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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 279112 times)

anubis44

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #400 - Sep 30^th, 2015 at 7:34am

Yes, thanks Mike. I started the Batch regimen last Saturday with a loading dose of 50,000IU of D3 right off the bat. That much seemed to make me feel quite a bit better, and I did get a whole night's sleep for the first time in a few weeks, which is one reason I am optimistic about the longer term efficacy of the regimen. I subsequently took 20,000IU of D3 just after dinner, on Sunday and Monday nights. However, as I had a CH yesterday morning at about 11am, and a second one not long after taking yesterday's dose of 20,000, I decided to boost my D3 intake back up to 50,000IU (as per a recommendation I saw Batch give another CH sufferer in this thread) by taking another 30,000IU in an attempt to speed the increase in my 25(OH)D blood serum level. Also as per a recommendation in this thread, I also took 50mg of Benadryl, as I wondered if a histamine response might explain why the Batch regimen had failed to prevent two CH 3 days into the regimen.

Well, I'm writing this early this morning, as I started to feel like another CH was coming on at 6:45am which woke me up. I decided to just take another 50mg of Benadryl and a couple of extra strength advils to try to bring down any inflammation, and so far, it seems they've halted the onset of a full CH. Of course, this is only one instance, so I'm going to try this again at the next onset of a CH to see if it works.

I'll keep you all posted. Incidentally, it is so wonderful to have the people on this site, and the site itself, as a resource. Although my girlfriend is a gem and is extremely understanding and comforting, the support and advice of fellow CH'ers is immeasurable. I firmly believe now that I will figure out a working treatment regimen that works for me, and publishing what works for me, I know I will also be helping others. That means a great deal to me, as I wouldn't wish the pain of CH on even the worst of enemies.

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shadia

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #401 - Sep 30^th, 2015 at 7:43am

Welcome anubis 44, this site saved my sanity,especially Batch what a great man. I am on the regimen myself , before findind this site i had 24 hres shadows and CH up to 5 times a day for one month, thought i would go crazy. But the regimen really workes since 2 weeks i had on ch took 02 and a shot of imitrex then it was gone . So i hope you have the same results with vit D3 , and remember to have your bllod work for vit D3 checked out, i was low like Batch predicted.

This to shall pass

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thierry

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #402 - Sep 30^th, 2015 at 8:04am

Hi Anubis,
delighted to hear that another CH sufferer is taking the Batch D3 regimen.
It can take a few weeks before it becomes 100% effective so hang in there, you're on the right track.
I have found that when i started the regimen, my CH symptoms became a bit unusual, sometimes getting hits a a time when i wouldn't usually get them, they even changed side once or twice., but then it all went away

Now pain free since I started the regimen in march 2013.
YIPPIE.
All the best

« Last Edit: Sep 30^th, 2015 at 8:27am by thierry »

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Anti-Inflammatory Vitamin D3 Regimen and Survey Reply #403 - Sep 30^th, 2015 at 8:19am Welcome to the nut house Anubis! I started the Batch Regimen in March of 2010 and have been headache free ever since, this after over 30 years of episodic CH. I hope it does the same for you. Joe
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anubis44

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #404 - Sep 30^th, 2015 at 8:43pm

Thanks for the warm welcome, Nadia, Thierry and Giuseppe.

After taking a 50mg dose of Benadryl around 6:45am this morning, I managed to abort the oncoming CH. Took another 50mg dose at noon just for good measure, and still headche-free this evening as I write this at 8:41pm. Also took 40,000IU of D3 in my Batch regminen, and will taper it down to 20,000IU for tomorrow as per the usual dose for this part of the regimen (still in first week).

Time will tell if this works!

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anubis44

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #405 - Oct 1^st, 2015 at 1:03pm

So a quick update. The Benadryl/Advil combination seems to be keeping me CH free, and I highly doubt it is a coincidence, as I've been feeling a sense of shadows off and on since yesterday that just never seem to turn into CHs. I should also note that I've been religiously keeping away from things I'm pretty damn sure can trigger a CH, like Monosodium Glutimate and alcohol (haven't had a drop in over a year and change-even a splash of red wine in a stew recipe could bring one on for me!), and dark/white chocolate (the Lindt brand especially triggers them for me). Frankly, I love chocolate, so I still eat milk chocolate sometimes (in a candy bar or ice cream bar), and I'm pretty sure that's been triggering them, too.

No matter what the specific details of individual CH sufferers, I am now convinced that inflammation and strong histamine response is a major factor in the onset of my CHs at least, and I am increasingly convinced it's the Benadryl that's largely keeping my CHs at bay right now! I'm going to try taking just the Benadryl and no Advil to see if it still keeps them from coming on. But I can't emphasize enough that you must also stay away from foods/alcohol and probably tobacco, that can also trigger a histamine response, as your bodies' histamine response can probably overwhelm even a maximum dose of Benadryl. If you want to be pain-free, you're going to make yourself do this.

Thank you so much, Batch, for mentioning the Benadryl and how, as it's a first generation anti-histamine, it can cross the blood-brain barrier! I had tried another anti-histamine (I'll publish the name when I get home) in desperation a few weeks ago, but it didn't help, so I figured CHs were not related to histamine response! Now I think only the antihistamine diphenhydramine, or one very similar to it, can abort a CH, but you've got to take the full 50mg max dose either at regular, pre-emptive intervals throughout the day (in 4-6 hour increments), or at the very least, the very instant you start to sense a CH coming on so it has time to dissolve in your stomach and take effect.

I'll continue to update you all, but really, this is a godsend. I actually feel like I'm able to control my CHs and prevent them before they even begin. This is a sense of control over 'the beast' I've never had before. Let's hope that I won't continue to need Benadryl to ward off CHs indefinitely, and that the Batch regimen of D3 will work its magic on me, too.

« Last Edit: Oct 1^st, 2015 at 11:50pm by anubis44 »

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anubis44

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #406 - Oct 2^nd, 2015 at 3:11pm

So the plot thickens.

Still no actual full-on CHs, but I did start to get one last night at about 5:30am. Took two 25mg Bendryls and 2 extra strength Advils and managed to avert a CH by a narrow margin. But for me, this is major, MAJOR progress. I now know that 50mg Benadryl (diphenhydramine) and 800mg Advil (ibuprofen) will abort a CH if taken early enough. I tried just taking the Benadryl, but after 15 minutes, with that all-too-familiar sensation of imminent CH pain threatening to break through in my skull, I downed the two Advils at 5:45am. I'm happy to say that these two managed to wrestle the CH to the ground and abort it!

If Benadryl and Advil together can prevent or abort a CH, how exactly are they doing that? And why were they able to take effect before the onset of the CH? Normally, a CH would hit me full force within 5-10mins of me noticing one is coming. This last time, I was able to sense it coming a full 20 minutes or more early--enough time in which to take the Benadryl and the Advil. So, my CHs seem to be weaker or at least, taking longer to start. This is probably because of the high Vitamin D3 regimen. But why?

Which has got me researching. What I have just read is really quite interesting. Ibuprofen works by: "inhibiting the synthesis of prostaglandins, which are fat-like molecules derived from arachidonic acid, which are involved in mediating inflammation (swelling), pain, and fever." (Wikipedia - "Ibuprofen" entry)

So I looked up prostaglandins (wikipedia - "Prostaglandins" entry), and found out that:

Prostaglandins are produced following the sequential oxidation of arachidonic acid, DGLA or EPA by cyclooxygenases (italics mine) (COX-1 and COX-2) and terminal prostaglandin synthases. The classic dogma is as follows:

      COX-1 is responsible for the baseline levels of prostaglandins.
      COX-2 produces prostaglandins through stimulation.

However, while COX-1 and COX-2 are both located in the blood vessels, stomach and the kidneys, prostaglandin
levels are increased by COX-2 in scenarios of inflammation and growth."

Another Sherlock Holmes 'A-ha!' moment! So, COX-2 (cyclooxygenases) "produces prostaglandins through stimulation". That's the one we're interested in, as it's the COX-2-produced prostagladins that likely cause the inflammation responsible for our CHs, which makes sense because they cause inflammation, and "have a short half-life." Since our CHs tend to only last 45 mins or so max (yes, I've had one last an hour at full-strength, too!), it would seem that whatever causes them is rapidly produced in our bodies, and dissipates in strength comparatively rapidly, too.

So I looked up COX-2 under "Cyclooxygenase" in wikipedia and noticed under the section "Natural COX inhibition", the following list:

-Culinary mushrooms, like maitake, may be able to partially inhibit COX-1 and COX-2.[3][4]
-A variety of flavonoids have been found to inhibit COX-2.[5] (italics mine)
-Fish oils contain a natural inhibitor of COX.[6] (italics mine)
-Hyperforin has been shown to inhibit COX-1 around 3-18 times as much as aspirin.[7]
-Calcitriol (vitamin D) significantly inhibits the expression of the COX-2 gene.[8] (italics mine)

A-ha! That last line is critical, so it bears repeating. "Calcitrol (Vitamin D) significantly inhibits the expression of the COX-2 gene."

So, Batch's high Vitamin D3 regimen probably works because vitamin D "significantly inhibits the expression of the COX-2 gene." This means, simply put, that having lots of vitamin D in your system will drastically curtail the potential of your body to produce prostaglandins, the very things which cause the inflammation (along with histamines, if you're also exposed to something which triggers a histamine response) which strangles our tri-geminal nerve! However, because the vitamin D has to be present at all times to inhibit this gene's expression, you must continually maintain a high 25(OH)D serum level (level of vitamin D3) in you blood at all times for this to work.

Meanwhile, in the event that something you're eating or are otherwise exposed to produces a strong histamine and/or prostaglandin response in your system (like, say, acetaldehyde), even with the high 25(OH)D serum levels inhibiting the COX-2 gene, you may still need to augment your anti-inflammatory regimen by taking a CH1 receptor inhibitor that crosses the blood-brain barrier, like Benadryl, to help reduce the histamine response in the brain tissues surrounding your tri-geminal nerve, and for good measure, a good high dose of Ibuprofen, to further inhibit the synthesis of prostaglandins in the immediate term. Ideally, however, you should stay away from sources of acetaldehyde, if possible.

It's also probably a good idea to eat a diet rich in flavanoids, which also inhibit COX-2 prostaglandin production, like ginko-bilboa, bananas and blueberries, and finally, stay away from acetaldehyde, the chemical that triggers CHs that's produced when you drink alcohol, and is also in things like coffee, bread and some ripe fruits.

So, my current (evolving) CH regimen is:

1) Keep 50mg of Benadryl on me at all times, along with 2x400mg Extra Stregnth Advil, ready to pop at the slightest hint of a CH. So far, they have been spaced far enough apart that I'm still within the acceptable daily dose limits for both. I'm also keeping a Zomig 5mg in my pocket, just in case, but so far, have not needed one since I started Benadryl/Ibuprofen as an abortive.
2) Continue with the Batch D3 regimen, possibly even boosting the omega-3 fish oil levels in order to hopefully reduce the requirement for Advil, as they are both COX inhibitors, and I'd rather take more fish oil than Ibuprofen if it'll work.

As usual, I shall keep you all apprised of my results!

« Last Edit: Oct 5^th, 2015 at 3:05pm by anubis44 »

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Batch

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #407 - Oct 4^th, 2015 at 5:23pm

Hey Anubus,

I love reading feedback like yours and admire your hunger for information on the pathogenesis and treatment of cluster headache... The more CH'ers read about CH, what makes it tick, and how best to prevent it... the better.

Inflammation (more specifically neruogenic inflammation), from any cause makes CH worse so your comments on Omega-3 fish oil and calcitriol, the active hormonal form of vitamin D3 and their capacity as anti-inflammatory agents are spot on.

This is why I call the formulation of vitamins and minerals I take to prevent CH... the "Anti-Inflammatory Regimen."

Genetic expression is clearly part of the mechanism of action enabling vitamin D3 to prevent CH. Down regulating/supressing the production of CGRP (Calcitonin Gene-Related Peptide) in neurons within the hypothalamus and trigeminal ganglia is one of the leading candidates in vitamin D3's autocrine and paracrine signaling associated with genetic expression.

CGRP is elevated during the pain phase of migraine and cluster headaches and it's one of the leading causes of neurogenic inflammation and pain associated with CH.

I agree with your regimen and disciplined approach of determining a causal relationship... with the exception of taking the NSAID Advil (ibuprofen). All of the NSAIDs including aspirin result in bleeds in the GI tract. While taking NSAIDs for a day or two is likely ok, there's a growing body of medical evidence that taking them for weeks or months appears counter productive.

A review of the FDA's Adverse Reaction Database of information reported over the last 10 years revealed the following statistics:

Over The Counter NSAIDs
Deaths due to NAPROXEN (Aleve) - 142
Deaths due to ASPIRIN    - 645
Deaths due to TYLENOL    - 964
Deaths due to EXCEDRIN - 500
Deaths due to IBUPROFEN       - 661

Deaths due to Vitamin D3                 - 0

As vitamin D3, a.k.a., calcitriol and 1,25(OH)2D3 also has the capacity to down regulate the production of prostaglandins... is taking ibuprofen really necessary?

Take care and please keep us posted.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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anubis44

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #408 - Oct 4^th, 2015 at 10:04pm

Batch, thanks for your kind response.

I agree that taking Advil (ibuprofen) is not ideal over the long-term. However, what I'm finding at this stage of the regimen is that I'm faced with the choice of enduring a lower level CH (about 2-3) in my head that feels like the beginnings of a CH, take a couple of advils, take a Zomig or start taking verapamil again. I am determined to stay off verapamil from now on, and the Zomig is... well, simply less desirable than taking some advil if the advil will do the trick, in my view. At this point, even the extremely high levels of D3 I've been taking haven't been sufficiently curbing my bodies production of protaglandins, so yes, I'm finding I still need the advils right now. Perhaps my 25(OH)D serum levels haven't quite made it over the minimum threshold hump of 60ng/mL yet?

I've now been on you regimen for just over 1 week, and have noticed that full-blown CHs have stopped (ie. the 'stabbing' sensation CHs). What I have been getting since I had my last full-blown CH last Tuesday (3 days into the regimen) is the weaker level CHs--the pressure on the nerve (so, less than about a level 3), but without it turning into the stabbing pain sensation (which I would consider 6-7 or higher). So the D3 IS helping to reduce the intensity of the CHs in my opinion, but they are happening, albeit at a noticeably reduced strength and onset speed. This is also important. Before the regimen, my CHs would waylay me within 5-10 minutes of the first sensations. Now, I have the luxury of time to go grab the Advil and possibly, the Benadryl, and know that it will work soon enough that I won't need a Zomig. Right now, Advil (and possibly, Benadryl, too) is doing the job of arresting these (I'm using the quick release gel caps - 2x400mg).

On a more pro-active note, I'm also trying to help the D3 inhibit my body's production of protaglandins by eating more things that are rich in flavinoids (bananas, black tea, blueberries, apples, peaches, pears, strawberries, etc.), which are also known to reduce prostaglanding production. Hey, I was able to eat dark chocolate covered figs yesterday and today without risking a brutal ice-pick in my skull for the first time in a few years! Your regimen MUST be doing something for me already!

I'm also staying away from coffee and bread to the extent possible and really ripe fruit, as these are all sources of acetaldehyde, the thing that gets produced in your liver when you drink alchohol, a classic CH trigger, at least until I can be certain I won't get a CH from consuming any of these. So it's black and green and herbal teas for me!

Again, I am dedicated to staying on the D3 regimen, and I will continue to meticulously record my results. I'm eagerly awaiting my 25(OH)D serum level results taken last Tuesday, but they'll probably take a couple more weeks to get back to me.

« Last Edit: Oct 4^th, 2015 at 10:08pm by anubis44 »

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: Anti-Inflammatory Vitamin D3 Regimen and Survey Reply #409 - Oct 5^th, 2015 at 1:26am Anubis, Thanks for the update and I understand the ibuprofen... although it usually has no direct effect on CH... We'll know more when your 25(OH)D lab results come back. In the mean time, stay the course... you're doing everything I'd do. Take care and please keep us posted, V/R, Batch
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blacklab

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #410 - Oct 5^th, 2015 at 4:27am

Hi anubis
great news your getting some results with the regime. My advice is to stick with it for the long term.
I've probably been one of batches problem cases, for me it wasn't an instant success, in fact didn't really have an effect for some months, reducing the intensity of the hits but still needing imigran and continuing on with verapamil. But over the journey and batches dedicated help, I've managed to get my vit d levels to where I need them, sorted out my gut with a few months on a really good probiotic, be off verapamil and only need the occasional red bull should a shadow rear its head.
I like the methodical way you are treating the regime, rather than take someones word for it, your cross referencing the actual benefits of all parts of the regime parallel with actual drugs we are prescribed. My first neurologist prescribed ibuprofen and fast acting verapamil, I was knocking back ibuprofen like lollies, didn't know that imigran existed until I was in such a mess and found another neurologist. I think everybody reacts differently to both the regime and indeed prescription drugs and its just a case of finding that sweet spot or balance.
Its taken me a fair bit longer than most, but I have my life back now, not completely pain free ( yet ) but compared to before I'd have to say 90 % better off.
Good luck with your quest.
regards
colin

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anubis44

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #411 - Oct 5^th, 2015 at 1:12pm

Thanks for the supportive comments, Colin.

Just another quick update. Less than an hour after my last comment last night, I started feeling a CH coming on (around 11pm). I downed a couple of Advils and a couple of Benadryls, something that has put paid to the other minor CHs that have attempted to happen since starting the Batch D3 regimen last Saturday September 26th, but after the CH intensity slowly increased, after about 15 mins, I used a Zomig 5mg nasal spray. However, after reaching about an intensity 5-6, the pain still did not abate. In addition, the telltale indicator to me that this was at least a partially an allergic-type response CH was that I actually sneezed even though I had no cold or other sneeze-inducing condition immediately prior to the onset of the CH! What the heck was going on, I wondered? The last time I had a CH this strong was last Tuesday September 29th, in the early evening. So what was similar about last night and last Tuesday evening? Well, I was assembling a new IKEA CD particleboard shelving rack last Tuesday, and last night I had been assembling an IKEA particleboard Billy bookcase. Hmmm....

So I wondered, is it possible that there are high enough levels of Acetaldehyde in the IKEA particleboard shelves to trigger a CH? After all, Acetaldehyde is the thing that alcohol produces in your liver that triggers CHs, too. So I looked it up. Low and behold, the apparent answer seems to be... yes. There are significant amounts of acetaldehyde in new particleboard and laminates. Did this cause the only two CHs I've had since starting the Batch D3 regimen that didn't readily succumb to Ibuprofen/Bendryl, or even Zomig? I think it's seriously worth considering. I've even just now recalled starting CHs whenever I've been walking around IKEA's showroom for a little while, so definitely, it IS worth considering acetaldehyde off-gassing as a possible trigger.

I am now researching the question of what might help us process acetaldehyde into acetic acid as quickly as possible, in the hopes that this might lead to a preventative for CHs in the case of acetaldehyde as a trigger.

As super quick aside, this morning, I woke with a bit of nerviness, which promptly abated once I had brushed my teeth and completely vanished by the time I had eaten a banana on my way out the door to work. The tooth-brushing would have killed the (comparatively small) build-up of acetaldehyde in my mouth that naturally occurs from plaque producing it overnight, and the banana is a source of flavinoids, which help inhibit the production of prostaglandins! But the banana was not fully ripe yet, so it would not have contained any significant amount of acetaldehyde as result of fermentation that comes from full-ripeness.

« Last Edit: Oct 5^th, 2015 at 1:21pm by anubis44 »

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Anti-Inflammatory Vitamin D3 Regimen and Survey Reply #412 - Oct 5^th, 2015 at 1:36pm Hey Anubis, Sounds like a theory worth investigating further. Let us know how you get on. In the meantime, stay away from IKEA stores and DIY in general. Keep well. Peter.
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Batch

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #413 - Oct 5^th, 2015 at 4:28pm

Anubis,

A couple observations... For most CH'ers, sleep brings on a perfect storm... The depressed respiration rate increases the arterial partial pressure of CO2 and decreases the arterial partial pressure of O2... Both of these conditions can easily trigger and sustain a CH...

When you wake up in the morning, stand and start moving around... your respiration rate increases and that flushes excess CO2 out with exhaled breath and increases O2 with every inhaled breath... so you feel better...

The second observation... IMHO, If you're trying to fend off an approaching CH... you're better off taking a 30,00 to 50,000 loading dose of vitamin D3 sublingual, than swallowing an NSAID and Benadryl.

By sublingual, I mean pop the vitamin D3 softgels between your back teeth and swirl the contents under your tongue and keep them there for at least 5 minutes before swallowing or drinking any fluids...

The sublingual administration gets vitamin D3 into the blood stream and up a maximum serum concentration within minutes... where swallowing the vitamin D3 can take up to 12 hours to reach a maximum serum concentration...

Give this a try the next time you think the beast is going to jump ugly...

Take care and please keep us posted.

V/R, Batch

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anubis44

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #414 - Oct 5^th, 2015 at 10:05pm

Batch, thank you so very much for continuing to provide personal feedback to me! It's very, very appreciated!

As you can see from my frequent posts, I'm entirely focused on getting to the bottom of this dreadful medical condition once and for all, with at least an extremely effective treatment if not a cure, that means for EVERYBODY who now deals with CH, not just me. Now that I may be nearer to this holy grail for myself than I ever imagined possible, I wonder if I might have saved my marriage somehow, which is currently going through the process of legal papers, had I known about this treatment regimen earlier. But somehow, I have to believe that what has happened is all for the best. I see that you published your initial posts back in late 2010, but somehow, I didn't come across any mention of a high D3 dosage regimen as an effective treatment on the web until Saturday Sept. 26th of this year. There is no mention of high dosage vitamin D3 treatment in the wikipedia entry on 'Cluster Headache', but there SHOULD be.

So, on a more positive note, I just got my results of my 25(OH)D serum level over the phone from my doctor's office. Bear in mind that I had started the D3 regimen with a 50,000IU dose on Saturday September 26th, and that I had also taken another 40,000IU the following evening (Sunday Sept. 27th), and a 20,000IU dose of D3 on Monday Sept. 28th, all in an attempt to get the serum level up as quickly as possible. My blood test was performed around 12:30pm on Tuesday Sept. 29th, before my 20,000IU dose of D3 for that day (I've been taking the regimen just after dinner each day), so it reflects the 25(OH)D serum level after 3 days of the regimen, and ~110,000IUs of D3.

So, my 25(OH)D level reported by the lab was 63nm/mL, which my doctor considered 'low', and she recommended that I continue the high D3 regimen! To be honest, I was surprised that it was even that high, considering the crazy CHs I had been experiencing just immediately before I started the regimen. I guess I've been able to load up on D3 effectively enough to get it up there even after only 3 days of D3 loading! God only knows what it must have been back on Saturday Sept. 26th, the day I had my girlfriend drive me to the hospital after a level 10 CH.

So, other than the faint shadow this morning that seemed to disappear after I got up and brushed my teeth and ate a banana, no CHs today! Keeping my fingers crossed and being mindful about scents and chemicals around me that might be triggers.

« Last Edit: Oct 5^th, 2015 at 10:06pm by anubis44 »

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #415 - Oct 10^th, 2015 at 4:36pm

Anubis,

Thanks for the update and your lab results. Even with the vitamin D3 loading schedule, it can take a couple weeks to a month to elevate your 25(OH)D up to the target serum concentration of 80 ng/mL, 200 nmol/L.

The rules for updating Wikipedia make it difficult for me to make an input on preventing cluster headache with 10,000 iU/day vitamin D3.

That said, you can go to Vitamin D Wiki website at the following link where I have a page on the anti-inflammatory regimen with reports of efficacy provided by CH'ers like you.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Take care and please keep us posted.

V/R, Batch

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #416 - Oct 27^th, 2015 at 12:40pm

Haven't logged on in a while and it was great to see Batch is still the man!! Have a question that I think I posed to you a while back but couldn't find. I have been doing the D3 and fish oil for a while and will do it forever. Have been pain free for a while(I need to look at my last sign on to fi gure out since when). But experience a lot of leg and arm stiffness, more achy bones than muscular. I realized that I haven't been taking the calcium, magnesium, etc. Only the D3 and fish oils. Could this be the reason for the aches?? Would love your thoughts

« Last Edit: Oct 27^th, 2015 at 12:41pm by birdman »

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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: Anti-Inflammatory Vitamin D3 Regimen and Survey Reply #417 - Oct 27^th, 2015 at 12:50pm I take the fish oil, magnesium,and the D3 for around 3 yrs haven't experienced that . Mark.
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: Anti-Inflammatory Vitamin D3 Regimen and Survey Reply #418 - Oct 27^th, 2015 at 1:49pm Hey Birdman, it does sound like you could be suffering a Magnesium deficiency. You could do with adding Vit A, Calcium, Magnesium, SuperK, zinc and Boron to your daily regimen if you want to take it as per Batch. All availlable on iberb All the best
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Batch

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #419 - Oct 27^th, 2015 at 11:37pm

Hey Birdman,

Thanks for the update and question. The short answer is yes. You may have a wide range of deficiencies starting with magnesium, calcium, zinc, boron, vitamin A and many of the B vitamins.

There's a sufficient body of evidence indicating the enzymatic process of hydroxylating (metabolizing) vitamin D3 by adding a hydroxyl [-OH] group to make 25(OH)D and a second hydroxyl group to make 1,25(OH)2D3, consumes magnesium.

Without supplementation, magnesium levels within the cells can drop while taking 10,000 IU/day vitamin D3 and this can result in an overall magnesium deficiency as well as a calcium - magnesium imbalance.

Bottom line, we need to take all the vitamin D3 cofactors in the anti-inflammatory regimen to ensure effective CH prevention and avoid deficiencies.

Take care,

V/R, Batch

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engels100

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #420 - Oct 31^st, 2015 at 2:20am

Hi all

I have a couple of questions re the D3 regimen, which doesn't appear to be working for me. I'm an episodic sufferer and have been on the full D3 regimen since March 18th 2015 after some nasty shadows. I normally get the clusters in October each year for around 6 weeks. It's now October and, i'm sad to report, my cycle started again - worst its ever been with 4-6 attacks in a 24 hour period, luckily aborted with Oxygen. I just had my bloods done again (23rd October 2015) and 25(OH) was 205 nmol/L. That's after 7.5 months on the regimen. I would have thought that i should be up in the 25(OH) green zone at this concentration. So, my questions are:

* should I ramp up the daily D3 dose to 20,000IU for a week or two to see if can go pain free (chasing the 215nmol/l target) and then drop down again to 10,000IU? I note that some sufferers who went pain free were up at 371 nmol/l according to Batch's survey
* if my serum was at 205nmol/l after 7.5 months on 10,000IU, does this mean the maintenance dose is potentially too low for me to achieve a higher PF serum concentration? Would my maintenance dose actually need to be higher? I note the GrassRoots health study indicated taking up 40,000 IU per day is unlikely to cause toxicity, but i'm nervous to push higher than 10,000 for protracted periods as a maintenance dose
* With my serum concentrations already technically high, do i run the risk of entering D3 toxicity territory if i ramp up to 20,000 IU for a few weeks? For how long could i risk inflating the D3 dose to 20,000?
* The D3 survey running on this site states "78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free". That means there are a bunch of us who are not going pain free. I wonder if this is to do with even higher rates of D3 serum metabolism and that these individuals would benefit from taking more of the vitamin.

All thoughts most appreciated.

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blacklab

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #421 - Nov 1^st, 2015 at 1:01am

Hey Engles, I too am in Aussie and get hit the same times as you. 200 nmol is the green zone when you convert it from ng. I have had to go up to 240 nmol at times in an attempt to go pain free. Intoxication, well my blood tests showed absolutely no intoxication being at that level at all !! You are quite safe. I get bloods done every 4-5 months and can basically pick what my levels will be.
The big question is what was your level when you stated ?
Have you taken the course of Vit B's that was recommended and listed in the regime ?
Are you taking all of the Vit on the regime ?
I have dropped the calcium as my diet is high in calcium, but, its very important to take everything else.
It took me 2 or 3 cycles to finally get to a relative pain free state, with the Benadryl being a great addition recently with our onset of spring.
I still go thru cycles, I feel when they come, I'm just tapering off one that's hung around for a good 6 weeks. I get the shadows, with the occasional break thru kip 2, and that's as far as they get. So compared to before I wasn't on the regime, Its an absolute life saver and I can deal with the symptoms I get now very easily. everyone react differently, some go completely pain free, and others have dramatically reduced symptoms ( like me ).
As far as ramping up on the D3, I had no problems taking a50k dose then 6 days of 20k D3 when symptoms appeared , as I said, that would lift me to about 240 nmol with no intoxication issues at all and generally eased the cluster effects. I'm a firm believer of those regular blood checks and getting your G.P on side, mine is now convinced of the regime's benefits and see's the results for me over my journey over the last 2 years.
Batch will more than likely chirp in and offer suggestions, My advice, is to stick with it and listen to everything that Batch has to say and follow his advice to the letter !!!!!
good luck
colin

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Batch

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #422 - Nov 1^st, 2015 at 5:54am

G'Day Engels,

As Colin pointed out, your 25(OH)D is spot on in the middle of the green zone at 205 nmol/L. What I suspect may be happening is you've a sub-clinical allergic reaction that's been running for some time...

By sub-clinical, I'm saying no outward or obvious allergy symptoms... Just because you haven't noticed them doesn't mean they're not there. Even people who are relatively immune to allergies still experience them albeit at a low or sub-clinical level.

During an allergic reaction i.e., inflammation, mast cells (part of the immune system) in the skin, lining the nasal passages, lungs and GI tract start releasing histamines.

During typical allergic rhinitis, also known as hay fever or pollinosis, our immune system overreacts to allergens such as pollen, mold spores or other chemical toxins and we experience a runny or stuffy nose, sneezing, red, itchy, and watery eyes, and swelling around the eyes. Guess what... The brain is suffering from a similar inflammation during an allergic reaction except it's called neurogenic inflammation.

Here is where an allergic reaction hits cluster headache sufferers the hardest... When neurons within the hypothalamus and trigeminal ganglia are insulted by histamine from an allergic reaction, they trigger the release of calcitonin gene-related peptide (CGRP) and Substance P. Both are key parts of the cluster headache pathogenesis. CGRP triggers rapid neurogenic inflammation and severe pain.

The term ‘neurogenic inflammation’ has been adopted to describe the local release of inflammatory mediators, such as substance P and CGRP, from neurons. Once released, these neuropeptides induce the release of histamine from adjacent mast cells. In turn, histamine evokes the release of substance P and CGRP; thus, a bidirectional link between histamine and neuropeptides in neurogenic inflammation is established.

What all this means is a simple allergic reaction can trigger a chain reaction and self-sustaining perfect storm within the brain producing more CGRP and Substance P than can be down-regulated or suppressed by vitamin D3... hence no response or at best, only a limited response to the anti-inflammatory regimen. In other words a CH'er suffering from an allergy whether obvious or sub-clinical (no outward or obvious symptoms) becomes refractory to the anti-inflammatory regimen's capacity to prevent CH...

This same mechanism likely accounts for the CH'er being refractory to most other CH prophylaxis and likely makes oxygen therapy less effective with longer abort times.

Fortunately, I stumbled across a solution for this self-sustaining perfect storm last March during a very heavy pollen fall from Alder and Big Leaf Maple trees that coated my black pickup truck turning it gray.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Within hours of the pollen fall starting... it looked more like a bad dust storm, I began to experience symptoms typical of allergic rhinitis... A few hours later during a nap, the CH beast jumped ugly. I aborted same with hyperventilation and oxygen therapy, but was concerned like you, that 10,000 IU/day vitamin D3 wasn't sufficient during an allergic reaction...

I began loading vitamin D3 at 50,000 IU/day (chewing the softgels and swirling the contents under my tongue and holding them there for 5 minutes... i.e., sublingual). I also doubled my magnesium intake to 800 mg/day... After three days on this dosing schedule, the CH beast was still jumping ugly 3 to 4 times a night.

Now you need to understand... that as the guy who developed the anti-inflammatory regimen in October of 2010 and who had remained pain free ever since
(with the exception of a couple 25(OH)D burn down tests a year where I intentionally stopped taking the entire regimen until I got hit...) getting hit like this was a wake-up call...

About that time the clue bird made a low pass and my Good Idea light came on bright and flashing... TREAT THE ALLERGY !!!

After a few hours researching the pathogenesis of allergic rhinitis and available antihistamines, I selected Benadryl (Diphenhydramine), a first-generation antihistamine that passes through the blood brain barrier to block H1 histamine receptors in neurons throughout the brain and in particular, the hypothalamus and trigeminal ganglia where production of CGRP and Substance P are highest. Second- and third-generation antihistamines, the "non drowsy" type, cannot do this so will not be effective in blocking the histamine receptors in neurons throughout the brain.

I started dosing at 25 mg Benadryl (Diphenhydramine) four times a day. Within 3 to 4 hours, my allergy symptoms began to subside. Within 12 hours, the CH beast was nowhere to be found and I was back CH pain free.

After a few days on this dosing schedule, I reduced my vitamin D3 intake down to 20,000 IU/day and the Benadryl (Diphenhydrmine) down to a 25 mg tablet twice a day. I stayed on this dosing schedule until the pollen fall was over... ~ another 2 weeks, then dropped my vitamin D3 intake back down to the 10,000 IU/day maintenance dose and stopped the Benadryl (Diphenhydramine).

So there you have it... The likely reason you've not responded to this regimen and the same reason many of the other 18% of CH'ers don't respond to it either. As a side note, I've had several of the anti-inflammatory regimen "non responders" and partial responders, start a course of Benadryl (Diphenhydramine) at 25 mg twice a day and report they are now experiencing a pain free response.

There are a few other anti-inflammatory and immune system helpers you can try. A 1,000 mg tablet of vitamin C taken five to six times a day (every two hours) will help jazz up your immune system and also help quell inflammation.

Why vitamin C? Vitamin C, also known as ascorbic acid, is a water-soluble vitamin. Unlike most mammals and other animals, humans do not have the ability to make ascorbic acid and must obtain vitamin C from the diet.

Vitamin C is very safe... However, like magnesium, if you take too much... you'll get loose as a goose...

Dr. Linus Pauling used to take 19,000 to 20,000 mg of vitamin C a day... He had lots of critics when he suggested vitamin C doses like this... but then he had two more Nobel prizes than any of his critics and had outlived most of them when he passing away at the age of 91...

You can read about the Linus Pauling therapy at the following link:

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The Linus Pauling Institute Micronutrient Information Center at Oregon State University has a very informative section on Vitamin C at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

"Although the upper intake level (UL) for vitamin C is 2000 mg/day, there is no reliable scientific evidence that large amounts of vitamin C (up to 10 grams/day in adults) are toxic or detrimental to health."

Like vitamin D3 and the prevention of rickets, the amount of vitamin C required to help prevent chronic disease is higher than the amount required for prevention of scurvy.

If you're like me, and read through the entire fascinating link on vitamin C and what it can do for you healthwise, you'll run to check the medicine cabinet... and if there's none there, you'll pick some up at the next opportunity..

Curcumin (Turmeric) is another anti-inflammatory. 400 mg/day should be sufficient. Just be sure to take it on a full stomach as 400 mg is equivalent to the amount of turmeric you get 3 or 4 curry dinners...

I realize this is a long read... but I hope this helps. Just make sure you keep your PCP or neurologist in the loop when taking anything new...

Take care and please keep us posted.

V/R, Batch

« Last Edit: Nov 2^nd, 2015 at 3:07pm by Batch »

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Peter510

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #423 - Nov 1^st, 2015 at 6:06am

Hey Engels,

I'm similar to Colin, in that I have been on D3 and all the cofactors since January this year, and I too am not fully clear of the Beast. Shadows and Kip 2/3 's mainly, with the occasional serious one thrown in.

I am chronic, meaning I get hit single everyday of the year with no seasonality whatsoever.

The D3 has been a life changer for me too, in that what I deal with now is nothing compared to before. My wife has been on it since April after some surgery and she says the general health benefits are doing her a world of good, and the speed of her recovery was noted by her Surgeon.

So, as Colin says, stick with it, even if it takes time and keep the serum levels monitored.

Best of luck,

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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engels100

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #424 - Nov 1^st, 2015 at 6:50am

Hey blacklab, thanks for the advice, gives me some hope. Very interesting you've had to elevate to 240nmol/L. Does that mean you were experiencing severe attacks at 200 but that these disappeared when you elevated to 240? Are you on the D3 regimen year round or do you just take when you feel a cycle starting - hitting it with the 50K dose then 6 days at 20k? Once you've done this and/or achieved 240, do you then drop back down to 10K maintenance dose?

I'd still like to understand whether i need to elevate my d3 maintenance dose above 10K to achieve a static serum concentration above 205, which isn't getting me to PF. Or, should my strategy be use 10K maintenance dose which i accelerate whenever i get breakthrough clusters (50K x 1day; 20K x 6days; dropping back down to 10K maintenance)? I must say that in the 2 days since inflating my D3 from 10K to 20K, the number and severity of attacks has dropped. In some instances, awoken by a few false alarm shadows that may or may not have built, so i aborted with oxygen anyway.

I sure am on the full monte D3 regimen:

Swisse Men's Ultivite 50+ 1 tablet/day
Vitacost Vitamin K2 (MK-7 only) 200mcg/day
Citracal calcium citrate 630mg/day (+ the 10mg orotate in the ultivite)
D3 10,000IU/day (now elevated to 20,000 IU)
Fusion Health Organic Magnesium (140mg glycinate, 120mg citrate, amino acid chelate 120mg, aspartate 20mg = total mg per day of 400mg)
Healthy essentials super B (B1= 100mg, 2 = 100mg, 3 = 100mg, 5 = 100mg, 6 = 82mg, 12 =200mcg plus folic acid, biotin, choline bitartrate, inositol)
Swisse high strength wild fish oil 3000mg (540 EPA, 360 DHA)
Planetary Herbals Full Spectrum Kudzu 3000mg (4 tablets but all taken at the same time and i now remember seeing something about the need to spread three doses over the course of the day)

I've also just started taking a 2 week regimen of liquorice and skullcap extract (not tincture, which i am attempting to source). Given the particular formulation, i've been taking this once per day too rather than splitting it into three doses over 24 hours, which i will rectify once the tincture arrives.

Looking at all of this - i feel like i should probably strip everything out except the D3 regimen to see if i can get that to work properly. But when the attacks hit, i just want to throw everything at it. Hugely unscientific. At times, feels a little like throwing peanut shells at godzilla.

Thank God for this community

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