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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 248022 times)
anubis44
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #450 - Nov 29th, 2015 at 8:41pm
 
engels100 wrote on Nov 24th, 2015 at 6:45am:
Hi Anubis

Interesting you mention the pain in your right hand.  I've developed joint (left shoulder, left index finger) stiffness, pain and reduced mobility over the last year - and this is despite taking the full D3 regimen (last 8 months) and antihistamine (phenergan, last couple of weeks).  My mum also suffers from arthritis and had really bad headaches, though she was never diagnosed as a cluster head.  I'm still pain free - though may now be coming to the end of my cycle.  At some point i will stop taking both the D3 and antihistamine to see what happens.  Gulp.


Yes, engels100, I found it interesting, too, that my CHs went chronic around the time my hand started to feel arthritic. It was almost like a Rosetta stone for me: since we know arthritis is caused by inflammation of the joints, it 'translated' the pain in my head as also being caused by inflammation of some kind for me. I do want to emphasize that I am wary of staying on an NSAID for a prolonged period of time.

I know Vimovo (Naproxen with esomeprazole) is not ideal over the longer term, so I'm still on the lookout for any other, better kinds of anti-inflammatory that will do the same job of keeping my CHs and joint soreness banished. To that end, I've just started taking serrapeptase. It was given to me by my mum, so it was free, and I'm perfectly willing to try it.

In the meantime, I'm keeping my intake of the Vimovo to the minimum. So far, I've gone all day yesterday and today without one, and so far so good (no joint pain, which does seem to come back after about 4-5 days of no Vimovo).

Also, just to mention, I'm still pain-free! Not a single, solitary CH of any kind since Nov. 2nd. And I was able to have a whole beer yesterday, for the first time in almost two years!
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #451 - Nov 30th, 2015 at 3:24am
 
Anubis,

Wonderful news being CH pain free since 2 Nov.  Stick with it and I'm confident the anti-inflammatory regimen will also help prevent most of the joint pain as well. 

I've never been a fan of Naproxen or any of the other NSAIDs for that matter...  They all cause GI tract bleeds...  When you couple bleeds with the other side effects, the risk reward ratio is unacceptable... particularly when vitamin D3 works more effectively in reducing pain due to inflammation with none of the side effects......

Are you taking vitamin K2 MK-7?  The menaquiones MK-4 and MK-7 have the capacity to reduce calcium buildup in joints, arteries and soft tissue.  They also serve as a bone mineral density catalyst building stronger bones.  A 2010 study reported that increased dietary intake of menaquinones (vitamin K2), but not phylloquinone (vitamin K1), is associated with a reduced risk of incidental and fatal cancer.  That's a winning combination of favorable effects in any book.

If the joint pains continue, you might want to consider adding some glucosamine condroiten to the anti-inflammatory regimen.  It can take a few days to a week for it to "kick in," but when it does...  the joint pain goes away in most cases.

I take it frequently... particularly after working out with my chainsaw bucking up large Douglas Fir and White Pine trees for fire wood after the wind has blown them down along (and sometimes across) the driveway ...

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Bucking up the logs with the chainsaw is the easy part...  It's loading the cut logs in the pickup, then hauling them back to the house for splitting and stacking in the woodshed that takes its toll on 71 year old joints...

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 #452 - Dec 1st, 2015 at 9:48pm
 
Thank you so very much for taking the time to reply personally to me, Batch. Although I well realize it's before your time, I was thinking of you while I was watching some documentaries about the air war in the Pacific during WWII. Something that would be closer to your time, I wonder, did you ever fly the F104? There's one here in the aviation museum, in RCAF markings, of course! (Sic itur ad astra!)

I agree with you completely that the anti-inflammatory regimen will also help prevent most of the joint pain. You have an absolute believer in me, that the key to stopping CHs cold is to reduce inflammation. That is the strategy that is working for me, and that I am also convincing my neurologist to follow with his other CH patients as well. After hearing my results on your D3 regimen, he has put one of his other patients on it now, too.

I definitely will be discontinuing the Vimovo (Naproxen), as I am extremely wary of the possibility of GI tract bleeds. I resorted to it only because the D3, even in stupidly high levels, was simply not arresting the CHs by itself. I felt I needed to call in the big guns. Smiley However, I am already weaning myself off of the Vimovo, and will go out and buy some K2 MK-7. For some reason, it's kind of hard to find here in Ottawa, but I will make a point of it, I promise!

My joint pain is basically gone at this point, so I'm certain that I'm doing something right, and I really must say I'm also pretty confident that, in addition to the D3 and the Vimovo (Naproxen), my taking crazy strong (10mg per tablet!) melatonin  before bedtime is also helping tremendously in keeping my inflammation down, as it not only helps me get to sleep, but keeps me asleep all night most of the time, something I haven't done consistently in years.

I will also consider taking the glucosamine condroiten if there's any recurrence of joint pain. I wondered if you had heard anything about serrapeptase? I've heard everything from that there's no evidence it does anything to hearing that it's a wonder substance for reducing inflammation. For what it's worth, I've just started taking it, and I'll see how it goes. As usual, I will report any findings.

Since I live in Ottawa, Canada, I'm afraid there are no large Douglas Firs or White Pines for me to chop up. However, it is only a very short drive to all kinds of parkland with trees, trails, the Ottawa river of course, and the wilds of Quebec. Perhaps if I am lucky, I will have a cottage or cabin of my own one day (I'm 46), and think of you splitting wood at 71(!) and be grateful to you for all the years I'll have had since 46 being CH-free. Thank you once again, from the bottom of my heart, I am grateful to you for publishing your anti-inflammatory D3 regimen.
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« Last Edit: Dec 1st, 2015 at 9:49pm by anubis44 »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #453 - Dec 2nd, 2015 at 1:05am
 
Anubis,

Thanks for the feedback. I'm happy to hear the joint pain has gone away...

We didn't have any F-104s in the US Navy, but a few of the Navy Test Pilots who attended Navy TPS Pax River or the Air Force Flight Test Center at Edwards in the 60s and 70s managed to snag a few hops in them. 

I do recall some very exciting dissimilar air combat training (DACT) in the early 70's with RCAF CF-104 Starfighters from CBF Cold Lake, Alberta while I was flying the F-8 Crusader.

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We spent a week at CBF Cold Lake, flying two and three short 30 minute DACT hops a day... and drinking like fish all night...  The debriefs at the O-Club were colorful and by the end of the night, nobody could remember who won or lost... but we did have fun...

The Starfighter couldn't turn worth a hoot, but it sure could accelerate away from the fight... usually straight up... "to the stars" and that made it difficult at best to get off a good AIM-9 Sidewinder shot much less Guns...   The F-104 was essentially a J-79 after burning jet engine with a needle nose, stubby wings, blinding speed and enough gas for two passes...

When the week was up, we moved the entire gaggle down to NAS Miramar, San Diego, CA for another week of  DACT...  The only problem at Miramar was we had to share the RCAF Starfighters with the F-4 Phantom squadrons...

I transitioned to the F-4 Phantom in '74 while at VX-4, Pt Mugu, CA...
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The Phantom had two J-79s and clean bird could go Mach 2... but not as quick as the Starfighters...  They had the trust to weight advantage...

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Dec 2nd, 2015 at 1:07am by Batch »  

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thierry
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #454 - Dec 2nd, 2015 at 1:14am
 
Hi Anubis,
I've enjoyed reading your posts and Batch's replies.

The Vit K that Batch recommends as part of the regimen is this one from Life Extension.

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It is usually for sale on iherb.com (U.S) but it looks like they might not have it right now.
The link above is from amazon in the UK but I'm sure there are plenty of other places where it can be got.

All the best
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« Last Edit: Dec 2nd, 2015 at 1:50am by thierry »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #455 - Dec 10th, 2015 at 7:07pm
 
Hi all,

I posted yesterday on one of the other threads. Would somebody kindly update the state of the art on this regimen? I know it changes some over time and I'd like to go pick up all the cofactors tonight to get started. Getting seriously worn down by prednisone and verapamil and want to give myself the best chance of getting off this stuff in the next 2-3 weeks. Thanks very much for all the great work you do.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #456 - Dec 10th, 2015 at 7:10pm
 
Let me just clarify because I think I have steroid brain: it would be really helpful if the leading scholars here would post a list of the vitamins and cofactors in one place so I can buy 'em and start to take 'em. Thanks.
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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #457 - Dec 10th, 2015 at 7:44pm
 
Ibh,

See photo below. Can't find it in the threads.

This is the most recent I have, within the last few months.

Good luck,

Peter.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #458 - Dec 11th, 2015 at 12:17am
 
Thanks! Huge help. So what's all this I'm seeing about Benadryl?
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #459 - Dec 11th, 2015 at 12:25am
 
Hey IBH,

Sorry you're having trouble finding the latest version of the anti-inflammatory regimen.  I keep the latest version of the anti-inflammatory regimen complete with a photo of the supplements I take updated on page one (half way down) of this thread...  or you can click on the following link and scroll down page one: 

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To save you a little time here is the photo of the supplements I take. If you stick with the brands in this photo you'll be getting everything you'll need.

With the exception of the Super K that I order over the Internet from Amazon, I buy the rest of these supplements at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the internet:

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You're not the only CH'er to ask for a single location for this regimen here at CH.com.  I'm working up a draft of the anti-inflammatory regimen supplements, doses, dosing strategy and other useful information for DJ to post next to the Oxygen Info in the column at the left.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #460 - Dec 11th, 2015 at 3:42am
 
Benadryl is an anti-histamine that can be taken with the D3 Regimen if you are suffering from some allergy or infection that is interfering with the D3 and allowing the Beast to rear its ugly head.

At this point I don't think you need bother with it, until your D3 levels have increased.

You should get your Doctor to check your 25OHD level now, as you start taking the Vits, so you have some idea as to where you are starting from.

Good luck,

P.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #461 - Dec 16th, 2015 at 2:55pm
 
Batch wrote on Dec 2nd, 2015 at 1:05am:
Anubis,

Thanks for the feedback. I'm happy to hear the joint pain has gone away...

We didn't have any F-104s in the US Navy, but a few of the Navy Test Pilots who attended Navy TPS Pax River or the Air Force Flight Test Center at Edwards in the 60s and 70s managed to snag a few hops in them. 

---

The Phantom had two J-79s and clean bird could go Mach 2... but not as quick as the Starfighters...  They had the trust to weight advantage...

Take care and please keep us posted.

V/R, Batch



Awesome pics of you and wonderful anecdotes from your days of flight, Batch! Thanks for sharing!
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« Last Edit: Dec 16th, 2015 at 2:55pm by anubis44 »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #462 - Jan 3rd, 2016 at 8:12pm
 
I am so excited to be starting this today.  As I also have histamine intolerance (chronic hives) and some GI issues going on.  I will keep the Benadryl on hand, but does anyone have any insight on how this protocol may impact histamine release? 

Thank you!
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #463 - Jan 4th, 2016 at 12:24am
 
Miranda,

Hello and welcome.

I have been on the D3 Regimen for nearly a year now with excellent results. I am chronic, that is to say that I don't get episodes. I simply get hit every day, without fail. It's been like that for nearly 3 years now.

The D3 has reduced the severity of the attacks to a 3/4 on the Kip scale ( read about that on the top left hand side of the page) and quite manageable.

I frequently take Benadryl if I feel an increase in pain levels and/or frequency, as it usually indicates a minor infection or allergy ( for example to pollen in the Spring). Benadryl is the recommended solution in such an event and never caused me any problems.

A word of warning though, it can make you drowsey, so take it in the evening when you know you won't be driving for the rest of the day.

One more thing. It is important that you take ALL the cofactors specified in the D3 Regimen and that you take them consistently, not just when you are in an episode.

Again, welcome and we wish you pain free days ahead.

Keep asking questions.

Peter.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #464 - Jan 4th, 2016 at 1:31am
 
Hey Miranda,

Thanks for the headzup you've started the anti-inflammatory regimen...  Good move!

Histamine is a trouble maker for CH'ers as it can inhibit the preventative capacity of the anti-inflammatory regimen... That's why I suggest a first-generation antihistamine like Benadryl (Diphenhydramine).  It passes through the blood brain barrier to block H1 histamine receptors in neurons throughout the brain and in particular, the hypothalamus and trigeminal ganglia. 

A week to 10 days course of Benadryl at 25 mg every 12 hours should work to suppress the effects of histamine long enough for vitamin D3 to do its magic in preventing your CH.  Just be careful not to drive if possible as Benadryl will make you drowsy.  If you need to drive during the day, take two of the 25 mg Benadryl tablets when you're home for the evening.

This regimen is also very effective in treating IBS and other GI tract autoimmune disorders.  As absorption can be a problem with GI tract issues, try popping the vitamin D3 softgels between your back teeth and swirling the contents under your tongue for at least 5 minutes without drinking any fluids or swallowing...  I do this all the time...  The contents taste slightly sweet and the gelcoats turn into a gummy bear consistency that is easy to chew and swallow.

Taking vitamin D3 this way bypasses the GI tract as it passes directly into the bloodstream with sublingual application. 

Be sure to check with your PCP about taking this regimen and try to get the 25(OH)D lab test.  Knowing your serum concentration of 25(OH)D is helpful in determining how large a loading dose you need.  You'll need a second lab test for 25(OH)D after a month or two.

Once you're comfortable taking this regimen, be sure to get your guy taking it too...  The health benefits are very exceptional.  There's only one word of caution when you and your guy are both taking this regimen...  Fertility goes way up...

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #465 - Jan 4th, 2016 at 9:23pm
 
Hi Batch!
Fantastic info.  I have been avoiding histamine containing and releasing foods, but still having some the occasional hives, so I do think I will add this to my routine.  Little nervous though-has anybody had any issues with Benadryl revving the cycle up at all?  This has been so manageable so far I am scared to mess it up-lol.

I did have the Vitamin D, 25-Hydroxy test in the middle of September, I was 26.6.  Is this data good or is it better to retake the test right now? 
Also, the Vitamin D I have are the drops instead of the gel capsules, which I do take sublingual. Is this fine? 

One question:  On the loading day-do I just pick any day to do the 50000 IU of this first week (and second week)?

On fertility, luckily my husband is snipped.  While pregnancy could also suppress my cycle, I would much rather take a different route. Ha ha!! Smiley
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #466 - Jan 4th, 2016 at 10:06pm
 
Also, I am slowly moving through this entire thread, so forgive me if this has been mentioned before but in certain states (AZ I know for sure) you can actually order your own blood tests through Theranos (in Walgreens clinics).  The Vitamin D-25 Hydroxy cost about $20.  Obviously you still want to work with your doctor and loop them into the regimen, there may be circumstances where people just want to run in and get the test themselves.  This isn't everywhere, but check your state- it just started in 2014 or 2015 here in AZ.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #467 - Jan 5th, 2016 at 2:54am
 
Miranda,

No need to start the Benadryl (Diphenhydramine) until you've completed the 2-week vitamin D3 loading schedule and then only if you haven't experienced a favorable response with a significant reduction in the frequency, severity and duration of your CH.

The vitamin D3 drops taken sublingual should be ok but most vitamin D3 drops are rated at 5,000 IU per 1.0 mL...  What brand are you taking?  It may be easier to pick up some 5000 IU vitamin D3 liquid softgel capsules.  I take Nature's Bounty 5000 IU Vitamin D3 softgels shown on the left in the following photo...

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The results from your last 25(OH)D lab test are still valid so no need to retest.  The results have likely not changed much since mid September.  If anything, your 25(OH)D serum concentration is probably a little lower by now.

Regarding the vitamin D3 loading schedule... I was going to suggest the 2-week 600,000 IU loading schedule.  However after reading your other post from today, it's apparent you've already started to respond to the anti-inflammatory regimen. 

Accordingly, I suggest you stick with the 10,000 IU/day maintenance dose for another two to three days.  If you're not substantially pain free by then you can start the two week vitamin D3 loading schedule.

The average 25(OH)D response to a loading dose of 600,000 IU of vitamin D3 is a gain of 60 ng/mL above the starting serum concentration. 

For example, if your starting 25(OH)D serum concentration was 25 ng/mL, your total serum concentration should be around 85 ng/mL at the completion of the two week loading schedule.  At that point drop back to a maintenance dose of 10,000 IU/day.  Your 25(OH)D time course response should look like the the 2-week vitamin D3 loading dose schedule (first green curve) in following chart:

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This loading schedule is very safe.  There have been a couple studies where study subjects with a vitamin D3 deficiency were given a single oral dose of 600,000 IU of vitamin D3...  No adverse reactions and no indications of vitamin D3 intoxication... What did occur was their 25(OH)D serum concentration went up by an average of 60 ng/mL above their starting concentration by the third day...  See the following link for the abstract from one of these studies:

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The real take away from this study is the drop in serum magnesium at day three...  This points to the importance of taking at least 400 mg/day magnesium.

You can wait a couple weeks after returning to the 10,000 IU/day vitamin D3 maintenance dose for your serum concentration of 25(OH)D to stabilize then go in for another 25(OH)D lab test.  It should come back close to 80 ± 5 ng/mL.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jan 5th, 2016 at 3:22am by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #468 - Jan 29th, 2016 at 9:30am
 
*** A 3 month update on Vimovo (naproxen with esomeprazole magnesium)/10,000iu vitamin D3/10mg melatonin ***

I was an episodic CH sufferer since 2007, and I have been a chronic CH sufferer since August of 2014. Since starting a regimen of Vimovo, a 10,000iu vitamin D3 tablet, and regulating my sleep cycles with 10mg melatonin tablets, I have not had a single CH since Nov. 2nd! It has been 100% effective!! No, I'm not exaggerating! NOT ONE CH since I started taking it!! So I just HAD to tell you all!

I have been taking 1 tablet (500/20) of Vimovo most days since Nov. 2nd, generally just after lunch or dinner, along with a 10,000iu Vitamin D3 tablet. Those are the only consistent supplements/medications I've been taking (besides the 10mg melatonin) so I know my pain-free period has to be the result of the Vimovo, either alone or in combination with the D3. The D3, even when I was taking it as part of the full Batch D3 regimen, was simply not stopping my CHs, (although I believe they were somewhat reduced in intensity). The key was that I knew Batch was onto something with the anti-inflammatory approach. So I looked further into anti-inflammatories, and of course, came across the literature on NSAIDs. Normally, NSAIDs such as Ibuprofen take far too long to work once you start to sense the onset of a CH. But I wondered, as a now chronic CH sufferer (I was getting 1-2 every day, and sometimes even 3 in a 24 hour period), what would happen if I took an extra strength Advil (Ibuprofen) once every 4-6 hours (maximum dosage) for several days. Would I get a CH? The answer was no! I did not get a headache so long as I took the Advil every 4-6 hours. But of course, you can't take Advil every 4-6 hours forever. So I looked at other treatments in the NSAID family, and quickly came across Naproxen.

Naproxen had been one of the emergency room 'cocktail' pills I had been given at the hospital when I had to be admitted back in September of last year with a force 10 CH (a CH so strong, even the normally somewhat effective Zomig 5ml nasal spray couldn't put a dent in it, and one which kept going, even after an hour!), and had started to feel better very quickly. At that time, I had written off any of the pills in the 'cocktail', and figured the CH had just petered out on its own. But armed with the knowledge that continuous dosing of Ibuprofen had blocked any CHs for 5 days solid, I was encouraged to try Naproxen. However, Naproxen by itself is also problematic when taken over time, due to the potential it has to cause upper gastro-intestinal tract bleeds. I was somewhat discouraged, but luckily, I came across a version of naproxen called Vimovo, which comes with another ingredient called esomeprazole magnesium which mitigates the stomach bleed potential of the naproxen, and is considered safe for long-term usage for most people. In addition, the Vimovo is a slow-release formula, which lasts for 12-24 hours, instead of Ibuprofen's wholly inadequate 4-6 hours. Aha! I will try this Vimovo, I thought, and see if it can also stop my CHs! I lucked out and got a quick appointment with my specialist, who agreed to give me a prescription for Vimovo. I started taking it on Oct. 15th, and I also focussed hard on getting myself to sleep before midnight every night possible (as I've always had trouble falling asleep). I even got a prescription for Trazadone (an anti-depressant which also works very well as a sleeping pill) to make me fall asleep when necessary, and I started taking 10mg melatonin tablets to keep me asleep. (Although I only rarely use the Trazadone, I've been taking the 10mg melatonin almost every night since late October. If you take them together, you'd better not have to be somewhere in the morning! They REALLY knock you out!) I got 5 CHs from Oct. 15 to Nov. 2nd, but after Nov. 2nd, none at all!

Vimovo dosage

I have been taking only 1 Vimovo a day, although the maximum dosage on the prescription is 2/day, which is great, since it seems to have power to spare for stopping CHs! I have also been experimenting with skipping Vimovo tablets, and I've gone up to 5 days before the soreness in my hand and an extremely faint shadow in my head warned me I'd better resume taking them. For me, the Vimovo has been so effective, I even get warnings to resume them BEFORE I ever get a CH!!! How awesome is that?!!

Although there are some health considerations/concerns with the longer-term effects of Naproxen, they are entirely manageable for most people, and from what I have read (and been personally experiencing) significantly less worrisome for most people than treatments such as verapamil, which slows your heart to the point that you must get tested before and during the time you are on it, made me extremely tired (I could barely climb small flights of stairs) and mentally dazed at the dosages which seemed to be required for mere partial efficacy. Considering I am a relatively fit 46 year old, the verapamil, with only questionable efficacy and a seemingly dangerous propensity to slow my heart down to the point I couldn't exercise properly seemed out of the question.

Role of melatonin/sleep regularity

I don't know just exactly how much of a role the 10mg melatonin and the improvement in my sleep regularity is playing in all this--probably quite a bit--so I can only say that if you try the Vimovo/D3 treatment, and you're still getting any CHs, you really should get serious about taking strong melatonin tablets every night (mine are Nature's Path 10mg - the 1-1.5mg ones are nowhere near strong enough to keep me asleep effectively) to help you get a good sleep, as this almost certainly reduces inflammation in your body, too.

Anyhow, this is such fantastic news that I am going to start a new thread on the site for this. Please, if you are a chronic CH sufferer, ask your doctor/specialist about getting a prescription for Vimovo. Your CH's CAN be stopped dead for good!
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« Last Edit: Feb 6th, 2016 at 12:33am by anubis44 »  
 
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blacklab
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #469 - Jan 30th, 2016 at 1:21am
 
Hi annubis,
                Firstly I'm glad you've managed to get to a pain free state, that's fantastic.
Regarding Vimovo, especially with reference to being less worrisome than Verapomil, I'm not a doctor so I googled it and there are some serious side effect issues to be considered here, far more than what Verapomil appears to have. While I don't doubt its effectiveness it is having with you, my doctor classed it as a " dirty drug" when I asked about it, she said the variables of issues that it can cause make it quite a selective anti inflammatory. Now I know probably most of the drugs we cluster sufferers swallow have a " risk" factor, batch has put up here a list several times of deaths caused by most of them.
My only concern was the possible side effects it lists, which pretty well covers most of the major organs, as well as being those over 50 years old, high blood pressure, asthma sufferers, smokers etc. They list the proton pump as being used to lessen the stomach acid to stop ulcers but don't mention that it stops bleeds, infact the warning explicitly warns that a possible side effect of Vimova is bleeds, as well as, kidney and liver function.
Now I know you said that it can be managed in most people, as I'm sure you are being and I'm glad to hear you've managed to become pain free from being chronic.
I know what it's like to try and break that continual cycle of pain.  Early on, I was offered a drug, I cant for the life of me remember the name, but my neurologist called it a "dirty drug" its success rate in keeping sufferers pain free was high, you could only be on it for a maximum of 6 months at a time, during that time you had to have both liver and kidney function tests, gain weight and possibly loose hair  !!and  if you remained on it any longer than that, fibrosis of the heart and liver were high risk !
For me, that was just to many potential risks.
The melatonin side of things is something I've not done yet, Its only available under doctor prescription here and there quite stand offish about it when you ask. But for along time people here have touted its effectiveness. Cluster headaches and sleep are related, its connected in a big way, whenever my sleep is interrupted, Bang, I'll get hit.
Sorry if I was sounding negative about Vimova, I read your post and was immediately interested in something I hadn't heard about, that someone was having success with ! 
  But for me, over 50, have had asthma, a smoker, that has had an issue with stomach ulcers,   to many risks.......
But for those that could handle it,  well, anythings better than a cluster cycle !!!
Keep us informed on how you go with it over the duration.

colin

   
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #470 - Jan 30th, 2016 at 12:18pm
 
After nearly 3 years of PF living since my last cycle, using a maintenance dose of 5000 IUs of D3, had a CH last Saturday night. Dusted off the Oxygen tank and worked well to limit to <10 mins per headache once or twice a day. Immediately increased the D3 dose to 30000 IU daily.  Plus sitting in the sun right now (finally, as it's been mostly raining for weeks).  No alcohol for the weary!  Had to get the tanks refilled - what a PITA...neurologist insists on seeing me since it's been so long (thanks to Batch) before he renews the O2 script - but persistence paid off and I've got my supply in advance of the appt.  seems like what I eat really is a trigger....especially chocolate and sugar. Do any of the threads discuss this? Doesn't seem to be an easy way to find only the useful threads with a lot of activity.  Interested to know what, other than alcohol, to avoid during the cycle.....thanks.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #471 - Jan 30th, 2016 at 6:06pm
 
Smiley their are so many that effect different folk, for example.
For me, it's all processed foods, including dairy, for others it's Perfume and all chemicals including the fumes from fire lighters when starting a BBQ. As for the chocolate which is also a trigger for me when in a cycle is not the cocoa, but the chemicals they add to it are the culprits.

Hoppy
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #472 - Jan 30th, 2016 at 8:20pm
 
In addition to the anti-inflammatory regimen that I started 3 weeks ago, I cut out pretty much all inflammatory foods. Sugar (outside of fruit and limited that the best I could) all grains, all nuts, seeds, legumes, dairy and of course gluten. I followed the autoimmune paleo diet, and even limited some of the foods that are anti-inflammatory, but are histamine containing or releasing.  Ultimately, it only made sense to me that if an anti-inflammatory vitamin regimen has found to be successful-then eating inflammatory foods could be counterproductive.  Lost 11 pounds-so I guess that's an exciting side effect of trying to abort my cycle.   One awesome thing that I noticed about the regimen is that it really seemed to help with cravings, probably because my body is getting the nutrients it needs. 

I am pretty sure that my typical 6-8 week cycle has now been shortened down to 4 weeks (I am pretty sure I am done!) but beyond it being shortened, it was unbelievably mild and mostly had shadows with very few true hits.  I was using Indomethacin and Benadryl for about 10 days, but jumped off as soon as I could.  NSAIDs make me incredibly nervous, really most pharmaceuticals do.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #473 - Jan 31st, 2016 at 1:05am
 
mrsbenson03 wrote on Jan 30th, 2016 at 8:20pm:
Lost 11 pounds-so I guess that's an exciting side effect of trying to abort my cycle. 


That is pretty good, but from my experience nothing compares to the weight loss I had from topamax, but then that was from forgetting to eat as it fogged my brain up so much.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #474 - Feb 2nd, 2016 at 1:20pm
 
A detailed explanation because you deserve details

Since a lot of responders seem to be skeptical about the Vimovo/D3/melatonin approach, I decided to explain how I arrived at it in the first place.

BlackLab, I completely understand that there will be people who can't take Vimovo (Naproxen+Esomeprazole Magnesium). My comment about Verapamil is based on personal experience, as well as my own neurologist's opinion. The fact that I had to get regular blood pressure tests just to be allowed to start and continue taking it should give you some idea of how potentially dangerous it is. My GP was very concerned about me trying Verapamil, and by contrast, she didn't bat an eyelash at me taking Vimovo. Verapamil wasn't very effective for me anyhow. I had to take it at the maximum dosage of 960mg (very nearly the maximum permitted dosage of 1,000mg) in order to see any changes in my CH frequency at all, and at that dosage, I was starting to have trouble concentrating and physically exerting myself. Even climbing a small staircase was wearing me out. I considered that unacceptable, as I'm a relatively fit 46 year old. In the end, Verapamil didn't even completely stop the CHs, so what was the point? Vimovo, by contrast, does not cloud your brain or make you tired/unable to exert yourself. You are entirely yourself, physically and mentally. It has had no more noticeable effect on me than taking an Advil: basically zero. In addition, the naproxen in Vimovo is considered much less associated with cardiac effects than other NSAIDs, and for me, the esomeprazole magnesium negating the potential of naproxen to cause stomach bleeding potential renders it safe enough for me, and clinched the deal as a potential treatment.

Obviously, if you have any of the medical conditions or risk factors mentioned by the manufacturer of Vimovo, you will need to speak with your doctor before considering it. Now that I'm CH-free, I am going to look around for possible alternatives to Vimovo. But I felt it was my civic duty to report what led a chronic sufferer to a CH-free experience with Vimovo to other CH sufferers. Just a note to those nattering at me about Vimovo: If you're not chronic, you have the luxury of knowing the cycle you're in will probably end. When you're chronic like I was for over a year, the possible side-effects of taking Vimovo seem piffling, as your quality of life is in the toilet. You want the pain to stop, and you'll do whatever it takes to make it stop. What I'm offering is advice on possibly the least dangerous way to do this there currently is, so please bear this in mind when sniping. The idea is not to stay on Vimovo for the rest of my life, but to use it as a 'big gun' to just make the damned CHs stop and stop for an extended period of time. On this count, it has, in combination with the rest of my routine, been 100% effective. Note that I said '100%' and not some lower figure. I have had NOT ONE (not even a little, tiny level 1 CH--even that sensation which preceded a CH and lingered after the pain left, or shadowing, is now absent) in 3 months on this routine.

I do think the Batch D3 regimen is on the right track--the anti-inflammatory track--it just wasn't quite effective enough on its own for me, and that's why I'm posting this supplemental anti-inflammatory treatment in this thread. I don't know if Vimovo 500/20s would stop CHs by themselves, as I haven't tested that, but as a major component of an over-all anti-inflammatory routine, including a rigorous attention to regulating my sleep patterns with strong (10mg) melatonin tablets, I'm merely reporting that I'm CH-free, and I wasn't CH-free on just the D3 regimen after over two months of meticulously following it.

The story

So, after a month and a half of taking the full Batch D3 regimen, and finding that it was not stopping my CHs, I felt I had to resort to some kind of anti-inflammatory supplementation. I based my research on the basic premise behind Batch's regimen, which is that CHs are caused by an inflammation response in our bodies. After all, many people had reported success with the Batch D3 regimen, it just hadn't been as effective for me, and several others in this thread have also reported less than stellar efficacy.

What actually causes inflammation?

Since many had reported success using Batch's anti-inflammatory D3 regimen, I believed the essential approach was sound, but perhaps, just not potent enough: that CHs are caused by inflammation, and specifically, inflammation of the tissues surrounding the trigeminal nerve. I believe that during a cluster attack, the tissues around the trigeminal are swelling, constricting the the nerve in much the same way that a boa constrictor crushes its prey. The immediate question for me as a victim of this torture was simply, what is the proximate cause of this inflammation? What makes your tissues around your trigeminal nerve swell? My reading indicated that prostagladins are responsible for tissue swelling, and that there are two things in your body that produce prostaglandins:

COX-1: responsible for "baseline levels of prostaglandin", and COX-2, which produces additional prostaglandins through "stimulation". (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

Bingo! COX-2 is produced on demand by your body in response to tissue stress. In other words, put simply, it's COX-2 that makes your thumb swell if you bang it with a hammer, and my reasoning is that somehow, in CH sufferers like us, SOMETHING is causing the production of too much COX-2, likely on a circadian cycle (or a messed-up circadian cycle) of some kind, and over-production of COX-2, and consequent over-synthesis of prostagladin is causing inflammation in the tissues surrounding our trigeminal nerve.

An arthritis aside

In my case, I also 'lucked out' (if you can call arthritis of any kind 'lucky') in noticing that my right hand joints were starting to get arthritic joint pain around the time that I went from episodic to chronic back in August of 2014. For me, this was another clue that Batch was on the right track with an anti-inflammatory approach. After all, arthritis of the type my doctor says I have is caused by inflammation of the joints. Hmmm. Inflammation! COX-2!

Reducing your COX-2 level is the key


So the issue for me quickly became, if my body is over-producing COX-2, and that's causing excessive prostaglandin production which is now giving me arthritis and CHs, what will inhibit that? Since the vitamin D3 regimen (D3 helps to inhibit COX-2's catalysation of arachidonic acid into prostaglandin) was not eliminating my CHs; (at best, they were somewhat milder, and almost as frequent) I decided it needed some help. If even extremely high doses of D3 were still not sufficient to stop my CHs, perhaps I simply had far too much COX-2 in my system to begin with. I am chronic after all. So I decided I had to find something that would reduce the amount of COX-2 in my body in the first place: to look for a 'big gun' that would work in partnership with the D3, to help push down my inflammation levels even more and keep them down: a knock-out blow, so to speak, and NSAIDs are that 'big gun'.

NSAIDs are known, effective inhibitors of COX-2 levels. They don't reduce COX-2's ability to produce prostaglandin like D3 does, instead they reduce how much COX-2 you've got in your body to begin with. As I've already mentioned, just as a test for my theory that inhibiting COX-2 production should halt CHs, I experimented on myself by taking two extra strength Advils (Ibuprofen) every 4-6 hours continuously for 5 days. In the past, and even at the very beginning of my CH odessey back in 2007, I had tried taking Advils to deal with the headaches, but of course, as I quickly discovered for myself, and as my specialist subsequently confirmed, orally-administered Advils don't kick in quickly enough to prevent the onset of a CH (although they did seem to help once they did start to take effect--but of course, I was never really certain it was the Advil that curtailed the duration of a CH, or if the damned thing had just ended on its own), so like all of you, I had long-since abandoned Advil as an effective treatment for a CH onset. However, what I wanted to find out for this experiment was, would taking Advil on a continuous basis, ie BEFORE I even get the sense of a CH onset PREVENT the CH from happening. So I timed the Advils to approximately an hour before I expected the next CH. This started pushing the CHs around in terms of timing, but didn't stop them altogether, so I decided to go all-out and just take them every 4-6 hours (maximum dosage, though hospitals regularly administer much higher doses of ibuprofen for certain conditions) continuously, for a set period of 5 days. I've always had a cast-iron stomach, so I knew this would not be an issue. Note that immediately preceding this experiment, I was getting at least 1 CH each and every day (often two or even three in a 24 hour period) for over a year, with only the occasional exception, and even then, I never enjoyed more than one skipped CH in a row. The round-the-clock, maximum dose Advil experiment worked like a charm! I did not get a single CH for those 5 days! Could be fluke, I thought. I had been let down many times with different treatment approaches, but I decided to pursue the notion that it HAD worked, just in case.

Round the clock Avil works, but what is a more sustainable NSAID?

So it was then that I decided to find the most sustainable form of NSAID that would do what the Ibuprofen was doing, and based on my own evaluation of the risks, and the fact that Vimovo was both naproxen accompanied by a protein pump inhibitor, esomeprazole magnesium, and was designed as a slow-release, coated formula, I chose to try Vimovo. An interesting coincidence, is that Vimovo is normally prescribed as an arthritis treatment! So I made an appointment with my neurologist and told him my idea. He said that, as he did not have anything known to be effective as a treatment for chronic CHs, he was willing to write me a prescription for Vimovo. I went out and filled it that same afternoon, and started taking the maximum dosage of 2x500/20mg Vimovo every day on Oct. 15th, while also continuing to take 10,000iu Vitamin D3, a Centrum multi-vitamin, 10mg melatonin each night after sundown, and making myself go to bed between 9-12am, even if I had to also take a sleeping pill (Trazadone in my case.) My symptom diary says I had 9 CHs from Oct. 15th to Nov. 2nd, and then nothing. I have not had a single CH since Nov. 2nd of 2015 (I am not exaggerating--I mean not a single, solitary CH, not even the sense of a strong shadow, although I've noticed a couple of very minor shadows when I have tried going for more than 4-5 days without any Vimovo).

Do I think this is the magic cure for CH, and no further work needs to be done? Of course not. Is it a substitute for the D3 regimen? No. But if you can take it (ask your doctor/PHP) and especially if you are chronic, this may be the only thing that gives you your life back, as it has done for me.

Role of regular sleep

As part of a comprehensive, all-out assault on anything that could cause inflammation in my body, in addition to the Vimovo, I also decided to get very serious about regulating my sleep schedule. Ever since I was a teenager, I have had trouble falling asleep consistently at a set bedtime (I've had enough experience since my first definite CHs in 2007 to know that staying up late almost guaranteed CHs/stronger CHs). So I decided, in addition to taking the Batch D3 regimen, and the Vimovo, to get something that would knock me out to sleep, if necessary (trazadone), and something that would keep me asleep if I didn't take a trazadone (melatonin). To further guarantee sleep success, I even got a prescription for Tramadol in order to eliminate the possibility that a CH might wake me up an hour into sleep. I only took 2-3 of these over the course of the preliminary period Oct. 15th-Nov. 2nd. They are an opioid, so not recommended for any sustained use, but the sure as hell kept me asleep when a CH might well have woken me up!).I had found that the 1mg or 1.5mg melatonins were not strong enough to keep me asleep, so I found 10mg melatonin tablets at Costco (Nature's Path 10mg). These do an admirable job of this.

So my approach from Oct. 15th of last year can be summarized as:

1) Daily use of Batch D3 regimen (10,000iu of Vitamin D3 if nothing else).
2) 2 Vimovo 500/20mg per day, always with meals, while trying to break the chronic cycle, then 1 Vimovo 500/20 (or less) for maintenance. (I am still experimenting with how many days I can go without the Vimovo, just taking the D3/melatonin--I can now go several days at a time before sensing any shadows; that I should take a Vimovo).
3) Sleep regulation, using 10mg melatonin, and occasionally, using trazadone to make me unconscious if necessary. (I even got a prescription for Tramadol in order to help me sleep--only took 2-3 of these over the course of the preliminary period Oct. 15th-Nov. 2nd, to keep me asleep in the event of a CH). This involves going to bed around the same time and getting up whenever you need to, but sleeping in is absolutely recommended whenever possible. You can never get 'too much sleep'. That is a myth. Your body will never sleep longer than it needs to! This is important!

It took about 18 days to completely stop the CHs, but after Nov. 2, not a single CH. I scaled back the Vimovo to 1 500/20mg tablet per day, and have tried 2 or 3 times cutting out the Vimovo, and just taking the D3+multivitamin and the sleep regulation routine. So far, no CHs, but I have resumed the once daily Vimovo whenever I have sensed a shadow, which is also often accompanied by additional arthritic soreness in my right hand. I am now experimenting with taking only 1 Vimovo whenever I have the vague sense of a shadow, and then going more days to see how long I can go before the next vague sense of a shadow. Note that these are not full-on shadows, like I would get before an actual attack. These are even less intense that those. They're more like a hint of a shadow, which is more than enough!

All I know is that this Vimovo/D3/melatonin routine has worked flawlessly for me for over three months now. Not a single CH. I don't know how much of a role the various parts of my routine play in the cessation of my CHs, but probably, all of them are needed. It's possible there is a synergy between the D3 and the Vimovo. I have not tried stopping the D3, so I don't know.

Believe me, as a fellow CH sufferer, I would not lie about my results to fellow sufferers. What would be the point? I promise that if anything changes, and the treatment routine I'm following suddenly proves itself ineffective, I will update everybody. I don't know how helpful this will be for episodic sufferers, though I'd venture to guess that it will work for you, too. But if you are a chronic CH sufferer and you can do what I'm doing: if you can get approval from your doctor for Vimovo 500/20mg, and you can take 10,000iu of D3 and get yourself to sleep on a regular sleep schedule, using melatonin and/or something even stronger whenever necessary, to make yourself sleep, you owe it to yourself to try this for at least a couple of weeks. I promise it will not be a waste of your time.
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