Length of Vit D3 protocol?

[glo]

Hello

My husband seems to have benefited from the Vitamin/Anti-inflammatory regimen.  He went from headaches every 2 hours to now only shadow headaches.  He is also on Depakote, but that was after improvement was already noted by adding D3.   I'm sorry if this has been explained before but we have two questions:

1. Does he have to take all the vitamins/minerals at same time?

2. How long does he stay on this regimen once he is headache free?  

3. If he goes off the entire regimen, does he continue with D3?

thank you SOO much, we were desperate.  6 months into his episode, multiple standard pharma treatments and this seems to be the only thing that worked.

 

 

[xxx]

Hey Glo,

Thank you for the feedback and great news your husband is responding well to the anti-inflammatory regimen.   After 24 years with CH, chronic since 2004, I know the wonderful feeling the first time you wake up and realize you haven't had a CH in 24 hours...  I've been CH pain free since I developed and started this regimen in October of 2010.  The best course of action at this point is for your husband to stay on the anti-inflammatory regimen.  A few days of a vitamin D3 loading dose of 50,000 IU/day vitamin D3 should take care of the shadows.  After that, a vitamin D3 maintenance dose of 10,000 IU/day plus all the cofactors should keep him CH pain free. 

I'm not a fan of psychotropic drugs like Depakote, a.k.a., "Dopeycoat" as they have little efficacy in preventing CH and only cause other adverse side effects so would discontinue.  Have your husband discuss this decision with his PCP/neurologist and to ask for the lab test of his serum 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL (75 to 250 nmol/L).  As CHers, we need to maintain a 25(OH)D serum concentration around 80 ng/mL (200 nmol/L) or higher in order to remain CH pain free.  Doing this will get two birds with one stone...  On one hand, your husband will know the therapeutic level of 25(OH)D that keeps him CH pain free and on the other hand, it will help educate his doctor about the benefits of taking vitamin D3 and the cofactors as an effective CH preventative.

Great questions.

1.  It's best to take this regimen (all of it) with the largest meal of the day.  This helps vitamin D3 absorption and lowers the probability of GI tract disturbances.

2 and 3.  The anti-inflammatory regimen is not a cure for CH, but rather a way of life (a long and healthy way of life) that should be taken daily, until the body reaches room temperature, to prevent a return of CH and many other medical conditions.  At roughly 50 cents a day, I look at this regimen as the most effective, safest, and least expensive form of health insurance we can buy.  On that note, you should be taking this regimen too!.  If your husband will have a long and healthy life while taking this regimen, I'm guessing you want to be right there with him...

I started my wife on this regimen in December of 2010.  She was a 20 year episodic migraineur at the time with migraine headaches hitting like clockwork for 3 to 5 days a month.  She hasn't had a migraine headache since.  She is now 82, in great health (she takes no Rx medications), has more energy than I've seen in over 20 years and she runs my backside off.

This regimen has so many health benefits I have my entire family taking it and none of them have CH or migraines.  That also includes two grand kids, a grand niece and grand nephew who have been bathed in maternal vitamin D3 since conception and while breast feeding (their mothers have been taking this regimen with 10,000 IU/day vitamin D3 for many years).  After that, these incredibly healthy kids take 50 IU of vitamin D3 per pound of body weight per day.  They're all young Einsteins.

If your husband has been on this regimen for at least 30 days, now is also a good time for your him to take the survey for CHers taking the anti-inflammatory regimen to prevent their CH.  To start this survey, click on the following link:
http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

This online survey of CHers taking the anti-inflammatory regimen has been running continuously since 11 December of 2011 so we are rapidly approaching seven full years of data collection.   As of last week there were 283 completed surveys. The near term goal is 300 completed and submitted surveys.  I will be using this survey data in early 2019 to publish the results. A survey population of 300 adds strength to reported results. The serum 25(OH)D data is also very important as it provides the clinical data and medical evidence neurologists, headache specialists and GPs need in order to suggest this very effective and safe CH preventative treatment protocol to their CH and migraine patients.

Take care and please keep us posted.

V/R, Batch

Edited November 30, 2018 by Batch

[glo]

Thank you again, you are a lifesaver.  He's not fully 30 days yet but we will definitely fill the survey out then.

One more question I forgot to ask, he seems to have a new onset of some muscle cramping all over.  I feel like I read something about this but do you have advice if it may be one of the mineral/vitamins?

 

 

[xxx]

Glo,

Muscle cramps (not tummy/GI tract disturbances) are usually an indication of not enough magnesium.  Vitamin D3 at the doses we take consumes magnesium.  Without adequate magnesium supplements, we end up with a poor calcium - magnesium balance with too little magnesium.  Our muscles need calcium to contract and magnesium to relax... Without a proper calcium - magnesium balance, muscle cramps are likely.  Have your husband try doubling the magnesium with 400 mg in the morning with breakfast and 400 mg with the evening meal.  Splitting the magnesium dose like this helps prevent osmotic diarrhea. 

Obviously, if the muscle cramps get worse, lay off the magnesium for a couple days to see what happens.

Take care and please keep us posted.

V/R, Batch

[CHMom]

Just wanted to chime in and say that I started the D3 regimen this past Saturday, after seeing a few posts about it on this forum. Thank you @glo for starting this thread and thank you @Batch for sharing your advice, experience and expertise with this regimen.

I'm still getting cluster headaches, but then again, I'm also only 3 days in, and I also forgot to double down the first few days with a loading dose of 50,000 IUs of D3. @Batch Do you think I could start the loading dose tomorrow, and if so, should I take all the D3 at once, or break it up over the course of 2-3 meals during the day? 

I've suffered from episodic cluster headaches for 11 years now. One of my CH cycles just started about 10 days ago, and I'm at the point where I need to investigate alternative therapies. I've used both Verapamil and prednisone in the past to end cycles, but both have lost their effectiveness. The last time I tried using prednisone, early last March (2018), the headaches stopped while I was on the prednisone, but as soon as that course of treatment ended, the headaches came right back. This last cycle was my worst ever, lasting 4 1/2 months, and toward the end of the cycle, the headaches were so painful I thought I would die. My neurologist recommended Topomax, but I remain reluctant to try it due to the many side effects. I can't afford to lose any weight or impair my cognitive functions. 

I regret not having done the preliminary lab work for the D3 regimen, but after my last cycle and after 11 years of this, I am so desperate for a viable treatment to stop the cycle I'm currently in (and hopefully end them permanently) that I jumped at the chance to try the D3 regimen when I first read about it. Other reasons I started the regimen without doing the lab work first: 

1. It takes too long to get an appointment with both my PCP and my neurologist. I didn't want to wait 2 - 4 weeks for an appointment.
2. Then I'd have to wait another week to get lab work done. Then another week to get results.
3. My healthcare providers seem very reluctant to request any kind of lab or diagnostic work.
4. My neurologist is really pushing Topamax.
5. I just felt like I needed to take matters into my own hands.

Thanks for listening, and thanks @Batchfor your advice and answers to my questions. 

 

[muggle]

I also am going to chime in here - I am episodic (15 years now) and started my cycle on November 3rd, was getting up to 6 attacks a day. I began the Vitamin D3 therapy on the 27th and my headaches stopped on the 30th. Coincidence? Maybe. But I had tried everything - Gabapentin, Prednisone, Verapamil - none of them worked and they all produced terrible side effects. I am still experiencing slight shadows here and there, but haven't had a full blown attack since the 30th. I fully intend on continuing this regimen forever. It is helpful to get your lab work done before beginning this just to know where you are - my Vitamin D levels were at 35 which is considered "normal," but not if you suffer from CH. I didn't do the loading doses, just started at the maintenance dose. I may up the D3 to see if it completely wipes out the shadows, but so far they are very light and only pop up here and there, usually because of strong smells (perfumes, etc.) As far as your doctors go, don't do anything you're not comfortable with. You know what's best for you. I've told many doctors "no" to many different medications they've tried to push on me. If there's one thing I've learned through this, it's that most of them really don't know that much about this condition. This board has been far more helpful than any doctor I've ever seen. Good luck and I hope you get results soon!

[xxx]

Hey CHMom and Muggle,

Welcome to the anti-inflammatory regimen CH preventative treatment protocol with vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors.  You've both made a very good decision starting this safe, effective and healthy regimen.  The following chart from the online survey of 283 CHers taking this regimen illustrates the reported time to respond by day.  As you can see, the 80% of CHers who respond to this regimen do so within the first 30 days and the majority of them respond in the first two weeks.

Muggle, you're doing great as an early bird responding in three days.  Given the results obtained from the online survey of 283 CHers taking this regimen, the cessation of your CH attacks is not a coincident.  CHMom, this chart tells you what to expect.

The accelerated 12-Day vitamin D3 loading schedule at 50,000 IU/day for 12 days is still a good idea for both of you for several reasons.  The typical CHer needs a total oral loading dose of 600,000 IU of vitamin D3.  This can be taken in a single oral dose or spread out over 12 days to two weeks.  There are several vitamin D3 studies using a single oral loading dose this high resulting in a 25(OH)D response of 60 ng/mL (150 nmol/L) on top of the baseline (starting) 25(OH)D serum concentration with no adverse events.  

Both molecular vitamin D3 and its first metabolite, 25(OH)D3 enter cells throughout the body to initiate genetic expression.  When they reach neurons in the trigeminal ganglia, they flip a genetic switch that down-regulates, (suppresses) the expression of calcitonin gene-related peptide (CGRP) and Substance P (SP).  These are the two neuropeptides headache experts think are responsible for cluster and migraine headaches.  This loading schedule builds 25(OH)D reserves into the therapeutic range around 80 ng/mL in 12 days to act as a reserve in preventing CH.  A vitamin D3 intake of 10,000 IU/day works to prevent CH as long as its taken daily but at this dose, it can take two to three months to build 25(OH)D serum concentration reserves to 80 ng/mL.  If you miss a day or two, the CH preventative effect drops as there are no reserves to cover the missed doses.  This loading schedule also helps eliminate shadows.

A lab test for 25(OH)D before start of regimen is nice to have for several reasons of which the most important is establishing a link between the frequency of your CH and a low 25(OH)D serum concentration in your neurlogist's mind.  When your neurologist sees the results of your second 25(OH)D 25(OH)D lab test taken 30 days after start of regimen and you're either CH pain free or CH frequency is greatly reduced, it connects the dots...  Low 25(OH)D = increased CH frequency and 25(OH)D around 80 ng/mL (200 nmol/L) = complete cessation of CH or a significant reduction in CH frequency.  That's the "A-Ha" moment where the neurologists sees the light... that there's an inverse relationship between the frequency of CH and 25(OH)D serum concentration.  

In simple logical terms, IF A THEN B.  This is the clinical evidence that tends to make neurologists a believer in this regimen.  When that happens, you've got a neurologist who is willing to work with you while taking this regimen instead of prescribing pharmaceutical preventatives that don't work as well and which carry onerous side effects.

This is also where the lab tests for serum calcium and PTH are important.  Without these two lab tests, too many physicians will pitch a hissy over a 25(OH)D serum concentration around 80 ng/mL (200 nmol/L) saying you're "toxic."   In reality, the lab test for 25(OH)D is a poor indicator of vitamin D3 intoxication/toxicity.  Only the lab test for serum calcium should be used in this case.  As long as serum calcium remains within its normal reference range, there is NO VITAMIN D3 TOXICITY a.k.a., hypercalcemia (too much serum calcium).   Serum parathyroid hormone (PTH) concentration is also a good biomarker to use while taking this regimen.   When 25(OH)D is low, PTH tends to be near the high end of its normal reference range.  With a 25(OH)D up around 80 ng/mL or higher, PTH tends to be near the low end of its normal reference range.

For reference, I've run my serum 25(OH)D up to 180 ng/mL (450 nmol/L), but my serum calcium remained within its normal reference range and my PTH was low as expected.  I gave my PCP a copy of the anti-inflammatory regimen treatment protocol so he knew what to expect...  Accordingly he had no problem with my 25(OH)D serum concentration being this high.

Take care and please keep us posted.

V/R, Batch.

 

Edited December 5, 2018 by Batch

[CHMom]

@muggle - I am so happy to hear of the success you're having with the D3 regimen, and thanks for the encouraging words!

@Batch - Thanks for your recommendations and for the additional explanation. The biochemistry behind this regimen is fascinating, and the results chart is especially helpful in giving me some idea of what to expect and when. I started the loading dose today and am feeling really optimistic about this course of action. I don't think it's a coincidence that my episodic CHs start during the time of year when the days are shortest with the least amount of sun (and therefore D3 in my body, and since I'm a 40-something woman, I probably have even less D3), so I'm really hopeful this regimen will help. 

Thanks again everyone