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CoryAnn

New Med

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Happy Snow Day to me!!!  Just wondering if any of you ever heard of the med: emgality?  Very experience but thankfully free for a year and good insurance....His neuro prescribed it and said it is suppose to prevent them......he seemed very excited about it.  Has any one heard of tried this?  

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That is a calcitonin gene-related peptide receptor antagonists for the preventive treatment of migraine, I was going to do a clinical trial for clusters  in my area but it was canceled. 

I think I remember reading that it looked promising for episodic but not so much for chronic clusters. 

I am sure someone else will chime in with better information for you. 

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Well I just researched a bit more on this site....and it seems it has been talked about already...darn I thought I was on to something....for my hubby...who has been great!!  I attribute that to the D3 though....:) I just hoped that this was a break through...and I am very concerned especially because it is a new drug...

 

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Hey CoryAnn,

Your husband is on the right track taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the conutrients to control his CH.  The success rate for this regimen based on the results from the online survey of 257 CHers who started this regimen to control their CH over the last 8 years follows.  80% of CHers starting this regimen experience a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week in the first 30 days.  The response rate improves over time as some CHers take up to 3 months to respond to this regimen.   50% of CHers who start this regimen experience a complete cessation of their CH in the first 30 days.  This regimen works for both episodic and chronic CHers although episodic CHers tend to have a slightly higher response rate.

The following chart illustrates the response rate by day after start of regimen by both episodic and chronic CHers reporting favorable responses to this regimen.

LvzDyFv.jpg

The following two graphs illustrate the normal distribution of 25(OH)D lab test results taken before start of regimen to establish a baseline and after at least 30 days on this vitamin D3 regimen.

gjZTD2t.jpg4rNVPRE.jpg

This second chart also illustrates the cumulative probability curve (blue line) for CHers responding to this regimen by 25(OH)D serum concentration. What this blue S-shaped sigmoid curve is telling us is roughly a third of CHers taking this regimen need their 25(OH)D serum concentration between 100 ng/mL and 150 ng/mL in order to respond with a significant reduction in CH frequency or a CH pain free response.  25(OH)D serum concentrations this high require average vitamin D3 maintenance doses from 15,000 IU/day up to 35,000 IU/day.

Most PCP/GP and neurologists get concerned when they see a patient's 25(OH)D serum concentrations above 100 ng/mL.  Accordingly it's very important to see your PCP/GP or neurologist to discuss this regimen and to get lab tests of your serum 25(OH)D, calcium and parathyroid hormone (PTH) after 30 days on this regimen or 30 days after taking a higher vitamin D3 maintenance dose between 15,000 IU/day and 35,000 IU/day.  As long as the serum calcium concentration remains within it's normal reference range, there's no hypercalcemia (too much serum calcium) a.k.a., vitamin D3 intoxication/toxicity.

For reference, over the last three years, I've maintained my serum 25(OH)D between 120 ng/mL and 180 ng/mL to remain CH pain free.  My PCP is OK with my 25(OH)D serum concentrations this high as long as my serum calcium remains within its normal reference range... and it has.

I'd also like to point out this is a very safe and healthy regimen.  I started providing outreach information on the benefits of this regimen in December of 2010 over on CH.com.  In all that time there have been no reports of vitamin D3 toxicity or adverse events that required medical treatment. 

This regimen is so safe, I have my entire family taking it.  The youngest include a granddaughter, grandson and a grandniece.  These three kids have been bathed in maternal vitamin D3 since conception and through breast feeding as their mothers have been taking the anti-inflammatory regimen since 2012. 

All three pregnancies and full-term deliveries were flawless.  Moreover, these are the healthiest kids I've ever seen.  They don't get sick...  They also have a phenomenal rate of physical and mental development.  My daughter and husband are on assignment in Germany so Fred, a.k.a., Winefred, the oldest of the three grand kids, is now six and attending Kindergarten in Germany...  speaking flawless Hochdeutsch (German).  It's difficult to get her to speak in English during FaceTime calls...

Take care and please keep us posted.

V/R, Batch

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Hi Batch,

thank you for showing us these interesting plots and for the explanation of the related calcium serum. So, how often do you check your calcium and D3 level if you don't enhance the dosage?

Cheers,

M

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Hey M,

Great question.  As long as I'm at a stable vitamin D3 dose, I'll have labs for 25(OH)D, calcium and PTH done once a year a week prior to my annual physical so my PCP and I can discuss the results.  I usually have all the other labs needed for my annual physical done at the same time.

If I've needed to raise or change the vitamin D3 dose to counter problems associated with an allergic reaction or surgery, I usually wait at least a month following the dose change then go in for the same three labs.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

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Hey Batch,

Thanks a lot for your answer! I've also found the advice that the measurements/blood test should be around springtime. Also that taking Vit. K together with Vit. D would prevend the bones from losing calcium so one need not worry that much about hypercalcemia. Did you know? 

Cheers,

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