My monies on the vitamin D regime!
Just my personal opinion 

Hoppy

blacklab,

Thank you for acknowledging that I've researched what I'm saying, and that I also acknowledge potential issues with the Vimovo for a comparably small percentage of CH sufferers.

I'm getting sick of people bitching that 2 weeks of 2 Vimovos/day, and a maintenance dose of less than 1 per day (I'm still figuring out how little is needed to maintain PF, but it's looking pretty good so far for how little Vimovo might be needed) is going to lead to mass death from stomach bleeds. I believe the Vimovo, in combination with the D3 regimen (and possibly the melatonin) is so effective in completely halting CHs that, once you 've stopped them, you will only need very occasional maintenance doses of Vimovo (or possibly another NSAID like Ibuprofen) to remain pain-free, since there seems to be very potent synergy between D3 and NSAIDs in reducing inflammation that neither of them on their own can match.

For example, this link talks about the 'double whammy' D3+NSAIDs provide against prostate cancer:

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The key quote for me was: "The group saw a 25 percent reduction in prostate cell growth using only calcitriol (D3), and approximately the same reduction using only ibuprofen and naproxen. But when they combined calcitriol (D3) and an NSAID, they saw up to a 70 percent reduction. This result was obtained using from one-half to one-tenth the concentration required for either of the drugs used alone."

This suggests a possible reason for the success of my current D3+Vimovo routine. Together, D3 and Naproxen are significantly more potent in reducing inflammation than either of the by themselves.

Since there have been some extremely negative responses to the treatment regimen that's been completely effective (I can't stress this enough) for me, I've decided to try stopping the Vimovo (while still continuing the Batch D3 regimen, and the melatonin) as a test, just to see how long it might be before I get a CH. I'm doing this for a few reasons:

1) I want to see whether the Vimovo is in fact responsible for my current, pain-free period. If it is, my CHs should resume at some point without it.
2) If the Vimovo is key to my current pain-free period, how much is the minimum maintenance dose to keep me pain-free?

I understand some people are married to their current treatment routines, and they're understandably tired of hearing of the latest wonder treatment that just turns out not to work, and they're reluctant to try yet another new thing that purports to stop CHs completely. But, with the exception of a few people in the Batch D3 thread, so far, I haven't heard of anybody saying their routine has completely, totally stopped their CHs. There are legions of the damned who are swearing by this much oxygen, or that much verapamil to mitigate their CHs once they're imminent, but I don't want to live my life constantly at the ready to pull out an oxygen tank, or a Zomig nasal spray, or to take continuous doses of verapamil in quantities that slow my heart down to the point where I fear it may stop beating just because it >might< reduce the frequency of CH attacks.

I say to hell with that. I now have my life back with what I'm doing. I can eat anything I want for the first time in years. I can drink alcohol in any quantity I choose. I can even eat MSG-laden Chinese Food with impunity! All without even the slightest hint of a shadow. I'm sharing this, not because, as one curmudgeon on here suggested, that I'm an egoist. Rather, I'm sharing what's working for me because CH is probably the single most painful condition known to medical science, and I've found a way to stop it dead in its tracks that's worked with 100% effectiveness for me, a former chronic CH'er, for over three months now. What kind of jerk would I be for NOT sharing this?

If I'm right, and excess COX-2 is the ultimate culprit behind CH, which I'm now completely convinced it is, the Batch D3 regimen + Vimovo in the dosings I've already mentioned (and possibly the melatonin, all of which work to reduce inflammation through different means) should be the knock-out blow to CH, at least until an even more effective variation on this strategy can be found. And that's something I want to emphasize: I do believe an even more effective approach to CH may well be found than what I'm proposing, in the future. But for those suffering today, especially chronic CH'ers, who have little hope of a respite due to a cycle-end, I'm just giving details of what's currently working with a perfect record for a chronic CH'er RIGHT NOW for me.

I also want to end by saying that if anybody has actually tried Vimovo themselves, and had bad experiences with it in the dosages I'm talking about in particular, or know of anybody who has, by all means, please let us in this thread all know. I'm not some hot-head who doesn't want to listen. On the contrary, I want to vanquish CH, and I'm absolutely determined to do it methodically and scientifically.

NOTE: That means that I want to hear from people who have taken, or know somebody who has taken Vimovo specifically. Horror stories of maximum dose straight naproxen with no protein pump inhibitor, taken over periods of years, will not really cut the mustard, please. That's not what I'm after.

Thanks.

Hoppy wrote on Feb 6^th, 2016 at 1:47am:


This is an 'as well as', not an 'instead of' regime. I'm all in favour of the D3 regimen. It just wasn't working well enough for me by itself, so after two months of still getting CH's on it, so I decided to add a couple of things, Vimovo and melatonin, to it.

All I'm doing is kicking in an afterburner for the D3 regimen!

Hoppy wrote on Feb 7^th, 2016 at 2:06am:


If melatonin is some sort of confirmed wonder treatment, why haven't I or my neurologist seen or heard anything about it? Why isn't there a 'melatonin' thread on this site? Where is the big announcement about melatonin if it's known to be so effective? Why hasn't anybody shared this information? I see occasional, vague aside mentions of melatonin as 'having some effectiveness' for CH, etc., but they also say there's never any additional information. 

Believe me, nobody'd be happier than me if it was the melatonin that stopped my CHs!! If all I had to do to keep CHs permanently away was take the D3 regimen and melatonin tablets, I'd be happier than a pig in sh!t! I suppose I'm going to find out shortly, though, as I have decided to try stopping the Vimovo to see how long it takes to get a CH again. It's been two days so far. We'll see!

I'll keep you posted.

Hey, Anubis, I bet you're wondering why you ever bothered to post about something that works for you, in the hope it might help others.

Your "ego problems" aside, it seems you must now do double-blind studies on yourself to rule out extraneous pulcritudes.

Relax, mate. Many good people with interesting thoughts have been sent away with their tail between the legs because their ideas were new.

Shame, really, because some of those ideas were really good and, with no thanks at all, have gone on to become gospel within the CH community.

I'm thrilled your new weapon is working for you and thank you for passing on such excellent research and information in the hope it might help another ClusterHead.

Cheers and beers,

Brian down under.

anubis44 wrote on Feb 7^th, 2016 at 2:38am:


I was thinking about this, and actually, I'm not so sure that stopping the Vimovo and not getting a CH within a comparatively short period of time would be proof that the Vimovo, in combination with the D3, didn't stop the CHs.

I have a notion that CHs are caused by a sort of negative feedback loop of inflammation in the tissues around your trigeminal nerve. The fact that they're inflammed itself stimulates the production of more COX-2, which in turn causes them to be more inflammed, which stimulates more production of COX-2, etc., and this feedback loop spirals out of control, and this process is obviously somehow tied to our circadian rhythm.

My theory on this is that the D3+Vimovo at maximum dosages over a period of 2 weeks reduced the amount of inflammation in the tissues around my trigeminal nerve enough to break that negative feedback loop and make me pain-free, but that I was only just past the threshold of that feedback loop starting up again, and that's why stopping the Vimovo the first time brought on shadows within about 4 days. The continuation of the Vimovo, albeit at lower, maintenance doses of 1 per day, and then 1 every couple or 3 days (along with the usual 10,000iu D3 every day) further reduced the inflammation to levels where it might take a while for them to go back up again enough to trigger a CH.

I wouldn't under-estimate the combined anti-inflammatory potency of the the D3+Vimovo, but I will honestly report my findings here if I do get a CH. As of today, I'm at 5 days without any Vimovo, and not a hint of shadows.

anubis44 wrote on Feb 9^th, 2016 at 7:03pm:


I understand your thought process and I can see how this makes it difficult to differentiate between if vimovo was or was not the active ingredient that made the difference, especially when tried on just one person.

First off, whatever it is, you're not having CH pain, which is great.

What now needs to happen is for others to consider if this may be an option for them and to try it, working with their doctor, and see if it too works for them.

anubis44 wrote on Feb 10^th, 2016 at 2:38pm:


I agree with the D-3 but Naproxen is poison.  You're a cadre of one son.

                     Potter

blacklab (colin),

Thank you very, very much for the supportive words. They encourage me to keep posting my regular updates on this experimental treatment regimen, which incidentally, is still working famously. Still not a single shadow or CH, and it's been 3 months and 10 days, and now 8 days off the Vimovo, as part of my test.

Although I am still figuring this out as I go, it is beginning to look like once you stop the CH's with the D3+Vimovo at a loading dose of 2x500/20mg Vimovo daily for about ~3 weeks, and you've been on a maintenance dose of, say 1x500/20mg Vimovo for another month or so, you can start to taper down the Vimovo quite a bit more, so yes, SO FAR (and I want to stress that this is just my current thinking, as I'm breaking my own ground here in figuring this out), it's looking like this could be a longer term treatment routine.

So to summarize, my current, preliminary take is that it's beginning to look to me like one of the following might be possible:

1) You won't need any more Vimovo at all after breaking the COX-2 negative feedback loop with D3+max dose Vimovo daily for about 2-3 weeks, and your inflammation levels have been brought down low enough after an additional month or two on 1 or even less than 1 Vimovo daily, for the daily D3 to keep them there by itself (I'm a little doubtful of this possibility, but I want to keep my mind open to it until it's proven otherwise).

2) You may need an extremely low longer term maintenance dose of Vimovo, like 1 or 2 tablets a week, along with the usual, daily D3.

As I'm on day 8 of stopping the Vimovo, and I'm just taking 10,000iu of D3 (with the very occasional doubling up to 20,000iu, perhaps once or twice a week), and I'm still CH-free, I'm thinking the inflammation levels in my body were knocked down very effectively by the combination of the two, and it will be some time before they start to rise again to a level where I'm at risk of a CH again. I'm hoping that I will get some warning of this, like a faint shadow with no CH, (like I had the first time I stopped the Vimovo for 5 days after only 1 week of being pain-free back in mid-November). This would normally be my cue to take a little bit of Vimovo again with my D3, or find some other way to reduce the inflammation (I'm still open to alternatives, but the Vimovo has done the job so far, when nothing else has worked). I was thinking I'd stay off the Vimovo until I actually got a CH, but I'm not sure I would be willing to let my inflammation levels rise that high once again, now that I have such an incredibly effective and simple response at my disposal. After all, it's not just CHs that happen at such high levels. I also just feel crappier, even between the CHs. It's very hard once you've been pain-free to let yourself get that sick again just to prove a point to some doubting Thomases! But I'll see what I do. I really, really just want to help other CH'ers!

Chronic, and want to know if D3+Vimovo would work for you?

On that note, I would like to propose a suggestion to anybody who's tried the Batch D3 regimen, and found that it didn't stop their CHs, especially if you are chronic. My suggestion? As a test run for the Vimovo, (and only if you are able and there are no specific health reasons you are aware of that you should not try this) you can try the 5 day D3+Ibuprofen combo test that I did, taking the usual daily D3, but with a couple of extra strength Advils every 4-6 hours for those 5 days, and see if that stops your CHs. It did for me. I took two extra strength Advils when I woke up in the morning, right after breakfast on a full stomach, 2 more around noon, along with my daily D3 dose of 10,000iu with my lunch, on a full stomach, and 2 more again just after dinner, again on a full stomach to minimize the potential for any irritation. If this IS effective for you, as it was for me, you are probably a good candidate for the D3+Vimovo routine in this thread, and you might want to ask your doctor/neurologist about it.

As always, I'll keep everyone posted on any developments.

Hi Anubus,  thanks for the update.
  Hey, Batch does D3 burn downs all the time to test the d3 half life !    you owe it to us to burn down on vimovo and give us the results ???    
na, just kidding, If I was pain free I sure as hell wouldn't change things up !   a lot of admiration goes to batch for what he does...
I guess its easier to guage any sort of success with someone that is chronic, rather than an episodic sufferer, but the question arises, that presumably an episodic sufferer, once out of cycle, doesn't have an inflammation problem, hence enjoying a pain free period so why does it return and therefore they go back into a cycle. Is there something else going on with episodic sufferers compared to a chronic one ?  If you catch my drift ?
If we are both the same, then you would think that you would return at some stage to a cycle, being chronic ?
I understand your theory of both the Vimovo and the d3 working together to reduce inflammation, for some it appears D3 alone is enough ( unfortunately I'm not one of them ).
There really is only one way as I see it to definitively find the true merits of your trial and that would be to eventually burn right off it ! Your chronic, so something has definitely changed for you, reducing Vimovo gradually till eventually you were completely off it, then with no return of clusters and being stand alone on the d3 regime and remaining pain free, would indicate that a short term dual dosage of both could be successful for those that cant go fully pain free on the D3 regime alone ?? 
  Prednisone offers that short term relief on a tapered course, until you finish, then back come the clusters ! But we all know what levels we have to take to get relief, which aren't a good long term preventative as you know. 
   all very interesting !!!!!!!
colin

 

Hey Annubis, I have a feeling -and i hope for you- that you are going to stay CH pain free even without the Vimovo. The reasson for this is that now that you've been taking the D3 regimen for some time, your D3 levels are more than likely in the green zone to achieve a PF status. Of course that would be if you are also taking ALL of the co-factors as per Batch (including a 3 months course of B50).
You could also take a good Probiotic as well, it worked for me to get rid of the occasional few shadows I was still getting.
I do understand that you were taking vimovo at a low dose (1 to 2 tablets/week) and I am delighted that you are pain free, but if there was a way to avoid taking it completely, that would be all the better.
I've enjoyed reading your posts and i do see that naproxen is not as bad as many other drugs but it can still have nasty and dangerous side effects.
Hopefully you will stay PF with the D3 regimen only, and maybe a good probiotic

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Take care
Keep us posted

All the best

Yes, Hoppy. Day 8 of no Vimovo now, and I'm still completely CH free. The D3+Vimovo for 3 months must have knocked down my COX-2/prostaglandin levels to very low levels. Not even a hint of a shadow, and frankly, it's not only the CH's that stopped. I've also been feeling better generally. Having lots of inflammation in our bodies doesn't just give us CHs, it also has other negative effects--we just don't notice them, understandably, nearly as much as the CHs!

Remember that I'm still taking the D3 every single day, so that's certainly helping to maintain my now-lowered inflammation levels. I do think it's conceivable that I'll have to take a very small maintenance dose of Vimovo (possibly 1 a week or something like that), but I don't yet know for sure.

I'll continue to keep everyone posted.