ml.

- Vitamin D toxicity manifests itself by hypercalcuria and hypercalcemia. Research has shown that serum calcium levels are not related to 25(OH)D levels up to 257 ng/ml6, but cases of toxicity have been reported at levels as low as 194 ng/ml7. The Vitamin D Council believes that a conservative threshold of 150 ng/ml should be considered the lower limit of toxicity.

The Vitamin D Council recognizes that there are not enough controlled trials at this time to either support these recommendation or oppose these recommendations.

Study references are included in the below link.

Source:
http://www.vitamindcouncil.org/further-topics/for-health-profession
als-position-statement-on-supplementation-blood-levels-and-sun-exposur
e/


Cheers, Ben.This post was edited on 10/05/2013 at 4:57 pm
2 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

Tweaked the regimen, persistence pays.

- Now on 15,000iu D3 - 5000IU 3 times daily, 8 hrs apart..

(It's worth noting that an external audit of D supplements showed a comparison between stated on-label content (IU) and actual supplement content. Results varied from as little as 9% of on-label stated D3 content, up to 146%.)

http://www.sciencedaily.com/releases/2013/02/130211162231.htm
http://archinte.jamanetwork.com/article.aspx?articleid=1570096

Not all D3 supplements are created equal, even within the same bottle, hence the need for regular 25(OH)D serum tests and D3 dosage adjustment to suit...)

- 6 X 1500mg fishoil. (2 X capsules, 3 times daily, 8 hrs apart)
I wash that lot down with a big glass of milk, for Calcium (250ml/300mg calcium).

- 300mcg Vitamin A, & 5 mg Betacarotene/day.

- Honey twice daily, 2 teaspoons total (for Boron).

I dropped Calcium supplements in favour of huge calcium intake from diet (200% RDI) due to a calcium supplement reaction with Atenolol, my heart rhythm drug. (watch out for Calcium and beta-blockers, Atenolol (Tensig, Noten etc, and Propranolol)

Dropped Magnesium back to 50mg oxides, found in Centrum.
(Yet to find tolerable Magnesium, currently looking Magnesium Orotate or at Epsom salt (Magnesium Sulphate) baths and transcutaneous mineral absorption studies.. looks like it might be a possibility: http://www.epsomsaltcouncil.org/articles/report_on_absorption_of_ma
gnesium_sulfate.pdf
) still tweaking...

Dropped Zinc back after an unexpected reaction (50mg/day, had numb top lip) Now on around 10mg Zinc/day.

Got the K2 MK-7, for redirecting serum calcium back into bone mineral density, as a long-term measure.
K2 MK7 (Menaquinone) data sheet:
http://www.douglaslabs.com/pdf/pds/200913.pdf
This does nothing for CH, itself, but preserves, possibly even builds bone density. This really gets peripheral circulation going!
My cold extremities (from Imigran use) are now quite warm.

BP and HR stable.

Gone from 4-5 attacks, back to zero - I'm green!

That's twice the regimen has worked like this.
I have withdrawn it for 10 days washout, waited for CH to resume hammering, which it dutifully did.
Had 5 attacks per day for over a week.
Re-introduced the cofactors one by one, upped the D3, it took a while and I'm green again. Vitamin A seemed to flick the switch on the D3 reserves and it all kicked in.

It takes some tweaks, but the regimen can work wonders.
Still need 25(OH)D serum tests...

Putting this in front of the Prof in the next couple of weeks.

Gotta go..

Cheers, Ben.This post was edited on 10/05/2013 at 4:59 pm
2 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

I hope those under the duress of severe CH pain will consider the regimen.

I took my CH case, a copy of the regimen, an extract from Batch's unpublished paper and my own accumulated CH data in for clinical assessment.

My specialist is certainly the man for the job.
I know I go on about him sometimes, but the man really is brilliant.
Professor of Clinical Pharmacology (Not a Neuro), Headache specialist, an excellent pain clinician, Headache researcher extraordinaire, IHS Member, prolific writer of papers, ethicist, NPS member and all round bloody good bloke.

I caught up with him yesterday.
We discussed many things.

I showed him the regimen and my successes with it.
He indicated that the D3 dosing was not excessive (paraphrasing here).
He decided to give me some clinical supervision, for safety reasons.
This is something no GP was willing to do.
My specialist explained that as clinicians, GPs and practitioners are trained in the use of Vitamins & Minerals to treat deficiencies. This will lead to recommendations within RDAs. GPs are not trying to treat chronic disease with D3 doses, or any doses beyond RDAs. The RDA/RDI system is something they are trained not to question, it is the product of expertise and experience. GPs are not going to "trailblaze" outside of recognised guidelines. So looking for full GP support here in Australia, when taking the regimen, is unlikely to occur. They are not trained for this sort of approach.

Having said that, I got some clinical supervision for safety.
One of the known problems with taking excessive D3 doses is Hypercalcemia (and I mean Excessive - over 40,000IU/day, or megadoses of 1,000,000IU, yes 1 Million IU).
Hypercalcemia (google it) is too much calcium in your blood.

Yesterday I did a serum calcium test (blood test) for safety.
I will let the site know how it goes.

I've been on 5000IU D3 X 3 daily (every 8 hours)
2 capsules of 1500mg high strength fishoil (every 8 hours) total 6 per day.
2 X Centrum, 1 morning, one night.
I wash down each D3 dose with at least 250ml of high calcium milk.
(I had a drug interaction with calcium supplementation and a beta-blocker for heart rhythm, Atenolol. So I had to stop Calcium supplementation and use diet, I get about 200% RDA of calcium through diet,. Yoghurt, cheese, milk etc)
I have ditched Magnesium, except from the 100mg of Mag Oxide I get from 2 Centrum per day.
I had some weird feelings in my chest after taking K2 MK-7 (Menaquinone) so yesterday I stopped taking that too.

I have done 3 complete "burn downs", where I withdraw the regimen and wait for CH to hit. It takes about 12-36 hours.
I get back into a 4-5 attack per day cycle, aborted with Imigran, for 10 days. Then I drop a 50,000IU D3 loading dose, reintroduce the regimen and it takes about 72 hours to stop CH again.

3 times I have withdrawn the regimen, to a consistent bludgeoning of CH. 3 times I have re-introduced it, to have CH stop.
This rules out placebo effect and establishes efficacy in my case.

It is NOT A CURE. CH still blazes away.
I still have all the other symptoms of regular attack.
I am having one now, but pain level is 0.5, where it may have been 5-6-7. I'm at the computer, not writhing in bed.
This feels like Pred. Attacks blaze away, just under the threshold of the "preventive" and threaten to break through. Sometimes they do. I took Imigran FDT yesterday morning for one absolute bastard of an attack that awoke me at 5am. But I have had only 2 Imigran FDT since 28 April - now 16th May, no injections in that time. All through April I was taking 3-4 FDT per day and using an Imigran injection every 48 hours or so, sometimes 2 a day.

Frequency has now gone from 4-5 attacks per day, back to 1 or 2.
Severity has gone from 7 - 10, back to 0.5 - 2, simply not worth medicating. Duration is now longer because I use no abortive drug.
I get the full 3 hours now, but the reduced severity means it is nothing more than a painful inconvenience, like a Migraine is...

The other symptoms are still disabling.
Photophobia, Phonophobia, sweats, shakes, pupils shrinking, stabs behind my right eye, but it is reduced so much.
I notice that if an immune system consumer comes along, like a head cold, the D3 seems to be used up in dealing with that and CH will kick my ass. But D3 keeps head colds down to a 24 hour incident, instead of weeks. So I stay on the regimen and within 24hrs, the sniffles are gone and with it, CH too.

Some measuring and tweaking left to do for sure.
I will use the clinical supervision and pathology as a guide and keep the site posted.

Cheers, Ben.This post was edited on 29/06/2013 at 1:11 pm
2 people like this

dev1980

(Member)
From: Northcote, Melbourne
59 total posts
Not currently suffering :D
wowee Ben.

Im so happy its giving you relief again. It really great that you are stopping the regime to see if CH ramps up. credit to you.

You are doing Batch proud no doubt with your dedication to his regime.

I hope this trend continues for you.


Dan
2 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Thanks Dan,

Although this may all appear altruistic and "noble" of me, as my specialist puts it.
It is entirely selfish, I want CH relief!!! As I'm sure everyone here understands.

I ignorantly tried the one man mission to cure the sore heads of the world, one at a time by doing trials of some far out medications.
More often than not, the drug contraindications put me in hospital, not fun. But at least it puts a line through those shitty drugs, before others get exposed to them. That pretty much killed my altruistic streak, but I find it coming out more lately...
It has been about 18 months since I trailed anything new. The distance from that is doing me good. Not so angry on here these days...Sorry bout that when I was...

It is good to help others through the site with solutions other than the regimen too.
I'm just trying to put my ass on the line for me mainly.
If the regimen helps others, then even better.

My contributions are meager.
Batch deserves the credit, he shared it with us all, where many would have attempted to profit, or simply neglected to mention it to anyone.
There is no "I'm right Jack, stuff you" in Batch. He's the real deal.
He has put his ass on the line in far scarier ways, I'm sure...
He is the altruistic one here. He deserves full credit for my CH relief and that of many others. Batch doesn't strike me as the type to try to profit from pain.
(I note his forfeiture of any profit from his patented high flow O2 demand valve, just to get it into development and out to CHers. Yeah, Hi Batch!! I do my checkin up...you sneaky old bugger...)

I've been a volunteer for far scarier things than the regimen.
The only differences here are that this "seems" safer than a lot of the drugs I have been trailed with. Mind you, Batch continues to do masses of research on this and we all benefit from his ongoing work.

Not that I don't trust Batch, but a few failed drug trials and near death experiences have taught me the hard way to stay vigilant. I've nearly died at the hands of "the best" Neurologists before... So, I read up to 15 hours a day on D3 studies, all the co-factors, endocrinology textbooks, medical terminologies and all the tangents I can lay my hands on, still I am an absolute novice, at best. I've only been reading this stuff for a few months.

Once the basics have been covered and you are reading the same duplicitous D3 dosing data for the umpteenth time, I think there is more to be gained by sourcing the recipe and throw it down the hatch, with monitoring of your own obs and bloods of course...

I have to research for my own safety and go through the withdraw/introduce tests to validate the science experiment. Science experiments are only valid when repeatable.
What's the worst that can happen when I do a burn down? I get CH.
(This is not an "I'm so tough" thing either, I'm in a privileged position)
I know it well.
I can handle it.
I know it won't kill me.
I have bailout drugs in the form of Imigran.
With the added bonus of one of the world's best watching over my shoulder, I feel safe in doing this.
The relief speaks for itself. (despite my epic posts, speaking for it smile )

Hell, I'm in the driver's seat on my own CH.
This is new and exciting.
How many people can say that?
It feels good and the view from here looks good too.

I just see no reason why I should not try to take as many people with me for the ride.
Why not?

CH is a sonofabitch, I want relief and so do others.
I hope people reading this are seriously considering giving it a go.
I've done my best so far to cross check, validate the idea and have it clinically monitored.
I will continue to monitor and post.

The rest is up to individuals to take this info from this page (or preferably Batch's) and get the regimen happening.

If your CH is blazing away, what have you got to lose?
Seriously!

A big thank you to all the people who seem to get a kick out of my relief. I don't really understand it, but I really appreciate the support.
You guys have helped me so much, I am indebted for sure.

Roger, you're a bloody legend.
Creating this site has not only saved lives, but made them worth living.


Cheers, Ben.This post was edited on 29/06/2013 at 1:05 pm
2 people like this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

I saw my specialist in mid-May and he kindly put a safety floor under me and my regimen experiment, in the form of a full pathology work up and some serum Calcium tests.
We are on the lookout of Hypercalcemia, a side-effect of too much D3, just in case I'm "overdoing" the D3 supplements. I have none of the hallmarks of Hypercalcemia, but remain vigilant, nonetheless. I have a list of things to look out for, just in case.

Results from mid-May showed that I have reached my upper limit of serum Calcium. So, I dropped my Calcium intake from diet a bit, which has been huge and I also dropped the regimen D3 component back from 15,000IU of D3 per day (really a loading dose to get my levels up there) back to 10,000IU per day, a holding dose.
As long as ongoing pathology shows I am OK, I will hold at this D3 dose.

I'm not really prepared to go any lower and risk return of CH attacks.
So long as my tests remain OK, I will stay on the regimen, at 10,000IU D3 daily. Been holding there for over a week now, still no sign of CH attacks.

I've just yesterday had a repeat 25(OH)D serum test and again Calcium level. That will be my peak Calcium, as I have dropped intake considerably and now on the other side of that pathology test, reintroduced K2 MK7, to see if any of it's alleged serum Calcium redirection will show up on any pathology test, as I can locate minimal science or trials on K2 MK7. It's one big experiment, but which CH drugs are not?

When I get my next results I will post (25(OH)D in nmol/l) showing where exactly I am on the D3 response graph, as seen in the first post on this thread and my serum calcium too.
We are monitoring safety closely.

As for evidence of this working...
My three D3 burn downs are the closest thing I have for evidence that this works. After all, in CH diagnosis, the only way to diagnose or to establish CH status is by taking down what a patient reports; the detailed oral patient history.

I can report that I am pain free and have not used Imigran in over one month. I am taking no other preventive medication.

Each time I have withdrawn the regimen, my CH has resumed.
This is not some D3 rebound either, as the levels drop straight off and I hit the Imigran if required. But this burn down procedure is not required anymore, I've done enough repeats to prove the validity of the experiment for me.
I am staying on 10,000IU of D3 per day.
There is still tweaking to do.
I must try to remain pain free and also within desirable pathology limits.

It's nice to have Batch there to answer my somewhat uneducated questions.
Nice to have my specialist there to underpin safety, check the biomarkers and offer some supervision.
Nice to have a GP on board who, whilst he cannot officially endorse my D3 dosing, is now not outwardly dismissive of it, having seen my results in CH.

All my supervising practitioners have seen me battle through all the drug trials and CH for many years in an otherwise resistant and intractable case. They can see just by looking at me, that my quality of life has improved tenfold.
This has their attention. People are coming around to the idea.

An unlikely alliance is forming here, to achieve a common goal - pain free status and to get it out to CHers, if appropriate for them to try it.

There is still very much going on behind the scenes with this that I will not yet mention here, but I will keep the site updated as developments continue.
It's very exciting, indeed.

Cheers, Ben.This post was edited on 29/06/2013 at 1:06 pm
2 people like this

saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Woohoo Ben, i didn't see you were green, good for you. Thanks Batch and the researchers too.
cheerts peter.
1 person likes this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Thanks mate, still workin on it...

A very important contribution to the regimen that has been overlooked here by me, are ALL the CHers around the world who did this long before me.

They're the trailblazers and in my view, the heroes of this ongoing story. They put their bodies on the line in countries (mostly in the US) where they don't have a safety net like Medicare to catch them.

With Batch's immense input and their contributions, it gave just one CHer, me, the confidence to give it a try.
All I can do is try to spread the news if I can, a mere middle-man.

Thanks to all the people who tried this years ago, many hundreds for those it did not work and for and for those it did, I and many others thank you for your time and input.

I can say, we've now got the right ears pricking up in the medical profession here in OZ, where this has been largely ignored elsewhere.

I look forward to contributing in any way I can.

Cheers, Ben.This post was edited on 29/06/2013 at 1:08 pm
1 person likes this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

Yesterday I glanced at this thread title and it had 1300 odd views listed next to it.
Today, I saw it again and it has 1600+ views.
This happened once before, possibly on more than one occasion.

Either it is generating a lot of interest and that would be nice, or someone's having a lend of me and jacking up views by clicking on the page!
300 views overnight? Seems improbable...

I would like views here to be an accurate reflection of genuine interest in the regimen.
I just want site users to know it ain't me doing it.

Anyone have any idea what is happening?

EDIT: 1 July, 1966 views?
Another 300+ views overnight?
Perhaps we need Roger to check the IP logs and see who is doing this...disgruntled ex-members perhaps?
I'm sure Roger can work his IT genius and quite easily find out who is artificially bumping up views...

Whoever it is, keep it up, it only serves to add to the interest in using the regimen and ultimately, reaching pain free status.
Thanks for getting all Batch's work the attention it deserves!

Cheers, Ben. smile

P.S. - To those checking this out, my own experiences written here are experimental and do not correctly articulate the regimen, the hard work put into it and all the science behind it. Batch has his hard work posted on his US threads and much more input from regimen users in the US than we are ever likely to generate here on this site in Oz.
I encourage a healthy separation between my own regimen experiences, "tweaking", opining and the actual Scientific work that Batch has put into this.
Please do not confuse my own meager experiences here for fact, or representative of the Regimen, Batch or his work.This post was edited on 01/07/2013 at 7:18 pm
1 person likes this

Ben

(Member)
From:
137 total posts
Not currently suffering :D
Hi to all,

The pathology test results are in.

After going down to 10,000IU D3 per day and back up to 15,000IU per day, of the Swisse D3 and all the co-factors, as I said earlier, my serum Calcium level was a bit high - 2.6 from a desirable range of 2.1-2.55.
I think, as a result my heart rhythm was a bit dodgy...
Calcium homeostasis is very tight, not leaving much margin for error.

Too much serum Calcium interferes with my heart rhythm drug - Atenolol (Noten), high serum Calcium affects uptake and half-life of this drug.
A problem for me and not for the regimen.
It is a minor interaction and only affects users of Beta-blockers like Atenolol and propranolol.

I had to better manage serum calcium with less dietary calcium and K2 MK7 supplementation. The only variable I re-introduced was K2 MK7, to redirect serum calcium away from tissue and into bone. It seems to have worked.

13 JUN my latest pathology.

Serum calcium - now 2.4 from the desirable range 2.1-2.55
25(OH)D serum level - 146nmol/L

GGT liver count down from 244 (High from Imigran use) now dropped to 156.
I do not drink alcohol, despite this figure.
Last beer I had was nigh on 8 years ago, I think its through the system by now...
Total Cholesterol 7.0, because I ate crap whilst moving house, but I'm working on it with diet.

No CH attacks to report.
My GP says the top of the "desirable range" for 25(OH)D is 160nmol/l.
I am under that and still have CH relief - proof, it seems that I need not have ventured into alleged "high-dose" (above recommended) territory to achieve CH relief.
This is quite surprising.

25(OH)D at 146 nmol/L - JUST in the bottom of the "Green Zone" for CH relief.

http://i378.photobucket.com/albums/oo230/F8Driver/25OHDResponsetoVitaminD3Dose.gif

Current regimen (for me)

6AM
(Atenolol, my heart rhythm drug, not part of the regimen)

8AM
5000IU D3
2 X 1500mg high strength Fishoil
Vitamin A (R.E) 625 IU
Magnesium Citrate 75mg (equiv Mag Citrate 500mg)
With food and coffee.

12PM-2PM
5000IU D3
2 X 1500mg high strength Fishoil
With food

5PM (atenolol) and K2 MK7 125mcg

7-8PM
5000IU D3
2 X 1500mg high strength Fishoil
Vitamin A (R.E) 625 IU
Magnesium Citrate 75mg (equiv Mag Citrate 500mg)
With or just before main meal, whichever is earliest.

Head is clear.
No shadows, CH, or imigran required.
This works for me, in an otherwise intractable case.
On the 3 occasions I have withdrawn D3, my CH returns, slowly, but it's there.
It does not hammer me with a vengeance, e.g; like coming off Pred.
This gives me time to pop 1 Imigran and go from 10,000IU D3, back up to 15,000IU D3 per day, as I am still taking right now.

These are just my exploits, this is not a recipe for everyone.
In the absence of user input from other regimen users here, I am attempting to show how, over time, persistence and individualised tweaking may be required for each of us.

Individualising treatment is always a concern in managing CH, no matter what the drug.
Sure beats some of the tweaking I had to do with repeated Lithium, Verapamil, Dilatiazem, Topamax, Pred etc, etc.

As always, check out Batch's thread for updates.
My rantings here do not do his work justice, although I try and I DO have CH relief!
Yay! smile

Cheers, Ben.
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Ben

(Member)
From:
137 total posts
Not currently suffering :D
Ho to all,

I'm signing off here on my experiences with the regimen, it works for me.
I put my money where my mouth is on the regimen and it has attracted (for the most part) the right kind of interest. I hope this shows publicly, for one CHer at least (me), how tweaking and persistence can pay off.

There is some news and research progress in the works, but it may take some time before I can report any outcome. The rest of the hard work will continue elsewhere, through the appropriate channels.
Rest assured, the world's best are working on it.

The regimen recipe stands as is here, on Batch's thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4

For the latest updates, always check with Batch's thread.
I will keep the site updated of any Australian developments in the pipeline.

Anyone else should feel free to post their experiences or questions on the regimen here, or start your own thread, whatever you like.

I'm off to enjoy my "Pain free" status, for the first time in my life.icon

Pain free days to all.

Cheers, Ben.This post was edited on 08/07/2013 at 5:29 pm
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Roger

(Admin/Moderator)
From: Burpengary
258 total posts
Not currently suffering :D
Hi,
the 2 IP addresses that clocked up so many hits are:

46.4.79.172
78.46.104.168
5.9.121.101

They belong to an ISP in Germany: www.hetzner.de

I have taken steps to block those IP address ranges.
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Gothique Angel

(Member)
From:
14 total posts
Not currently suffering :D
This post is from Batch on CH.com, as an update on news and safety for D3 users.

* * * * * * *

The founder of VitaminDWiki has been kind enough to post a web page on the use of vitamin D3 as a cluster headache preventative at the following link:

http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced
+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people+


I'm not a physician or nutritionist... but I did stay at a Howard Johnson a few years back...

Seriously... all I can do is provide you information based on my experience with, and what I've learned over the last three years about vitamin D3, Omega-3 Fish Oil and the rest of the vitamin D3 cofactors: calcium, magnesium, zinc, boron, vitamin A (retinol) and vitamin K2 (MK-4 & MK-7). Armed with this information, you can make your own decisions.

For starters, you've likely already discovered that most PCPs and too many neurologists have no real first-hand clinical experience treating patients with cluster headaches... That should be understandable... We suffer from an orphan disorder... When patients present with a condition they've not treated previously... like cluster headache, most physicians use a cookbook approach with treatment recommendations from Standards of Care Guidlines... Many of these guidelines are excellent... That said, it all depends on when the cookbook (Guideline) was published...

Unfortunately, the same can be said for the benefits of nutrition and the use of supplements on the many health issues we face...

This shouldn't be surprising either... Most medical school curricula provide an average of 1 hour on primary headaches and about the same amount of time on the use of nutrition as a mode of preventative and interventional treatments.

Furthermore, most of the exciting medical breakthrough discoveries in the last ten years have come as a result of molecular biochemistry at the cellular and nuclear level... in short, rise of the genetic-based pharmaceutical companies...

To put this in perspective, the Human Genome Project wasn't declared substantially complete until April 2003 with sequencing of the last remaining chromasome not completed until May of 2006.

Getting back to the pharmacokinetics of vitamin D3, the real exciting stuff has come as a result of gold standard RCTs completed in the last five years and the use of vitamin D3 as a preventative for cluster headache didn't start until three years ago when I developed the basic anti-inflammatory regimen.

Moreover, until now, the only first hand information on the efficacy of vitamin D3 as a preventative for cluster headache has only been available here at CH.com. Other sites like ClusterBusters and a couple cluster headache organizations in Europe have been watching.

Sooo... unless physicians have been taking CME specific to vitamin D3 and nutrition... they've likely never been exposed to the health benefits of vitamin D3 and the vitamin D3 cofactors.

With that as a preface... here's what I suggest. VitaminDWiki provides the most complete and up to date compendium of all things vitamin D3 including excerpts, and links to the latest RCTs...

For example, here's the link to the benefits of taking vitamin D3 to control cholesterol:

http://www.vitamindwiki.com/Cholesterol

The really cool thing about vitamin D3, 25(OH)D and 1,25(OH)2D3, (calcitriol), the active hormonal form of vitamin D3 is its capacity to stimulate genetic expression...

In simple terms calcitriol triggers certain genes to produce products our bodies need to heal themselves and turn off genes to prevent them from making products that make us sick.

It's this capacity of vitamin D3 we think is responsible for the down-regulation/suppression of Calcitonin Gene-Related Peptide (CGRP) that studies have found elevated during cluster and migraine headaches. Dr. Peter Goadsby, M.D., one of the world's top cluster headache neurologists, conducted one of these studies.

In order to help make genetic expression happen, we need to supplement with adequate amounts of vitamin D3, calcium, magnesium, zinc, boron, vitamin A (retinol) and vitamin K2 (MK-4 & MK-7). The following graphic provides a high level illustration of how this happens...

http://i378.photobucket.com/albums/oo230/F8Driver/VitaminA-DPartners_zps9e5569b6.jpg

You can find more about the synergy between vitamin D3, vitamin A and vitamin K2 at the following link:

http://www.vitamindwiki.com/Synergism+between+Vitamin+D%2C+Vitamin+
K-2%2C+and+Vitamin+A%3A+Masterjohn+%E2%80%93+Sept+2013


Finally, no discussion of vitamin D3 therapy is complete without discussing safety. The following graphic tells the tale on safety of the doses we take. Note that it's not just the dose but also the duration of dose that adds up...

http://i378.photobucket.com/albums/oo230/F8Driver/Safe-ToxicVD3Chart_zps3a2ea633.jpg

This graphic doesn't tell the whole story... It's not so much the dose and duration but rather how much 25(OH)D the body produces in response to these doses over time.

Even that can be misleading as it's not the serum concentration of 25(OH)D that indicates toxicity... It's the serum concentration of calcium...

If you read through the papers on vitamin D3 toxicity you'll find there are no studies (RCT's) that intentionally set out to define the vitamin D3 dose and serum level of 25(OH)D that triggers a toxic reaction... That would be unethical...

Instead, they gathered data from cases of unintentional and accidental overdoses due to mislabeled or improperly prepared vitamin D3 that resulted in calcium serum concentrations above the normal reference range. These cases were then used to approximate vitamin D3 dosing and 25(OH)D thresholds where a toxic reaction occurred as indicated by too much serum calcium and or too much calcium in the urine.

In nearly every case, authors reporting toxic levels build in a large safety margin... For example, if the lowest threshold for vitamin D3 toxicity from any study (with or without peer review), was found to be 200 ng/mL, the "Safe" upper limit of the normal reference range is set at 100 ng/mL.

In short, the vitamin D3 experts, endocrinologists specializing in treating vitamin D3 deficient patients will say... vitamin D3 toxicity is very rare...

Finally, I've tried to put this on an apples to apples comparison of relative risk... I was unaware of any deaths reported to the FDA over the last 9 years due to vitamin D3... so I checked a web site that tracks reports like this... I think you'll find the following list an eye-opener...

From Q1 2004 to Q3 2012, (9 years), the FDA received adverse reaction reports on the following prescription medications and over the counter supplements: Check out the following link to see for yourself. Plug in prescribed and over-the-counter medications and supplements you’ve been taking… one at a time, to see what’s been reported to the FDA about these medications over the last 9 years. Click on the “Show More” button to see the entire list of adverse reaction reports for each choice.

http://www.drugcite.com/?q=VERAPAMIL+&a=&s=

Prescription Medications Used To Treat Cluster Headache and Related Symptoms
Deaths due to VERAPAMIL 229
Deaths due to DEPAKOTE 168
Deaths due to TOPAMAX 66
Deaths due to LITHIUM CARBONATE 56
Deaths due to LYRICA 703
Deaths due to GABAPENTIN (Neurontin) 202
Deaths due to VALPROIC ACID 194
Deaths due to BACLOFEN 102
Deaths due to PREDNISONE 513
Deaths due to PREDNISOLONE 163
Deaths due to COUMADIN 458
Deaths due to IMITREX 32
Deaths due to INDOMETHACIN 18
Deaths due to OCTREOTIDE 1317
Deaths due to CALAN 208
Deaths due to CLOMIPHENE CITRATE 8 Intra-uterine Deaths
Deaths due to PROPRANOLOL HCL 67
Deaths due to ATENOLO 62
Deaths due to AMITRIPTYLINE 184
Deaths due to PAXIL 357
Deaths due to LIPITOR 865
Deaths due to CRESTOR 238
Deaths due to NEXIUM 357
Deaths due to AMBIEN 243
Deaths due to PRILOSEC 0
Deaths due to DIHYDROERGOTAMINE 0
Deaths due to OXYGEN 0

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

Over The Counter Supplements/Nutrients
Deaths due to MELATONIN 0
Deaths due to MAGNESIUM OXIDE 0
Deaths due to CALCIUM CITRATE Not Listed
Deaths due to BORON Not Listed
Deaths due to VITAMIN A (Retinol) 6
Deaths due to VITAMIN B (Complex) 2
Deaths due to VITAMIN B 12 0
Deaths due to VITAMIN C 0
Deaths due to Vitamin E 2
Deaths due to VITAMIN D3 0
VITAMIN D3 TOXICITY 2
Deaths due to VITAMIN K 2
Deaths due to VITAMIN K2 Not Listed
Deaths due to ZINC OXIDE Not Listed


So there you have it... The next time a nervous Nellie cries "Wolf" in a post about taking vitamin D3... at the doses we take in the anti-inflammatory regimen... take a deep breath and remember the sage sayings... Too much of anything isn't good... and... All things in moderation...

Good people of Clusterville... Our healthcare system is going down the dumper at a frightening pace... The smart thing to do now is stay healthy. The anti-inflammatory regimen is a very safe regimen with health benefits that go well beyond preventing cluster headaches.

And if you do get sick and need to see a doctor... be informed... Ask for an explanation of any prescribed medication including side effects.

Take care,

V/R, Batch
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
It truly is an eye opener! Thankyou for going to all this effort and compiling your research!!
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Megan

(Member)
From: Cooma
15 total posts
Currently suffering :(
Hi Ben
Can you please advise where you are at with this regime. Michael is about to do the prune purge as we agree with sevens that toxins in the body are not a good. We would then like to look at this regime. We have a neurologists appt next week and want to discuss this as well.
Thanks in advance. Megan
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Gothique Angel

(Member)
From:
14 total posts
Not currently suffering :D
Hi Megan,

Last month the D3 regimen in Cluster Headache was published in the most widely read and highly-cited, peer-reviewed Neurology Journal.
The Official Journal of the American Academy of Neurology, thanks to Pete Batcheler's ongoing work and the input of all the survey participants worldwide.

The Journal of Neurology article:

A Survey of Cluster Headache (CH) Sufferers Using Vitamin D3 as a CH Preventative (P1.256)

Peter Batcheller

Neurology April 8, 2014 vol. 82 no. 10 Supplement P1.256

Abstract

OBJECTIVE: To present survey results of 110 CH sufferers (CH'ers) using a daily anti-inflammatory regimen of vitamin and mineral supplements including 10,000 IU/d vitamin D3, (cholecalciferol) and Omega-3 fish oil as a CH preventative.

BACKGROUND: Cluster headache is one of the most painful and disabling headache disorders known to man. Results from an informal survey CH’ers using the anti-inflammatory regimen as a CH preventative indicated a surprisingly high efficacy. A survey was needed to qualify and quantify the efficacy of this regimen.

DESIGN/METHODS: A questionnaire was developed to capture efficacy, 25(OH)D lab results along with essential demographic and epidemiological information. Participants were advised to consult with their PCP or neurologist before starting this regimen and to ask for the 25(OH)D lab tests before and after 30 days of use or a favourable response.

RESULTS: 80% of CH'ers reported significant reductions in frequency, severity and duration of their CH. 60% reported remaining substantially PF. Average starting 25(OH)D was 23.4 ng/mL. Average 25(OH)D response after 30 days or favourable response was 76 ng/mL. Regimen appears equally effective for both ECH and CCH, although ECH'ers enjoy a slightly higher efficacy of 85% vs. 70% for CCH. A stress test of 25(OH)D reserves after 13 mo. PF, resulted in a return of CH after 8 days without vitamin D3. 33% reported comorbidities. There were no major adverse events reported.

CONCLUSIONS: Empirical data suggest a possible causal relationship between a vitamin D3 insufficiency/deficiency and cluster headache. AtThis post was edited on 31/05/2014 at 9:32 pm
1 person likes this

Gothique Angel

(Member)
From:
14 total posts
Not currently suffering :D
I can't get this site to post the damn study!!!

Print this off for your Neuro
Link here: http://www.neurology.org/content/82/10_Supplement/P1.256

Thanks to Batch for this.This post was edited on 31/05/2014 at 9:35 pm
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Megan

(Member)
From: Cooma
15 total posts
Currently suffering :(
Thanks Angel
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Harp

(Member)
From: Mulgrave
14 total posts
Not currently suffering :D
When commencing on this regime,does one still say on the Other meds such as Verapamil?
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JackyV

(Member)
From: BROADMEADOW
21 total posts
Currently suffering :(
I'd like to add that I'm on this regime for around 10 days now, with supporting anti-inflammatory drugs until it has time to take effect, and have gone from having 2-3 attacks per day to 1 every few days at worst. I still have some shadow events which are managed effectively through the use of Naramig tablets.

I'm taking:

AM: 5000 IU D3, 2000mg fish oil, Centrum and roughly 400mg magnesium

PM: 5000 IU D3.

I'm having some trouble locking down Vit A & K, any suggestions on where to get those would be greatly appreciated.
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Peter Yarrow

(Member)
From:
10 total posts
Not currently suffering :D
Vitamin K2MK7 is available at Chemist Warehouse, "Frank Caruso's" is the one I was taking but it was working out a bit too expensive for me, so I went on Ebay and ordered "Healthy Origins" K2MK7. I trust that company and have been verifying batch numbers on their 10,000IU D3 for over 4 years, having blood tests without issue. Hope that helps.

You do want K2MK7, not just Vitamin K.
Vitamin A needs can be met with a Multivitamin and some yellow vegetables in your diet.
I don't supplement Vitamin A any more and the regimen works for me.
It might be time for a new write up of the regimen on this site, it has come a long way since this thread began. Readers can keep up with current developments here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=129196941
6/2575#2575
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