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123 Days PF And I Think I know Why (Read 303866 times)
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Re: 123 Days PF And I Think I know Why
Reply #1350 - Mar 28th, 2013 at 2:42am
 
About 70 days on regimen and no noticeable change in CH patterns or intensity.† Cut calcium in half and added magnesium.† Have cut back on D3 to 15,000 per day (no weekly super dose).† If noticeable changes were evident, I could see having D3 tested, but O2 is more important right now.† Will keep the faith until insurance starts next year or there is significant change in CH's or I cash out my 401k before BO gets his hands on it. Weather not cooperating, still waiting to start fishing.† Enli (dog, but don't tell her) refuses to go until water temp is 68 degrees!
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Re: 123 Days PF And I Think I know Why
Reply #1351 - Mar 28th, 2013 at 8:19am
 
Batch,

I have to ask you some questions about the regimen.
This is going to be long, so feel free to take as much time as you need and draw from this post, any parts you see as relevant. I make all information available for this purpose.

I am doing so, on the forum as this discussion may be of use to others. As a moderator on the Aussie CH site, I often see mal-adapted versions of your regimen coming through.

I am guilty of the same thing, I took parts of the regimen that appeared to work for me, tweaked it here and there, then got slack over time and my CH is back with a vengeance. It may be for any reason that my CH is back.
It may be a spontaneous flare-up for me, but in 34 years of chronic (IHS diagnosed) CH, I did not experience a reduction in severity, or frequency of attacks as significant as I had, by using my feeble attempts at adapting your regimen. Imigran injections expired due to non-use, unprecedented - that's how effective it can be.

I am here to attempt to source local ingredients and localise the regimen, based on what we have available, on-shelf in Australia.

My Vitamin 25 Hydroxy-Vitamin D (25 hydroxy cholecalciferol) level in Jan 2012 was 19nmol/L, (from a lab reported desirable range of 60-160nmol/L.)

This was taken before beginning any Vit D treatment.

In JAN 2012 after this test result, I commenced taking 10,000iU of D3 "Ostelin", 5000iU in the AM, 5000iU in the PM. With food to aid absorption, or uptake.

(Apologies for the size and quality of pictures, I just learned how to take, resize, enhance and host them for this. Maybe right-click and select "view image", then CTRL+ for zoom, if they are too small to see.)

Ostelin D3 1000iU gel/oil capsules as cholecalciferol:

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Regardless of CH, I needed to get my D3 levels up and Ostelin was my GPs preferred method, over "megadoses" of 250,000iU, that are routinely prescribed for Vit D deficiencies here. Like this stuff:

1000iU per drop, megadoses:
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Within days to weeks I noticed almost immediate improvement, but could not say for sure whether Vit D had done anything directly for CH, as I was not suffering too badly at the time. I noted immune system benefits from D3, helping me to recover from Prednisolone and keeping many a cold at bay. I have not had a cold since and my health has improved.

I stuck with JUST the D3, for some time.
Later adding in Centrum, fishoil and caltrate.
Centrum details:
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Swisse high strength wild fishoil details:
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Caltrate details:
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Late in 2012, I was admitted to ER with severe lower right abdominal pain. Drs there suspected Kidney stones, and although no scans were performed, they wrote a report stating that I had probably passed a small Kidney, or ureteric stone. Previous renal USS had showed no anomalies, other than a 3-4 cm benign cyst on my left Kidney - unremarkable.

They asked what I was drinking and many other lines of inquiry. I forgot to mention D3 @ 10,000iU per day, as a listed medication. There was speculation that I may have formed a calcium type stone in the Kidney.† I had renal USS conducted again, after this event, all was normal and unremarkable.

I (perhaps incorrectly) suspected some involvement of the Vit D in possible stone forming. I went back to my GP who said 1000iU, was the recommended dose and my GP left it at that. I tapered from 10,000iU, over about 2 months, back to 1000iU. I removed Calcium supplement, under suspicion of stone-forming, also because calcium appears not to be so good for people with GI reflux, taking proton-pump inhibitors, like Nexium (Estomeprazole) as I do. Stomach acid production (I understand) increases in order to break down the calcium. So for this reason, the calcium was dropped.

No proof was ever offered of stone-forming and I strongly suspect the Docs were wrong. I have since found that the lower right abdominal pain was more than likely an intestinal spasm, caused by Coloxyl and have changed to Movicol, with great benefit.

I had maintained 2 X 1000iU D3, 1 X Centrum, 6 X fishoil per day.

My CURRENT Vitamin 25 Hydroxy-Vitamin D (25 hydroxy cholecalciferol) level in MAR 2013 is 79nmol/L, (from a lab reported desirable range of 60-160nmol/L.) GPs still recommend a D3 maintenance dose of 1000iU to me.

I have ramped up the D3, back to 10,000iU.
I am still taking 6 X fishoil (3 doses X 2) and 1 X Centrum, daily. Attempts to start Caltrate have caused GI reflux.
I have also added Salvital (do you have this in the US?) as an attempt to replicate home made lemonade. Salvital is my attempt at introducing some sodium bicarbonate, citric acid, magnesium. It seems to work as a urinary systemic alkalinizer, fixing urinary tract infections. The bicarb seems to help the head somehow, I can only speculate, but suspect it is acting on arterial structures as a pH buffer, in some way or other.
I discovered Salvital's benefits before I saw your regimen.

Salvital panels:
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Salvital panels left:
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Salvital panels right:
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Salvital Ingredients: Sugar, Mineral salt (500), food acids (296, 334), mineral salt (518), lemon flavor.

I can't make Lemonade at all, let alone every day.
Hence the Salvital...

CH is back on, I am ramping up the D3.
Tweaking the regimen is fine by me, but I am a bit lost.
I see merit in it and feel the positive benefits, I want to get it right this time, Batch.

I have read a lot of your posts and attached studies, pdf's and online responses. Some of the Science is hard to grasp, I never anticipated vitamin D studies becoming so cascade-like, with a push-pull effect, or variable in nearly every user parameter of the regimen. It's complicated, indeed.

Many people stand to benefit here, or I should say, they already have. I direct enquirers about the regimen to your thread, but readers come back confused on localising the info.

I hope to meet somewhere in the middle, so the regimen is of use to Aussies, with what they have at hand.

At the significant risk of sounding stupid here - What am I doing wrong?

Can you guide me through a version of the regimen with what we have here in Oz?

A lot of questions, I know.
It's a lot to ask...
Please take your time, Batch.

Cheers, Ben.
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Re: 123 Days PF And I Think I know Why
Reply #1352 - Mar 28th, 2013 at 10:53am
 
Hay Jeannie,

Thank you for the kind words... but you and all the other CH'ers using this regimen need to thank the person you see in the mirror every morning...

The growing success of the anti-inflammatory regimen as a cluster headache preventative has been a team effort.† It wouldn't have been possible without a forum like this and the participation of so many CH'ers willing to share their response to this regimen. It's been a rapid learning process for all of us and we're not done learning how to make this regimen work even more effectively.

Krill oil should work just fine...† What you're looking for are the two primary Omega 3 fatty acids, eicosapentaenoic acid (EPA) at 360 mg/day and docosahexaenoic acid (DHA) at 240 mg/day.† Several brands now offer "burpless" Omega 3 Fish Oil softgels...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1353 - Mar 28th, 2013 at 1:05pm
 
Hey Ben,

You've asked some good questions so I'll give you my best answers...

Let's start with the basics...† A 25(OH)D serum concentration of 79 nmol/L (31.6 ng/mL) is too low to have a therapeutic effect as a CH preventative.

The 25(OH)D serum concentrations reported by CH'ers who have gone pain free on this regimen run in a range of 150 to 275 nmol/L, (60 to 110 ng/mL)

As you can see in the following chart, it will take the average CH'er 35 to 40 days to build the 25(OH)D serum concentration from 75 nmol/L up to 150 nmol/L at a vitamin D3 intake of 10,000 iU/day.

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You'll also notice that it will take a vitamin D3 maintenance dose of 10,000 IU/day in order to maintain your 25(OH)D in the optimum therapeutic range to prevent CH.† 10,000 IU/day vitamin D3 should also result in a 25(OH)D serum concentration in a stable equilibrium around 212.5 nmol/L, (85 ng/mL).

You can shave a week to 10 days off this time interval by using one of the accelerated vitamin D3 dosing schedules for at least a month then get a second 25(OH)D lab test...†

15,000 IU/day plus a 50,000 IU loading dose once a week has worked very effectively and it has been well tolerated.

Calcium, Omega 3 Fish Oil, and the vitamin D3 cofactors are also very essential parts of this regimen.† The following list of supplements and doses provide the best CH preventative response:

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360
† †† †† †† †† †† †† †† †† † mg/day, DHA 240 mg/day)
Vitamin D3 *† †† †† - 10,000 IU/day
Calcium **† †† †† †† - 500 mg/day (calcium citrate preferred)
Magnesium† †† †† †† - 400 mg/day (magnesium citrate
† †† †† †† †† †† †† †† †† †† †† †† †or magnesium gluconate)
Vitamin K2***† †† - 120 mcg/day (MK-7)
Vitamin A ****† †† - 900 mcg (3,000 IU) for men and
† †† †† †† †† †† †† †† †† †- 700 mcg (2,333 IU) for women
Zinc† †† †† †† †† †† †† †- 10 mg/day
Boron† †† †† †† †† †† † -† †1 mg/day

You can find this list of supplements, suggested dosing, vitamin D3 dosing strategies, drug interactions and contraindications at the following link:

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Finding over-the-counter, non-prescription formulations of these vitamins and minerals in Australia is going to take some grunt work.† The goal is to find as many of these supplements at the right dose in a single tablet.† Clearly that isn't possible, but you should be able to get the daily regimen down to a minimum number of pills...†

Finding vitamin D3 softgels in the 5,000 IU/softgel is a problem in Australia.† Your social medicine has deemed doses this high must be controlled by prescription...† Getting that regulation changed is not in the cards so look for alternative sources over the Internet you think would clear Australian customs.

The obvious solution here is to pester the heck out of your PCP or neurologist until he or she prescribes a two or three month supply at 10,000 IU/day.† Once you find physicians willing to prescribe vitamin D3 at these concentrations and quantity, publish their contact information.

Here's a starter for that list...† Dr. Peter Lewis, MD.† Peter is an Integrative physician in Manley, NSW.† He's also a vitamin D3 Jedi Master and I know for a fact that he's aware vitamin D3 taken at the doses suggested in the anti-inflammatory regimen can prevent CH...† I've shared that information with him. You can find him at the following link:†

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Regarding the anti-inflammatory regimen and kidney stones...† Lots of good info on this topic available at the Vitamin D Council and Vitamin D Wiki at the following links:

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The guidance here is don't read just one report...† Peruse through enough of them and you'll see some interesting patterns...

The "Good Guys" who really understand the pharmacokinetics of vitamin D3 and its cofactors frequently point out or comment on studies that were either poorly designed, used too low a vitmain D3 dose, didn't use the cofactors, or had a not so obvious big pharma bias to scare people away from taking vitamin D3 at therapeutic doses... i.e., 5,000 to 10,000 IU/day.

The following link discusses the role of vitamin K2 (MK-7) and magnesium in treating and preventing kidney stones.

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Hope this helps...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1354 - Mar 28th, 2013 at 4:25pm
 
Hey, all!

Just a quick update.

It's been exactly 4 weeks since I started the regimen. I was taking 10000 D3 in the first two weeks, 15000 in the third week and 20000 in this last week. I also took two loading doses of 50000. I've been taking all the cofactors as well, bumped the magnesium to 800 in the last two weeks, unfortunately I cannot find K2 over 45mcg. I eat carrots and other vegetables for vitamin A. Sometimes I throw in some almonds and walnuts.

Lab test (done after just a couple of days on the regimen) showed 20 ng/ml. I did the test again two days ago, so I'll know the results sometime next week.

The changes I seemed to experience are: At first, I started getting hits in the afternoon and I developed constant shadows throughout the day, but there was a significant reduction in the intensity of the attacks. There were even three days without any attack, just shadows. Every day is different. For the last week or maybe less I am not getting any more hits in the afternoon but am getting them at around midnight every day. It seems the oxygen is working faster as well.

I feel like crap during the day at work mostly because of the intense shadows which I am afraid will develop into attacks, I drink a lot of small pots of coffee to get rid of them at least for an hour or so.

Don't get me wrong - there are changes in my cycle and there is significant reduction in the intensity of the attacks. They are different, not just by intensity but ... hard to explain. It's like attacks without the characteristic signs (pulsating vain, tearing, rise in inner temperature, etc). I just... want this to work so badly that it completely ruins my day when I wake up at the morning with that feeling in my head... you know what I am talking about, when you know the beast is still inside your head.

I will keep up with the dosing and am eagerly awaiting the lab results.

Let me just say at the end that I deeply respect every person on this forum (without knowing you in person), since most of you have had it way worse than I ever had. This cycle is mentally so difficult for me, mainly because I was expecting it to end after 1 month like it did for the past 12 years but it just keeps going on.

Thanks
Jure

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Re: 123 Days PF And I Think I know Why
Reply #1355 - Mar 28th, 2013 at 6:30pm
 
Thanks Batch,

I will peruse all the links closely, get some things moving here and report back.

Having slept on it, I realised that perhaps I should not have posted in the middle of so many attacks, for I answered my own question really - I hadn't followed the regimen to the letter.

The GP (MD) discouragement here for dosing up D3 is palpable. Without thought, they universally think it is worthless, if not dangerous and condemn it as an idea.
They think I am mad for trying.
I did tell my GP that I was aiming for over 200 nmol/L, He nearly fell off his chair. To no-one's surprise here, I suppose; he recommended that I maintain a figure <80 nmol/L. They also balked at raising my Calcium level, as it was well up in the range through diet alone.

Most GPs here are AMA members. (Australian Medical Association), a recent survey of registered GPs here indicated that in a majority of GP respondents - Litigation was their number 1 concern in clinical practice, over and above patient care or outcomes...
We are not traditionally a litigious society here, but the recent trend in suing your GP's ass off, has stopped all progressive thinking, put up a road block and left general medicine somewhere in the mid 90s.

So I will do what I have had to many times before, arm myself with facts and head back in there.
I did not let them discourage me from 20 years of CPE in CH.
I looked at this as exclusively a Vitamin issue, perhaps if I change my thinking a bit and look at it as a CH issue, I will refocus my efforts and be relentless once again in my pursuit of answers and CH relief. Nothing like 4-5 attacks per 24hrs at high pain levels to get me into gear. I hate Imigran.

Finding anything over 1000iU OTC here is near impossible (and can get expensive too.) Our government PBS (Pharmaceutical Benefits Scheme) only offer a D3 powder for use only in Osteoporosis, with very poor bioavailablity. I would have to bake D3 cakes using it as flour to get the required dosage up for use in CH...

However, I can get 'off-label' approvals for just about anything after having 70 odd drugs fail and being still an intractable CH case. If the hospital pharmacy can get it and the Prof (He remains open-minded), the drug approvals board and ethics committees see any possible merit, I will have it prescribed. They don't even have to see merit, just safety. Perhaps running this through those regulatory bodies here will wake them up to the regimen.

(These are the same people involved in clinical trial evaluation. If they won't run a wider trial on it, they will have to come back to my case for a check on efficacy and a conclusion as part of their approval process for "off-label" use in my case. Sneaky, indeed... This could be interesting, as the Adelaide Uni sits up and takes notice when something works in Headache conditions...) Wink

We do 1 man trials on drugs all the time, with clinical outcomes closely monitored. I will ask the Prof if he can set up a 1 man trial then, using my baseline bloods and consistent CH, we have a good place to start. Oh well, it's off to be a CH pioneer in my neck of the woods again. It's a lousy job, but someone's gotta do it!! Grin Haha!

Thanks Batch, once again the built in separation here from the Pharmacologist and the Nutraceutical meant I had overlooked my specialist as a D3 prescribing source.

Thanks so much for the local resource.
If I have any trouble here, it looks like I may have Peter Lewis to contact and move things along.

I loaded up on D3 dose last night, 5mls of that concentrate.
I will maintain the 10,000iU, whilst I plunder and pillage all the pharmacies for suitable ingredients.

I'm on it.

One more question - does everyone still need the Lemonade?

Cheers, Ben.
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Re: 123 Days PF And I Think I know Why
Reply #1356 - Mar 28th, 2013 at 11:55pm
 
Jure, Ben,

It appears you're both in the same boat trying to wrangle the needed supplements while the beast is hammering away...† I do know what that's like...

Running gun battles with physicians who balk at prescribing vitamin D3 at therapeutic doses doesn't help either...† They'll learn someday... so it's up to us to provide the CME on the efficacy of vitamin D3 they need...

The only thing I can suggest at this point is be patient, use oxygen therapy at 25 liters/minute to abort the attacks or use a triptan if necessary... and bump the magnesium to 1000 mg/day.

The lemonade and calcium citrate buffer is more a diagnostic and short term aid for a low arterial/systemic pH...† If there's a detectable decrease in the frequency, severity or duration of your CH using this buffer, the longer term solution is a GOMBS diet with a hand full of Greens, Onions, Mushrooms, Beans/Berries and Seeds a day.

Take care, hang in there and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1357 - Mar 29th, 2013 at 6:02am
 
I'm on it Batch.

I think Pr Rolan is in for a 1 man clinical trial of the D3 regimen!
Will be if I get my way, he can hardly knock me back at this point. Thanks to your research, I can prove safety and get some trial action started. Efficacy is the proof in the pudding. I will do my best to get the regimen correct, Oz-adapted and into me ASAP.

Thanks Batch - JeD3 master.

Means a lot to me and a lot of people I hear from.

Cheers, D3 Grasshopper - Ben. Grin
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Re: 123 Days PF And I Think I know Why
Reply #1358 - Mar 29th, 2013 at 6:51am
 
Just a thought, Ben, but what they call lemonade in America is very different to lemonade here in Oz.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Re: 123 Days PF And I Think I know Why
Reply #1359 - Mar 29th, 2013 at 6:16pm
 
Hence, my use of Salvital as an attempt at a pH buffer and my question to Batch about his Lemonade, Brian.
I took a semi-educated guess, figuring Salvital could not do me any harm in trying.

Salvital contains:
Sodium Carbonate, an acidity regulator. (As Mineral salt 500)
Malic Acid - (296).
Tartaric acid (334)
Magnesium sulphate or Epsom salts (518)

I did read his posts and realise the difference between the on-shelf stuff here and the gear both Batch and my Grandma used to make.

Similar to the recipe Batch posted:
Quote:
I make my own lemonade and sweeten it with Splendaô an artificial sweetener to cut down on the carbohydrates.† I use a ratio of one part lemon juice to 4 or 5 parts water and one part Splendaô.† If you don't have Splenda you can use another sweetener or sugar then adjust to taste.

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Although far from expert in the complex chemistry behind all of this, my intuition said to give Salvital a shot as a systemic pH buffer. I was once a qualified Cert 3 Cellarhand working in wineries in WA (where Cellarhands actually make the wine, whilst said Winemaker smells, sips, sloshes, spits, and postulates...)

I helped do a lot of crushing, racking, barreling, testing and 3am starts to keep the precious and unpredictable wine within spec. So I had some basic applied chemistry training around Malolactic fermentation, general wine transfer and handling, but it's mostly forgotten these days and perhaps irrelevant to the regimen. That's why I ask Batch.

I would make my own Lemonade, but the Lemons available in shops these days taste like wood, all fast grown with no real taste or goodies like the backyard variety used to have.
Lemon trees used to be in every second back yard here when I was a kid, but most have ripped them out now.

Batch seems to have rendered this point moot in my CH case anyway: Quote:
The lemonade and calcium citrate buffer is more a diagnostic and short term aid for a low arterial/systemic pH...† If there's a detectable decrease in the frequency, severity or duration of your CH using this buffer, the longer term solution is a GOMBS diet with a hand full of Greens, Onions, Mushrooms, Beans/Berries and Seeds a day.


I have moved over to bean salad, with onions, greens, mushrooms. I eat blueberries, but have not found seeds that my system can handle yet, apart from some found in wholemeal breads I sometimes eat.

Just ramping up my D3 again, trying to read up on all the info Batch has given me, sourcing all the Oz ingredients and liaising with my specialist to see if I can do this on the books as a one-man clinical trial.

Have a good Easter break Brian!
Don't have too many beers mate!

Cheers, Ben.
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Re: 123 Days PF And I Think I know Why
Reply #1360 - Apr 2nd, 2013 at 3:12pm
 
Batch,   I just got my D3 test results, and they are quite depressing.  After following the regimen for 7 wks, my vitamin D, 25OH, is 95ng/ml.  I say this is depressing, because I think this is right in the therapeutic range, and my clusters are going off the charts.  Worse every night, downhill fast. I am sad to say, I may be one of the 20 percent who is not responding to this therapy.  My question is,  Do you think I should stick with it for a while longer before I throw in the towel, is there a chance that trying to bring my levels a little higher might help?    

Sad, so sad 
thanks,
christine Cry
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Re: 123 Days PF And I Think I know Why
Reply #1361 - Apr 3rd, 2013 at 2:06am
 
Hey Christine,

I'm sorry the anti-inflammatory regimen isn't working to prevent your CH just yet...† Do you still have oxygen therapy available to knock down/abort the CH attacks?

Yes, it's possible you're among the 20% who don't have a favorable response...†

That said, we're beginning to understand there is usually a reason or reasons why some CH'ers don't respond to this regimen...† so don't throw in the towel just yet...† There are also a lot of benefits to vitamin D3 therapy beyond preventing CH...

The general approach at this point involves "tuning" the regimen.† You've already elevated your 25(OH)D into the green zone so stick with your present dose of vitamin D3...†

Now we need to look at ways to ensure the 25(OH)D that's not being metabolized by the kidneys to maintain calcium homeostasis has everything it needs to be metabolized extrarenal (outside the kidneys) at the cellular level throughout the body... and brain to 1,25(OH)2D3, calcitriol.

This path of vitamin D3 metabolism is called the autocrin/paracrine route that enables genetic expression.† It requires vitamin A (retinol) to metabolize 25(OH)D into 1,25(OH)2D3 and more vitamin A in order to bind at a vitamin D3 receptor (VDR).

Viral and bacterial infections can also soak up available 1,25(OH)2D3 activating your immune system's T cells.  Have you had a cold, the flu or an allergic reaction over the last few weeks?

I realize this is so much mubo jumbo and that you want to know the time, not how to build a Swiss watch... so here's what's worked for other CH'ers who elevated their 25(OH)D into the green zone, but didn't experience a significant therapeutic effect...

1.† Quit the calcium supplements for a week or two.

2.† Increase the magnesium intake to 1000 IU/day.† Magnesium citrate or magnesium gluconate have much better bioavailability than magnesium oxide...

3.† Make sure you're taking vitamin A (retinol) at RDA...† ~ 700 mcg (2,333 IU) for women.

4.† A low systemic/arterial pH (too much acid) can also interfere with just about any CH preventative.† The steps you can take here include a change of diet to make your system more alkaline (less acid)...†

Cut back on red meat, cut out sugars, gluten and peanuts...† Eat a GOMBS diet with a handful of Greens, Onions, Mushrooms, Beans/Berries and seeds a day.†

You can find more about the GOMBS diet at the following link:

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Walnuts and almonds make a great snack...

If these steps don't result in a favorable response in a couple weeks, ask you PCP for an endocrine panel of lab tests...†

If all that fails, there's nothing wrong taking verapamil or busting... As far as we can tell, they don't interfere with vitamin D3...

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: 123 Days PF And I Think I know Why
Reply #1362 - Apr 3rd, 2013 at 7:14am
 
Thanks Batch,† you are the best.† I will keep with it, and follow your suggestions.† i have had an infection of some sort, (sinus) or cold, that just wont quit, all winter and its still kicking.† In fact, my blood test showed my Absolute Lymphocytes were too high, which indicates infection somewhere.† i already take verap, at 480, although, its not really helping anymore, like I said , things are sliding downhill very fast.† I cant bust, because I take anti convulsants, and they interfere with the effects.† I tried in the past, and no effect whatsoever.† †Hopefully, they dont interfere with this protocol as well.† In fact , the only thing that has ever helped me at this stage, is powerful anti inflammatories, such as cafergot, or imitrex.† That is why I had high hopes for the D3 regimen.
     I have my O2, but waking up every 45 min all night long , is really starting to make me screw up my life.
† †† I will tweak my diet,† (I do love, love, love,† peanut butter) but I will kiss it goodbye, add the vitamins and see what happens,†

thanks again
Christine Smiley
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« Last Edit: Apr 3rd, 2013 at 7:19am by chrisw »  
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Chad
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Re: 123 Days PF And I Think I know Why
Reply #1363 - Apr 4th, 2013 at 11:31am
 
I must thank you again Batch.† I had a small 19 day cycle which is my norm once a year.† With doing this D3 regimen at a lower intake as I have told in our PM's, I will say this has been the best cycle in the 20 years I have gotten CH.† Through this cycle I only took 5000 I.U. of D3, the magnesium (I used the oxide), the calcium citrate, fish oil, C, B12, Red Yeast Rice (for cholesterol).† I have been exercising like a maniac too as I am training for a Tough Mudder race in June.† The hits that did come through were easily aborted with O2 within 2 minutes each at 15LPM.† As you have said Batch, I was at the lower level of D3 intake on your scale and it proved to me even at lower levels it still did a LOT of good with managing this cycle.† If I was in agony, I would definitely increase that intake.†

Thanks again for your dedication and research on this wonderful treatment!

All the Best!

-Chad
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When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
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Re: 123 Days PF And I Think I know Why
Reply #1364 - Apr 10th, 2013 at 9:04am
 
This is my first post...I lurk on this site sometimes but haven't posted before, because I don't have CH--I have a different headache disorder called Hemicrania Continua. I just wondered if anyone has any information about whether this is effective for other types of headaches--especially other TACs (SUNCT, HC, or Paroxysmal Hemicrania). I figured it wouldn't hurt to try it,  but I was wondering if anyone has had success with it for other types of headaches.

I had my D3 levels tested last week (after being on the regimen for a couple of days) and they were at 67nmol (BTW, for anyone in the UK, the Birmingham NHS Trust does D3 tests by mail--very easy to do and less of a faff than trying to get your GP to order one!).

I'll let you know if this seems to work for me. I've been taking the recommended supplement dosages for about 8 days now--I feel like there's some improvement but not enough for me to go without my meds. I'm currently on 25mg Indomethacin twice a day. It's a wonder drug for me but I am a bit nervous about being on it long-term and would be happy to find an alternative. Every time I've tried to go off it the pain returns within hours of missing a dose.

Any info would be appreciated, and will keep you updated!
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Re: 123 Days PF And I Think I know Why
Reply #1365 - Apr 10th, 2013 at 4:35pm
 
Hey JP,

Welcome to CH.com.† You've come to the right place.

Regarding your 25(OH)D serum concentration...† The normal reference range for 25(OH)D is 30 to 100 ng/mL, (75 to 250 nmol/L)...† Accordingly, 67 nmol/L, (26.8 ng/mL) is below the normal reference range...† i.e. you're vitamin D3 deficient...

As you can see in the following chart of the time course 25(OH)D response to vitamin D3 dose developed by Dr. Robert Heaney, MD, your 25(OH)D serum concentration is down in the "red zone"

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You need to talk with your PCP or neurologist about vitamin D3 therapy.† Take along a copy of this post.

The online survey of CH'ers using the anti-inflammatory regimen with 10,000 IU/day vitamin D3, who had the 25(OH)D lab test while presenting with active CH before starting this regimen, had an average 25(OH)D serum concentration of 28.7 ng/mL, (71.75 nmol/L).†

CH'ers who experienced a favorable response to this regimen with a significant reduction in the frequency, severity and duration of their CH had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L).† This data is reflected in the color bands in the chart above.

Hemicrania Continua as a TAC, is a tough nut cousin of Cluster Headache and to date, I'm unaware of any people suffering from HC using the anti-inflammatory regimen as a preventative...† That said, there are well over a dozen migraineurs who have posted, PM'd or sent me email that they're successfully using this regimen to prevent their migraine headaches.

In case you haven't seen it... you can find the complete list of supplements used in this regimen along with doses, vitamin D3 dosing strategy, drug interactions and contraindications at the following link:

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Please keep us posted... If the anti-inflammatory regimen is effective in preventing your hemicrania continua, you'll have added an entirely new dimension to it's use...

Take care,

V/R, Batch.
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« Last Edit: Apr 10th, 2013 at 4:37pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: 123 Days PF And I Think I know Why
Reply #1366 - Apr 11th, 2013 at 3:33pm
 
Thanks so much for all this great information! I am in the UK, but I've managed to track down equivalents for pretty much all of the supplements you mention (except for the K2 and Boron, although it looks like I could get those on Amazon if I need to). I'll follow your recommended schedule and let you know how I get on. I would love to find something besides Indomethacin that works for me...seems like everyone can tolerate it for a few years and then they develop stomach problems.

Encouraging that this seems to work for migraineurs, though--my neuro said that in some ways HC seems to sit between cluster and migraine. So it seems like it's certainly worth a shot. I'll update in a couple of weeks. Fingers crossed!
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Re: 123 Days PF And I Think I know Why
Reply #1367 - Apr 11th, 2013 at 5:46pm
 
JP,

A teaspoon of honey a day will take care of your boron requirements for a lot less...† It's usually offered in a mineral formulation costing a lot more.

The vitamin K2 meaquinone-7 (MK-7) is another story.† As yet it doesn't appear to make the anti-inflammatory regimen more effective...†

That said, the basic regimen supercharges the body's capacity to pull calcium from the gut to support calcium homeostasis and ultimately build bone mineral density (BMD).

Where vitamin K2 (MK-7) comes into play is its capacity to direct serum calcium away from soft tissues and arteries, back into building BMD...

There are a number of RCTs on the use of vitamin K2 menaquinone-7 (MK-7) to reduce the risk of coronary heart disease.† See the following link for the results of one such study:

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Sooo... I'd take vitamin K2 menaquinone-7 (MK-7) even if I didn't have CH...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1368 - Apr 18th, 2013 at 8:28am
 
Checking back in and still doing the regiment and going strong.  Am having some legitimate issues with calf cramp/pain and wonder if there is any relation.  Got the bloodwork tested and have to go find out the results.  Wondering if anyone else had leg cramp issues.  Just throwing it out there, could very well be unrelated.
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Re: 123 Days PF And I Think I know Why
Reply #1369 - Apr 18th, 2013 at 9:59am
 
birdman - I had some lower leg cramping issues, did some research, and suspected that I might be overdoing it on the magnesium. I cut back to 80mg of magnesium per day and the leg cramps disappeared.
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Re: 123 Days PF And I Think I know Why
Reply #1370 - Apr 18th, 2013 at 11:13pm
 
Interesting- I also had cramping in the back of my right calf. I thought it was because I had been overdoing it at the gym on leg day.

I suppose it makes sense that this cocktail has unintended consequences that are not yet evident.
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Re: 123 Days PF And I Think I know Why
Reply #1371 - Apr 23rd, 2013 at 8:38am
 
Got my recent bloodwork back and the Vitamin D is 114.0 and they call it high.  I'm gonna call it good.  Have to look into the magnesium though.
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Re: 123 Days PF And I Think I know Why
Reply #1372 - May 1st, 2013 at 4:02pm
 
Hi everybody.† I'm a longtime lurker and have been following the D3 discussion very closely since last Fall.† Here's a quick bio of me:

31 year old male, episodic since 26.† Cycles typically last about 6 weeks.† My first two cycles were in August-September, next two were in December-January, and last one was in August-September again.† I've had bad headaches since I was very young though and was always told they were migraines (the symptoms never matched), but they did not start to reoccur in clusters until I was 26.

This last January I got by D levels tested, which came back at 14.† Hoping to preempt the next (and hopefully all future) cycles, I have been taking the following since January every day (although admittedly not with my largest meal):

-10,000 IU Vit. D3
-1,000 mg Calcium Citrate
-2,000 mg Omega 3 fish oil
-1 regular Centrum

I also started with a 50,000 IU loading dose of D3.

This is by memory but should be right.† I tried to get and use the Costco brand supplements recommended by Batch (I think the D3 is Nature's Bounty).

Anyway, despite the 4.5 months of vitamins, I've been having some light shadows for the past 2 weeks or so but haven't paid much attention to them.† They felt "normal" (for me anyway), and I've been able to drink alcohol without incident.

Last night, I woke up with a very low grade headache (prob Kip 3).† It carried the same kind of pain distinctive of CH - sharp, piercing and unrelenting pain in all the normal places, strong enough to wake me up, 1.5 hrs after sleep.† The attack wasn't strong enough to cause my eye to droop or nose to run though.† I took a 100 mg sumatriptan tablet and,† within about an hour, the pain was gone.† I've spent the day in a post-imitrex haze under constant shadow.

Historically my cycles start with a week or two of shadows, a couple low grade headaches, and then it's hell for 5-6 weeks.

Starting a cycle now would be almost five months premature.† I don't know whether this was an isolated incident (which would be pretty odd for me) or whether this is just CH being predictably unpredictable.† Before pumping myself full of prednisone and verapemil per usual, I'd like to try to make this regimen work.†

Here are my concerns/questions:

- I'm only getting between 100 and 200 mg of magnesium per day in the supplements.† Could that make a difference?
- I'm getting less than the RDA of Vitamins K and A, although there is some in my supplements.† Should that matter?
- As luck would have it, my neurologist left the country yesterday for two weeks, so I'm preparing myself for a fight to get O2 from my GP.† If he doesn't give it to me, I'll be left with triptans to abort while experimenting to make this work.† Will that mess with the regimen?
- Will verapemil be made less effective by the calcium citrate?
- Will the prednisone block the effectiveness of the D3?

Another tidbit that I find interesting - when in cycle, my ears get red and really hot a couple times per day, and I can feel the same system "activated" that gives rise to the headache.† I wonder if anybody else experiences this.

I'll look forward to any feedback and will plan to go to the vitamin store to buy more mag and Vit. K and A in the next 3-4 hours.† Thanks to everyone for their work and contributions - those of us that are gaining knowledge through your work owe you our lives and sanity (or what little of it is left).
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Re: 123 Days PF And I Think I know Why
Reply #1373 - May 1st, 2013 at 4:31pm
 
Hey Ibh,

Thanks for the feedback...† For starters, cut the calcium dose in half and double the magnesium.

By now, your 25(OH)D serum concentration should be up around 85 ng/mL after dosing on 10,000 IU/day for over 4 months, but just to make sure, ask your PCP for another lab test.†

Viral infections like colds and flu or even allergic reactions can put a drain on 25(OH)D reserves and available 1,25(OH)2D3, calcitriol, the active hormonal metabolite...

If you've experienced any of these problems in the last few weeks and even if you haven't, doubling up on your vitamin D3 intake to 20,000 IU/day for a week or two may help.

Pick up a small package of chicken livers and bacon...† Wrap the livers in a strip of bacon and pin with a toothpick or skewer so you can rotate them under a broiler...† A dozen of these tasty little morsels will give you all the vitamin A (retinol) you'll need for a few weeks...† Chicken livers are also a good source of vitamin K2 (MK-4).

The other form of vitamin A (carotenoids) can help but it's not as effective as retinol... Carotenoids can be found in carrots, sweet potatoes, spinach, kale, collard greens, papaya, bell peppers, and tomatoes.

Hope this helps.† Please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1374 - May 1st, 2013 at 4:42pm
 
Thanks, Batch.  I'll boost the magnesium and cut the calcium and keep you and the board in the loop.  Here's hoping...
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