Cosworth, RTD, Hangup, Jamie, 69Strat, j.p.m., All,
Great news from CH'ers new to this regimen, and as always, good questions and comments. Good on the new CH'ers who started this regimen and found it effective. Your comments carry far more weight with CH'ers standing on the sideline wondering what to do than anything I could say.
Please forgive the delay in responding. I've run some of the questions and comments by experts in this area in order to make sure I address them as best possible.
Like PlayDoh has asked, we still need more folks to take the survey if they've been taking the anti-inflammatory regimen for a month, had a significant reduction in the frequency and severity of their CH, or gone pain free, whichever occurs first. It's at the following link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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With around a third of the survey responses I expected, there's nothing in the comments that suggest this regimen extends an episodic cycle. On the other hand and to the contrary, there's more than sufficient evidence from the survey that this regimen cut the cycle short for the majority of the episodic CH'ers.
Based on the lab results many of you have posted, PM'd, or sent by email, the optimum target therapeutic range for 25(OH)D concentration for CH'ers to remain pain free appears to be 60-90 ng/mL, (150-225 nmol/L). This is a higher concentration than the lower threshold of 30 ng/mL, ~ 50 nmol/L, used to express the normal reference range typically listed by medical diagnostic labs when they give you the results of your tests for 25(OH)D.
I also have lab test data on 25(OH)D concentrations from CH'ers who were still having active CH... The highest concentration reported in this category was 42 ng/mL, (105 nmol/L).
Accordingly, if your lab results come back at less than 60 ng/mL, (150 nmol/L), that could easily explain why the beast is hammering out a tattoo with barbed drumsticks on the backside of your eye. If your labs come back at 30 ng/mL, (75 nmol/L) or less... it's a no brainer... you're clearly deficient… but some of you already know that. If you haven't taken the time to ask for this lab test... you may be whistling in the dark...
Just be aware that most physicians will look at your lab results for 25(OH)D and tell you any concentration over 30 ng/mL or 51 nmol/L is in the "Normal" range... when you know it needs to be higher.
What I've been trying to say is that for a CH'er who wants to be pain free of the beast and remain that way, the data collected so far suggest that we need to have our 25(OH)D concentration at or above 60 ng/ml, (150 nmol/L)...
Even after we've had a favorable response, we'll still need to continue taking this regimen with a vitamin D3 dose that keeps building our 25(OH)D concentration so that it stabilizes in a therapeutic range.
That some medical diagnostic labs here in the US express concentrations in molarity/volume vs mass/volume may reflect some kind of Eurocentrism... or it may be just a simple matter of the type of test procedure they use... or that they're owned by a European corporation...
I don't know... and it doesn't really matter... they could express the 25(OH)D concentration in stones per cubit, furlongs per fortnight or miles per gallon... as long as it converts to a range of 25(OH)D concentration equivalent to 60 to 90 ng/mL, (150 to 225 nmol/L).
The dose of vitamin D3 we take to get into this range and have a therapeutic response appears to be the underlying question in many of the recent posts... Calcium and the other mineral supplements, i.e., cofactors, appear to be a related topic as is whether or not to continue taking other prescribed CH preventatives.
Take a close look at the following chart that came from a 2003 study published in the American Journal of Nutrition (attached) on the 25(OH)D response to oral dosing with vitamin D3 conducted by Dr. Robert Heaney, M.D. Dr. Heaney is one of the Nations top endocrinologists dedicated to the study vitamin D3 as it relates to our overall health.
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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I've modified his original chart to show 25(OH)D concentrations in both ng/mL and nmol/L. I've also overlaid the color bands that reflect 25(OH)D lab results provided by many of you both before and after going pain free while taking the anti-inflammatory regimen with vitamin D3.
There are a few things you need to take away from this chart. The first point is if you're in the pink zone and getting whacked by CH day and night... you need to have a sufficient intake of vitamin D3 for the resulting 25(OH)D concentration to reach and stabilize in the green zone.
The second point is how much vitamin D3 to take in order to get into the green zone. As you can see from the chart, a vitamin D3 dose of 1,000 IU/day is not going to get you there... In short, that dog won't hunt...
Moreover, a dose of 5,000 IU/day may or may not get some of us into the green zone... The other problem with a vitamin D3 dose this low is it could take two to three months to find out... Given that most CH'ers, myself included, are an impatient lot, and we expect immediate results when we try a new treatment for our CH... waiting that long for a response to a medication is UNSAT, a non-starter, and an unfortunate reason to say this regimen doesn't work when it may have had the dose been high enough.
That leaves us with a conservative vitamin D3 starting dose of 10,000 IU/day. As you can see, each higher dose of vitamin D3 results in a steeper slope of the initial 25(OH)D response curve and a higher equilibrium end state. It doesn't take much imagination to see that a dose of vitamin D3 higher than 10,000 IU/day should have an even steeper initial response curve. Now I'm going to use the results of another study to show how to optimize the vitamin D3 dose into a statistical slam dunk if needed.
Take a look at the following chart also developed by Dr. Heaney from the 2011 study by Garland et al, published in the American Journal of Nutrition (attached). It's based on data collected by GrassRootsHealth in their D*Action Project where 3667 people paid to have their 25(OH)D levels tested every six months while taking various doses of vitamin D3 up to and including 10,000 IU/day and higher.
See the following link for details of the D*Action Project: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
I've modified this chart by drawing a line from a 25(OH)D concentration of 60 ng/mL to a point where it intersects the lower boundary of the 95% probability band around the 25(OH)D response curve from all doses of oral vitamin D3. I've also drawn a second line from that point down to the vitamin D3 dose needed to reach that 25(OH)D concentration. As you can see, that line comes down at a vitamin D3 dose of 20,000 IU/day.
Here's the take away... While a vitamin D3 dose of 10,000 IU/day is effective, and it will get most of us into the green zone, i.e., 25(OH)D concentration ≥ 60 ng/mL, (150 nmol/L) and for at least 70% of us who do respond with a significant reduction in the frequency and severity of our CH or go pain free... a vitamin D3 dose of 20,000 IU/day will get 95% of us into the green zone... and likely a little faster.
What to do? Let me first start with the obligatory non-disclaimer: I'm not a doctor nor am I licensed to practice medicine or nutrition in the venue in which you reside... even though I did stay at a Holiday Inn a few years back...
Talk with your PCP or neurologist... whoever knows the most about your overall medical history, your CH and prescribed medications.
I say this for two reasons... The first is to keep my butt out of jail... and the second is to start spreading the news within the primary care and neurological community of practitioners treating CH'ers that we have a growing body of evidence that suggests this regimen of vitamins and minerals actually works to prevent CH.
You may be conducting nutritional CME with a few of them... Having said that, most physicians should be receptive and even fascinated when you explain what you want to do and why. Provide the above data and analysis then prove it by asking for the lab test for 25(OH)D if you haven't already done so.
Now for the rest of the answer on what to do... and why... The general rule with respect to medications and supplements is to take a conservative approach... meaning take only as much as needed to achieve a therapeutic response. The best way to do that is start at a low dose and titrate up with progressively larger doses.
We're all a little different and we react differently to some medications... we've heard that many times in many posts here on CH.com.
Having said that, let me challenge the conventional wisdom behind that statement... We're all carbon-based units and we all have the same number of chromosomes... That means we should all respond to the same physiological rule sets that control human life... under normal conditions.
For example, we should all respond to the same dose of vitamin D3, with the same eventual range of serum concentrations of 25(OH)D. Studies have proven that. Remember, vitamin D3 is the only "Free" vitamin. Our bodies generate in the skin when exposed to the UVB in sunlight. Also recall that vitamin D3 is not a true vitamin. It's actually a hormone precursor, and as such, our bodies need the cofactor minerals to generate it in sufficient quantity.
I can hear the wheels turning... Where are we going with this discussion? Here you go… If we're all so different as CH'ers, and we all respond differently to some medications... then will someone please 'splain to me the following: If we're all so different... Why is it that we all have, under normal conditions, the exact same body temperature of 98.6º F (37º C), the same arterial pH of 7.35 to 7.45, the same serum calcium at 2.1 to 2.6 mmol/L... and the list goes on...
So lets review the bidding... So far, 70% of the CH'ers who start this regimen have a favorable response with a significant reduction in the frequency and severity of their CH. 95% of them found relief within the first 10 days with some in as little as 24 to 48 hours. 88% of these CH'ers enjoyed a 24-hour period pain free of their CH within the first 20 days... Of them, 66% have remained pain free.
Most of these CH'ers were taking 10,000 IU/day vitamin D3, but there are growing number of CH'ers who are following the treatment protocol I posted and have titrated up on their vitamin D3 dose... some up to 30,000 IU/day.
It's ok to increase the dose of vitamin D3 above 10,000 IU/day, but only after 10 days to two weeks just to make sure there's no delayed reaction and that you've given your kidneys and liver time to come up to full production of 25(OH)D. Even then, it's best to titrate up on the vitamin D3 by 5,000 I.U. every three to four days.
If your CH pattern responds favorably or you reach 30,000 IU/day whichever occurs first, stay at that dose. Also make sure you tell your PCP or neurologist... You'll also need another lab test for 25(OH)D in 30 days along with calcium and parathyroid hormone (PTH).
Calcium... Why is it part of this regimen? Simple... Most of us don't get enough of it from dietary sources. The calcium citrate and citric acid in lemonade or limeade also forms a buffer in the stomach that can elevate arterial pH making it less acid and more alkaline. Calcium citrate is also easier on the gut and doesn't need to be taken with food like calcium carbonate.
Calcium is the most prevalent mineral in our bodies and 99% of it is in out bones. Our nerves wouldn't function if the serum concentration of calcium is too low or too high. Calcium homeostasis keeps our serum concentration in a narrow range of 2.1-2.6 mmol/L, (8.4-10.5 mg/dL). The two primary controllers in this process are calcitonin and parathyroid hormone.
If we perturb that homeostatic balance of serum calcium concentration by dumping more vitamin D3 and it's active metabolite 25(OH)D into the blood stream, they trigger a reaction that absorbs more calcium from the gut into the bloodstream... If sufficient calcium is not present in the gut... this process will take it from the bones...
If there's sufficient calcium in the gut, calcium homeostasis with its primary controllers, calcitonin and parathyroid hormone, takes control. Excess serum calcium is either added to the bones through accretion, or the kidneys excrete it...
Finally, as most of us will need to stay on a daily dose of vitamin D3 to remain pain free of our CH for years if not longer... it's prudent to include at least 500 mg. of supplemental calcium to help prevent bone loss...
Why do we need the cofactors, i.e., magnesium, vitamin K, zinc and boron? Simple... The Vitamin D Council says we do... These supplements all play a role in the kidneys and liver as they metabolize vitamin D3 into 25(OH)D.
How much to take is a good question. I thank my dumb luck of selecting the Kirkland brand of calcium citrate as my source of supplemental calcium. Two of these tablets provides 500 mg/day calcium, some extra vitamin D3, magnesium, zinc and boron... It may be a little light on magnesium and there's no vitamin K... but that's an easy fix.
Omega 3 Fish Oil has anti-inflammatory properties that may be helping to hold down the neurogenic inflammation that's part of the cluster headache syndrome. It also does wonders in controlling and lowering the triglycerides or fatty lipids we burn for energy, store as fat, or that clog the arteries in our hearts...
That brings us to the frequently prescribed CH preventatives... So far, none of them appear to interfere with the anti-inflammatory regimen... As long as a prescribed preventative is effective... continue to take it... If it's not effective... ask yourself... "Why am I taking it?" Talk with your PCP or neurologist about tapering off of preventatives that are clearly not working... after you've been on the anti-inflammatory regimen for at least a week to 10 days...
There's always going to be a red flag raised on taking calcium supplements with verapamil... This is really a non-problem... There are a lot of folks taking verapamil for a heart condition... and they still need calcium supplements for one reason or another. If their cardiologists can come up with a treatment schedule that permits them to take both verapamil and calcium supplements... your neurologist ought to be capable of doing the same thing... If you're unsure, skip the calcium and see what happens…
Finally we have the comorbid conditions... i.e., medical conditions you may have other than CH... In other words, not normal... Some of these medical conditions are unrelated... others can clearly have an impact on CH patterns and treatments.
From the above discussions, medical conditions that affect the GI tract, kidneys, liver, thyroid, and parathyroid may have an impact on the body's capacity to metabolize vitamin D3 into 25(OH)D... There are several others with the potential to cause problems like diabetes, COPD, sinusitis, and allergic reactions...
The bottom line here follows... If the anti-inflammatory regimen has not resulted in a favorable response with a reduction in the frequency and severity of your CH after 30 days or less... there may be a good reason... other than... "It didn't work for me..." Ask your PCP or neurologist to look for it.
Hope this helps,
Take care,
V/R, Batch
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