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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › Anti-Inflammatory Vitamin D3 Regimen and Survey
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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 242243 times)
slacker032
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Re: Anti-Inflammatory Regimen and Survey
Reply #125 - Sep 3rd, 2013 at 8:47pm  
Choppo wrote on Sep 3rd, 2013 at 8:44pm:
Hi guys,
this is incredibly rude i know, but i'm off to the the GP in literally 2hrs time and would love to know exactly what i should ask for in a blood test. Really, really sorry to barge in and request this info without a formal introduction!! I'll introduce myself this evening once back from the GP/Finished work. Have suffered this for ever, 3 yearly cycles (was a member here 3 years ago, but must have been deleted). Currently on 6th day of Prednisone and just tapered from 50mg to 25mg. Guess what - instant pain!! This happened last time i tried. Anyway, if i promise to introduce myself properly this evening, could some one pleeeeeaaaseee spell out exactly what i should ask for in a blood test this afternoon?? Whilst i am waiting for the results, i can read up on the regime and get vitamins ready. Posting from Sydney Australia. G'day!
Steve


The test is for 25-hydroxy vitamin D or 25(OH)D.
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Re: Anti-Inflammatory Regimen and Survey
Reply #126 - Sep 3rd, 2013 at 8:59pm  
Perfect. Many thanks. Thought there were several things i should get a base line on, but if it's jsut that, then easy done - thanks again!
Will post up tonight!
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Re: Anti-Inflammatory Regimen and Survey
Reply #127 - Sep 15th, 2013 at 6:22pm  
Bumping this as I steered a lot of people at the conference this way! Wink

Joe
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Re: Anti-Inflammatory Regimen and Survey
Reply #128 - Sep 30th, 2013 at 8:57pm  
How I wanted this thing to work quickly. Read about 80% success rate and figured I had to try it. I got D3 tested 2 weeks ago and had it at a low 25 level, so I figured chances were good. I started popping 10 000 IU of D3, but so far nothing - if anything the hits have become somewhat worse. Definitely not working for me in just a few days or a week. I think I'll up the dosage, hopefully that gets me to a high enough level.
I'm starting testosterone again, that at least seems to be working after some time, though I'd obviously prefer D3 as a safer alternative. Hopefully testosterone and D3 mix together with no issues.
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Re: Anti-Inflammatory Regimen and Survey
Reply #129 - Sep 30th, 2013 at 10:47pm  
akage wrote on Sep 30th, 2013 at 8:57pm:
How I wanted this thing to work quickly. Read about 80% success rate and figured I had to try it. I got D3 tested 2 weeks ago and had it at a low 25 level, so I figured chances were good. I started popping 10 000 IU of D3, but so far nothing - if anything the hits have become somewhat worse. Definitely not working for me in just a few days or a week. I think I'll up the dosage, hopefully that gets me to a high enough level.
I'm starting testosterone again, that at least seems to be working after some time, though I'd obviously prefer D3 as a safer alternative. Hopefully testosterone and D3 mix together with no issues.

It took me 2 months before I got any consistent relief. And those first two months I was taking 20,000iu per day with a 50,000iu loading dose once a week. It just takes some of us longer.

Since I went pain free in May of 2012, I have not had another hit. I'm currently taking 10,000iu per day and my serum concentration remains around 70-75 ng/mL.

Stick with it.
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Batch
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Re: Anti-Inflammatory Regimen and Survey
Reply #130 - Oct 1st, 2013 at 3:43am  
Hey Akage,

It's been a while...  Are you taking the Omega-3 Fish Oil and all the vitamin D3 cofactors?

Given your starting 25(OH)D was 25 ng/mL, you can use a more aggressive vitamin D3 dosing schedule like Brew and many other CH'res have done... 

25,000 IU/day plus a 50,000 IU loading dose once a week on top of the daily dose.  You can stay on this schedule for a month then see your PCP for another 25(OH)D lab test.

Be sure to take the 400 mg/day magnesium, 1000 to 2000 mg/day Omega-3 Fish Oil and the rest of the vitamin D3 cofactors...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Oct 1st, 2013 at 3:44am by Batch »  
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Re: Anti-Inflammatory Regimen and Survey
Reply #131 - Oct 6th, 2013 at 7:24pm  
Batch, with the aggressive D3 dosing, wouldn't it make sense to up the co factors as well?
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Re: Anti-Inflammatory Regimen and Survey
Reply #132 - Oct 7th, 2013 at 4:26am  
Shooky,

Good question... and it sounds intuitive.  However, with the exception of vitamin D3, (we're way over the Recommended Dietary Allowance (RDA)) and the Omega-3 Fish Oil which doesn't have one, the rest of the supplements in the complete anti-inflammatory regimen are already at or near the RDA.  We're going to need some dedicated lab tests to find out if increasing any or all of the cofactors is needed when loading vitamin D3.

That said, in the RCT where 48 youths were given a single oral dose of 600,000 IU vitamin D3, they gained an average of 60 ng/mL in 3 days.  PTH dropped, Ca and P increased and magnesium dropped.

See: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The following link takes you to the NIH Dietary Supplement Fact Sheet for Magnesium:

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The Linus Pauling Institute at OSU also has some fascinating information on magnesium supplements at the following link:

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After all that... it might be beneficial to add additional magnesium malate, magnesium glycinate or magnesium citrate up to 600 mg/day split AM/PM in two 300 mg doses to avoid osmotic diarrhea.
 
The only two supplements I increase when I use an accelerated vitamin D3 dosing schedule after a burn down test of my 25(OH)D reserves are the Omega-3 Fish Oil to 2000 mg/day, and magnesium up to 500 mg/day. 

Some CH'ers still not responding to the accelerated vitamin D3 dosing schedule after a couple weeks have bumped the magnesium up to 500 mg/day and cut the calcium out completely or half the normal dose for a week or two.

Hope this helps.

Take care,

V/R, Batch
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Re: Anti-Inflammatory Regimen and Survey
Reply #133 - Oct 7th, 2013 at 11:37pm  
Hey Clusterville!
I just have to say that I have been helping Batch promote the D3 anti inflammatory regimen on the face book support groups for a year now as I am one of three administrators on the 2500+ member group "Cluster Headaches".

I have helped many sufferers with the regimen and it is just incredible to see so many become CH free or get significant relief from this horrid disorder by using this wonderful treatment for cluster headaches. It does not work for everyone but 80% is an amazing figure!

This regimen is one of the most exciting new natural alternative, preventative treatments that is available to us today.

My doctor, Dr. Gene Kallenberg head of family medicine for UCSD in San Diego was so impressed by the results for me after trying so many meds over years of treatment that did not work for my CH.

I have been mostly chronic for 37 of the last 40 years since 1973 and went CH free in 3 days after starting the regimen and using the accelerated dosing for the first two months then dropped down to the normal dosing schedule and have remained mostly CH free for a solid year now.

This is not a "Cure" and the beast still lurks but is an extremely affective treatment for many to keep the beast at bey. PATIENCE IS CRITICAL! HANG IN THERE!...Smiley

Dr. Kallenberg has treated other CHers with the regimen with great results. He is spreading the word!!
...Thank You Pete Batch!!!...Smiley
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« Last Edit: Oct 7th, 2013 at 11:59pm by Clusterman59 »  
Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Re: Anti-Inflammatory Regimen and Survey
Reply #134 - Oct 8th, 2013 at 12:38am  
It's great to read that so many clusterheads are becomeing
pain free from this terrible disease inflicted upon us. I to
have been CH free for 12mths since starting the vitamin
D3 Regime. Smiley

Hoppy.
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Re: Anti-Inflammatory Regimen and Survey
Reply #135 - Oct 8th, 2013 at 5:38pm  
These reports are so encouraging!

Last week, my doctor prescribed some imitrex which knocked out an attack over the weekend.

On Sept 24th, I started the D3 regimen and had some relief. Then I had some bad attacks (KIP >7) so I upped the daily intake to 15000 IU with a one time 25000 IU dose along with continuing the calcium citrate and fish oil.

On Oct 2nd, my doctor did the 25(OH)D test with some encouragement and I heard back today from his nurse that my 25(OH)D level was 35ng/ml. They have suggested to finish the D3 bottle and then taper down to 1000 IU/day.

However, I found an acupuncturist and health practitioner and she told me to keep on the D3 at 15000 IU. Thinking that I will to stay on the D3 regimen but don't know whether I should increase to get to PF and increased 25(OH)D levels. There are still some attacks that I abort with red bull....no 02 yet but working on it.

Any suggestions are greatly appreciated!
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« Last Edit: Oct 8th, 2013 at 5:56pm by scabtrapper »  
 
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Re: Anti-Inflammatory Regimen and Survey
Reply #136 - Oct 8th, 2013 at 11:59pm  
Hey Scabtrapper,

You're on the right track taking the anit-inflammatory regimen...  Given your 25(OH)D came back at 31 ng/mL after a week on this regimen, that indicates you were clearly deficient prior to starting this regimen.

You might want to try what other CH'ers have done to get pain free as fast as possible and that's to bump your daily vitamin D3 dose to 25,000 IU/day and take a 50,000 IU loading dose once a week on top of the daily dose...

Two weeks on this accelerated vitamin D3 dosing schedule should elevate your 25(OH)D to around 60 ng/mL.  At that point you can drop back to 15,000 IU/day vitamin D3 and get tested again after another two weeks... then adjust your vitamin D3 intake as appropriate.  The target 25(OH)D serum concentration is 80 to 85 ng/mL and a maintenance dose of 10,000 IU/day vitamin D3 should keep you there.

If your doctor goes into atrial fibrillation or suffers anal leakage over your vitamin D3 intake and resulting 25(OH)D serum concentration when you go in for the next 25(OH)D lab test, tell him to check out the following link where 48 youths were given a single oral vitamin D3 dose of 600,000 IU.  In three days they all averaged a 60 ng/mL increase in 25(OH)D and nothing bad happened...

The accelerated dosing schedule above comes out to 660,000 IU over a one month period...

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Be sure to take all the other supplements in this regimen and for sure, keep your magnesium intake around 400 to 500 mg/day.

This is a very safe and effective vitamin D3 loading schedule.  In nearly three years, we have yet to have a CH'er on this regimen report any vitamin D3 intoxication as indicated by a total serum calcium concentration above the normal reference range. 

If you've got questions... ask away... There's no such thing as a dumb question when it comes to this regimen.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Oct 9th, 2013 at 12:00am by Batch »  
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Re: Anti-Inflammatory Regimen and Survey
Reply #137 - Oct 9th, 2013 at 4:54pm  
Thanks Batch for the reply. I've had 3 attacks per day recently but all were KIP 3 or 4....but sure would be great to have a PF day! I will try the increased dosage for a couple of weeks and then retest.

Is there a best time of day to take the 25000 IU?
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Re: Anti-Inflammatory Regimen and Survey
Reply #138 - Oct 9th, 2013 at 5:11pm  
Scabtrapper,

Good question... The best time to take vitamin D3 is with the largest meal of the day... with the most fat...  This aids absorption by as much as 50% over taking vitamin D3 on an empty stomach...  Another reason to take the vitamin D3 with the Omega-3 fish oil...

Eating a handful of almonds also helps vitamin D3 absorption.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Regimen and Survey
Reply #139 - Oct 9th, 2013 at 6:53pm  
Batch - thanks for the great answer.
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Re: Anti-Inflammatory Regimen and Survey
Reply #140 - Oct 10th, 2013 at 2:16pm  
My cycle pattern for the past 33 years of being an ECH'er have narrowed down to every other year, on odd years, beginning August/Sep, left side, average 12 weeks.

2013 is an odd year and my last cycle was Fall 2011.  I am proud to announce that my anticipated cycle did not begin this past August nor last month as expected.  I am still PF and attribute my cycle not starting to this anti-inflammatory regimen that Batch has created.

I follow this vitamin regimen protocol nightly and do not take one day for granted.  Thank you Pete!  Please get in contact with me when you are in Las Vegas next month.

-Gregg in Las Vegas
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Re: Anti-Inflammatory Regimen and Survey
Reply #141 - Oct 10th, 2013 at 4:05pm  
Congratulations Gregg...and thanks for posting your great news!  Episodics who have really predictable cycles are in the best position to measure the success of the D3 regimen. Even then, we still take all the supplements for months on end with a lot of hope and faith that it will pay off.  Did you notice any of the other syndrome symptoms happening, like tearing, sleep disruption, etc?
All in all...more great news for this new preventative. 
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Re: Anti-Inflammatory Regimen and Survey
Reply #142 - Oct 11th, 2013 at 3:34pm  
That is great news Gregg.

My episodes are quite predictable as well - now should be the time, and I do have some shadows but only 2 KIP3-4 hits so far, a week apart, easily aborted. Cross your fingers for me...
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Re: Anti-Inflammatory Regimen and Survey
Reply #143 - Oct 12th, 2013 at 2:56am  
Hey Gregg,

Great news! I know you've given this regimen a lot longer than most would have, so it's very special to hear it has finally become an effective CH preventative for you...

I'll let you know when our travel arrangements to Las Vegas firm up...

Take care and thanks again for the great news.

V/R, Batch
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Re: Anti-Inflammatory Regimen and Survey
Reply #144 - Oct 16th, 2013 at 8:27am  
Hi Batch and Clusterman 59 & all Smiley
Last time I spoke with you I had just started the D3 Regimen.
Test results:
Sept 25 = 86 nmol/L
Oct 11 = 170 nmol/L  (yay!)
Still on Verapamil, but have tapered down to 40/80/80mgs per day ( total 200mg/day), today I'll taper to 40/40/80 per day, totalling 160/day.

Because of my last cycle hit me so hard and I was at my lowest I've ever been over the 28yrs with CH's. I am very excited about joining you on my new journey of D3, however still a little scared, I must admit.  Not frighten of the regimen, reason being; I don't ever want to feel how I did sumer of 2013 again and this is my normal time for a cycle. From October to April is when I normally get hit with CH's. I'm not sure how the summer hit will affect my usual CH time hit.
Batch, shall I continue taking:
25,000 mg D3, with the rest of the regimen that is suggested by you? To increase my level to 200+ ?
And how long would you suggest to keep the D3 at 25,000/day.
I would like to taper down the Verpamil to 80mg/day, but I'll consider any suggestions to help me figure this out.
Appreciate your thoughts, as always  Wink
Thank you again,
Sue  Smiley
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Re: Anti-Inflammatory Regimen and Survey
Reply #145 - Oct 16th, 2013 at 4:21pm  
Hey Sue,

Thanks for the update...  You're doing great but 170 nmol/L (68 ng/mL) is in the low end of the green zone, 150 - 275 nmol/L.  Your target 25(OH)D serum concentration is 212 nmol/L, (85 ng/mL).

I would continue the present vitamin D3 dose and test again in a month.  At that point you should be able to drop back to 10,000 IU/day vitamin D3 as a maintenance dose.  That should hold your 25(OH)D at a stable concentration around 212 nmol/L.

As far as coming off the verapamil, tell your PCP or neurologist what you want to do and work out a scheduled taper.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Regimen and Survey
Reply #146 - Oct 16th, 2013 at 6:20pm  
Sounds good Batch.. Talk soon my friend Smiley Thanks again Batch  Smiley
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Re: Anti-Inflammatory Regimen and Survey
Reply #147 - Oct 17th, 2013 at 12:23pm  
Ok Batch - starting this regimen today. I had to switch docs and neuros because I moved across the country. New doc knows nothing and new neuro doesn't believe I know what I'm talking about (despite being diagnosed by three other neuros, every time I move).  Has prescribed Indicid because he thinks I have Chronic paroxysmal hemicrania.  Of course, it doesn't work.  Being a plebe, the neuro disregards everything I say I've tried.  That said, he's fairly forthright and responds when I, in turn, am also forthright.

So, at my wits end (again) I turn here to see what's new in treatment and find your regimen.

I've started with the following:
Vit D3 - 5,000IU
Omega 3 - 1000mg
Multi Vit - contains slightly lower doses of all your recommended supps, but I can bump up to to two per day in a week or so.

Last cycle I hit the "end."  I know all of you will understand what that means, but for the first time I realized that I didn't know what I'd do when I got the next hit. I told my neuro (at the time) and he did a nerve block. It stopped the cycle in it's tracks.

This new neuro did a block, but only needled the base of my nerve (bilaterally, at the base of my neck), not the three or four points I remember the previous neuro needling. I told new-guy this and he said we would try the base of the neck first (combined with indicid) and see how that does.  My next appointment isn't for another 1.5 months (this is the soonest I could get in, but this is Canada and I count myself lucky to even have a neuro so fast).

People who do not experience CH seem to think that the pain is acceptable and tolerable. Why, why, why?

I'll post results to your regimen and complete the survey after the recommended month.

Thanks for all you do, Batch. You're the recognized expert!

Thanks also to everyone here who informs and supports one another.
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Re: Anti-Inflammatory Regimen and Survey
Reply #148 - Oct 18th, 2013 at 3:14pm  
Hey PNug,

Thanks for the headzup you're starting the anti-inflammatory regimen...

Playing Ding Dong School with new neurologists goes with the turf as a CH'er.  We're ok as long as they listen to our ideas and concerns... and work with us to find the magic needed to prevent our CH.

With a day of the anti-inflammatory regimen under your belt by now... and I'll assume no adverse reactions...  it's time to start an accelerated vitamin D3 dosing schedule.  As a first step, see your PCP or neurologist for the 25(OH)D lab test if possible.

Several CH'ers have bumped their daily dose of vitamin D3 up to 25,000 IU/day and added a 50,000 loading dose once a week on top of the daily dose. 

Staying on this accelerated vitamin D3 dosing schedule for two weeks then dropping back to 15,000 IU/day for the next two weeks should elevate your 25(OH)D by 60 ng/mL above the starting concentration and result in a pain free response.

Try to get your 25(OH)D tested again after 30 days on this dosing schedule... If you're unable to get tested, drop back to 10,000 IU/day vitamin D3...  This is the maintenance dose that should result in a stable 25(OH)D serum concentration around a target of 85 ng/mL.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Oct 18th, 2013 at 6:31pm by Batch »  
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Re: Anti-Inflammatory Regimen and Survey
Reply #149 - Oct 24th, 2013 at 2:38am  
Hi,

I had episodic CH since childhood, on and off, getting worse in my early 20's. Now, my monster is chronic, been drilling it's way out of my skull most every morning for the last 5 years. Afterwards I get a "tension band" headache. (The "TBH" is in check now - thanks to 200 cc of Botox in my scalp every 3 months. 30 shots don't hurt that much) I also get horrific migraines. What can I say, I know how to party...LOL.

So far though nothing has broken through and stopped my chronic CH. I tried vitamins & some herbals remedies, some lowered the intensity, but nothing made me PF more than 3 days. Never tried mushrooms, they kind of scare me.

I want to try this - but I have a few issues.

First, I need a source of Omega-3 oil. I have a severe (anaphylactic) allergy to fish & shellfish. (I carry an Epi-pen everywhere I go.) So what can I use instead? I have seen flax & borage oil in the health food store - has anyone had any luck? Do they work as well as the fish oil?

Second, what is the max amount of D3 I can take, and can I add more if I already have it Rx?

My D3 level is being treated for the last 3 years by my GP. My level started out really low, it was 8! He began me on an Rx regimen of 10,000 IU and it didn't change. So he upped it and tested every 3 months for 18 months. I've been on an Rx of 50,000 IU a week for the last year & half. I'm due for a new test soon, last one was over 6 months ago. My last test the level had just started to come up, to a 27. He said I need to stay on it & test again every 6 months.

I also am mildly anemic, For which I occasionally take ferrous gluconate and vitamin C.

I take B-12 shots.

I am also extremely sensitive to solanine (found in nightshade veggies like tomatoes, potatoes & peppers.) I avoid it at all costs. I gives me a lot of joint/soft tissue pain.


That's the short of it. Believe it or not!

Thanks in advance for any advice/help with all my issues and this protocol.
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