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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 198585 times)
DebDraws
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #900 - May 3rd, 2022 at 10:37am
 
In my latest bout that started about 2 weeks ago, I started following the updated D3 regimen last week.  It definitely was reducing my nighttime headaches from 4-5 per night to 2 mild ones.  My doctor then did start me on a prednisone taper soon after and that fully knocked them out. Iím about halfway through the prednisone treatment and still taking the D3 regimen but have tapered D3 back down to maintenance dose.  Iím curious what will happen when the prednisone taper is finished. I understand that some people get a rebound cycle.

I also wanted to report that the GammaCore worked pretty well to abort nighttime headaches in a couple of minutes. However, I did not see that it was a good preventative.

Just sharing my experience in case it might help somebody else.

The most frustrating thing is the long waiting list to see neurologists in our area, especially those with headache expertise.  Angry Angry
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #901 - May 3rd, 2022 at 3:01pm
 
Hey DebDraws,

Thank you for the update on your experience with the anti-inflammatory regimen CH and MH preventative treatment protocol.

From your description of the decrease in frequency and intensity of your CH after starting vitamin D3 and cofactors, it appears to be working as expected.† †The complete cessation of your CH following a start of prednisone taper is also very interesting and to be expected.

Both vitamin D3 and prednisone are anti-inflammatory mediators.† Of the two, prednisone is the more potent anti-inflammatory mediator, but it is also a double edged sword.† On one hand prednisone "works" to decrease inflammation, but on the other hand, it is only a temporary "fix" as it carries problems with continued/long term use, which is why it's prescribed in a short-term tapering dose.

That the prednisone taper stopped your CH is a clear indication your CH are associated with inflammation from one or more sources.† What will happen when the pred taper is complete will depend on your 25(OH)D3 serum concentration and its capacity to control inflammation.† †

Vitamin D3 and the cofactors have the capacity to reduce the expression of Calcitonin Gene-Related Peptide (CGRP), other neuropeptides like Substance P (SP), Vasoactive Intestinal Peptide (VIP) and Pituitary Adenylate Cyclase-Activating Peptide (PACAP).† Vitamin D3 also down-regulates a cocktail of immune system inflammatory mediators that include histamine, cytokines, chemokines and growth factors released by the immune system's Mast Cells as illustrated in the following graphic.

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After more than 11 years starting thousands of CHers on this treatment protocol, I'm of the opinion that as long as you continue following it with a vitamin D3 maintenance dose of at least 10,000 IU/day plus the cofactors, the odds are very high you will have your CH under control and experience CH pain free bliss.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: May 3rd, 2022 at 3:05pm by Batch »  

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DebDraws
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #902 - May 3rd, 2022 at 3:31pm
 
Batch, I really appreciate your response and it somewhat confirms what I suspected myself. This part especially got my attention:

That the prednisone taper stopped your CH is a clear indication your CH are associated with inflammation from one or more sources.  What will happen when the pred taper is complete will depend on your 25(OH)D3 serum concentration and its capacity to control inflammation.   

It was just a coincidence that I had my D3 levels tested late last week as part of annual thyroid checkup. Iím still in what you would consider the moderate range. So Iím not entirely sure Iím gonna back it all the way down to maintenance just yet. Maybe somewhere between the 50 and 10 levels. Do you have any thoughts on that ?

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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #903 - May 3rd, 2022 at 3:44pm
 
DebDraws,

Thanks for giving your feedback on the gammaCore. Youíre absolutely right, itís not much of a preventative, but it works very well, for me, as an abortive.

It also has the advantage of being very portable and discreet, and opens up your options regarding a social life.

Some sufferers often reduce or stop their socializing because they donít want people to see them during an attack. GammaCore is a good option in social settings, and indeed, in work settings too.

Stick with the D3 Regimen, and, like me, your gammaCore device should become your back-up abortive option.

Peter.

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DebDraws
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #904 - May 3rd, 2022 at 4:37pm
 
Thank you Peter.† I agree 100% with your thoughts on the GammaCore.† Itís great that itís very portable and I would likely not need it that often. But when you do need it, itíll be great to have it right there to grab and use.† Itís amazing the new bag of tricks that evolve over time as we learn more about cluster headaches.

This is always been such a wonderful community to provide help whenever folks find themselves seized by the beast.  To me, the D3 regime is a real game changer for many.
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« Last Edit: May 3rd, 2022 at 4:38pm by DebDraws »  
 
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The Thinker
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #905 - May 25th, 2022 at 10:56pm
 
Hello all.

If you've followed the Vitamin D Anti Inflammatory Regimen you may find the most recent Podcast with Pete Bactcheller at the link below.

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In this Podcast we discuss Vitamin D therapy as well as mAbs, monoclonal antibody therapies such as Emgality.

We discuss what mAbs are and what synergies they have with the Vitamin D Anti Inflammatory Regimen in respect of CGRP, calcitonin gene related peptide.

I take the opportunity to ask Pete lots of other questions in regards these therapies and hope the information is of value to you.
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Radar63
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey -
Reply #906 - Jun 24th, 2022 at 7:09am
 
Hi all,
I live in the UK and had some issues obtaining the soluble 50000iu capsules.† I have now found a more reliable source which is GreenVits.eu .† I am not an employee or affliated with this company but they are now my source of the Bio Innovations 50000 iu soluble capsules.
Kind regards
Ian
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« Last Edit: Jun 24th, 2022 at 7:10am by Radar63 »  
 
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neuropath
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #907 - Jul 20th, 2022 at 3:40am
 
Having previously attempted the D3 regime twice unsuccessfully, here one way that may work for ppl that have not achieved relief when trying. My first two attempts failed (I am sure) because I was simultaneously on a very high dosage of Verapamil. With large loading doses I quickly hit an interaction point with Verapamil that made my attacks infinitely worse in frequency and severity until the D3 level had declined again.

I am now on my third try, having come off Verapamil completely and started "piano" with the D3 dosage. 3,000 each after breakfast, lunch and dinner and 2,000 before sleep, total 10-11k per day. Day 3 and I have had my first 8 hour uninterrupted sleep in years and no pain when waking up. Too early to open champagne but seemingly working since I am only on D3 and pain-free for the first time in years.

For those who don't see relief with high loading doses, possibly an alternative way to try. Convinced that D3 and Verapamil are a combo to avoid though.

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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #908 - Jul 22nd, 2022 at 3:32pm
 
Hey Neuropath,

Great post!† It's good to hear you've finally had a CH pain free response to vitamin D3 therapy.†

After 11 years of providing information outreach on the benefits of following the anti-inflammatory regimen treatment protocol to control and prevent CH to thousands of CHers and reading their feedback comments, there are a few reasons why some CHers don't respond to vitamin D3 therapy or loading doses of 50,000 IU/day.

The first and most common reason CHers don't respond to this treatment protocol is the 25(OH)D3 response simply isn't high enough.† While 80% of CHers respond to the basic protocol taking 10,000 IU/day vitamin D3 and all the cofactors with a significant reduction in CH frequency or a complete cessation of CH symptoms at an average 25(OH)D3 serum concentration of 80 ng/mL (200 nmol/L), some CHers require a 25(OH)D3 serum concentration much higher over 100 ng/mL (250 nmol/L).† This is why the second set of lab assays for 25(OH)D3. calcium and PTH are so important.

The following chart illustrates the normal distribution curves for the baseline assays for 25(OH)D3 before start of treatment and† after ≥ 30 days of treatment for 313 CHers starting this treatment protocol.

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Here, under the green 25(OH)D3 response curve, you can see where some CHers required a 25(OH)D3 serum concentration up to 150 ng/mL (375 nmol/L) in order to achieve a significant reduction in CH frequency or a complete cessation of CH symptoms.

The corrective action in this case is simple.† If you're still getting hit after 30 days of treatment and the results from your 30 day assays of 25(OH)D3, calcium and PTH indicate calcium is within its normal reference range, load vitamin D3 at 50,000 IU/day for four days and increase the maintenance dose to 15,000 IU/day.† Four days of loading should increase 25(OH)D3 serum concentration by 20 ng/mL (50 nmol/L) and this maintenance dose should keep you at this level.

The second most common reason some CHer don't respond is they didn't take all of the cofactors.† These cofactors are essential for effective vitamin D3 hydroxylation/metabolism to 25(OH)D3 and on to 1,25(OH)2D3.† The first of these two enzymatic processes take place in the liver where the enzyme 25-Hydroxylase adds a hydroxyl group [OH] to the vitamin D3 molecule at the 25th position resulting in 25(OH)D3.† As only a small fraction of serum vitamin D3 is hydroxylated during each pass through the liver, it can take upwards of two weeks to completely hydroxylate each dose of vitamin D3 to 25(OH)D3

The second hydroxylation takes place in the kidneys where† the enzyme 1-alpha-Hydroxylase adds a second hydroxyl group to the 1st position on the 25(OH)D3 molecule to create 1,25(OH)2D3, the genetically active metabolite.† It's this serum bound vitamin D3 metabolite that's responsible for pulling calcium from the gut to maintain calcium serum concentrations in the bloodstream in a very narrow range and also to build bone mineral density.†

These same two enzymatic processes also take place at the cellular level in neurons and glia within the trigeminal ganglia.† It's here where vitamin D3 does its magic in preventing CH. The vitamin D3 cofactors: magnesium, zinc, boron, vitamin A and vitamin K2 must also be present at the cellular level to support the expression/synthesis of the enzymes needed to hydroxylate vitamin D3 to its genetically active metabolite.† Without these enzymes, this process cannot occur and vitamin D3 will be ineffective in preventing CH.

The corrective action is review the cofactors and make sure you're taking all of them.

Another less common reason why some CHers don't respond to this treatment protocol even when they're taking all the cofactors is an enzyme imbalance caused when the cofactors are not taken up sufficiently by neurons and glia within the trigeminal ganglia. This happens with roughly 2% of CHers starting this treatment protocol, but it's temporary and lasts for a week to 10 days then usually clears as sufficient cofactors build at the cellular level..

When this condition happens, the genes responsible for expressing/synthesizing one or both the two essential enzymes 25-Hydroxylase and 1-alpha-Hydroxylade, cannot synthesize enough of them.† As vitamin D3 and 25(OH)D3 are still entering the neurons and glia and they're not being hydroxylated to 1,25(OH)2D3, a third enzyme, 24-hydoroxylase, comes into play to prevent too much vitamin D3 and 25(OH)D3 from accumulating.† 24-Hydroxylase is part of the body's vitamin D3 self regulating/protection system that prevents too much vitamin D3 from accumulating.†

Once vitamin D3 is hydroxylated at the 24th position to make 24(OH)D3 and 25(OH)D3 is hydroxylated at the 24th postion to make 24,25(OH)2D3, both of these two metabolites are broken down rapidly and eliminated from the cell. Any 1,25(OH)2D3 is also hydroxylated at the 24th position to make 1,24,25(OH)3D2 and it is also broken down and eliminated.†

When this happens, there is insufficient 1,25(OH)2D3 to initiate the genetic expression that down-regulates the synthesis of Calcitonin Gene-Related Peptide (CGRP), Substance P (SP), Vasoactive Intestinal Peptide (VIP) and Pituitary Adenylate Cyclase-Activating Peptide (PACAP).† These four neuropeptides are responsible for triggering the neurogenic inflammation and pain we know as CH.

The corrective action here is to stop taking vitamin D3 for a week, but continue taking all the cofactors.† You can also reduce the vitmin D3 intake to less than 10,000 IU/day and keep taking all the cofactors.† Both options allow for the buildup of the needed enzymes to meet the demands of hydroxylating vitamin D3 to 1,25(OH)2D3.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #909 - Jul 25th, 2022 at 2:23am
 
Batch!

It has been many years since I've needed to be here. I have been on the D3 regimen for at least 5 years and everything was 5 x 5. Then last week I had my first big cluster hit in 5 years. I ran out of the B-100 and didn't have any for 3 days, but continued to take all the other cofactors and once the B-100 arrived, I added it back in. On the day I started the B-100 again is when I got that big hit. Luckily I still keep O2 in the closet just in case.

I guess the question I am asking is, can that small lapse in the vitamin B cause a relapse, or are they just burning through? Are there previous cases of the D3 regimen losing its efficacy after having worked for so long?

Thanks,
Eric
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #910 - Aug 5th, 2022 at 6:55pm
 
Hey Eric,

Thanks for the update and sorry for the delay in responding.† I spent the month of June in Pelican, AK fishing for King lmon and Halibut.† The payback in honey-do for being gone from home that long has been onerous.

What you're experiencing is actually quite common.† The main reason CHers on the anti-inflammatory regimen fall out of remission is an immune system response to allergens.† I've had it happen to me with a 25(OH)D3 serum concentration of 150 ng/mL (375 nmol/L).† This is where the immune system's Mast Cells degranulate (spill their contents of inflammatory mediators) as illustrated in the following graphic.† As you can see, histamine is the leading culprit.

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Histamine to a CHer is like Kryptonite to Superman.† None of the interventions work and that includes vitamin D3 if the allergen load is high.† That makes an antihistamine the first order of business.

In the past I've suggested a first-generation antihistamine like Benadryl (Diphenhydramine HCL) as it crosses the blood brain Barrier to block histamine H1 receptors throughout the brain and trigeminal ganglia.† Blocking the histamine H1 receptors helps down-regulate expression of the four primary neuropeptides (CGRP, SP, VIP and PACAP) that are responsible for the neurogenic inflammation and pain we know as CH.† An effective antihistamine enables vitamin D3 to do its thing through genetic expression to control and prevent CH.

As Benadryl can make us drowsy, in March, I started suggesting a clutch of supplements with antihistamine properties I call the Antihistamine Full Monty as an alternative.† Rationale - Just as effective as Benadryl, but with none of drowsy side effects.† The Antihistamine Full Monty is taken on top of the basic anti-inflammatory regimen shown below.

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The Antihistamine Full Monty includes 3 grams/day each as a loading dose of Turmeric (Curcumin), Resveratrol, Quercetin and Omega-3 Fish Oil.† It also includes 5mg/day Melatonin taken at bedtime and 8 grams/day Vitamin C.†

I buy Vitamin C (Ascorbic Acid) from amazon in 1 Kg bags and stir 2 level teaspoon measures in 8 to 12 oz of water and take sips all day until it's gone by bedtime.† It tastes like unsweetened lemonade and the bulk powdered form is the least expensive form of Vitamin C.† The rationale for this much Vitamin C is it has a serum half-life of 30 minutes as our kidneys filter it rapidly.† Accordingly, taking sips of this Vitamin C solution throughout the day helps maintain a constant serum concentration.

Most of us taking the Antihistamine Full Monty stay at the loading dose of the first four supplements for a week to 10 days or until a CH pain free response then taper the dose to two grams/day for a week then down to one gram/day.† I've been on the Antihistamine Full Monty at one gram/day for the first four supplements since April.† Dealer's choice on the Melatonin but I still take 8 grams/day vitamin C.† Linus Pauling took 18 grams/day vitamin c and lived to 93.† Watch his video on† Preventing Illnesses and Diseases with Vitamin C.

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If there has been no response to the Antihistamine Full Monty, there are two additional supplements you can try. 200 mcg/day Selenium and 1000 mg/day N-Acetyl Systeine (NAC).† Selenium† plays critical roles in reproduction, thyroid hormone metabolism, DNA synthesis, as well as protection from oxidative damage and infection.† Selenium is also one of the Cofactors in the Coimbra protocol for MS.† † NAC has many benefits but the big three for CHers are:† antioxidant, antiviral and anti[inflammatory.

Hope all this helps.† Take care and please keep us posted.

V/R, Batch


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« Last Edit: Aug 5th, 2022 at 6:56pm by Batch »  

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