a few weeks ago my son was in hospital for a week with scarlet fever, and guess what?.... the beast decides to rear it's head.... wonderful, as you can imagine! anyhow for a long time iv'e had 1200 mg fish oil, 5000 iu D3 and a poundstore multivitamin... now i haven't taken them assuming that i don't have all the required ingredients, also am not allowed to take the calcium.... being stressed to the max and staying in a tiny flippin bed next to my son in the hospital for a flippin week i decided to take the 3 i had out of desperation.... the first night one cluster about kip 4.. the second night 1 cluster about kip 2... the NOTHING!!!... woooo hoooo!
Ok here's the questions.....
I was out shopping and saw a tub of multi vitamins much much more expensive and exquisite than my pounstore ones and bought those... Took them on the next dose instead and BAM full blown kip 10 million jillion cluster!... went straight back to the good ol poundstore multi vitamin and once again PF... Now the muchly expensive multi vit had the same plus more in than the el cheepo vitamin but didn't work..... confused.com.
Secondly yesterday due to more stress (my car got written off by a bus and my little ones head got split open) i forgot to take my dose... PANIC as the beast starts really twitching.... take the dose at 10.30 pm.(better late than not at all???) and he didn't come as feared thank the lord!
So my second question as an episodic sufferer is when do i stop taking them? if at all and is it safe to carry on indefinately? i wonder if when out of a cycle you don't need them or are they just holding off the cycle until you stop... once again sincerely confused  :D

I can't answer the question about the efficacy of the name brand vs. the off label. That's the Batch Man's area of expertise!

I was an episodic sufferer for well over 30 years, spring and fall, 8-12 week cycles. Since starting the Batch Regimen I've been pain free for 4 years. I take my meds religiously, no lie I don't think I've missed half a dozen doses in 4 years! I bought a 2 week pill box that I keep loaded, goes with me on my travels so I NEVER forget. So what I'm saying is for me, I NEVER stop. As long as beasty stays at bay, I never will.

Joe

Hey Cathlane,

Yikes!  Thanks for the feedback... You've had more than your share of stress...  You've also brought up three very important points about the anti-inflammatory regimen... Great questions too....

The three points are the importance of Omega-3 Fish Oil, it's the 25(OH)D serum concentration not the vitamin D3 dose and the role of calcium.

The first point deals with the intake of vitamin D3 and Omega-3 Fish Oil...  These are the two most important supplements in the anti-inflammatory regimen as both have powerful anti-inflammatory properties... 

Several CH'ers have commented this regimen wasn't fully effective until they added or took more than 1000 mg/day Omega-3 Fish Oil.  In short, don't be afraid to increase the dose of Omega-3 Fish Oil...  Taking 2000 to 3000 mg/day may help.

Part of the theory behind taking these two supplements is they suppress the neurogenic inflammation associated with CH... and that helps prevent the terribly painful attacks. 

The remaining supplements taken in this regimen are the cofactors that help metabolize vitamin D3 to 25(OH)D, and on to 1,25(OH)2D3, the active hormonal form of vitamin D3.  When this process takes place at the cellular and nuclear level , 1,25(OH)2D3 combines with vitamin A (retinol) making genetic expression possible.

The second point is the magic behind all the benefits of vitamin D3 isn't so much the daily intake but rather the 25(OH)D response...  As CH'ers we need to keep our 25(OH)D serum concentration in the optimum sweet spot or center of the "green zone" between 70 and 80 ng/mL. 

Given the variation in the 25(OH)D response to the same dose of vitamin D3, I chose 10,000 IU/day vitamin D3 as this dose results in 95% of us obtaining a 25(OH)D response in the "green zone" as shown in the following chart.  Data from the online survey of CH'ers taking this regimen with 10,000 IU/day vitamin D3 indicates an average 25(OH)D response of 76 ng/mL, (195 nmol/L).

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Given the majority of CH'ers who start responding to this regimen do so within the first two weeks at a vitamin D3 dose of 10,000 IU/day, it's likely the 25(OH)D serum concentration needed to prevent CH is lower than 60 ng/mL, (150 nmol/L). 

Keeping the 25(OH)D serum concentration in the optimum range of 70 to 80 ng/mL provides a reserve to guard against competition from other 25(OH)D consumers.  Roughly 20% of the 25(OH)D metabolized from vitamin D3 by the liver is further metabolized by the kidneys to maintain calcium homeostasis and BMD.  The remaining 25(OH)D is metabolized extrarenal, (outside the kidneys) to 1,25(OH)2D3 at the cellular and nuclear level throughout the body. 

Our immune system is a major consumer of 25(OH)D.  It's running 24 hours a day 365 days a year but it's 25(OH)D consumption rate varies with exposure to virus, bacteria and allergens.  As the immune response varies with the level of exposure, so does the consumption of 25(OH)D.

We've had several CH'ers, me included, report a resumption of CH symptoms during a cold, flu or allergic reaction or that they didn't experience a pain free response to this regimen until after cold or flu symptoms were completely gone.  In other words, colds, flu and allergic reactions can eat through enough of a 25(OH)D reserve to allow CH symptoms to return.

The third point is if you're eating a healthy well-balanced diet, calcium does not appear to be an essential element in preventing CH. In some cases where CH'ers are taking verapamil as a CH preventative, calcium supplements may reduce its effectiveness.   

That said, taking vitamin D3 increases the amount of calcium mobilized from the gut...  and if there's insufficient calcium in the gut, the amount of vitamin D3 we take will result in calcium being mobilized from bones... 

This isn't meant to spook anyone as it's quite normal for calcium to be moving in and out of the bones on a regular basis in order to maintain calcium homeostasis, the process that keeps calcium total serum concentration in a very narrow range... 

Taking vitamin D3 speeds up this process so taking calcium supplements helps insure more calcium goes into the bones than comes out of them.  Vitamin K2 plays a role in building bone mineral density (BMD) as well.

Now to your last question.  There are several health advantages to staying on the anti-inflammatory regimen year-round as opposed to taking it only when in cycle...

The half-life of 25(OH)D is roughly 15 days if you stop taking vitamin D3 along with the cofactors and there's no exposure to sun without sun block...  That means in the absence of any vitamin D3 from Sun or supplementation, a 25(OH)D serum concentration of 80 ng/mL will drop to 40 ng/mL in two weeks and down to 20 ng/mL in a month.

Staying on this regimen year-round also prevents needless CH pain while building your 25(OH)D back up to a therapeutic level if you're late restarting this regimen in time for your next cycle.  We've had a good number of episodic CH'ers who have been on this regimen two to three years report they've sailed through their normal cycle times completely pain free.

Hope this helps.

Take care, thanks again for the feedback and please keep us posted.

V/R, Batch