Is it possible that you need more and more vitamin D to stay pain free as time goes by ?

[Tony Only]

I have been doing the Batch regimen (anti-inflammatory regimen) for many years but precisely only last few (before this I was lacking vitamin B's and such). Although it keeps me mostly pain free and has decreased my pain levels significantly, I have never managed to stay 100% PF with it. For CH outbreaks or for planned prevention I have needed to add busting with psychedelics, which have always worked exceptionally well even as low doses.

I am a spokes person for cluster headaches in my country and as a side job I tell my experience as a patient in lectures in hospitals etc. This naturally includes use of psychedelics which are illegal in my country.

I now have a 9 month baby boy and due to me talking about psychedelics we have had child welfare services visiting and following us ever since the boy has born. I have agreed not to use psychedelics at home and this is why I have had to rely on Batch regimen alone. Pretty soon the basic 10,000 IU per day was not enough for me and I had to lift my daily dose to 15,000 IU, then to 20,000 and now looks like 25,000 is the next step.

I know our hero and saviour @xxx will tell me this is not a problem at all as long as my calcium and PTH are in the range but I would like to know is it possible I will need more and more, can my body "get used to" high amounts of vitamin D? I wanted to ask this in public if anyone else has had the same experience. I know about low responders (we have an older genteman in Finland who is definitively one) but I don't think I am such, I have been actually responding too well in the past.

Part of the problem is that there is practically no one in the healthcare in my town, in my region, or in the whole country who would OK the use of even 10,000 IU constantly and believe me I've looked. And will keep on looking, we surely need someone who will study the Batch regimen and recommend it to patients and follow up on them.

[spiny]

Hey Tony! What did your most recent blood test tell you? With COVID, many have not gotten their 'normal' amount of sun and are suffering from low levels again. Not sure about Finland, but here, many are needing to up the D. We have been hiding a lot and not going on normal vacations and getting that sunshine in addition to our supplements. Perhaps that is what you are experiencing? 

I have been able to stay at the same level of D, but I do get out in the sun for gardening a good bit. That does help. My cycle is from September 21st to March 21st. Even with a ton of sun exposure! I had my levels tested for many years in August, only to find them at about 60 and my head kicking in to boot. The D3 Regimen was my savior too and it has prevented years of cycles now for me. 

That is horrid that Child Protection Services are after you!!!  Glare...... 

Batch does have a path to trials here now. Not sure when they will start though. Soon we all hope!!! 

Hopefully he will join the conversation soon!! Batch? XXX? Hello out there!! 

Congratulations on your son!!  You must be thrilled!!! 

[xxx]

Hey Tony,

It's not only possible you'll need higher vitamin D3 doses to remain CH pain free, it's also a safe bet with a .99 probability you will need to increase your vitamin D3 intake at some point to remain CH pain free.  This is an important part of the anti-inflammatory regimen treatment protocol or "Batch Regimen" as you call it in Finland, that all CHers taking this treatment protocol need to understand.

In short, the amount of vitamin D3 you need to take to remain CH pain free is a moving target.  It is going to change depending on the amount of inflammation in your system. 

A daily intake of 10,000 IU/day vitamin D3 and responding 25(OH)D3 serum concentration of 80 ng/mL (200 nmol/L) may be just fine under normal conditions, but experience an infection, an allergy, trauma, surgery or chemical insult and that vitamin D3 dose of 10,000 IU/day will be insufficient to keep you CH pain free.  It's also important to know that when these inflammatory activities subside, you'll be able to lower your vitamin D3 intake and still remain CH pain free.

Perhaps, the easiest way to describe this process is with the following info graphic illustrating the relationship between our actual 25(OH)D3 serum concentration and our CH Threshold that's also measured in ng/mL or nmol/L.

As you can see, when our actual 25(OH)D3 serum concentration (green line) is higher than the CH threshold (red line),  we're CH pain free and life is wonderful.  If it's below the CH threshold, the CH beast is jumping ugly making life miserable.

The important thing to understand about the CH threshold is it rarely remains constant and that it changes with the inflammation associated with an immune system response to infections, allergies, other medical conditions, other Rx medications or chemical insults. 

This CH threshold can be as low as 47 ng/mL (117 nmol/L) and as high as 250 ng/mL (625 nmol/L).  Even your actual 25(OH)D3 serum concentration varies at the same vitamin D3 maintenance dose.  The following 4-year chart of my lab assays for serum 25(OH)D3, calcium and PTH illustrates the 25(OH)D3 levels I've needed over time to remain CH pain free. 

This years pollen season was onerous.  I started elevating my 25(OH)D3 in late April with higher vitamin D3 doses in anticipation of the pollen from the Alder trees that surround our home that peaks in March followed by pollen from the Big Leaf Maple trees that peaks in early May. 

By mid May I was taking 560,000 IU of vitamin D3 a week (80,000 IU/day) to remain CH pain free.  That drove my 25(OH)D3 serum concentration up to 273 ng/mL (693 nmol/L).  My PCP had no problem with the 25(OH)D3 this high as my serum calcium was still in the green.

I've since been able to taper my vitamin D3 intake down to 140,000 IU/week (20,000 IU/day).  There's another interesting part of all this.  I spent most of June in Pelican, Alaska fishing Chinook (King Salmon) and halibut.  With frequent rain, the pollen count in Pelican was virtually nil. As a result, I needed only 100,000 IU/week (14,285 IU/day) vitamin D3 to stay CH pain free while there in Alaska. 

However, as soon as I returned home the end of June, I needed 280,000 IU/week vitamin D3 to remain CH pain free.  This is likely due to residual pollen as we've not had a drop of rain since early may.

Getting back to the CH threshold chart.  All of us taking this vitamin D3 treatment protocol to stay CH pain free will need to increase our 25(OH)D3 serum concentration at one time or another to counter an immune system response.  This begs the question, How should we do this?

The method I've found that works best in the least amount of time is to use a combined loading dose of two (2) Bio-Tech D3-50 capsules (100,000 IU) and 0.5 mL (40,000 IU) of the Nutrasal Micro D3 nanoemulsion for a loading dose of 140,000 IU/day.

I take this loading dose for one to three days or until I experience a 24 hour CH pain free response whichever occurs first.  I also take all the other cofactor supplements daily.  Once I experience a 24 hour CH pain free response, I start a taper by stopping the combined vitamin D3 loading dose, but continue with the cofactors. 

Most of us should be able to go for up to a week before sensing an approaching CH or waking up with one.  Count the days since stopping the loading dose until the return of your CH.  At that point I take another combined loading dose of 140,000 IU vitamin D3.  My next dose is one day less than the time in days it took for my CH to return.  In effect, you've done a taper by changing the dosing schedule.  For practical purposes, this is the new maintenance dose.

You'll know when you can taper the vitamin D3 dose further if you're able to go more than a week taking a single vitamin D3 dose of 140,000 IU.  At that point stick with the two Bi0-Tech D3-50 capsules but drop the Micro D3.

Hope this isn't too confusing.

Take care and please keep us posted.

V/R, Batch

Edited September 4, 2021 by xxx

[Tony Only]

Thanks @spiny - my latest blood test shows my level at 250nmol/l - but it's probably much much higher. The laboratory in our public healthcare system only shows numbers up to 250 and they say the can't measure it higher than that - I don't know what BS this is. You can get blood test on a private sector to get the exact number, I have only done that once (I was at 473nmol/l) since it costs so much. If I would also test for calcium and PTH we would be talking around $400-$500. The higher the numbers I am presenting to the GP I see (in here it's totally random, different person every time) the more self destructive they think I am taking these insane amounts of vitamins. So in the last years I have not bothered.

I have been out on the sun more than usual, we had a heatwave 2 months straight this year. I truly appreciate your opinion and tips and tricks !

Little guy is amazing and one more reason to push one gear harder on our joint mission to get us all PF one day 

Thank you too very much @xxx - you explaining this with a term "moving target" and now even I catched on. This may very well be what is going on at the moment.

I don't know what I was thinking when I stopped smoking in 2017. Pretty soon I developed allergies that became more and more severe (prior to that, 42 years without any kind of an allergy or sensitivity to anything) and couple of years later asthma. I seriously would not have quit should I have foreseen this - I would have kept all that tar in my pipes as a protection !  This current odd mixture of shadow level CH acting up and weird allergy attacks is how my head decides to appear at the moment. I have been adjusting my intake of Vitamin D according to symptoms.

Also thank you for all that you do for us ! 

Edited September 4, 2021 by Tony Only