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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Went shopping for vitamins...now what...guidance?
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Message started by helplesswife on Oct 27th, 2012 at 3:21pm

Title: Went shopping for vitamins...now what...guidance?
Post by helplesswife on Oct 27th, 2012 at 3:21pm
See pic.  This is what I got.  Can someone tell me exactly how to do this to get the best benefit?  My husband doesn't have much faith in this, but from what I've been reading, it's worth a try.  Guidance?
IMG037.jpg (560 KB | 1 )

Title: Re: Went shopping for vitamins...now what...guidance?
Post by Brew on Oct 27th, 2012 at 8:46pm
He'll need to take 1 of the fish oil, 4 of the D3 plus one of the calcium (total of 5000 iu per dose) twice a day. I take the magnesium with the nighttime dose. You need to add zinc to one of the doses (I take the zinc in the morning). Also, think about a multivitamin that has the other trace elements like vitamin K and boron.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by shooky on Oct 27th, 2012 at 9:20pm
Say, Brew, if I was tested for Calcium and happen to be in the middle of the range (far from deficiency) do I really need Calcium in my regimen?

Title: Re: Went shopping for vitamins...now what...guidance?
Post by Brew on Oct 27th, 2012 at 10:02pm
If you crank up your D3 intake, the metabolism of it will require more calcium (and the other trace minerals). The process will take it from somewhere, and I'd rather it not be from my bones.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by helplesswife on Oct 27th, 2012 at 10:35pm
Thank you, we'll start this tomorrow.  Just curious, Brew...did you learn all this from trial and error, or are you in a profession that gives you this knowledge?  Just wondering because I'd imagine it would take a really long time to figure out what goes with what and in what quantities...a seemingly overwhelming task.

Also, are there any dangers (long or short term) of such high doses of any of these things?  I know the typical Vitamin D amount is about 400 iu, so this just seems so high.

Is there anything else I should add besides the zinc and multi?

I think you are all amazing and brave for working through this the way most of you have and I'm hoping we find something that works because my husband is feeling depressed and despair about all of this.  Last night's alternative did not work as we had hoped and he's trying it again tonight and he was so hopeful about it.  This vitamin regimen seems like the last realistic option that isn't completely toxic (like all the drugs that don't even work anyway).

By the way, I also love the thread someone started about the positive side of CH.  It's a great reminder that there is a positive side to everything.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by Brew on Oct 27th, 2012 at 11:07pm

Quote:
I know the typical Vitamin D amount is about 400 iu, so this just seems so high.

That's not typical for CH'ers. The vast majority of us are vitamin D deficient.

When I didn't get any response the first few weeks, I consulted with a very wise CH'er named Batch. He is more in tune with the science of this regimen. I went up to 20,000 iu per day with a loading dose of 50,000 iu once a week. Did that for almost 3 weeks before coming down to 15,000 iu for a couple of months, then finally down to my maintenance dose of 10,000 iu per day.

Keep in mind that there are some multiple sclerosis patients that have gotten some relief from their symptoms taking upwards of 100,000 iu per day. The dosages at which CH'ers are getting relief are far from toxic. The medical community is just now starting to get on board with the benefits of higher doses of vitamin D.

In answer to your last question, no - add zinc and a good multi-vitamin and he should be set to go. One last word of advice: Do not get discouraged if it doesn't work in a few days or even a few weeks. It took me over 2 months to get my 25(OH)D serum level into the therapeutic range. We all metabolize it at different rates.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by nhs on Oct 28th, 2012 at 1:41am

Brew wrote on Oct 27th, 2012 at 10:02pm:
If you crank up your D3 intake, the metabolism of it will require more calcium (and the other trace minerals). The process will take it from somewhere, and I'd rather it not be from my bones.


It is not correct that vitamin D requires more calcium. Vitamin D increases the absorption of calcium and other minerals from the diet.

The best source of vitamin D is the sun and to my knowledge it does not require extra calcium if you are sunbathing.  ;)

Regards Niels

Title: Re: Went shopping for vitamins...now what...guidance?
Post by shooky on Oct 28th, 2012 at 6:55am
It's best if we could base this not on guess work but on hard evidence.

Brew, say I test my Calcium regularly and see no change in the blood levels - does this mean, to your knowledge, that I'm doing OK? Or is the calcium supplementation is only needed when calcium levels drop as well?

I think too much of anything is bad, and I'm only taking 5000 iu of D3 daily. Being out of cycle (got around a year for experiments) and starting from 25(OH)D of 21.5ng/ml, I aim for no more than 50-60ng/ml at this point. And I do spend more time in the sun.


Title: Re: Went shopping for vitamins...now what...guidance?
Post by Brew on Oct 28th, 2012 at 10:05am
Perhaps Batch will chime in. It appears I'm out of my league.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by Zeitgeist on Oct 28th, 2012 at 4:06pm
In much literature, especially older, vitamin D is linked to hypercalcemia. This risk seems to be somewhat theoretical.  I for one has been taking between 5-15.000 IU every day for almost 16 months. And I've been taking a lot of blood tests.  None of them has shown the Ca-levels to exceed the normal range. 

See also this recent article
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There is a 40+ pages thread here where all this and more is thoroughly discussed.  It should be mandatory reading before starting another D3-thread. The only question not already answered there is "Will it work for me?".



Title: Re: Went shopping for vitamins...now what...guidance?
Post by shooky on Oct 28th, 2012 at 7:51pm
I read hundreds of ch.com threads in the past 2 month. Couldn't do the "123" thread.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by Kevin_M on Oct 28th, 2012 at 8:01pm
This thread lists the components of the regimen in the first post.


Anti-Inflammatory Regimen and Survey

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Title: Re: Went shopping for vitamins...now what...guidance?
Post by shooky on Oct 28th, 2012 at 8:34pm
This one I know. What I wasn't able to find is the answer to a simple question: if my blood level of calcium is good and steady through several consequent tests when using D3, do I still need to take the calcium?

Hypercalcemia doesn't worry me at all, that's not the point.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by Zeitgeist on Oct 29th, 2012 at 12:03am
Shooky,
The regimen consists of three parts. D3 (and co-factors), Fish oil and Calcium. As I understand, the main idea behind Ca is to control arterial pH. If Ca bothers you, why don't you skip it? And for amounts - there is no whitepaper truth on this.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by shooky on Oct 29th, 2012 at 8:14pm
Zeitgeist - it has been stated in these forums, several times, that high dozes of D3 with no calcium could lead to a situation where the calcium involved in the D3 metabolization will be taken from the bones. But no one seems to know whether this is true only in a case you're calcium deficient as it is or in any case.

Title: Re: Went shopping for vitamins...now what...guidance?
Post by Batch on Oct 30th, 2012 at 7:24am
Shooky,

Good question on why we need calcium supplements while taking the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3.  I'll do my best to answer it.

In order to understand the need for supplemental calcium, particularly when taking vitamin D3 at doses of 10,000 IU/day or more, and resulting serum concentrations of 25(OH)D (60 to 110 ng/mL) needed to control cluster headache, we first need to understand the word homeostasis and then calcium homeostasis...

Wikipedia has a good definition of homeostasis... "It's the property of a system that regulates its internal environment and tends to maintain a stable, relatively constant condition of properties such as temperature or pH.

It can be either an open or closed system. In simple terms, it's basically a process in which the body's internal environment is kept stable."

Did you ever wonder why or how, under normal conditions, we all maintain a body temperature of 98.6º F ?  The answer is body temperature is controlled by a complex set of homeostatic processes.

Serum pH, a topic I've discussed on several occasions as it appears cluster headaches are also sensitive to changes in serum pH, is another classic example where homeostasis comes into play.

Our normal reference range for arterial pH at 7.35 to 7.45 is tightly controlled by two overlapping homeostatic processes.

Changes in respiration rate and associated blood flow is the most immediate of these two processes as an increase respiration rate and tidal volume of breath can elevate arterial pH in as little as a few seconds up to a minute or two depending on the depth of hyperventilation. 

During hyperventilation, we blow off CO2 faster than our bodies generate it through normal metabolism...  As CO2 disassociates into carbonic acid when dissolved in water, excess CO2 means higher acid content (lower pH).

Accordingly, by intentionally hyperventilating, we blow off CO2 from the lungs and lower the acid content of arterial blood.  As this removes hydrogen ions from the blood, we elevate our arterial pH.  (If you didn't take chemistry...  pH is the negative logarithm of the hydrogen ion in solution.)

As the arterial pH goes up slightly above normal during hyperventilation, pH and CO2 sensors in the body sense this condition and signal the pH control center in the brain. It in turn, signals the arterioles and capillaries throughout the body to constrict, the heart to beat slower and the lungs to slow the rate of respiration...  It does all this to slow the loss of CO2 from the lungs and allow it to build back up into the normal reference range...

Soooo...  by intentionally hyperventilating we are biasing the body's homeostatic process that controls pH to stimulate vasoconstriction.  When you combine hyperventilation with oxygen therapy... you get a double or triple bang for the buck.  Oxygen therapy becomes more effective... and the abort times are three to four times shorter than oxygen therapy at a flow rate of 15 liters/minute...

The kidneys provide the second and slower overlapping method of controlling pH by withholding or passing hydrogen ions from the blood into the urine...  This is also why adding lemonade or another fruit juice to the calcium citrate helps prevent cluster headaches...  This combination forms a chemical buffer (absorbs hydrogen ions)... 

Likewise, drinking a baking soda tonic made from a half teaspoon of baking soda in a half glass of water helps to prevent cluster headaches because it's an ant-acid so neutralizes a low systemic pH (too much acid).

With these examples of homeostasis in mind, we can talk about calcium homeostasis...  The following diagrams illustrate the major players and flow:

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I've attached a paper that goes into far more detail on calcium homeostasis and vitamin D3...

Calcium is the fifth-most-abundant element in the earth's crust and oceans...  Not surprisingly, calcium is also the fifth-most-abundant element by mass in the human body.

99% of the calcium in our bodies is located in the bones and teeth.  The remaining 1% is divided between body cells and blood serum/plasma. 

The total calcium serum concentration is tightly controlled by calcium homeostasis between 2.2 and 2.6 mmol/liter.  Above or blow this normal reference range and we've got big problems... Nerves don't work properly nor do a lot of other biological processes that sustain life.

The following chart developed by Dr. Robert Heaney, MD, illustrates the changes in total serum calcium concentrations before and after ~130 days of treatments with either 7,000 or 12,000 IU/day vitamin D3.

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As you can see, the total serum concentration of calcium stayed within the normal reference range.  No supplemental calcium was used in this study.

As calcium homeostasis is an "open" system where there's an inflow and outflow of calcium, we need to maintain a calcium intake from all sources for adults at 1000 mg/day in order to maintain bone mineral density (healthy bones).

Under normal conditions with an ample dietary intake of calcium, calcium homeostasis maintains serum calcium ion concentrations by pulling calcium primarily from the gut.  It does this by using the final vitamin D3 metabolite and active hormone, 1,25(OH)2D3, (calcitriol) that was metabolized in the kidneys from 25(OH)D.

Calcium homeostasis is like the Honey Badger...  It doesn't give a crap about bee stings or cobra bites as long as it gets the honey and snake meat. 

Similarly, calcium homeostasis could care less about maintaining bone mineral density.  If there's insufficient intake of dietary and or supplemental calcium in the gut, it will use the same active hormonal form of vitamin D3, 1,25(OH)2D3, to pull calcium from the bones in order to maintain the proper total serum concentration of calcium.

So in answer to your question...  No. Supplemental calcium isn't necessary when using the anti-inflammatory regimen to prevent cluster headaches... as long as your dietary intake of calcium is around 1000 mg/day. 

Even if you had no calcium intake from any source, calcium homeostasis would maintain your total serum calcium concentration within the normal reference range... until the loss of bone mineral density resulted in bone fractures...

It's interesting to note that if your total serum calcium concentration rises to and above the upper limit of the normal reference range, the parathyroids slow production of PTH (parathyroid hormone), the kidneys react to the lower PTH by slowing the metabolism of 25(OH)D into 1,25(OH)2D3 and the thyroid increases production of calcitonin... 

This combination stops resorption of calcium from the bones and absorption of calcium from the gut until total serum concentration of calcium drops back into the normal reference range.

Sooo... if you're taking the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3...  I would look at the use of supplemental calcium ~500 mg/day as a prudent insurance policy to prevent BMD loss...  At less than 5 cents a day...  it's a good deal.

Finally...  if the discussion of thyroid, parathyroid, calcitonin, PTH and metabolizing 25(OH)D into 1,25(OH)2D3 has the clue bird hovering close over your head and you've connected a few of these dots...  you can see that problems with one or more of these organs or hormones can perturbate calcium homeostasis or cause it to cease functioning completely...  It can also make the anti-inflammatory regimen ineffective in preventing cluster headache.

If you've been taking the anti-inflammatory regimen for over a month without a favorable response and you think you may have one or more of the above comorbidities...  you need to see a competent endocrinologist... not a  neurologist.

Take care and hope this answered your question.

V/R, Batch

Calcium_Homeostasis.pdf (Attachment deleted)

Title: Re: Went shopping for vitamins...now what...guidance?
Post by nhs on Oct 30th, 2012 at 8:33am
Hi

The Vitamin D Council does not have a calcium supplementation recommendation. Vitamin D intake at our recommendation (5,000 IU/day except when sunbathing) may reduce calcium requirements.

In vitamin D deficiency, calcium absorption cannot be increased enough to satisfy the body’s calcium needs. Consequently, PTH production by the parathyroid glands is increased and calcium is mobilized from the skeleton to maintain normal serum calcium levels—a condition known as secondary hyperparathyroidism. Although it has long been known that severe vitamin D deficiency has serious consequences for bone health, recent research suggests that less obvious states of vitamin D deficiency are common and increase the risk of osteoporosis and other health problems.

So my point is that most people don't need extra calcium when taking vitamin D, because vitamin D increase the absorbtion from the diet. People with vitamin D deficiency needs more calcium (1000 mg per day), but less is needed if your vitamin-D level is in the optimal range.

Niels

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