Hi all,

I started the D3 regime 24 hours ago, but a slightly watered down version. In short I think I am taking everything I should, excluding 5,000 iu D3 and the loading dose.
I have not had my D3 blood levels tested.

I moved from a very sunny Southern hemisphere country to a very wet Northern hemisphere country 10 years ago and I suspect I'm D3 deficient. 8 years ago I started ECH, 5 years ago I turned chronic.

I have some questions I hope you can help me with.

1.) I guess I am concerned that 10,000 iu D3 is too much and can cause other health problems. I respond very well to most medication, therefore I want to try D3 at 5,000 iu first to see if it helps. Does that make sense or does it have to be 10,000 iu? My reasoning is that if I respond to 5,000 iu, do I really have to take 10,000 iu?

2.) I struggled a bit getting the exact amounts of vitamins suggested. This is what I intend taking on a daily basis. Excluding the question above about the D3, is this correct - or close enough? Should anything be modified?

- Vit D3 5000 iu
- Omega fish oil 1000mg
- Magnesium 383mg
- Calcium 333mg
- Zinc 8.3mg
- Vitamin B50 complex containing
   - B1 50mg
   - B2 50mg
   - B6 50mg
   - B12 50ug
   - Niacin 50mg NE
   - Panthothenic Acid 50mg
   - Folic acid 400ug
   - Biotin 50ug

3.) I had 2 attacks on Friday, 3 on Saturday and 3 on Sunday with pretty much constant shadowing in-between. In the last 24 hours since I started D3 I have had zero attacks and about 5 minutes of shadowing. Could it possibly have started working so fast?

And then I wanted to add a thank you for taking the time to probably answer the same questions over and over. I know all the information is written down, but I think from a D3 newbie perspective everyone wants a bit of reassurance that what they're doing is right.

All the best,
McW

D3 has both anti inflammatory and anti hypertension properties (along with many other)

It is known that inflammation and raised blood pressure contribute to headaches. My theory is that both inflammation and raised blood pressure (including effect of atmospheric pressure lowering) are co contributors to primary and cervicogenic headaches.

If this is true D3 will help. But D3 has to be in balance with other vitamins, minerals, hormones and other stuff. Also there are medications and medical conditions that can cause serious problems with too high D3 levels.

This should not be surprising when you consider Vitamin D is used to kill rats and can assist in clogging up the arteries in humans.

You need to talk with your doc and have your current medications and medical conditions checked for compatability with raised D3 levels.

Hi McW and welcome,
This is what I take, and have been CH free for the past 2yrs

Vitamin D-3 5,000iu 1/day.
Kirkland mature multi 1/day.
Fish Oil 1200mg 1/day.
Magnesium Citrate 400mg 1/day

Cheers, Hoppy.

I was CH pain free for over 1.5 years taking 6,000IU a day and I only increased it to 10,000IU for the last 1.8 years to try to help with my migraines too. So 5,000 may be enough for you.

Holy Shiite Batman !!!

So much information about vitamin D3... Some of it spot on and some of it so far off base it's meaningless BS that only serves to confuse, or worse yet, frighten readers new to this regimen.

For starters, vitamin D3 is one of the safest nutrients we can take.  It's so important to human biological functions, our skin makes vitamin D3 when 7-dehydrocholesterol in the fatty layer of our skin is exposed to the UV-B in sunlight.  Moreover, a vitamin D3 dose of 10,000 IU/day is very safe. 

The important thing to remember is it isn't the dose of vitamin D3 that counts, but rather the 25(OH)D response.  As we all respond to vitamin D3 differently, it is always prudent to see your PCP or neurologist for a lab test of your 25(OH)D.

Over 300 member CH'ers here at CH.com have posted they started the anti-inflammatory regimen over the last four years and there has yet to be a single post from any of them indicating vitamin D3 intoxication.  Given the number of guests reading the main post on this regimen, I'd estimate at least another 300 guests have also started this regimen.

Data from the online survey of 127 CH'ers taking this regimen to prevent their CH indicates 83% of the participants experienced a significant reduction in the frequency, severity and duration of their CH.  60% of them reported they've remained pain free while taking this regimen, yet none of them reported any vitamin D3 toxicity.

A recent open label year long RCT involving 45 people with remitting recurring multiple sclerosis (RRMS) taking escalating doses of vitamin D3 from 4,000 IU/day up to 40,000 IU/day and a 25(OH)D maximum response of 410 nmol/L, (164 ng/mL) in six week increments resulted in no cases of vitamin D3 intoxication.

The average adult with fair skin can generate 15,000 IU of cutaneous vitamin D3 in as little as 10 minutes if exposed to the UV-B in mid day sun, clad in a bathing suit without any sun block.

Our bodies also have a number or regulatory mechanisms that maintain vitamin D3 and its metabolites at the proper concentrations even when we take a mega dose of 1 Million IU vitamin D3...

Regarding medical conditions where the anti-inflammatory regimen's vitamin D3 is possibly contraindicated... there are only two...  Hyperparathyroidism, where an excess of parathyroid hormone in the bloodstream due to overactivity of one or more of the body's four parathyroid glands and sarcoidosis, an immune disorder. 

If a CH'er had either of these two disorders, they would be well aware of any sensitivity to vitamin D3.  I've been in contact with one CH'er with sarcoidosis and she worked with her doctor to find a safe and effective dose of vitamin D3.

The other two possible contraindications occur if a CH'er is taking a blood thinner like coumadin, (warfarine) a.k.a. rat poison... or taking verapamil as a CH preventative.

In the case of blood thinners, taking vitamin K1 requires close medical supervision...  However, if you read the list of supplements in this regimen, you'll see that vitamin K2 is suggested... not vitamin K1.  Vitamin K2, a.k.a. the menaquinones, MK-4 and MK-7 have no impact on blood clotting... 

In the case of verapamil, taking calcium supplements can in some cases, reduce verapamil's effectiveness as a CH preventative...  I look at this possible contraindication in simple terms...  If verapamil isn't effective in preventing your CH, taking the anti-inflammatory regimen isn't going to change verapamil's effectiveness... but this regimen could help prevent your CH.

Can you take too much vitamin D3?  Of course...  you can also drink too much water and that's proved fatal for a few people with a complete lack of common sense who took a dare to drink a gallon of water...

In the history of the FDA's database of adverse reactions, there hasn't been a single death attributed to vitamin D3... Unfortunately that cannot be said for verapamil, sumatriptan succinate (imitrex), prednisone, lithium and all of the anti-psychotic medications prescribed for cluster headache.

Is vitamin D3 used in rat poison?  Yes, but you need to read the label carefully.  For starters, this form of rat poison is used to combat anti-coagulant resistant rats and mice...  In simple terms, these rats and mice are resistant to warfarin a.k.a., coumadin, another rat poison frequently prescribed to people to prevent blood clots...

What is really interesting is the vitamin D3 (cholecalciferol) Rat LD50 oral = 43.6 mg/kg by weight.   The LD50 is a common measure of toxicity where a lethal dose (LD) results in the death of 50% of the animals taking the substance.

As the average rat (Rattus Norvegicus) weighs 300 grams, (~10.5 ounces), the LD50 works out to 13 grams of vitamin D3.

In order to convert the 13 grams to International Units, (IU) we first convert grams to micrograms (mcg).  As 1 mcg is one millionth of a gram, we multiply the number of grams by 1,000,000 so that works out to 13,000,000 mcg of vitamin D3. 

As one mcg of vitamin D3 equals 40 IU, we need to multiply 13,000,000 mcg of vitamin D3 by 40 to convert to International Units (IU).  Doing the math...  13,000,000 mcg X 40 IU/mcg =  520,000,000 IU of vitamin D3...  Yes, a 10.5 ounce rat needs to eat 520 million IU of vitamin D3 to reach the LD50.

To put that in further perspective in more familiar terms, a 10.5 ounce rat could eat all 300 of the 5,000 IU vitamin D3 liquid gel caps in a bottle of Nature's Bounty vitamin D3, 1,500,000 IU, and the only thing that would happen is you'd have a very healthy rat... In other words, it wouldn't hurt the rat...

I don't know about you... but I find it amazing that a rat needs to eat 520 Million IU of vitamin D3 in order to reach the LD50 dose...  The way I see it, if a rat eats half that much, you've got a very healthy rat...  :o

Remember, the suggested maintenance dose of vitamin D3 is 250 mcg/day, or 10,000 IU/day...

A few other LD50s for humans to ponder... 

The LD50 for water is 6 liters
The LD50 for alcohol is 13 Shots (1 shot = 45 ml, of 40% alcohol by volume).

I hope this discussion puts the safety of vitamin D3 at the doses we take to prevent CH in perspective...

Take care,

V/R, Batch

Batch,

That's one of your best posts yet...... And it needed to be said!!!!!

Peter.

JMcW,

Welcome to CH.com and the anti-inflammatory regimen...  I think you've already discovered these were two very good decisions.

I forgot to answer your questions in my last post.  What you intend to take sounds just fine...  except I didn't see any vitamin A (retinol).  This is an important part of the anti-inflammatory regimen as it's essential in the genetic expression we think is responsible for the vitamin D3 CH preventative effect.  You may have sufficient retinol in your system at this point, but continued use of vitamin D3 will drain that reserve eventually.

You don't need to take 10,000 IU/day vitamin D3 at this point, but I wouldn't rule out taking that much in the future.

The rationale for taking 10,000 IU/day is simple.  5,000 IU/day vitamin D3 results in an average 25(OH)D response of 60 ng/mL, (150 nmol/L).  This is sufficient for roughly 50% of the CH'ers to remain pain free or experience a significant reduction in the frequency, severity and duration of their CH...

Unfortunately, a 25(OH)D serum concentration of 60 ng/mL, provides no real 25(OH)D reserves.  A cold, the flu, a bacterial infection, an allergic reaction, trauma or surgery would result in an immune system response that will gobble up available 25(OH)D leaving too little left to prevent CH... 

That's why I suggest taking 10,000 IU/day vitamin D3 as this results in an average 25(OH)D response of 80 ng/mL, (200 nmol/L) with sufficient reserves to handle any immune system response and still remain CH pain free. 

Of course the prudent course of action is to see your PCP or neurologist after you've been on this regimen for at least 30 days at the same dose and hopefully pain free.  that way you'll know your target serum concentration of 25(OH)D and the maintenance dose of vitamin D3 to keep you there.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

I was wondering when you'd get around to clarifying that Batch!
Very useful information!
Oh! and P.S. today makes three days pain free! [smiley=2vrolijk_08.gif]

...takin' it one hour at a time...
Gary

Gary,

Hmm... 3 days pain free...  I know the feeling... I was pain free by the second day taking this regimen and I kept pinching myself for the next two weeks thinking YGBSM... It can't be that simple...  but it was...

Some time around then, I stopped taking this regimen to see what would happen...  The beast came storming back in less than 24 hours...  That was enough for me...  I stayed on this regimen for nearly 13 months without missing a dose before I finally got brave enough to try another test of my 25(OH)D reserves... Seven days after stopping the complete regimen the beast jumped ugly on me...

Lesson learned and learned again...

Take care and please keep us posted.

V/R, Batch

That's great news Gary.

Long may it last.

Peter.

To advocate a high D3 regime and not warn of the risks is irresponsible to emphatically deny they exist is stupid.

When you don't know what's causing a problem it stands to reason that you don't know why something is alleviating the condition and it flows therefore that you don't know what harmful consequences might ensue........... until now

"High Vitamin D Levels Linked to Increased Risk of Death"

The Magazine Article

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The Study

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I will put some info with sources up here about what people with certain meds / conditions should look out for with high use of D3.

I have every sympathy for someone if they know the risks still taking something that may harm them in the long run if the benefit is to be free of utterly agonising pain. In that case it is free choice.   The alternative is to be harmed out of ignorance.

Thanks for that Peter!
and
Batch,
Had to look up the meaning of YGBSM.
Think I'll be adding that to my personal lexicon!
Gary
P.S.
This morning is day four, no morning CH wake up call!

Thanks Batch for your help, it's much appreciated.

I'm on day 3 now, I had an REM attack at 2am which I aborted with demand valve O2, some light shadowing this morning but nothing since then. I'm still going to stay on 5,000 iu D3 for a few more days but I've ordered more in case I need to up it. I also ordered Vit A - finally found some that is not in a face cream :)

After reading this thread with much interest, I've
decided to cut back to 3000iu Vitamin D-3 daily,
then get a 25(OH)D in a months time to see where
my level sits.

Hoppy.

Hoppy,

It appears you’ve a good plan…  I wish you good luck…  The most important part of your plan is knowing your 25(OH)D serum concentration. 

It’s been my experience as a long time chronic CH’er and over four years taking this regimen, that any time I drop my vitamin D3 intake below 5000 IU/day or let my 25(OH)D serum concentration fall below 60 ng/mL… I get whacked.

If you interpolate between the vitamin D3 doses and time course 25(OH)D response curves illustrated in the following chart developed by Dr. Robert Heaney, MD, you’ll see that 3,000 IU/day vitamin D3 results in an average 25(OH)D response of 45 to 50 ng/mL, (112 to 125 nmol/L).

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The following chart illustrates the 25(OH)D serum concentrations you should use.  As CH’ers, we’re not “normal” so we fall into the “Treat Cancer and Heart Disease” category at 70 to 100 ng/mL.  This same chart is supported by the vitamin D3 experts at the Vitamin D Council and Grassroots Health.

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Here in the heart of Puget Sound, we’re about to experience a major pollen dust storm from the Alder trees followed immediately by another dust storm of Maple pollen…  When that happens, I need to up my vitamin D3 intake to 15,000 IU/day with a week or two at 20,000 IU/day to stay CH pain free.

Regarding Lancashire Lad’s latest quixotic joust at the vitamin D windmill and admonitions over vitamin D3 safety…  I wouldn’t give them too much credence. 

Once again he’s offered up a weak example with a flawed study and he failed to read the fine print at the bottom line...  i.e., “The study did not allow inference of causality, and further studies are needed to elucidate a potential causal relationship between 25(OH)D levels and mortality.”   

“Whether this was a causal or associational finding cannot be determined from our data.”

Got that???  Even the study authors were averse to attributing a causal relationship between their J shaped mortality curve and 25(OH)D…
 
The original 2012 CopD Study that attempted to illustrate a J shaped all-cause mortality curve as a function of 25(OH)D serum concentration was panned by vitamin D3 experts as being too narrowly focused on 25(OH)D serum concentrations and that it failed to examine other factors that could have easily confounded their results.  The classic example is vitamin A (retinol).  It has a very real J shaped mortality curve, but the researchers in Denmark didn’t address it.

The common practice in Europe has been to obtain vitamin D3 from cod liver oil…  The unfortunate part of this practice is cod liver oil frequently contains large quantities of unregulated or poorly assayed vitamin A.  Westernized populations often ingest more vitamin A than is advisable and up to 30% have circulating concentrations above the recommended maximum level (e.g. in NHANES111).  High retinoid intakes have been associated with increases in mortality.  2 large Randomized Controlled Trials (RCTs) of vitamin A have had to be stopped due to an increased incidence of lung cancer and in cardiac deaths.  Hmmm…

The latest version of The CopD Study that Lancashire Lad cited is essentially a rehash of the original study conducted in 2012, only this time they sliced and diced the data even more narrowly to show a J shaped relationship between 25(OH)D and cardiovascular disease mortality.   

This was actually a retrospective, observational cohort study, where researchers performed a series of statistical analyses on laboratory data collected for other reasons.  There were no other nutrient factors considered, like magnesium that has been found to be deficient in nearly all cases of cardiac disease mortality…   

The simple analogy in the case of this study would be to relate driving to traffic fatalities…  The figures are very stark making driving infinitely more dangerous than taking vitamin D3…  However, if you include another important factor like the driver being impaired by alcohol or drugs, the mortality rate due to traffic accidents drops significantly.

There was another RCT involving 25(OH)D and risk of mortality due to acute coronary syndrome events conducted in Israel in 2013 that found no J shaped mortality curve yet came up with exactly the opposite conclusion as the CopD study. 

The study data reported by Dror et al, on low 25(OH)D are supported by data that associate low 25(OH)D levels with poor health outcomes, including in acute intensive care environments. 

Importantly, based on the frequency of the 25(OH)D values and the adjusted health risks, the attributable risk for mortality and acute coronary syndrome events is 31.8% for 25-OH D values below 20 ng/ml (<50 nmol/L) vs 0.55% for 25-OH D values above 36 ng/ml (>90 nmol/L).

Thus, if one were to take these attributable risks at face value, it seems that the ratio of risk to benefit of indiscriminant vitamin D supplementation in an unscreened population would exceed 50:1. 

Got that?  The odds are 50 to 1 against you If your 25(OH)D serum concentration is <20 ng/ml (<50 nmol/L)…

Take care and please keep us posted on your 25(OH)D lab data.

V/R, Batch

Hi Batch,
Thanq for your comment, and putting my mind at ease,
but having read Peter's post over and over lol, and
comparing the facts with yours, they seem to match
as to what your saying. So, I am a little worried about
going over 40ng/ml = 100nmol/L. My last test showed
67ng/ml, 167nmol/L, and been CH free for the past
two years maintaining that level, but I'm hoping, fingers
crossed it will stay that way at 40ng/ml. I will keep in
touch.

Cheers, Hoppy.

Hi Hoppy

The good news is that D3 was working for you the bad news is if Vit D doesn't kill you something else will  ;).

I think you are absolutely sensible, given the new study (full study attached below), to tritate your D3 intake to the lowest level to be effective for YOU. Clearly Batch has bigger needs.

Also below health warnings on elevated D intake

ATB

Peter

Health Risks from Excessive Vitamin D & Interactions with Medications

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A reverse J-shaped association between serum 25-
hydroxyvitamin D and cardiovascular disease
mortality – the CopD-study

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"The scientists studied the level of vitamin D in 247,574 people and analyzed their mortality rate over a seven-year period after taking the initial blood sample. “We have looked at what caused the death of patients, and when numbers are above 100 [nanomoles per litre (nmol/L)], it appears that there is an increased risk of dying from a stroke or a coronary,” study author Peter Schwarz, M.D. said in the press release.
As with most things in life, when it comes to vitamin D levels, it's all about finding a happy medium. “Levels should be somewhere in between 50 and 100 nmol/L, and our study indicates that 70 is the most preferable level," Schwarz says. (The National Institutes of Health comes in much lower with their number, stating that 50 nmol/L covers the needs of 97.5 percent of the population, and 125 nmol/L is a "dangerously high" level.)"

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Readers new to this discussion please sit back and relax, the next few exchanges could get even more interesting and possibly quite humorous.

I can’t say for sure, but it appears Lancashire Lad’s alarmist rants against vitamin D might be the result of a possible death fetish.  It’s either that or Big Pharma has been putting something in his mush… 

Why Big Pharma???  Well… Big Pharma suffers explosive anal leakage every time a gold standard RCT, conducted with real science, comes out with credible medical evidence that passes peer reviews with a finding that taking vitamin D3 is just as effective, if not more so at treating a medical condition than a patented pharmaceutical.   

Studies like this represent a very real threat to Big Pharma’s multi-billion dollar a year bottom line developing drugs we don’t really need that carry greater risks than the medical conditions they’re used to treat.  Statins are a classic example.

The simple fact is none of us is getting out of here alive…  Accordingly, the rational approach to our continued existence is to maintain the highest quality of life possible while our bodies remain above room temperature.  With a healthy diet, vitamin D3 and the cofactors can help do this.

Understanding the science of vitamin D3 is very important for all of us.   That makes the real task, finding a credible group of scientists, nutritionists and physicians, expert in the field of nutrition and in particular, extensive clinical experience treating people with a vitamin D3 deficiency.  When you do find them, follow their suggested guidance on how much vitamin D3 to take.

So who do your trust?  On one hand we have the researchers who constructed and authored the CopD study in Denmark that Lancashire Lad keeps citing.  They appear to be cut from the same stock as the man made global warming junk science alarmists who cooked their data to come up with the “Hockey Stick” man made global warming curve hoax…  Yes… the earth is warming…  How much is the real question.

For those of us living in the US and Canada, we also have apparently like-minded people at the National Institutes of Health, (NIH) Institute of Medicine (IOM) who cooked the data in order to set the Recommended Dietary Allowances (RDA) for vitamin D3 at 600 IU/day…  Remember the IOM falls under the same liberal progressive political appointees at HHS and charlatans like Gruber, who think you’re stupid when it comes to healthcare… so now we have obamacare…

Why is the RDA for vitamin D3 at 600 IU/day a big deal?  Simple.  IOM recommendations have important effects on a wide array of government programs. These include nutritional standards for US military, for school lunch programs, for WIC and many others, both in the United States and in Canada.

The RDA for vitamin D3 is also used by regulatory agencies in both the US and Canada…  As a dose of vitamin D3 this low results in a very low, if not zero 25(OH)D response, there’s no need for 25(OH)D lab tests…   

That means medical insurance companies don’t need to pay for these diagnostic lab tests…  CH’ers in Canada have already discovered this problem…  It also means if doses of vitamin D3 this low are effective (they’re not), the regulatory agencies like the FDA can step in and ban over the counter sales of vitamin D3 at strengths greater than 1000 IU/day as they’re not needed…  This has already happened in most countries across Europe, the UK, Scandinavia, Australia and New Zealand.

If you think that can’t happen here in the US… think again, then consider the fact that big government, nanny state, liberal progressive bureaucrats at Centers for Medicare and Medicaid Services, (CMS) have already denied coverage for medical oxygen as a cluster headache abortive to Medicare beneficiaries suffering from cluster headache…  I still have scars from two dust-ups with these bureaucrats over this non-coverage determination.

Who benefits when this happens?  Certainly not us… I’m of the opinion Big Pharma, their minions in government and the medical profession, and the medical insurance companies all benefit from regulatory decisions like this.   

If you don’t believe me, follow the money…  Too many “noted” physicians as well as politicians on both sides of the isle in Congress are recipients of funding from Big Pharma…  See the following links then ask yourself why would Big Pharma spend this kind of money on physicians and politicians?

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In all fairness, it’s a fact of life that physicians receive payments from Big Pharma to conduct RCTs…  What we would hope for from these physicians, is an unbiased and objective approach in developing and conducting these RCTs as well as in analyzing and reporting the results…

On the other hand we have a group of eminent experts, scientists, physicians and nutritionists who are all Jedi Masters of vitamin D… and more importantly, who are not on the take from Big Pharma…

The experts I trust in matters involving vitamin D3 include:  Dr. Robert Heaney, M.D., Reinhold Vieth, Ph.D., Dr. John Cannell, M.D., Bruce W. Hollis, Ph.D., Dr. Michael F. Holick, Ph.D., M.D., and the list goes on…  You can find articles and studies conducted by these experts at the Vitamin D Council and Grassroots Health web sites as well as the American Journal of Clinical Nutrition.

So how much vitamin D3 should we take to reach the RDA?

Canadian statisticians used the same data the IOM used but they came up with an RDA of 8,895 IU/day vitamin D3…  That’s over 100 times more than the IOM RDA.  Dr. Heaney and his colleagues analyzed data from the Grassroots Health D* Action Study of over 10,000 people taking vitamin D3 from 600 IU/day to over 10,000 IU/day and reporting their 25(OH)D lab results.  Using this data, they calculated a value close to 7000 IU/day as the RDA for vitamin D3.

Please understand that the RDA is defined as the amount of vitamin D3 that ensures 97.5% of the people taking it achieve a 25(OH)D serum concentration of at least 20 ng/mL.  Also recall this RDA is for otherwise healthy people…  As CH’ers, we’re not among this group so we need more vitamin D3 and a higher 25(OH)D serum concentration to stay CH pain free.

So there you have it…  Chicken Little on one side saying vitamin D3 can kill you and the real vitamin D experts on the other side who say 7000 to 8900 IU/day vitamin D3 meets the RDA.  You decide…

If you want to read some real science on this topic, check out the following link by Dr. Robert Heaney, M.D.

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Take care,

V/R, Batch

I found this comment that could apply to me and my CH's
seeing that the  [smiley=evil.gif] only paid me a visit
during the months of Spring and Autumn (Fall). We are
now in Autumn here down under, and no sign of the
[smiley=evil.gif] yet, which I attribute to Batch and
his Vitamin D remedy  [smiley=dankk2.gif]. So, theirs
no way in the world I'm going to quit now.

vitamin D levels in the central nervous system affect the production of both serotonin and dopamine, and vitamin D3 and vitamin D2 responsive elements are found throughout the midbrain regions and are especially concentrated in the hypothalamus, a region that encompasses the circadian timing systems and much of its neural circuitry.

Best, Hoppy.

Hoppy,

The available vitamin D3 genetic evidence to date regarding genetically expressive vitamin D3 receptors (VDR) and vitamin D3 response elements (VDRE), along with the highest concentrations of 1α-Hydroxylase (CYP27B1), the enzyme responsible for the synthesis of the biologically active form of vitamin D (1,25(OH)(2)D(3)), are found in nerve cells within the brain at the highest concentrations within the trigeminal ganglia and the hypothalamus... 

How about that!  A clear, verifiable link between vitamin D3, the trigeminal ganglia and the hypothalamus... 

Yet the cluster headache experts have yet to acknowledge these facts... and instead, are out doing studies on monoclonal antibodies that have an appetite for calcitonin gene-related peptides (CGRP)...

Why?  There's no money in a USP vitamin that cannot be patented, but lots of money available for patentable monoclonal antibodies...  CGRP is elevated in CH'ers and migraineurs during active headache pain phases...

Take care,

V/R, Batch

This is the warning on the Vitamin D, I take daily.
Biovea 5000iu GMP compliant.

Warnings:

• The risk of overdose is not present with natural exposure to sunlight, because the skin's capacity to produce vitamin D is self-limiting (skin production is thought to reflect the dose of vitamin D to which our evolution optimised human biology). In contrast, care should be given to limit oral intake for infants to no more than 1000 IU (25 mcg) daily, or for adults no more than 10,000 IU (250 mcg) daily.
• If you are pregnant or lactating consult a health care practitioner before using Vitamins D.
• Occasional side effects reported with large doses of Vitamin D include a disorder known as hypercalcemia, which causes calcium deposits in soft tissues. Signs of the disorder include headache, weakness, nausea, vomiting, confusion, kidney problems and constipation. Consult a health care practitioner if you experience any of these symptoms while taking Vitamin D.

Hi

Vitamin D3 is not toxic in large doses but the synthetic Vitamin D2 is.

In the Danish studie the old people with a vitamin D level above 50 ng/ml had probably got vitamin D2 injections to correct low vitamin D level and to treat osteporosis in combination with large doses of calcium. To much calcium is associated with increased risk of cardiovascular disease.
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So don't take calcium supplement together with large doses of vitamin D.  ;)
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"Vitamin D in the form of vitamin D(3) seems to decrease mortality in predominantly elderly women who are mainly in institutions and dependent care. Vitamin D(2), alfacalcidol, and calcitriol had no statistically significant effect on mortality. Vitamin D(3) combined with calcium significantly increased nephrolithiasis. Both alfacalcidol and calcitriol significantly increased hypercalcaemia."
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The man behind the Danish studie Peter Schwartz is Investigator for the pharmaceutical companies Amgen, Eli Lilly, Merck Sharp & Dohme, and shareholder of Novo Nordisk.  ;)

Hoppy,

I only take 5.000 IU vitamin D3 per day, together with magnesium and zinc and have been painfree for 6 years.  :)
My D level is 50 ng/ml year round.

Hi there,

My Doctor ( a rare general practitioner who diagnosed my CH very quickly)  researched the D3 regimen after I told him I was going to give it a try and is fully supportive.

When he checks my D3 levels he always checks my calcium levels too and is quite happy that the calcium levels are fine.

He also told me that it is very difficult to over use D3 and certainly not in the dosages Batch recommends.

I would trust my life with this guy and ( for me, anyway) the proof of the pudding is in the eating. The D3 regimen worked and is the only thing that has worked in 13 years.

Keep well, 

Peter.

Hi nhs,
Thanks for the heads up, and after reading all the info on
this thread, I've decided to stick with the 5000iu daily until
my next check up, and then make a decision whether to lower it, depending on the numbers. My last test results, 67ng/ml 167.5nmol/L. Ideal I would like them to be around the 40-50ng/ml mark.

Hoppy.

"The man behind the Danish studie Peter Schwartz is Investigator for the pharmaceutical companies Amgen, Eli Lilly, Merck Sharp & Dohme, and shareholder of Novo Nordisk."

...Verrrryy Interesting!
Gary

i welcome lancashirelads input

people do need to be fully aware and his concerns are being answered.

i find it odd that ch sufferers poo hoo alternative busting which is showing tremendous results(vit d and pylicybin) to then continue pumping poisons into themselves from big pharm that definitely dont work

kind of the same as smokers poo hooing vapeing.

Cheers Tangerine

Blackpool I assume, too much to hope Oldham but please don't let it be Salford.

Closed Minds are the root of many problems, not least to understanding and finding a cure for primary headaches.

Two of the world's experts are currently bitching about the classification of a particular headache (Goadsby and Sjaastad) when all the customer wants is for the pain to stop.

I am familiar with egos outgrowing intellect in the scientific world but it is a little frustrating to come across it in victims of appalling headaches.

I honestly don't care if Batch thinks I'm a saboteur working for the Pharmas or have some sexual relationship with death. His views are not worth listening to. They are stupid.

Why? Because he has made up his mind about something about something that is not well understood by the experts and professionals in the field. He knows best without any scientific evidence. The reality is he doesn't have a clue.

His heroes (the Jeddi Masters) assist in selling Home Test Kits for Vit D Levels. Amongst their number they describe Vit D deficiency as an epidemic and pandemic.

If they managed to scare me I might buy one of their kits but the result wouldn't tell me anything worthwhile. These "Experts" are not experts or they would be solving problems and not making money out of the people with the problems. They are even recruiting gullible frightened people to take part in a screening exercise for $650 (of the frightened person's money) with add ons to better understand what their problem is.

And if you learnt that one of them was an ex psychiatrist in a prison you may assume he had picked up some pointers there.

Open Minds solve problems, closed ones cause them.

D3 appears to help in CH but no one knows why, certainly not Batch. Use of D3 at elevated levels, a major study has found, is associated with causing early death. Why? Its not known, it just does.

Repulse the messengers with slurs and abuse does not create knowledge, it holds back understanding, questioning and solutions.

Lancashire Lad: D3 appears to help in CH but no one knows why, certainly not Batch. Use of D3 at elevated levels, a major study has found, is associated with causing early death. Why? Its not known, it just does.

Maybe you should read the Danish study. ;-)

In the Group with a vitamin D level above 50ng/ml (3.600), 108 died and the average age was 82 years. Early death?   ::) 

nhs wrote on Mar 13^th, 2015 at 5:36pm:

In the Group with a vitamin D level above 50ng/ml (3.600), 108 died and the average age was 82 years. Early death?   ::)

I wonder what the average age of death is for people with CH? It could well be that it is below 82 given that CH is also known as suicide headaches.

There is also an argument around quality compared to quantity. I'm not sure I'd swap being CH pain free for a few extra years at the end of my life and not being CH pain free.

nhs

You need to look at the numbers again

Add in deaths from cardivascular disease, stroke and acute myocardial infarct.

The evidence is clear the risk of death rises in a straight line relationship with D levels above 70nmol/L. The higher 25(OH)D (over 70nmol/L) the higher the risk of death.

My "early death" comment referes to my assumption that if the subjects hadn't died of cardiovascular disease, stroke or myocardial infarct then they might have lived a little longer.

Mike NZ

Its a good point but what you have to consider is a stroke not killing you and not being able to fend for yourself, including choosing what meds you take.

CH is bad enough but if the stroke doesn't destroy the part of the brain thats causing the problem then the problems get a whole lot worse.

NHS, Mike, Gary, Hoppy,

Reading comprehension and logic are apparently not among the Lad's strong suits... 

Moreover, with a mind like a steel trap, it's unlikely facts about the flawed study he keeps citing or a clear conflict of interest having one of the study's investigators clearly in Big Pharma's camp will change anything.

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If he wants a round of clap for public service in exposing unsafe medical practices with understated medical risks...  the Lad needs to take on one of the biggest medical hoaxes ever perpetrated by Big Pharma and their minions in the American Heart Association... and that's Statins...

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That's a very real dragon well worth a quixotic joust...

Its getting a bit like flogging a  [smiley=deadhorse4.gif]

Hoppy.

Bloody oath! 

I need a stiff Bundy overproof after all that!

[smiley=lolk.gif] I'll drink too that.

Lancashire Lad,

I have been following your posts with some interest recently and would like to a ask a few questions.

But first I must make this point.

In one of your earlier post you described this forum as a Stepford wives cluster headache world. I found this quite condescending as it implies that people here don't research various theories on treatment before trying them, but just take everything written here with blind faith.

---------------------------------------------------------------------

You said that you come from a scientific background, but never indicated what branch of science that is. Would you do so now, as, for me at least, it has a bearing on the gravitas of the views you express?

You never stated what your diagnosis was in January and, of course that is your prerogative. But am I right in saying you were not diagnosed as suffering from Cluster Headaches? I ask this because I believe that you have to be a sufferer of CH to fully understand the  impact of the condition. I apply this to the Medical profession also.

You have expressed views on Cervical Spine Dysfunction, VNS, BP Spikes and most recently Vitamin D3 toxicity. This is a wide ranging set of very specialised topics and I doubt if there is even one Neurologist who is comprehensively familiar with all of them.

I am trying to establish your credentials in this complex field to help me assess the value of the views you express.

Clearly you are a well educated and intelligent man, who has gone to a lot of time and trouble to research this whole Cluster Headache conundrum. However, I like to thoroughly research for myself all views expressed in this forum and it helps to establish where those views come from.

Regards,

Peter.

Hi Peter

Thank you for your interest in what makes me tick and your concerns over my suitability for membership of this group. I will try and assist.

I am currently being assessed for the correct diagnosis but I am pretty sure that I know what CHers go through. Last summer I was in constant pain with exacerbations of 10/10 for 20 - 80 mins at a time, 3 - 4 times a day. And then the pain levels of exacerbations got worse.

By the time I got here I was pretty desperate to find a solution, I could no longer rely on the doctors. With excellent input from here and some ramped up research I was able to find a short / medium term solution to the unbearable exacerbations; Indomethacin.

Indomethacin is not a preferred solution as it rots the gut, causes psychosis in older age and contributes towards heart failure. But I wouldn't let anyone take it from me until I have something to replace it. Hence my empathy with D3 users that find relief for their extreme headaches. But if D3 poses risks, which the evidence suggests it does then anyone embarking on an elevated regimen needs to be aware or the possible risks.

You might think I was happy when I found my "temporary cure", I wasn't. I was as mad as hell at the medical community entrusted to helping people like me and thousands of others allowing us to go years, sometimes decades without dispensing the proper treatment.

I have some sympathy for the GP's, when I used to go in, the doc had probably seen half a dozen more people that day complaining of headache.

But mad I was. And my madness did not improve when I discovered Goadsby and Sjaarstad bickering over a headache classification. The Doctors priority is to make a correct diagnosis, if this leaves the patient in pain so be it. I'm a bit more pragmatic than that, get rid of the pain first, then give it a name and say we don't know what causes it and therefore we can only treat the symptoms.

I wrote to Goadsby and Sjaarstad expressing my disappointment in their behaviour, I suggested they   create a new classification for the disputed headache as the patient couldn't care less what it is called and whatever they call it they don't know what's causing it. Neither responded.

My background is in Engineering, Rocket and Countermeasure Design. To take out a missile, torpedo or gun dish with a countermeasure you have to know how the threat works. Any intelligence gathered is important as it can be the difference between life and death. So when the new Danish study was so roundly rubbished I thought why? Why dismiss something as flawed in a particular area and draw fallacious conclusion that therefore the whole study is useless when in fact it may have extremely important implications.? It doesn't make sense scientifically. What does make sense, as the study conclusions recommends (as a hungry scientist might) is further studies are needed looking in specific areas.

My beef with Batch is he has rejected an extremely important study out of hand. Its not just this study there is a mountain of evidence that too high D levels cause all kinds of problems. If as he did with me, he is privately approaching other individuals with CH / CH type headaches and recommending the D3 regimen then he must not say it is perfectly safe; he doesn't know that and there is plenty of evidence to suggest the opposite.

But like me with Indomethacin, once you know the potential risks then you can make an informed choice when weighing up the benefits.
I am sorry you found the Stepford Wives remark condescending, it wasn't meant to be, I was just saying that there was a curious calm serenity in the group accepting the status quo. There shouldn't be, it is completely unacceptable that sufferers are allowed to go years without proper help. I was hoping for more anger just not of the Batch abusive variety.

ps Thanks to the experts I can be officially CH or Hemicrania Continua, possibly Cerviogenic and possibly a few more. It doesn't really matter, they don't know what causes any of them. My theory is different headaches can manifest from the same cause. When I have a firm diagnosis I will let you know. I not waiting on Goadsby and Sjaarstad for a diagnosis as I satisfy both their opinions on what it should be.

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to be read in conjunction with correspondence at refs1 & 2 in above link.

indo doesnt work for cluster headaches so if you have had relief from that drug you are lucky in the fact you do not have clusters.

Thanks Tangerine

In fact Indo does work for some CHers, also Migraine but is effective in pretty much all cases of HC and PHC and some cerviogenic.

Its not a preffered therapy for CH because of the side effects.

Believe me I am not lucky if I can be diagnosed with something else. Having layers of CH, HC and Migraine is not my definition of luck but that's the direction I seem to be taking.

lancashire Lad,

I would like an explanation on how outdoor workers can achieve a vitamin D level after summer sun exposure,   which is precisely in the interval considered to increase the risk of stroke etc., according to the Danish study?
Levels of 30 people was measured and they had an average of 48.8 ng / ml (38 to 61.6 ng / ml) after the summer.
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The press release, that vitamin D level above 40 ng/ml increase the risk of dying from stroke etc. is a big lie and nothing else.  ;) Levels above 40 ng/ml is naturally achieved by sun exposure in humans and is very important for our Health.  :)

Natural Levels of Vitamin D

Sunlight = Vitamin D: Humans make 90 percent of their vitamin D naturally through sun exposure to the skin (without sunscreen). In Canada‚ our northern climate means UVB levels in sunlight are too weak 4-6 months of the year to makeany vitamin D naturally.

What is the intended, natural level of vitamin D that the human body was designed to operate with?

Humans evolved in the horn of Africa, close to the Equator over 30,000 years ago. They spent their days out in the full sun, with no clothing, hunting and gathering food. Their skin pigment evolved and protected them from sun burns and allowed the production of vitamin D through the skin. Nature never intended for humans to live and work indoors, in cubicles, without sunshine exposure.

Non-Human Primates: 125 – 200 nmol/L
Vieth 2004 – Why the optimal requirement for Vitamin D3 is probably much higher than what is officially recommended for adults
 
Maasai and Hadzabe, Tanzania: 115 nmol/L
Luxwolda 2012 – Traditionally living populations in East Africa have a mean serum 25-hydroxyvitamin D concentration of 115 nmol/L

Outdoor Workers – Lifeguards: 163 nmol/L
Haddad 1971 – Competitive protein-binding radioassay for 25-hydroxycholecalciferol

Outdoor Workers – Puerto Rico Farmers:135 nmol/L
Haddock 1982 – 25(OH)D serum levels in normal Puerto Rican population and its subjects with tropical sprue and parathyroid disease

Outdoor Workers – Nebraska: 122 nmol/L
Barger-Lux, Heaney 2002 – Effects of above average summer sun exposure on serum 25-hydroxyvitamin D and calcium absorption

Indoor Tanners: 95 nmol/L
Schwalfenberg 2010 – Addressing vitamin D deficiency in Canada: A public health innovation whose time has come

Average Canadian: 68 nmol/L
Statistics Canada – Langlois 2010 – Vitamin D status of Canadians as measured in the 2007 to 2009 Canadian Health Measures Survey

Dermatologists: 35 nmol/L
Czarnecki 2009 – The vitamin D status of Australian Dermatologists

GrassrootsHealth and over 40 Vitamin D Scientists recommend achieving an optimal Vitamin D level for disease prevention of 100-150 nmol/L using a 25(OH)D blood test. This is the natural levels that the human body had as it evolved over thousands of years. Everyone should have their vitamin D 25(OH)D blood serum levels tested and make sure they are within these guidelines.

Michael F. Holick, Ph.D., M.D.
A summary of the health benefits and disease incidence prevention
that could be achieved by raising the public's vitamin D levels to 125 nmol/L:

• Rickets, reduced by 100%
•Osteomalacia, reduced by 100%
• Cancers, all combined, reduced by 75%
• Breast Cancer, reduced by 50%
• Ovarian Cancer, reduced by 25%
• Colon Cancer, reduced by 67%
• Non-Hodgkins, reduced by 30%
• Kidney Cancer, reduced by 67%
• Endometrial Cancer, reduced by 35%
• Type 1 Diabetes, reduced by 80%
• Type 2 Diabetes, reduced by 50%
• Fractures, all combined, reduced by 50%
• Falls, women reduced by 72%
• Multiple Sclerosis, reduced by 50%
• Heart Attack, men, reduced by 50%
• Peripheral Vascular Disease, reduced by 80%
• preeclampsia reduced by 50%
• Cesarean Section, reduced by 75%

nhs

I did wonder, when reading trough your dissertaion, if Grassroots would rear its ugly head, I wasn't disappointed.

Bad science is created by people who only look for evidence to support their theory and reject conflicting evidence in a hysterical rant.

Why don't you go and peddle your wares in Saudi Arabia, their need is greater from your skewed D defficiency perspective.

This forum is for Cluster Headaches, of course you could highjack it for Grassroots and the Vit D Council but why would you. You don't know why Vit D interacts with Cluster Headaches, you can't explain why Batches regimen appears to trespass into placedo terrirtory and you cant tell me what dangers there are in elevated D use with regard to CH sufferers. You don't know. All you "know" without a shred of evidence, is that you don't like the Danish results. Why because they don't say what you want them to say.

The sensible thing would be accept the study and agree further research is needed. But you don't want results from unbiased research you rely on cherry picking evidence to reinforce your twisted view of science.

nhs

To answer your question

The mechanisms of sunlight and popping pills are very different in raising D levels in humans. The marker 25HD can lead one to think they have identical influences.

This is not true.

The truth of D compexity in the human body is not known, not by Vit D Council, not by Grassroots, not by proper scientists, not by you.

Stop presenting the 125 nmol/L "science" as fact, its not and the Danish study points you in the right direction even if you don't want to go there.

125nmol/L appears to be dangerously high, from supplements not sunlight (again they are different). More research is needed and less hyperbole.

Lancashire Lad,

Thanks for the reply.

I will send you a PM later this evening.

Peter.

lancashire Lad wrote on Mar 14^th, 2015 at 2:36pm:

nhs To answer your question The mechanisms of sunlight and popping pills are very different in raising D levels in humans. The marker 25HD can lead one to think they have identical influences. This is not true. The truth of D compexity in the human body is not known, not by Vit D Council, not by Grassroots, not by proper scientists, not by you. Stop presenting the 125 nmol/L "science" as fact, its not and the Danish study points you in the right direction even if you don't want to go there. 125nmol/L appears to be dangerously high, from supplements not sunlight (again they are different). More research is needed and less hyperbole.

125 nmol/l appears to be a normal level for people spending a lot of time outdoors. ;) Thats a fact and not rocket Science.

And since you conclude that mechanisms of sunlight and vitamin D3 pills are very different in raising D levels in humans, then you might be so kind to proof it, thanks. If you can´t, please stop your better knowing attitudes.  :)

nhs

Prove it?

The initial differential mechanisms are self evident. The next are not and not so well understood.

The skin route has self regulating abilities but the mouth / gut route, if you don't crap the excess out, any unwanted  stuff gets absorbed.

25HOD whilst useful does not give a picture of whats happening at cell level and depending what other stuff is going on in /around the cells.

And its the bank of unneeded synthetic D that appear to cause the problems. I don't know why.

Check out Tony's post re daily intake of "only" 10,000 iu resulting in a 25HOD of 476nmol/l

No one should be taking 10,000 iu / day unless they are closely monitored or bad stuff can and does happen.

As for better knowing attitudes I admit it I know what I don't know and I know only further research will help me learn whats actually going on with D or I could just go for 125nmol/L and hope for the best.

tangerinearmy wrote,indo doesnt work for cluster headaches so if you have had relief from that drug you are lucky in the fact you do not have clusters.

Indo are used to treat TAC's (SUNCT) cluster headaches,
those of which I wouldn't wish on my worst enemy.

Hoppy.

Hey Lancashire Lad,

Perhaps we can converse, sans friction, in neutral territory... like air launched missiles?  Can I assume you work on the Matra/BAe ALARM or one of the newer ARM variants? 

I used to fly Iron Hand (Wild Weasel SEAD) Escort missions in the F-8 Crusader providing MIG cover for our A-4 Skyhawks equipped with Target Identification and Acquisition System (TIAS) and carrying the AGM-45 Shrike anti-radiation missiles…

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I also had the opportunity to fly a night Iron Hand escort mission on an A-6 Intruder carrying the AGM-78 Standard ARM (STARM) during Operation Linebacker in ‘72… 

It was always a thrill to hear one of the A-4 Iron Hand pilots call “SHOTGUN” over the radio then watch a Shrike streak off towards a SAM site… It was particularly so at night…  The night STARM launch was spectacular…  The Standard Missile rocket motor lit up the entire coastal area around Haiphong as it streaked towards a SAM site near downtown Hanoi.

Unfortunately, the A-6 Intruder driver failed to make the customary courtesy call “MAGNUM” prior to launching the STARM… 

You always got a little puckered crossing over the beach heading into North Vietnam…  The pucker factor was even higher at night…  Accordingly, when the unannounced STARM torched up and away from the formation, it resulted in a chorus of radio calls from the rest of the Iron Hand and Strike group aircraft ranging from a few “Oh $hit…” and a couple “SAM !!!” followed by a single “I hope that was one of ours…”

My sub-specialty as a Navy fighter pilot was Air-to-Air Missile Systems and the AIM-9 SIDEWINDERS in particular.  I spent nearly 4 years at the Naval Weapons Center, China Lake, CA working on the AIM-9H with Lead Bias and the AIM-9L Sidewinder missiles.  I was also the operational test director at VX-4 for both the AIM-9H OPEVAL and the AIM-9L Joint IOT&E OPEVAL with the Air Force… 

In all, I fired 2 of the AIM-9H and 16 out of the 29 AIM-9L Sidewinders launched in the IOT&E OPEVAL…  All of these missiles were fired at unmanned aircraft targets maneuvering at 6 Gs or more…

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Of course, I would usually request a high-speed pass down the runway following a missile shoot…

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Take care.

V/R Batch

I'm tending to think this thread has run its course with a
no win situation. Everyone seems to have his own opinion
including scientists as you read about or see on TV, to
much of this is bad for you, then a new study contradicts
this. Oh deary me, its time for more than two standard  [smiley=beer.gif] today.

Cheers, Hoppy.

I agree Hoppy And Batch your reminiscences are before my time. Didn't you used to throw pieces of foil from the window to keep Charlie at bay?  ;)

Lancashire Lad,

Actually, it was the B-52s that used "Window" a type of chaff made of black paper with aluminum foil backing cut exactly 27 by 2 centimetres (10.63 in × 0.79 in) and packed into bundles each weighing 1 pound (0.45 kg).  It was a klingon tactic and fascinating bit of war fighting history developed during WWII by both sides to jam the first radars. 

Both sides knew about the technology but refrained from using it in fear the other side would use it on them... It was first used by the Brits against German radars followed shortly thereafter by the Bosh during the Battle of Britten to jam Chain Home, or CH for short, the AMES Type 1 (Air Ministry Experimental Station) early warning radars.

I've spent a good bit of time at the Imperial War Museum, Duxford, UK...  Five trips there to be exact...

Most of the Vietnam era Fighter and Attack aircraft were equipped with the ALE-29 Chaff dispensers...  We carried two 24-shot dispensers each loaded with a mix of flares and radar jamming aluminized fiberglass bundles cut to jam S, C and X-band radars. (E, G, and I band radars in current NATO lingo). 

One bundle was sufficient to create a protective radar reflective decoy cloud for A-4 and F-8 aircraft

We rarely wasted any chaff on radar controlled AAA...  Our Active DECM gear coupled with a simple jink in altitude was all that was needed in most cases to spoof radar controlled AAA.

The Soviet made Fan-Song, SA-2 Sam fire control radar as well as the Spoon Rest and Flat Face long range early warning radars coupled with the Side Net height-finders were another story...

We would routinely pick up the Spoon Rest and Flat Face early warning radars on our RAW gear as soon as we climbed above 5000' after launching from the carrier, 90 miles from the beach on Yankee Station...and the Side Net height-finding radars about the time we crossed the beach.

Fortunately, we had superior weapons systems, avionics, tactics and SOPs written in blood, so we were able to detect these radars long before they could detect us, and accurately identify the threat sectors long before we flew into their threat envelopes.

By the way, I was serious... deadly serious, about the threat from Statins...  If you could increase your knowledge base on the risks from this Big Pharma, AHA and AMA medical hoax... we'd like to hear your opinion...

Take care,

V/R, Batch

Batch

You have a good memory for detail, maybe D3 is doing some good after all  ;)

As you know CM's can be used in multiple roles Decoy, Distraction, Confusion, Walk-Off etc and then came CCM's.

So when the call out for Statins Research came I instinctively thought "Distraction". He's trying to get the bugger off D3!

Then I remembered the less than easy relationship that D and Statins have.

Here in the UK, also, the controversy of Statins has been rolling on with recent studies highlighting the association with Diabetes and Parkinsons.

The evidence is that Statins have been over-hyped / used probably through a combination of a number of factors; profit led pharmas, lobby complacent politicians, pliable GP's and needy patients.

The truth is Statins have a useful roll to play but their mass dispensing programme has undoubtedly caused many problems, (more than they have solved? I don't know)

I take Statins, it took a while to find one that didn't make me feel like crap. 3 or 4 years ago I had a heart scare (there was nothing wrong with me) but I had developed chest pains, numbness down my left side, breathlessness and palpitations. It turned out that a BP med that I was on was causing the problems.

But in the effort to discover what was causing my symptoms I had every test done. they found nothing except on the MRI with dye they found a tiny crystal of calcium in one of the tubes to/from? my heart. (Apparently calcium crystals are like rats, there is never just one of them).

My cholesterol was well within acceptable bounds but I agreed to the Statins anyway.

It was intersting how the cause to my symptoms surfaced, I left hospital with new BP meds, after a couple of months I had run out and forgot to get a new prescription so I turned to my old meds until I had chance to get a new prescription. I took one of the old pills and bang, within a few hours all the symptoms were back.  When I met up with my cardiologist I described the incident to him, his response was "Yeh, they are not a particularly good  hypertensive medication". Having said that I had been taking them for 2 or 3 years without any problems (that I knew of)

Anyway my view;

Mass prescribing (indiscriminate) of Statins is bad
Some prescribing of Statins is good
Interaction of D3 and Statins is odd, also different Statins, different reactions.
Individual's drug tolerance varies immensely as do the mix of the various things that are slushing through our bodies. One person's blood results where they are demonstrably fit and healthy if found in someone else, they could be very sick.

What one person can tolerate and is "normal" for then can be extremely harmful to another.
Never change the balance of stuff slushing around without close medical supervision.
Listen to your doctor but don't necessarily trust him / her

I started to take vitamin D3, magnesium and zinc 6 years ago, and my BP dropped from 130/90 to 100/70. So no need for BP medication.  :)

My cholesterol level is to high if you ask my physician , but I'm convinced that the cholesterol lowering campaign to lower the risk of stroke etc. is a big lie. The recommendations are only based on a hypothesis and has never been proven.

The International network of cholesterol skeptics: Thincs
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Statin Drugs are Poison
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Lancashire Lad, NHS,

Thank you both for two outstanding and very informative posts!!!  Now we're talking...

Here's my take...

1.  The cholesterol myth is one of the biggest lies fueling the use of statins.  Keys "cooked" the data in his original 1961 study with flawed methodology and glaring omissions to show an exaggerated "correlation" between elevated serum cholesterol levels and increased mortality... Yet there was no supportable evidence this relationship was causal in nature... 

Had the Keys study been subjected to real scientific rigor* with an unbiased and objective peer review process, the study results would have been laughed into obscurity as junk science... until Keys or his acolytes tried to perpetrate the same lies again...

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The Masai people ate a traditional diet of raw meat and the drank a mixture of cow's milk and cow's blood...  a diet extremely high in cholesterol... yet they remained very slim (and very tall) with very low body fat and near zero incidence of cardiovascular disease.  They also developed a higher average level of cutaneous vitamin D3...

Yes, they've got the genes or evolved the genes for this diet, but bring them to the US and put them on the "Standard American Diet" (S.A.D.) and they experience obesity along with CVD at the same elevated incidence as too many people here in the US.

The same thing can be said for the Aleut people.  Their traditional diet consisted of fish, shellfish, whale, walrus and seal meat and blubber along with game animals, caribou, musk oxen, deer, and moose...  During the summer, they picked a few berries and roots.

Again, a diet very high in cholesterol and although they had a higher level of body fat than the Masai...  they experienced the same very low incidence of CVD...  Not much sun at the higher latitudes so they got their vitamin D3 from fish and fatty meats.

Then along came traders from the South with alcohol, the Bureau of Indian Affairs and the US Dept. of Agriculture with the S.A.D. diet...  As a result, the incidence of obesity and CVD among the Aleut people shot up with a concomitant increase in mortality rates.

2.  What is it in the S.A.D. diet (and it is a very sad diet) that causes the problems?

Sugar, high fructose corn syrup (HFCS) and refined starches... primarily from grains... It's essentially a diet with more carbohydrates than the human body can withstand without becoming obese and/or falling ill to a wide range of medical disorders with high morbidity and mortality rates.

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And the real kicker... Total Carbohydrates and obesity

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4.  The following link to an article by Dr. Thomas S. Cowan, MD, debunks the myth that high cholesterol causes an increase in CVD and in mortality rates...  I've also checked Dollars for Doc's at propublica.org...  Dr. Cowan is not on the take...

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3.  So why do Big Pharma, the AHS, AMA and Big Government keep pushing statins? 

The answer is simple... Follow the money...  Statins have converted too many physicians into drug pushers prescribing a life long course of man made drugs that are not needed instead of treating the underlying condition... (Usually a poor diet high in carbohydrates, no exercise and not enough vitamin D3).  Patients all over the world are blindly being hooked for life on statins resulting in a bottom line profit to Big Pharma in the Billions of dollars (USD) a year. 

Big Pharma ensures that profit continues unabated with industry sponsored CME and financial incentives to practicing physicians.  Too many physicians in leadership rolls in the heart and medical associations as well as big government follow suit either as willing minions on the take or incompetent dupes. 

It's the big government role in statins that concerns me the most...  These are the same nanny state, liberal progressive bureaucrats (read socialists and pinko commies) who think we're stupid in matters of healthcare yet they're so inept they can't contract for a functioning obamacare web site.

Last year, the U.S. National Institutes of Health (NIH) revised its guidelines for preventing heart disease by lowering the safe level of cholesterol. One result was that the number of people who can benefit from taking cholesterol-lowering statin drugs nearly tripled.

(You know Big Pharma is loving the heck out of the NIH revised guidelines.)

Under the old guidelines, 13 million Americans were targets for cholesterol-lowering drugs; under the new guidelines, that number rose to 36 million, meaning far more people should be able to use them to decrease their risk for heart disease.

(YGBSM!!! That's pure BS!!!)

The new targets for cholesterol are much lower than they were. The new goal is to get your LDL, or "bad" cholesterol level, below 100. The old recommendation was 130. These are the strictest guidelines, set for people with many risk factors.

One of the independent risk factors listed in the report is diabetes; the NIH guidelines say that having diabetes is as important a risk factor as having heart disease itself. You're also at higher risk for heart disease if you smoke, have high blood pressure, are older, or if you have a family history of heart disease... 

Yet there were huge glaring omissions in the junk science used to support this revision...  There was no mention of carbohydrate intake and metabolic syndrome...  only a pharmaceutical solution...  Again... follow the money... 

Moreover, there was also no mention of gold standard RCTs, sponsored by NIH, showing a proper diet combined with Omega-3 fatty acids and exercise were just as effective in lowering LDL as statins…

So were does that leave us…  and what should we do?  The simple message is take an active role in your healthcare and nutrition.  Time spent reading on what works and what doesn’t, should be done with a critical eye on any proofs or evidence.  In the final analysis, this could easily be the best health insurance you can invest in given the increased cost of healthcare insurance and decline in healthcare delivery…

Lancashire Lad and I are in total agreement that seeing your PCP or neurologist is a must…  We’re also in agreement that some physicians may not be all that trustworthy or competent…  particularly if their solutions are only pharmaceutical in nature and they don’t provide a clear discussion of the side effect risks associated with these pharmaceutical solutions.

Good science is not a consensus…  The beauty of the scientific method comes in proving the stated hypothesis, then, defending that proof in peer reviews and having others find your results repeatable…

That Lancashire Lad and I have yet to prove our respective hypothesis to each other’s satisfaction with respect to the efficacy and safety of vitamin D3 is understandable…  And that’s the beauty of this website.

Take care and I hope these last few posts were worth your time.  Thank you again Lancashire Lad and NIH.

V/R, Batch

* See the following link for an excellent discussion of scientific rigor...

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Lancashire Lad: "But in the effort to discover what was causing my symptoms I had every test done. they found nothing except on the MRI with dye they found a tiny crystal of calcium in one of the tubes to/from? my heart. (Apparently calcium crystals are like rats, there is never just one of them)."

10 years ago I was diagnosed with Shoulder Impingement Syndrome (calcium deposits). My symptoms included difficulty reaching up behind the back, pain with overhead use of the arm and weakness of shoulder muscles. The only treatments are painkillers, anti-inflammatory drugs or surgery.

But after reading about chelation, I started to take 2 tblsp. of organic apple cider vinegar per day. 3 months later I coundn´t move my left arm and had lot of shoulder pain for about 3 weeks. But afterwards my shoulder went normal and all the symptoms were gone for good. :D
In the same periode I experience some heart block symptoms, and I got my heart scanned. Before I recieved the result my symptoms were gone, and the scanning showed no signs of calcium crystalt at all. So my theory is that the apple cider vinegar has removed calcium from my heart too, which might explain the heart block symptoms. My physician was very surprised not to find any calcium deposits, which is normal in my age and especially since I have been smoking 20 cigarettes per day for 40 years. :)

So taking apple cider vinegar is one of my daily routines.  :)

interesting thread !!!  to say the least

Batch, my money is on you mate !  100 %

I had a neurologist 2 years ago say that O2 wouldn't work
the next neurologist put me on fast release verapamil without a follow up check on b/p  I actually crashed !
plus, advised me to double my intake of ibuprofen !
  imagine the last 2/12 years on that stuff and the state that my gut would have been in !!!!
Lancashire, please inform me on any appropriate tests that I should be taking, im going to my doctor for my 3 monthly tests because of the vit d3 regime im on, I need to no about the heart attack and stroke im going to have !!
I take 10,000iu vit d3 per day
all the other co efficients
for 2years now.
pryor to taking the regime, I was 35 nmol,
in the sun 365 days a year, have skin cancers getting burnt off every other year,   deficient
past tests indicate im at 200 nmol  and maintain it with 10k vit d3 daily.
cholesterol............acceptable range
calcium.................acceptable range
b/p ...................   120/70    im a smoker and 54 yo
heart and functionality test.......excellent

when you talk about facts
     the only facts worth a grain of salt, are those of us that remain pain free on the regime and with no evidential issues that you are claiming will happen to us.
googles a great thing, but ive always said its a great way to collect information, but real life is always a lot better.

reminds me of the recent study that claimed fish oil gave us prostate cancer !!!!!
funny how it was funded by a particular drug company that produces a chemical cholesterol lowering drug. !!!!!!!
we all know how the ill informed got sucked into that !
as mentioned,  theirs no better acknowledgement or proof of fact, than those of us on the regime,  still breathing, still functioning, pain free, or dramatically reduced symptoms,  no heart attack or stroke, clean bill of health 

didn't they once write,  the world is flat ?
if its written down, it must be right ? right
cant say I really enjoyed some of your comments, especially the disrespectful  ones directed at batch !
he has runs on the board Lancashire
no fatalities thus far
you, have a bunch of theories derived from a small section of research into vitamin " possible intoxication " and its "supposed side effects, again, theory not proven.
you quoted about reaction at cell level ?  don't stop there explain what happens, or haven't you read about that yet. Batch goes into detail about the cellular structure and its effects with vit d3 and vit a and there interaction.
Equally, Batch cant definitely say, it the wonder treatment, but neither can you unequivably quote " that it is dangerous.
perhaps its you that should pedal your biased approach to vit d3 in Saudi Arabia,  but firstly, until you get properly diagnosed from a h/a specialist that you DEFINATELY have cluster headaches, so that you officially walk in our shoes, a more open minded and proper research into all studies on the subject might be in order here !
   without the regime, my life wouldn't function, with the " dirty drugs" as my neuro told me I would have to take if verapamil didn't work, which is documented as causing fibrosis of internal organs ( I forget the name of it ), geeez, its a no brainer !   
this is generally the reaction of people, including doctors, of a little bit of information is dangerous !  as well as some peoples ego I might add   ;D

as mentioned, my money's on batch !!!  to many good reports of positiveness on the vit d3 effect in all walks of medicine to dismiss because of one study, which offers a view which is theory and unsubstantiated with proper clinical trials, and while interesting and worth the read, it would be extremely naïve to make the assumption that this is gospel, in turn refuting many many other independent studies proving otherwise, or as you say, "it is dangerous "
so so naïve ! that comment needs to be pedalled else where, until the facts are unquestionable !

well what a block buster first post in a while !!!    ;D


and as always, just my opinion
colin

 

How Timely... A great article titled:

Statin Disaster, Heart Disease and Magnesium – Change in Cholesterol Recommendations

See the following link:

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A zinger quote from the article...

"Statins are the most profitable drugs in the history of Big Pharma. Statins fail to prevent or treat heart disease for almost everyone who takes them and they are causing more harm than any other class of medications. Dr. David Brownstein shows us why the cholesterol = heart disease hypothesis is a failed paradigm and why the drugs should be pulled off the market. My advice is to run from Your Statin Recommending Cardiologist. "

Take care, read and heed...  I don't push bum gouge...

V/R, Batch

Batch, do you have some hypothesis why we got CH? :)

I think the root cause is gastrointestinal tract related like many other illness. So I have been taking several natural stuff to strengthen my stomach acid and digestive system. After 6 months I dropped vitamin D etc. for 2 months and had no signs off CH in the period. Some of the natural stuff I take is excellent for removing lactic acid buildup, which I think is the "pain starter". One of the remedies I take daily is citric acid to remove lactate and to strengthen the stomach acid. It seems that vitamin-D increases the body's citric acid levels, so maybe that is why it´s effective against CH?
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NHS,

Good question...  and fascinating topic that I allow myself to indulge in on occasion... and this is one of them.

I've several ideas, but none that would rise to the level of a hypothesis.  You've already brought up some excellent candidates.  I'm also in complete agreement that a healthy and happy gut plays a role in CH prevention.

Without time to compose my thoughts properly on paper and sleep on them, the following will likely be a stream of consciousness... with holes and fragments...  so please bear with me...

(Editor's Note - I've tidied up most of the dangling participles and disconnected thoughts after a pleasant combat nap.)

I start with the age old question of genes or environment...  With respect to CH, I think there's sufficient evidence to make a case for causality based on a combination of both genes and environment.

The following quote by Motulsky A., Nutrition and genetic susceptibility to common diseases. Am J Clin Nutrition, kind of sums it all up...  at least for me...

"Dr. Williams coined the term "genetotrophic disease" to describe diseases which resulted from genetically determined nutritional metabolic needs not being met by the individual and which result in poor gene expression. Motulsky has recently argued that many of the common degenerative diseases are the result of the imbalance nutritional intake with genetically determined needs for good health."

With that as a preamble, my base level causal factor lies in the morphology of the trigeminal ganglia and surrounding vascular structures.

When the arterial structures in and around the trigeminal ganglia are so arranged as to impinge or chafe any part of the ganglia, externally or within during vasodilation, there's a cascade effect of pain emanating from within the vascular structures and the transmission media, (the trigeminal ganglia and the three trigeminal nerves).

Natural asymmetry occurring during embryo phase of development could easily account for the one-sided nature of the CH disorder.

Although the vascular theory of CH pathogenesis has taken a back seat to the neurogenic theory, (I spent two days discussing this very topic with Dr. Arne May, MD, at his UKE facilities, University of Hamburg Medical School in 2009). Even he says vasodilation still plays a role, but downstream from the neurogenic initiation. 

In as much as I've a dated degree in chemistry circa 1966 with requisite courses in biochem, instrumental analysis and physics, I look at the cluster headache syndrome much like the fire triangle made up of heat, fuel and oxygen.  If you set the stage with any two of these components in place, the third component becomes a trigger and we have fire... or in our case with the CH disorder, we get hit. 

Accordingly, if the trigeminal ganglia's  vascular structures are not arranged properly, we have one corner of the fire triangle, hence we're predisposed or susceptible to CH.

The really fascinating chemistry takes place at the genetic level. They didn't start the $3 Billion dollar human genome project until 1990, and didn't declare it complete until 2003 when they had sequenced and mapped out most of human genome...   

BTW, I used to walk by a display of the hardware and stacks of notebooks used to sequence the human genome at NIH at least once a month for over 5 years...  I was a study participant in three back-to-back clinical trials for an eye condition at the National Eye Institute, NIH...

Since 2003, there have been tens of thousands of papers and studies involving the genetic underpinnings of nearly every degenerative disorder known to man.

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

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

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

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

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

There's a mind blowing (pardon the pun) study titled, Distribution of the Vitamin D receptor and 1 α-hydroxylase in human brain, Eyles et al, published in the Journal of Chemical Neuroanatomy in 2005. This study found VDR and 1α-OHase, the enzyme that's needed to hydroxylate 25(OH)D to 1,25(OH)2D3, throughout most of the brain tissue. 

However, it's significant to note, they were found in the highest concentrations in the trigeminal ganglia and hypothalamus. (Ι'm confident Dr. Arne May would love this finding... Now we're talking the neurogenic head waters of CH pathogenesis.).

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

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

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

That said, I'll stick with the CGRP gambit for now as there is corroborating evidence provided by none other than the good Dr. Peter Goadsby and Dr. David Dodick.  These two neurologist have tag teamed on a pair of phase 2 RCTs involving the use of two monoclonal antibodies, ALD403 (Alder BioPharmaceuticals Inc) and LY2951742 (Eli Lilly and Company), both with an appetite for CGRP... to prevent migraine headaches...

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Given there is sufficient overlap in the pathophysiology of CH and migraine and that CGRP is a common component in both headache disorders, it's not unreasonable to expect these two MABs will eventually find their way into the treatment of CH...  at an average cost of $5000/week... 

Unfortunately, all biologics/MABs carry a long list of side effects that range in order from nasty to down-right onerous including: compromised immune system, life threatening infections like tuberculosis and pneumonia, fungal infections and a growing list of cancers.  Watch the TV ads for Humira (Adalimumab) and you'll get an even longer list of adverse side effects.

Having taken one of the MABs, daclizumab, (a potent immunosuppressant used following kidney transplants to prevent rejection), during one of the clinical trials at NIH... experiencing squamous cell carcinoma and eosinophilic meningitis within two months after starting it...  I'll stick with the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the cofactors at ~ 40 cents/day to prevent my CH...

As a side note... it's entirely possible that serum vitamin D3 enters the target nerve cells where it is hydroxylated into 25(OH)D and on to 1,25(OH)2D3 so as to initiate genetic expression rather than waiting for vitamin D3 to be hydroxylated first to 25(OH)D, then entering the target nerve cell.  This might appear to be a minor difference in the overall process, but it speaks to the initial speed of response.

In looking at the favorable response time data after start of regimen from the online survey of CH'ers taking the anti-inflammatory regimen to prevent their CH, the shape of this response curve matches the absorption of vitamin D3 into the blood stream...

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As you can see the serum concentration of 25(OH)D doesn't reach a maximum concentration until the 5th to 6th day after dose.

Moving on... Your comment on the human microbiome, the friendly colonies of flora and fauna living in the human GI tract from mouth to tail pipe, playing a role in the pathogenesis of CH has just as much merit as anything I've suggested.

When you consider the human microbiome represents several orders of magnitude greater biodiversity than the human genome, and many of these wee beasties (Leeuwenhoek), respond to vitamin D3, the number of possible CH causal factors are huge...

Moreover, as most (70%) of the immune system lies within a 4 inch radius of the GI tract, it's entirely possible that CH could easily fall among the other 80 degenerative conditions that ride under the heading of autoimmune disorders...

That throws the paradigm that cluster headache is a neurological disorder that should be treated only by a neurologist, into a cocked hat...

Clearly, neurologists specializing in headache disorders are better trained to diagnose CH...  That said, until the anti-inflammatory regimen becomes part of the standards of care recommended treatments for CH... I'm not sure that training equates to effective treatment.

Moreover, CH'ers might be better served by seeing an endocrinologist, immunologist or practicing nutritionist after being diagnosed for CH by a neurologist... 

So there you have the latest thoughts on the pathogenesis of CH currently rattling around my 70 year old brain...

Take care,

V/R, Batch

@Batch....

All very interesting ideas to ponder. My own experiences have led me to believe in the "gut" connection to CH. During my worst attacks, I would be able to count on a gastro-intestinal response. There is plenty of evidence that vasoactive intestinal peptide (VIP) is also quite elevated along with CGRP. Whenever I was experiencing this, I had a heads-up that it was going to be a doozy.

Pattik,

Your comment on VIP is spot on...  You've made an excellent point and observation that clearly implicate the gut as playing a significant role in the pathogenesis of CH...

There's an interesting 1978 article on Vasoactive Intestinal Peptide by Bryant in the Journal of Clinical Pathology that provided a recap of available research done at the time on VIP. 

His article found VIP is produced in the sublingual salivary glands and has a serum half-life in humans of 62 to 85 minutes. (sound familiar).

VIP is found throughout the GI tract with the highest concentrations nearly double found elsewhere in the GI tract, occurring in the large intestine.

At face value, this finding makes a case for evacuating the bowel at the first sign of a CH... After all, in the absence of an effective CH abortive, there's really nothing better to do.  Even with an abortive like one of the triptans, there's still the time needed for it to take effect that could be spent more productively...

Many thanks.

V/R, Batch

firstly, thankyou Batch for your thread, 2 years ago I would have stopped reading past the first paragraph !  but thru research and talking to you, Im starting to understand, and I re-iterate starting to understand more and more about matters of the body and their connection to CH.
I wasn't going to mention this until after I had done it, but,
6 odd months ago I took a heavy course of antibiotics, which you may remember I discussed with you and in conversation you recommended a course of probiotic.
Now I shadowed consistently last june to December, and the only time those shadows went away, was the month I was on probiotics !  didn't think much of it and in December started taking 180mg daily of verapamil, which ive been on ever since, Im still taking the regime daily with out fail, including k2, but felt that maybe going back on verapamil, the two would make me completely pain free. The last 3 months, have been o.k, very few shadows, and easily stopped with a red bull. BUT, I always have issues with magnesium, looseness  LOL,   but in my diary, both shadows and looseness disappeared totally while on probiotics,   I decided that I was going to go on probiotics for a couple of months, with everything else and see if I get the same result, which would mean I could again try going off verapamil and be soly on the regime.
Im hoping, as previously mentioned by NHS, that the probiotics are the missing link for me, along with the regime, to go to that complete pain free state, like so many others have done.
So the topic of the G I tract, is interesting to me, as Im about to start take a good probiotic and see if what, if any difference, it might make !   
   as you know, ive tried just about everything else ! but I do remain totally committed to the regime, It has reduced the symptoms of CH for me, dramatically,  But its always baffled me how it works for 60% of those taking it completely  and the other 20 plus %, like me, it doesn't quite get us pain free ?   maybe there's a percentage of us that should investigate the gut area, like NHS has already experimented with and seems to have some encouraging results,  and hopefully I can reciprocate the month I had previously taking probiotics.
I'll stay on them for 3 months and let you know how things progress
cheers
colin   

Colin,

You've got a sound plan with the probiotics.   The only other things I'd suggest would be to pick up some 30 mg zinc tablets and take one a day for a week to see what happens.  I'd also suggest fruit/berry smoothies in the morning. 

Fruit/berry smoothies are a great source of antioxidants and the little bit of fiber we can't digest makes a great meal for the friendly colonies of wee beasties you're trying to recolonize. 

I make mine with a fresh pineapple spear, a banana, a half cup of blueberries or black berries... (I found the frozen blueberries to be less expensive), a big handful of strawberries, an orange or an apple, a quarter inch slice of fresh ginger, a handful of fresh spinach, and one stock of kale or three to four spears of raw asparagus. 

I usually add a half cup of cranberry juice or coconut water to get the blending process going without cavitation then select the highest speed or press the smoothie button and let the blender puree the contents into a purple colored milkshake consistency.  The above proportions fill two large glasses so my wife gets one too.  They're quite tasty.

Big straws help...  My wife gets irritated when my moustache turns purple.

There are lots of great smoothie recipes at the following link: 

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Take care,

V/R, Batch

Radiolab ran a very interesting episode with neuroscientist John Cryan about the possibilities of what the bacteria in our gut can do and how probiotics may someday be at the front of medical science and psychiatry.

It's pointed out that the amount of bacteria in our gut come out to weigh about three pounds! At that size it's about the same weight as the brain; some speculate that they are an additional "organ" we know nothing about.

My favorite quote from this episode is "...it's poetic that a lot of our moods come from an organ that produces s#!t..."

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only 17 minutes long but packed full of information!

Gary

Hi batch,,, thanks for your imput
I have to admit, although I eat healthy, courtesy of my wife, I don't really eat rubbish,  I do eat a lot of bread, those quick peanut butter and honey snacks  LOL
But your right, the fruit and berry smoothies sound like a great idea and very relative to the gut.
I got the inner health probiotic today and its 3 months supply, they actually have a nutrishinest in the chemist I got to. She said to take two a day for the first week, then drop to 1 daily, I think there's about 35 billion of them little suckers in each pill !
I'll do the 3 months and see how the magnesium issue goes, and I seldom go a month without some sort of shadowing.  I guess there like vit d3, taking a probiotic has to be healthy in any ways, well, its a lot healthier than what my nuerologist was going to prescribe for me.
I'll get the zinc you recommended, but I might just use the probiotic first, so as I don't confuse which one if any will make a difference,  and as far as the fruit smoothies go,my wife just told me she just gave the smoothie maker away because I never used it  LOL   ironical
I'll buy another one, our fridge is always full of blue berry's
strawberries etc etc, my wife eats them all the time, I just stand at the fridge as I walk past occasionally and open the door and graze sometimes  LOL  but the smoothie idea sounds great and i'll set myself up as you have and make it my morning  morning ritual .
thanks batch, i'll keep you informed ...
hope all's well with yourself and family over in your neck of the woods.
regards
colin    

Glassman, thanks for that link
I don't have time ti listen to it tonight ( getting late here)
But it sounds interesting and i'll be listening to that tomorrow night,   cheers

colin

Colin,

Smoothies, GOMES diet and probiotics are great additions to the anti-inflammatory regimen as a coordinated therapy to control CH.  I do all three...

Unfortunately, eating the frequent PB&J sandwich (a comfort food that tastes so good), likely diminishes or compromises the beneficial effects of the fruit smoothie, GOMBS diet and process of repairing or recolonizing the gut's microbiome by taking probiotics.  This plays into the possibility that CH is yet another disorder in the growing list of autoimmune disorders.

Research into the relationship between autoimmune disorders and the human microbiome have have resulted in glutens being placed on the "Do not Eat" list of foods for a growing number of the autoimmune disorders as they contribute to a "leaky gut" (increased intestinal permeability)...

Sugar is likely fueling a condition called small intestinal bacterial overgrowth (SIBO). "SBIO results in the excessive fermentation of dietary carbohydrates and the accompanying flatulence, bloating, abdominal pain, diarrhea, and constipation."

"Autoimmune diseases, including type 1 diabetes, multiple sclerosis, and rheumatoid arthritis, are characterized by increased intestinal permeability secondary to non-competent tight junctions that allow the passage of antigens from the intestinal flora, challenging the immune system to produce an immune response that can target any organ or tissue in genetically predisposed individuals."

There's an excellent article in Today's Dietician, that goes into detail on this topic at the following link: 

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Accordingly, after a lot of reading, personal experiences and reports from other CH'ers, It's clear to me that the immune system plays a significant role in CH. 

That said, it's not clear at this point if that role is directly involved as a participant in the pathogenesis of CH or indirectly involved as a competing consumer of vitamin D3 and its metabolites.  Either way, as 70% of our immune system is located in and around the gut, having a happy and healthy gut (microbiome) is an important part of a healthy immune system...

How am I doing?  Well...  let's just say I've done better...  As you can see in the first photo below, the Red Alder catkins loaded with pollen are blooming.

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The house and yard are surrounded by hundreds of 100 foot tall mature Red Alder trees.

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As a result... we've been having a crap storm of Alder pollen for the last week and the worse is yet to come as the Alder catkin bloom will not reach a peak for another week.

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Not to be outdone, we've a half dozen large Pacific Maple trees within 50 feet of the house.  Three of them, right outside the bedroom window, are huge 250 year old trees that look like something out of Jurassic Park with sword ferns growing out of 40 inch diameter moss covered trunks 15 feet above the ground.

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Unfortunately, all these Maples are loaded with buds that will produce a second pollen storm that will peak around mid April...  Sooo.... I've got at least another month of this crap.

I stopped my calcium supplements, and bumped my vitamin D3 intake to 25,000 IU/day along with an increase in magnesium to 800 mg/day the 1st of March in anticipation of the pollen season.  10 days ago as the pollen started falling, I bumped the vitamin D3 dose again, this time to 40,000 IU/day divided into four doses spread throughout the day.

This increased vitamin D3 intake is working for the most part... but it's not 100% effective.  I've averaged 1 or 2 minor hits every 24 hours over the last week, usually while sleeping...  Fortunately, most of these hits resolve spontaneously in less than 3 to 4 minutes as soon as I get up and start breathing more deeply... 

None of these hits have gone above a Kip-5 or lasted longer than 15 minutes...  However, after living substantially CH pain free for over four years, it's clear to me that having my immune system insulted by an allergic response to tree pollen, makes it a clear player in the cluster headache syndrome.

Take care and please keep us posted.

V/R, Batch

Wow Batch, I remember a while back when we skyped you were talking about the pollen you were then getting and its effect. We have plane trees out the front of our place and they do the same thing, pollen everywhere, which sends my eyes and nose into a spin. We were in Barcelona a few years back and they have the plane trees there as well, both myself and my wife were amazed how it literally burnt the back of your throat as we walked around, even the locals were wearing scarves around there faces.
Any way, been on the probiotics for my third day now, the girl at the chemist said take 2 aday for the first week then drop back to a daily 1 dose. Well, first day, I took a full dose of magnesium 500 mg ( I normally split dose) plus I took an extra strength fish oil, which I had dropped from the regime a month or so back, as that contributed to the " looooseness  LOL,    I have to report, that from day one, there has been absolutely no reaction from the magnesium, which is the first time in months !!!! last nite I even tempted fate and took a double dose of fishoil with the 500 mg magnesium,   how can I delicately put this,    well,  there is no looseness at all !!   I just cant get over the immediate response that the probiotic has had !!!!
  Now I don't know what reaction the probiotic will have on helping me get fully pain free, only a prolonged stay on them will tell,  But for all you people using the regime having trouble in that department, splitting doses or taking as little magnesium you can,  please give the probiotics a go, It was instant for me !!!   
Im so glad I kept a diary, and went back over it when I took probiotics 3- months ago, but the penny never dropped at the time.
will let you know if I now get a reduction in the shadows and mini cluster hits Ive been experiencing over the past 6-7 months.   Very interesting !!!!!
regards
colin

Hey Colin,

Great feedback and another important data point...  Many thanks...  I've found it amazing that doing little things like take a couple probiotic pills can have such a major effect on day to day activities...

Take care,

V/R, Batch

Hi Batch and Colin,
I must be the odd man out! I'm still having a problem in that
Area, drinking lots of water during the day, and a dam buster
At night (Prune Juice) with 400mg Magnesium Citrate, but to
No avail, always constipated  [smiley=wtf.gif].

Hoppy.

Hoppy,

Magnesium citrate's increased absorption and bioavailability may be part of the problem...  Osmotic diarrhea is typically caused by undissolved magnesium salts drawing water into the bowels.  Pick up some 250 mg magnesium oxide tablets and titrate up with an extra glass of water to reach the desired consistency.

A more natural method would be to drink fruit smoothies with pineapple, apple, and carrots.  That will provide more indigestible fibers.

Take care,

V/R, Batch

Batch,
What is your opinion of topical magnesium lotions, gells, etc?  A friend of mine has as her M.D. a big time sport med doc and he has his pro athleates using that. The size of the magnesium tablets is some what off putting to me.
Gary

Gary,

Hmmm... you sound just like my wife...  "Those pills are toooo big..." but she takes them...  I've found that the liquid softgel form of magnesium capsules slide down the gullet very nicely...  Were they solid tablets, it would be another story...

Regarding Epsom Salt Baths, magnesium sulphate passes through the skin quite nicely.  A hot soak in a tub with Epsom Salt is also very relaxing... 

Unfortunately, taking 10,000 IU/day or more vitamin D3 likely consumes more magnesium that you absorb in an Epsom Salt bath... You'd need to soak for an hour a day or more to take in enough magnesium through the skin to keep up with the amount used by vitamin D3.

Transdermal magnesium preparations are typically magnesium chloride, but you run into the same problem meeting magnesium consumption... You'd need to lather up with magnesium oils or gels a couple times daily...  It's also the most expensive form of magnesium...

In short, we process more magnesium while taking vitamin D3 at the doses we take than the average professional jock...

One simple solution is a teaspoon of magnesium chloride every 3 to 5 days...  ~ 9 cents a day.  You could also add the powdered magnesium chloride to a fruit smoothie.  Henry Lahore at Vitamin D Wiki has an excellent web page on low cost vitamin D3 cofactors at the following link: 

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Hope this helps.

Take care,

V/R, Batch

Thanks Batch,
Great information, as always! :)
Gary

Thanks for that Batch, I'll give it a go, and see how I go.

Hoppy.

Hoppy,

I can speak from experience that titrating the magnesium oxide dose above 600 to 800 mg/day will liquify any slow moving solids in well less than 12 hours.  :o

Take care,

V/R, Batch

Hoppy
Having been around the board for a while and a CH sufferer for well over 10 years i have tried lots of things for long periods.  We all react differently, but our chemistry is essentially similar.  I.e if you take more D3 your 25 OH D3 level goes up.  It will drop due to illness and stress.  Irecently had an appendectomy which reduced mine by over 25%. The beast broke through as I dropped to around 140 nmol/l .  At the start of the winter i was at over 400 nmol/l, i had a full set of bloods done and all of my levels were normal.  I took 5000IU through the winter, in february I was at around 290 nmol.  The appendectomy and the winter reduced my 25 OH D3 level markedly.  I had a complete blood screen done during my appendectomy and once again all of my chemistry is normal. Listen to your body, take the regimen, monitor your levels.  A saluatory note to finish on, during my last o2 delivery (14 months ago) the delivery driver told me about a 32 year old father of 2 10 miles from me who had just committed suicide because of the repeated pain.  I sat on my bed one morning a few years ago and told my ex wife that if I had another night like I had just had I would kill myself.  Now I am largely pain free, I am a Principal of an Engineering School and love my life, that is down to Batch and the regimen.  You will always be able to find studies that contradict what you feel is right, keep the faith, take the D3, keep your serum level as high as you need to stay pain free and get your blood chemistry checked regularly.
I really dont give a monkey''s about any studies, I didn't take my life, there are two children growing up without a father because confidentiality does not allow the O2 delivery driver to give me the names of other sufferers.  At least now the lead neuro at the local hospital is aware of the regimen and he is advising people to use it.