*** A 1 year and (nearly) 1 month update on Vimovo (naproxen with esomeprazole magnesium)/10,000iu vitamin D3/10mg melatonin ***

I was an episodic CH sufferer since 2007, and I had been a chronic CH sufferer since August of 2014. Since starting a daily regimen of 500/20mg Vimovo, a 10,000iu vitamin D3 tablet, (I've also found that regulating my sleep cycles with 5-10mg melatonin tablets is helpful in getting your sleep cycles back on track), and I have had exactly ONE single CH since Nov. 2nd, 2015! It has been 100% effective!! No, I'm not exaggerating. Only ONE single CH since I started taking  this regimen, and that single CH is explained very easily below.

NOTE: I am now down to 1 daily 10,000iu D3 tablet, and only 1 Vimovo every few (3-5) days. The Vimovo is so effective, I don't even need 1/day any longer.

December 1st 2016 Update - still pain-free!

Actually, I have had exactly ONE CH in the one year I've been on this regimen. Why one? Simple. My GP decided after my latest blood test that my 25(OH)D serum level (Vitamin D3) level was 'a little high' (I believe it was about 100nm or so) so she decided I should cut down to one 10,000IU tablet per week instead of basically 1 per day. All was OK for about 3 1/2 weeks or so, until I noticed a little bit of a shadow when I woke up the morning of Sunday November 25th. Still not having taken any Vitamin D3 or Vimovo, about 45 minutes after falling asleep Sunday night, I woke at 1:40am in the early morning hours of Monday November 26th with the first CH I've had in over a year! Clearly, the reduction of my D3 intake had brought this on, so I immediately resumed with 2x10,000IU tablets of D3+1x500/20mg Vimovo. Luckily, this CH was comparatively mild (about a 4-5), and as I have resumed the D3+Vimovo before bedtime every night since, I've had no more CHs. I've also just had a good chat with my GP. This REALLY works!

How I arrived at augmenting Batch's D3 with Vimovo or
How about an NSAID to turbo-charge the D3 anti-inflammatory regimen?

The key was that I knew Batch was onto something with the D3 anti-inflammatory approach. So I looked further into how inflammation works. The simple mechanism is:

                      ------->                                            ---->                               ----->
COX-2 enzime catalyzes arachidonic acid in your body into prostaglandin, which swells tissue surrounding your trigeminal nerve, causing CH

While D3 inhibits the expression (production) of COX-2 to an extent, NSAIDs inhibit the enzime catalyzation process of arachidonic acid into prostaglandin. Normally, NSAIDs such as Ibuprofen take far too long to work once you start to sense the onset of a CH. Even taken almost continuously by themselves, they have not stood out as completely effective against CH. But I wondered, as a chronic CH sufferer (I was getting 1-2 every day, and sometimes even 3 in a 24 hour period, for over a year) and taking the D3 regimen, what would happen if I ALSO 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! (What I didn't know, at the time, but later found out, is that there is a synergistic boost to the effectiveness of both the D3 and NSAIDs such as Ibuprofen and Naproxen when combined). 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.

D3 + Naproxen would work, but Naproxen without a protein pump inhibitor might not be good for you over time

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 I had started to feel better fairly 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, along with my D3, had blocked any CHs for 5 days solid, I was encouraged to try Naproxen. However, Naproxen by itself can be 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 (a protein pump inhibitor) which greatly reduces 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 during this loading dose period (I must have had one hell of a lot of inflammation in my body!) from Oct. 15 to Nov. 2nd, but after Nov. 2nd, none at all!

Vimovo dosage

I have been taking only 1 Vimovo every few days, 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? At this point, I am still experimenting with how little Vimovo I can take and still remain pain-free. Understandably, I am something of a wimp when it comes to the prospect of deliberately trying to trigger a CH, but with the interest (and skepticism) many have shown in this augmentation to the Batch D3 regimen, I am determined to provide some hard data on just how little Vimovo is required to make this work. My hunch after three months is, it might take a surprisingly small dosage of Vimovo to maintain a pain-free life, along with the D3 regimen.

Although there are some health considerations/concerns with the longer-term effects of Naproxen, in conjunction with the Esomeprazole Magnesium in Vimovo, they seem 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 rate to potentially dangerous levels and made me extremely tired and mentally dazed at the dosages which seemed to be required for mere partial efficacy.

Role of melatonin/sleep regularity

I don't know just exactly how much of a role 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!

NOTE: Further down in this thread, there is some petty sniping about the safety of the Naproxen in Vimovo. To provide you with an unvarnished, objective take on Naproxen with a protein pump inhibitor, which is what Vimovo is, here is the wikipedia entry:

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In short, Vimovo should be safe, even for people with a history of stomach ulcers, but of course, please consult your doctor before taking it anyhow.

An aspirin isn't gonna do shit for ch.

           Potter

Interesting post, thanks for sharing Anubis.  I'll be interested to see what Batch has to say about this but good on you for digging a bit. Hope your pf days are long and happy.

Sorry to say, but over the counter pain killers just don't work when it comes to treating CH's. They are known to help in relieving shadows, but that's all.


Hoppy

It may well be the combo of the D3 and melatonin that are doing the bulk of the work here. and remember he isn't using the vimovo as a painkiller but as an ant inflammatory, which sort of ties in with the whole D3 concept.
I wouldn't toss this out the window just yet, rather debate it sensibly, its working for him.

Wayne wrote,It may well be the combo of the D3 and melatonin that are doing the bulk of the work here.

More than likely.

Hoppy

Hoppy wrote on Jan 29^th, 2016 at 5:22pm:

Wayne wrote,It may well be the combo of the D3 and melatonin that are doing the bulk of the work here. More than likely. Hoppy

Not a long time clusterhead that hasn't tried any number of treatments...including naproxen+...as has been reported and tried before...myself included. It seemed to work a tiny bit for me...umm...sorta like cayenne pepper up the nose. Long term?.....nope.....but... WHATEVER works for you does me no harm...just be prepared for when it DON'T....

I agree with Wayne and Hoppy. My previous neuro...top headache specialist in Seattle then ....and now a primary at Stanford....said SHORT term use of naproxen...for MINOR cluster hits was ok (unenthusiastically)... but absolutely useless for major... and unacceptable for long term use as the resulting side effects were highly dangerous..................

Best

Jon

I posted a response over on the other thread before I saw this, sorry.
Yep, after more research, the word SERIOUS long term effects comes into play.
This cannot be compared to less problematic than verapamil as was said on the other thread.
And I have to re quote what my doctor said about vimovo.
   a "dirty drug" short term usage o.kbut needs to be highly managed for anything other than short use.

Colin

wrote on Jan 29^th, 2016 at 11:50am:

An aspirin isn't gonna do shit for ch.            Potter

Not talking about an aspirin, I'm talking about taking 10,000iu of Vitamin D3 (Batch regimen), 1 or 2x500/20mg Vimovo daily, and regulating your sleep routine with 10mg melatonin, and even sleeping pills of some sort (for me it was trazadone) if necessary to get you back on an 8 hours/night sleep routine. But the Vimovo/D3 combination was the 'new' break-through discovery I wanted to share with everybody. I really works. I swear it. Not a single CH in 3 months now, and I was chronic from Aug. 2014 to Nov. 2nd 2015, when I started this.

Take it or leave it, I just felt it was my moral duty to report something that stopped CHs from happening for me.

Hoppy wrote on Jan 29^th, 2016 at 4:03pm:

Sorry to say, but over the counter pain killers just don't work when it comes to treating CH's. They are known to help in relieving shadows, but that's all. Hoppy

Well, the Vimovo is a prescription drug. The Advils I took in maximum dosage are over-the-counter, but you can't take Advil every 4-6 hours forever. What I posted really works. I wouldn't be telling you this if it didn't really, actually stop CHs for me.

Wayne wrote on Jan 29^th, 2016 at 4:20pm:

It may well be the combo of the D3 and melatonin that are doing the bulk of the work here. and remember he isn't using the vimovo as a painkiller but as an ant inflammatory, which sort of ties in with the whole D3 concept. I wouldn't toss this out the window just yet, rather debate it sensibly, its working for him.

You're welcome, and thank you, Wayne, for at least believing my results. Frankly, I've tried many things that others have said worked, to no avail, and become quite cynical about suggested treatments myself. I swear to god, I would never post this unless it was really, truly working for me.

And no, I don't know exactly what part of my routine is the single most critical, though I would say that it's probably whatever is reducing/inhibiting production of COX-2 in my system, but I do know that when I have stopped the Vimovo for more than 3-5 days a couple of times, I have started to get shadows again, so I go back on it, along with the D3 and melatonin/regular sleep routine. I am currently 3 days into trying to go without Vimovo again (just taking D3 and melatonin) and so far, so good.

One point I want to make here, too, is that I can now drink alcohol. Yes, you heard me right. I can have a couple of beers, I can drink some wine, I can have liquor. For first time in a few years last week, I actually got tipsy on margaritas at a Mexican restaurant! And no CH! That's one of the things that made me think this is really something effective, and not just a fluke. I could NEVER drink alcohol once I went chronic without getting a severe CH beating, until now. Same goes for chocolate and cheese, etc. In fact, nothing I eat now causes a CH. If that's not evidence that something is working, I don't know what is.

jon019 wrote on Jan 29^th, 2016 at 6:56pm:

Hoppy wrote on Jan 29th, 2016 at 5:22pm: Wayne wrote,It may well be the combo of the D3 and melatonin that are doing the bulk of the work here. More than likely. Hoppy Not a long time clusterhead that hasn't tried any number of treatments...including naproxen+...as has been reported and tried before...myself included. It seemed to work a tiny bit for me...umm...sorta like cayenne pepper up the nose. Long term?.....nope.....but... WHATEVER works for you does me no harm...just be prepared for when it DON'T.... I agree with Wayne and Hoppy. My previous neuro...top headache specialist in Seattle then ....and now a primary at Stanford....said SHORT term use of naproxen...for MINOR cluster hits was ok (unenthusiastically)... but absolutely useless for major... and unacceptable for long term use as the resulting side effects were highly dangerous.................. Best Jon

I'm fully prepared for this not to work. The reason I even bothered to start this thread is that I was chronic, and now I'm not, and haven't had a cluster headache since they stopped on Nov. 2nd of last year. That's 3 solid months as a chronic sufferer without a single CH. Is this absolute, incontrovertible proof that it's a long-term treatment. Of course not. But friggin' verapamil or even worse, corticosteroids like prednisone are FAR worse than Vimovo in my view, and I've tried all three of them myself, personally. The corticosteriods are like hunting a squirrel with an atomic bomb (WAY overkill, as all you want is the anti-inflammatory properties, without all the other, myriad effects) and verapamil slows your heart down to the point that it's dangerous if you take enough for it to start having any effect on your cluster headaches. I had the sensation that I might black-out a few times when I was on verapamil, and it didn't even stop the headaches anyhow, so in my view, it's useless. Vimovo, on the other hand, as a supplement to an over-all anti-inflammatory approach, like the Batch regimen, seems like a much smaller risk for many of us. Sure, there are some that can't take it because they have ulcers, history of stomach bleeds, etc. Obviously, for those CH sufferers, this is not a viable option. But naproxen is an NSAID, similar to advil. It's in a family of medication that is widely used world-wide, for a host of other conditions. Bear in mind also, that I'm finding myself CH-free on a dose that doesn't even require me to take one every day, and the maximum dosage is two per day. It's even possible that by lowering my COX-2 production to the point that I have, I may be able to wean myself off of it entirely for periods of time, and possible buy myself the time to find an even better, safer alternative.

The point is, my CHs are GONE, GONE, GONE, and using a product that is neither going to slow my heart to a crawl and make me feel dazed (verapamil), or kill me with nasty side-effects like a weakened immune system, bone density loss, weight gain, thinning skin, nausea, vomiting and sleep troubles (prednisone).

My specialist, a neurologist here in Ottawa, himself expressed the opinion that Vimovo was by far less worrisome than any of the other alternatives he would typically have at his disposal for stopping CHs. I asked him, and he said that, for me, stopping the CHs was a far bigger priority than worrying about the effects of Vimovo. He thought the side-effects of Vimovo were trifling compared with prednisone and verapamil. With the D3/Vimovo/melatonin regimen, I can exercise, think clearly, drink alcohol, eat dark chocolate and enjoy my life again. I just wanted to share something that finally worked, after 9 years of, at best, sometimes mitigating the strength of the attacks with Zomig 5ml nasal sprays, my previously most effective treatment.

Right now, I'm not getting any CHs at all. Thought that was worth sharing.

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, and to provide additional details about it.

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, at least for the short and medium term. I am still on the lookout for something that can do what it does with fewer potential long-term side-effects, but I would point out that even straight naproxen was responsible for fewer fatalities in 2014 than Ibuprofen, the main ingredient in Advil, so I hardly consider it to be a 'dangerous' substance.

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 that 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". (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)

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. As I've already mentioned, just as a test for my theory that inhibiting COX-2 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 Advil 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.

Thanks for sharing this mate and, with my limited medical knowledge, it seems to make sense, its like a turbo charged version of the D3 regimen. Lets hope it continues to work for you, please keep us updated.

Thank you for your support, Wayne. I am only reporting my experience out of the same sense of civic duty that I felt when I was military. I don't want anybody else to suffer with CHs like mine if I have information that can help them avoid that torture. People can do with this information as they will. If they're scared to death of any component in my routine, nobody's forcing anything down their throat. Constructive criticism is good. Petty sniping is not helpful to anyone.

I will continue to update this thread in the event that the treatment routine I'm following fails, or at milestones of success, to keep everyone updated on its effectiveness. I will also try to answer any questions I can. Please feel free to ask me anything, and I will do my best to respond.

Vimovo is Naproxen which will eat a hole in your stomach, no ifs ands or buts.  Bad advice.

                  Potter

Wayne wrote on Jan 29^th, 2016 at 4:20pm:

It may well be the combo of the D3 and melatonin that are doing the bulk of the work here. and remember he isn't using the vimovo as a painkiller but as an ant inflammatory, which sort of ties in with the whole D3 concept. I wouldn't toss this out the window just yet, rather debate it sensibly, its working for him.

It's the D3 and Vimovo. Positive about this, because I was taking the D3 and the melatonin for a couple of weeks before I even started the Vimovo, and it wasn't working. Only once I introduced the Vimovo did my CH's stop. After they stopped, I was able to taper down the Vimovo to 1 per day, and now, I've been able to get it down to 1 Vimovo every few days (3-5). Believe it. It works. Otherwise to take crap from skeptics.

wrote on Feb 3^rd, 2016 at 11:24am:

Vimovo is Naproxen which will eat a hole in your stomach, no ifs ands or buts.  Bad advice.                   Potter

On the contrary. There are PLENTY of ifs ands and buts about this.

It's naproxen with esomeprazole magnesium. The esomeprazole magnesium mitigates potential to induce stomach bleeds. It's a different proposition entirely from straight naproxen. In any case, if my experience is anything to go by, you'll only have to take the maximum dosage of Vimovo of 2x500/20mg daily for about two weeks, then you'll be stepping it down to maybe one 500/20mg every few days. I'm a chronic sufferer who's been CH-free all of a sudden for over 3 months with D3, Vimovo and melatonin.

It's not bad advice if your doctor says it should be safe for you, and it stops your CHs dead cold. You're going to be taking so little Vimovo (naproxen) once you've got your COX-2 levels low enough to stop the CHs, that it is almost certainly not going to harm most people. Your sniping about this being bad advice is only going to turn some sufferers away from something that may be the only safe and effective treatment to stop their CH's. Is that what you want, mate?

Just another quick supplemental information update to the D3/Vimovo/melatonin variation I've been taking, and which has been working for me, a hitherto chronic CH'er, for over 3 months.

What causes the inflammation that triggers CHs?
My thought is that CHs are caused by inflammation in the tissues surrounding the trigeminal nerve. The inflammed tissue expands and much like a boa constrictor crushing its prey, the tissue crushes the trigeminal, causing a CH. The chemical that inflames the tissue is prostaglandin. How is prostaglandin produced? To keep this simple, for the purposes of CH, the relevant culprit for prostaglandin synthesis is COX-2

Now, looking more carefully at both Vitamin D3 and what it does and the naproxen in Vimovo and what it does, here's my basic summary to make it easier for everybody to perhaps understand why these two seem to have been so effective for me when taken together to halt CHs:

-Vitamin D3: basically inhibits COX-2's production of prostaglandins
-Naproxen: basically inhibits the production of COX-2 in the first place

Thanks to Batch sending me an article about Vitamin D3's ability to inhibit prostaglandin pathways, I've been able to get a better overview of what's going on. My theory is that in CH sufferers, like many other inflammatory disease sufferers, the body is periodically overproducing COX-2, possibly in some kind of synch to the body's circadian rhythms. High doses of Vitamin D3 help mitigate the effectiveness of COX-2 in catylising arachidonic acid into prostaglandin, which is very helpful, but if you have a huge amount of excess COX-2 released into your blood, this is only going to have a somewhat limited effectiveness. My idea was to add a 'right hook' to Vitamin D3's 'left hook', and to simultaneously reduce the body's ability to produce COX-2 in the first place. So there's less COX-2 to catalyse arachidonic acid, as well as a reducing the remaining COX-2's ability to synthesize arachidonic acid into prostaglandin. My goal now is to find the minimum effective dosage of Vimovo. Bearing in mind that I was and still am taking at least 10,000iu of D3 everyday, regardless of my Vimovo dosage, I have gone from taking the maximum 2x500/20mg daily for 2 weeks in order to stop the CHs, to 1x500/20mg daily maintenance once they stopped, to taking less than 1 per day now. I can now reliably go for 3-5 days without taking any Vimovo before sensing any shadows, and so far, resuming a single Vimovo dosage has kept me from getting any CHs. I now get a warning shadow long before I ever get a CH! I have not yet tried to see how long I can stay off the Vimovo before I get an actual CH, as I'm sure all of you will understand, I am not eager to get one. However, when I am satisfied that I have been pain-free for long enough that this treatment is incontrovertibly effective, I may try to see how long it would be without Vimovo before my COX-2 levels increased naturally back up to the levels where I once again get a CH.

Massages sometimes gave me even worse CHs?
Not only am I a chronic CHer who has been completely CH-free for over 3 months now on a D3/Vimovo/melatonin regime, but there are other factors which seem to make the reduced COX-2/reduced COX-2>prostaglandin anti-inflammatory theory 'add-up'. For one thing, I used to (before the current regimen) get particularly bad CHs immediately following after a deep-tissue massage. I now know why. Arachidonic acid, the 'fuel' for COX-2 to produce prostaglandin, exists in the largest concentrations in your skeletal muscle tissue! So, whenever I had a deep-tissue massage or did strenuous exercise, it was releasing larger quantities of arachidonic acid into my bloodstream, providing my already elevated levels of COX-2 with more 'fuel' with which to produce prostaglandin, and thereby, inflame the tissues surrounding my trigeminal nerve! It all makes sense now!

Also, I started getting osteo-arthitic pain in my right hand around the time I went from being episodic to chronic back in August of 2014. This lends credence to the theory that excess COX-2 was at least partially responsible for both the arthritis and the chronic CHs. Also, the fact that the D3/Vimovo routine has not only halted my CHs, but also largely mitigated the arthritic sensations in my right hand is only further evidence that maintaining low COX-2 levels is an effective treatment for both conditions. At Batch's suggestion, I have also started taking Vitamin K2 (K7) on a regular basis--something I only just started doing 2 days ago--and it already seems to be helping to further eliminate the arthritic sensation in my hand that I was waking up to, in the last two mornings.

That's all for this update!

Please do not hesitate to ask me any questions!

Wayne wrote on Feb 2^nd, 2016 at 4:46pm:

Thanks for sharing this mate and, with my limited medical knowledge, it seems to make sense, its like a turbo charged version of the D3 regimen. Lets hope it continues to work for you, please keep us updated.

Wayne,

Yes, the D3 inhibits COX-2's conversion of arachidonic acid into inflammation-causing prostagladins, but the naproxen in Vimovo is very effective in reducing the amount of COX-2 in your body in the first place, so together, they're like a 1-2 knock-out punch to inflammation which triggers CHs.

At this point, I'm experimenting with just how little Vimovo is required to maintain a CH-free existence, and so far, the results are promising. Gone from taking the maximum of 2x500/20mg Vimovo per day when I first started back in October, to now taking only 1x500/20mg every few days. It looks like once you've stopped the CHs, which took a little over 2 weeks for me, your COX-2 levels might be low enough at that point to drop down to 1x500/20mg per day for about another week or two, to even less than 1 per day thereafter. Still trying to figure out the minimum dosage now, but so far, not 1 single CH since they stopped back on Nov. 2nd!

Regards,
Anubis.

anubis44 wrote on Feb 5^th, 2016 at 2:29pm:

wrote on Feb 3rd, 2016 at 11:24am: Vimovo is Naproxen which will eat a hole in your stomach, no ifs ands or buts.  Bad advice.                   Potter On the contrary. There are PLENTY of ifs ands and buts about this. It's naproxen with esomeprazole magnesium. The esomeprazole magnesium mitigates potential to induce stomach bleeds. It's a different proposition entirely from straight naproxen. In any case, if my experience is anything to go by, you'll only have to take the maximum dosage of Vimovo of 2x500/20mg daily for about two weeks, then you'll be stepping it down to maybe one 500/20mg every few days. I'm a chronic sufferer who's been CH-free all of a sudden for over 3 months with D3 and Vimovo. It's not bad advice if your doctor says it should be safe for you, and it stops your CHs dead cold. You're going to be taking so little Vimovo (naproxen) once you've got your COX-2 levels low enough to stop the CHs, that it is almost certainly not going to harm most people. Your sniping about this being bad advice is only going to turn some sufferers away from something that is likely safe and effective. Is that what you want, mate?

  O2 at 25lpm with a non-rebreather mask such as the Optimask is safe and effective.  Naproxen is not safe nor effective.

           Potter

wrote on Feb 3^rd, 2016 at 11:24am:

Vimovo is Naproxen which will eat a hole in your stomach, no ifs ands or buts.  Bad advice.                   Potter

On the contrary. There are PLENTY of ifs ands and buts about this.

It's naproxen with esomeprazole magnesium. The esomeprazole magnesium mitigates potential to induce stomach bleeds. It's a different proposition entirely from straight naproxen. In any case, if my experience is anything to go by, you'll only have to take the maximum dosage of Vimovo of 2x500/20mg daily for about two weeks, then you'll be stepping it down to maybe one 500/20mg every few days. I'm a chronic sufferer who's been CH-free all of a sudden for over 3 months with D3 and Vimovo.

It's not bad advice if your doctor says it should be safe for you, and it stops your CHs dead cold. You're going to be taking so little Vimovo (naproxen) once you've got your COX-2 levels low enough to stop the CHs, that it is almost certainly not going to harm most people. Your sniping about this being bad advice is only going to turn some sufferers away from something that is likely safe and effective. Is that what you want, mate?[/quote]

  O2 at 25lpm with a non-rebreather mask such as the Optimask is safe and effective.  Naproxen is not safe nor effective.

Potter[/quote]

O2 is an abortive technique that has never been reliably effective for me. With very small quantities of Vimovo supplementing my D3, after the initial loading dose to stop the CHs, it has been a 100% reliable preventative. Beat that with O2. Not ONE CH in 3 months for a chronic CH'er.

wrote on Feb 3^rd, 2016 at 11:24am:

Vimovo is Naproxen which will eat a hole in your stomach, no ifs ands or buts.  Bad advice.                   Potter

On the contrary. There are PLENTY of ifs ands and buts about this.

It's naproxen with esomeprazole magnesium. The esomeprazole magnesium mitigates potential to induce stomach bleeds. It's a very different proposition from straight naproxen. In any case, if my experience is anything to go by, you'll only have to take the maximum dosage of Vimovo of 2x500/20mg daily for about two weeks, then you'll be stepping it down to maybe one 500/20mg every few days. I'm a chronic sufferer who's been CH-free all of a sudden for over 3 months with D3 and Vimovo.

It's not bad advice if your doctor says it should be safe for you, and it stops your CHs dead cold. You're going to be taking so little Vimovo (naproxen) once you've got your COX-2 levels low enough to stop the CHs, that it is almost certainly not going to harm most people. Your sniping about this being bad advice is only going to turn some sufferers away from something that is likely safe and effective. Is that what you want, mate?[/quote]


wrote on Feb 3^rd, 2016 at 11:24am:

O2 at 25lpm with a non-rebreather mask such as the Optimask is safe and effective.  Naproxen is not safe nor effective. Potter

From what I understand, Vimovo is both safe and effective for the vast majority of people. Really, it's at least as safe as Advil (Ibuprofen), if not safer. It's usually prescribed as a long-term arthritis medication. THIS IS NOT NAPROXEN BY ITSELF. I WOULD NEVER ADVOCATE NAPROXEN BY ITSELF, so please smarten up, get off your grouch couch and inform yourself. My life was practically ruined by episodic and then, chronic CH, and I'm letting anybody who wants to know, know how I managed to make the pain stop and get my life back. Period. NO ego involved, just a sense of civic duty.

Read the actual stats for this med before you judge it, and not just the mandatory US-style scare-the-crap-out-of-people warnings the company MUST publish in the US because you have the most litigious society on the face of the earth, and they're trying to cover their asses from even the most ridiculous of lawsuits. My own specialist didn't bat an eyelash writing the prescription for this because, his words: "My treatment options for you now that your are chronic are quite limited anyhow, so if this works for you, by all means take it. It's MUCH safer than cortico steriods like prednisone or botox injections, which are the only other treatments left in my tool-kit to try to break your chronic condition." You're also utterly ignoring how little Vimovo is required to obtain my results. We're talking about only 2 WEEKS of the maximum dose for me, and HALF the maximum dose for a week or so afterwards, and EVEN LESS THAN HALF of the maximum dose thereafter for maintenance. To be 100% (not 99%, or 98%, or some other, lesser percentage) CH-FREE. I don't need oxygen, I don't need Zomig (Zolmitriptan), I don't need anything other than my ~10,000ius of D3, the occasional Vimovo so far to maintain, and 10mg melatonin most nights to regularly get a good night's sleep. I'm 100% CH-free, and no, I'm NOT bullshitting you. I mean literally not even a tiny, little Kip.5 CH in 3 months, after one or more CH's EVERY SINGLE DAY for over a year leading up to this treatment.

O2 is an abortive technique that has never been reliably effective for me. With very small quantities of Vimovo supplementing my D3, after the initial loading dose to stop the CHs, it has been a 100% reliable preventative. Not ONE CH in 3 months for a chronic CH'er. I don't even need to keep a Zomig 5ml in my pocket anymore. I can now drink as much alcohol as I like, eat whatever I want, even the darkest chocolate or MSG-laden Chinese food (which used to utterly guarantee my demise by CH). You name it as a trigger and I can now do it, without any risk of a CH. Beat that with you O2. I'm not going to walk around with an Oxygen tank everywhere I go. If you want to do that, knock yourself out, but don't snipe and ward others away, especially chronic suffers, from something that might just give them their life back.

  I think you want validation to feed your ego.

                      Potter

wrote on Feb 5^th, 2016 at 9:46pm:

I think you want validation to feed your ego.                       Potter

No ego. Just results. I'm only bothering with this thread because I don't want others to suffer as I did. Period. Ego be damned.

At this point, I'm beginning to suspect you just don't want what I'm doing to work, frankly.

Hey, Anubis, I'm glad you've found something that's safe and effective for you and have taken the time to make it known to others so they can look further into it and make an informed decision about whether or not it's right for them.

Wouldn't suit me, but may well help another ClusterHead which is why many of us are here.

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

Hoppy

Hi Anbus,
                sorry Ive been off line for a while.
Thanks for your detailed reply. You are quite correct, that its obviously not suited to everyone.  I guess those that have used it or have knowledge of it, are probably, in their own way, letting you know of its past effect on them or their knowledge of its side effects.
Listen, didn't want to come across negative, I fully understand the drive to become pain free and are truly happy you've got their ! touch wood.
You sound as though you've researched it, no of its possible side effects and are working with your doctor.   So well done !  That's by far the best approach when taking these sorts of potential problematic drugs.
I hope you continue to give us feed back on how your going.
Good luck with it all.
regards
colin

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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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.

AussieBrian wrote on Feb 5^th, 2016 at 11:35pm:

Hey, Anubis, I'm glad you've found something that's safe and effective for you and have taken the time to make it known to others so they can look further into it and make an informed decision about whether or not it's right for them. Wouldn't suit me, but may well help another ClusterHead which is why many of us are here.

Thank you, Brian, for your supportive words. It is much appreciated!

I take it you have a stomach ulcer or another pre-existing condition which precludes you from taking even a brief loading dose of D3+Vimovo? If so, you have my sincere sympathy.

If you know of a better and/or safer COX-2 inhibitor than D3+Vimovo, please share with us!

Thanks again!

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

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

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!

anubis44 wrote,  so I decided to add a couple of things, Vimovo and melatonin, to it.

5-22mg of Melatonin has an excellent record of keeping the  [smiley=evil.gif] at bay in some folk, myself included. So, how can you be sure it's the Vimovo that's working for you and not the Melatonin?

Hoppy.

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

anubis44 wrote,  so I decided to add a couple of things, Vimovo and melatonin, to it. 5-22mg of Melatonin has an excellent record of keeping the  [smiley=evil.gif] at bay in some folk, myself included. So, how can you be sure it's the Vimovo that's working for you and not the Melatonin? Hoppy.

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. :)

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

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.

There have been multiple topics on melatonin over the years:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Not sure why it hasn't been mentioned earlier too much, but Hoppy has mentioned it.


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

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!

That is a good way to see if it is what is keeping you CH pain free if the only thing you are changing is the vimovo. If the CH returns in a few days, then goes away again then it is a strong indicator that it is what is working for you.

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.

AussieBrian wrote on Feb 7^th, 2016 at 6:08am:

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.

Thanks again, Brian, for your words of encouragement.

Yes, it's certainly true that I'm not on here for all the laurels and accolades with which I'm currently being showered.  :P

Really, I just want to find a silver bullet that'll put down the CH beast once and for all. I honestly think this approach with D3+Vimovo may be one of them. I'm sure in future there will be others, perhaps even safer and more targeted, but in the meantime, I'll definitely take this one, as it's the only one I've found so far.

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

That is a good way to see if it is what is keeping you CH pain free if the only thing you are changing is the vimovo. If the CH returns in a few days, then goes away again then it is a strong indicator that it is what is working for you.

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.

THere's a lot in this thread which I'm not going to read, but I just wanted to say how wonderful you found something that works. These damn headaches have made me try everything under the sun. Please try to ignore the negative comments. It's because of the frequency of negative comments that I rarely come on this website though I often feel alone and defeated with this disease. 

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

anubis44 wrote on Feb 7th, 2016 at 2:38am: That is a good way to see if it is what is keeping you CH pain free if the only thing you are changing is the vimovo. If the CH returns in a few days, then goes away again then it is a strong indicator that it is what is working for you. I was thinking about this, and actually, I'm not so sure that stopping the Vimovo and not getting a CH within comparatively short period of time would be proof that the Vimovo, in combination with the D3, didn't stop the CHs.

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.

Mike NZ wrote on Feb 10^th, 2016 at 2:25am:

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.

I'd love it if somebody else would try the D3+Vimovo (and perhaps the 10mg melatonin, too, just to be sure) and tell us what their results were after 2-3 weeks. I want to know how effective this is for everybody else. Anybody else want to stop their CHs? Especially anybody chronic, so we know their cycle didn't just end by itself??

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

Mike NZ wrote on Feb 10th, 2016 at 2:25am: 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. I'd love it if somebody else would try the D3+Vimovo (and perhaps the 10mg melatonin, too, just to be sure) and tell us what their results were after 2-3 weeks. I want to know how effective this is for everybody else. Anybody else want to stop their CHs? Especially anybody chronic, so we know their cycle didn't just end by itself??

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

                     Potter

anubus,
              I replied in the other thread to your up date.
I did the google thing and asked the question on vimovo early on, didn't get good reading or response from a doctor.
However, you are going to get the one liners, and the negative comments, because theirs some here with blinkers on, you wont change their attitudes.  please go past that and continue with your "regime" as you seem well informed and are giving great detailed feedback.  The pain free % from batches regime, if I can recall was around 60 odd %, with another 20 plus % with greatly reduced symptoms, such as me, and 20 odd percent that it has no effect on ( I hope I've quoted the ratio correctly ).  There is a missing link for those that don't go pain free. Melatonin is a missing link for some, not all, other add on's that Batch has suggested have also raised the percentage. But it seems that there are so many factors and everyone is different that their isn't a definitive " magic pill" that definitely works for all. I know Batch works tirelessly with the likes of me and others to find that denominator that is perhaps the key element for everyone to go pain free.
I commend your analytical approach in what your doing, I watch with interest as you detail your experience with what your doing. I also think that it may open other doors or ways of thinking, towards preventatives that we haven't even thought of yet, who knows, but at least your doing this with all the knowledge of what your actually taking.
We can all read the literature on Vimova, we know how it can effect the stomach as you are aware of, You acknowledge this and are trying something out and seem to be having success. The levels needed to keep you pain free, may be so low that it removes the potential of such stomach issues ?  I don't know the answer to that ? excess of anything always carries side effects ! only your persistence will find that answer
  Forget the neandotholic comments, I think we've moved past them, some people just cant let go !!
look forward to your next up date.
goodluck
colin

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.

wrote on Feb 10^th, 2016 at 3:43pm:

anubis44 wrote on Feb 10th, 2016 at 2:38pm: Mike NZ wrote on Feb 10th, 2016 at 2:25am: 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. I'd love it if somebody else would try the D3+Vimovo (and perhaps the 10mg melatonin, too, just to be sure) and tell us what their results were after 2-3 weeks. I want to know how effective this is for everybody else. Anybody else want to stop their CHs? Especially anybody chronic, so we know their cycle didn't just end by itself?? I agree with the D-3 but Naproxen is poison.  You're a cadre of one son.                      Potter

There's always got to be a trail-blazer. I guess for this, I'm it.  ;)

So Naproxen is poison, eh? In what dosage? Over how much time? Please be specific. It's considered to be the safest of all the NSAIDs for longer-term use:

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It's also an over-the-counter medication in most western countries, and it's marketed as a menstral cramp medication as Midol Extended Relief. It's so unsafe, it's regularly sold to women to use every month for their cramps. Yeah, it's a real killer.

Did you know more people died as a result of taking aspirin, Tylenol, Excedrin and Ibuprofen in the 10 years leading up to 2014 than 'the poison' Naproxen?

From Batch:

See the list below from the FDA Adverse Event Reporting System (FAERS) database covering the 10 years up to the end of 2014 that attributes the leading cause of death to the following substances:

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

Over The Counter Supplements/Nutrients
Deaths due to MELATONIN              -  0
Deaths due to MAGNESIUM OXIDE   -  0
Deaths due to CALCIUM CITRATE     - Not Listed
Deaths due to BORON        -   Not Listed
Deaths due to VITAMIN A (Retinol)    -  6
Deaths due to VITAMIN B (Complex)  -  2
Deaths due to VITAMIN B 12             -  0
Deaths due to VITAMIN C                  -  0
Deaths due to Vitamin E                    -  2
Deaths due to VITAMIN D3                 -  0
VITAMIN D3 TOXICITY                       -  2
Deaths due to VITAMIN K1                 -  2
Deaths due to VITAMIN K2                 - Not Listed
Deaths due to ZINC OXIDE                 - Not Listed

And remember, I'm not advocating straight Naproxen for CHs, I'm suggesting Vimovo (plus vitamin D3), which is Naproxen with a protein pump inhibitor, esomeprazole magnesium, which mitigates the potential for stomach bleeds over time.

You're just blowing hot air. It's not helpful. I'm 100% CH, pain-free. Are you 100% pain-free on your treatment regimen? Be honest. If not, please stop sniping. It's not going to stop anybody's CHs, which is what I'm trying to do here.

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 ???     ;D
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

 

Anubis...I am unable to navigate the FDA FAERS list you are so obviously adept at. Please....will you list deaths  due to PPI's (proton pump inhibitors)...I notice that item is missing from your list...are there such?....

Also...without ANY consideration of naproxen...I note recent FDA concern with the the long term effects of PPI's like Nexium (esomeprazole)...including osteoporosis concerns, kidney failure, heart issues, etc...thas some scary stuff...does that concern you and/or your physician?

I actually think the polypharmacy of naproxen/esomeprazole is WAY better than just naproxen alone...and I do NOT dispute it works for you. However, I AM concerned that newer visitors to this site might jump on information that seems so right that it must be!...and it might NOT.....

I guess I should also just express my concern re the trashing/thrashing contempt you have for verapamil and steroids. Powerful drugs...boy howdy you betcha!...but THOUSANDS of clusterheads have been helped by same...including me. Verapamil is well tolerated by clusterheads for ch...at really HIGH doses....which regularly surprises physicians who normally use it for BP concerns...which is why a "headache specialist" is so important. Some can't handle...is true of ANY med...doesn't make it worse than what you have found...and has a LONG track record of success.

Re steroids...come on man....long term use of these to control CH is suicide..no reputable physician would prescribe such for same...and only the MOST desperate would continue past a normal 10 day to 2 week taper(which can be nearly MIRACULOUS in breaking a cycle...I know). We've known some here in the family...it's not a pretty picture...but the "horror" you relate does not accompany a taper for most...sheesh....a little perspective PLEASE..............

Best

Jon

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

anubis44 wrote on the 7th Feb,
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?

Just curious, are you still pain free without taking the Vimovo?

Cheers Hoppy

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.

thierry wrote on Feb 12^th, 2016 at 5:06am:

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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Take care Keep us posted All the best

Theirry,

Thanks for the supportive words.

I understand the desire to not need something like Vimovo. I get it. I, too, very much hoped that just taking vitamins and probiotics and 'all-natural' remedies would stop my CHs by themselves. I did load up my 25(OH)D serum levels Batch indicated were the threshold, to beyond 60-80nm/mL 'green zone', for two months before I tried the D3+Ibuprofen NSAID experiment which proved so successful (zero CHs for 5 days), which in turn led to my discovery of Vimovo and my D3+Vimovo trial.

But alas, that's not what happened. The D3 alone, even in very, very high doses, and my 25(OH)D levels well within the green zone for over 2 months, just didn't work for me. I'm sorry to have to say this, but it is the truth, and I'd be a liar if I told everybody that I, too, just needed lots of D3 to stop my CHs. But I knew that Batch was onto something with the D3 regimen: it's just not strong enough for some CH sufferers. Apparently, it only has a 60% pain-free effectiveness rate on its own. This is pretty darn good, but of little comfort if you're in the other 40%.

I started this thread because I stumbled across something that DID work. Doing more research, I'm finding plenty of corroboratory research to back up the effectiveness of citrical (Vitamin D3) when combined with an NSAID like Ibuprofen or naproxen. I can't help it if some people don't like the idea of Vimovo, but it's undeniably combining with the D3 to wrestle my CHs to the ground. They're gone now, and have stayed entirely away for over 3 months. And remember, I was a chronic sufferer for over a year. Since August of 2014, I had not had more than 1 single CH-free day, until Nov. 2nd of last year, after starting the D3+Vimovo routine (and melatonin, which I have also replaced with 5-HTP to try to balance my melatonin/seratonin levels so I can get up more easily in the morning).

It really, really works. So well, in fact, that my inflammation levels are so low I can stop the Vimovo entirely for days at a time (I'm up to 8 days now so far).

wrote on Feb 12^th, 2016 at 3:21am:

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 ???     ;D 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

And I, too, admire Batch for all his work on the anti-inflammatory regimen. He deserves much praise and all the accolades we can muster. It was my springboard for my trying the D3+Vimovo. I just want to say that I think a lot of people aren't understanding that taking an NSAID by itself or the D3 by itself is nowhere near as effective as both together.

Here's a link to a  are a couple of links to academic articles which outline the synergistic effectiveness of D3+Naproxen in reducing prostaglandin:

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and the operative quote from this article:

"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 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."

The mechanisms of 'prostate cell growth' are not that simple, but they are essentially predicated on prostaglandin levels. The observations are that D3+Naproxen has a synergistic effect when combined that are dramatically greater than either by themselves, requiring much lower doses of both to be effective in lowering your prostaglandin levels. To my thinking, this sounds much better than having to take very high doses of either one, which either requires you to monitor your 25(OH)D levels or run the risks of taking consistently high doses of an NSAID like Naproxen.

I know it seems hard to believe that some garden variety Advil or Naproxen, in combination with Vitamin D3 can stop your CHs. Certainly, I found out very quickly after becoming a CH sufferer back in 2007 that Advil alone won't abort an attack anywhere near quickly enough to be effective once a CH is coming on. But when I took the Advil (Ibuprofen) WITH the D3 around the clock for those 5 days as a test of my theory, in 2x400mg doses at breakfast, lunch and dinner, BEFORE I felt any CH coming on, and didn't get any headaches, it was like a bolt of pain-free lightning striking for me. I knew I was on to something that really works.

As for the idea that episodic CH'ers don't have an inflammation problem when they're out of cycle, I'm not so sure about that. Frankly, I'm beginning to think that what makes you chronic rather than episodic is the amount of prostaglandin potential you have in your system. This is >probably< based on a combination of how much arachidonic acid you have in your system, which is the 'fuel' for prostaglandin production, and how much COX-2 production you have to convert the arachidonic acid into prostaglandin. Simply put, what I'm saying is, the existence of not quite enough COX-2 to put you into a CH cycle may not necessarily mean you don't have an inflammation problem. It just might mean you don't have enough to give you CHs, but it could still well be too high to be good for you.

As for prednisone, it's a whole different ball game than the Naproxen in Vimovo. Prednisone is a cortico-steroid, and that spells serious trouble for many systems in your body over time. Read the 'Side effects' section of this link to get an idea of just how bad prednisone can be:

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anubis44 wrote on Feb 12^th, 2016 at 1:51pm:

wrote on Feb 12th, 2016 at 3:21am: 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 ???     ;D 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   And I, too, admire Batch for all his work on the anti-inflammatory regimen. He deserves much praise and all the accolades we can muster. It was my springboard for my trying the D3+Vimovo. I just want to say that I think a lot of people aren't understanding that taking an NSAID by itself or the D3 by itself is nowhere near as effective as both together. Here's a link to a  are a couple of links to academic articles which outline the synergistic effectiveness of D3+Naproxen in reducing prostaglandin: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and the operative quote from this article: "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 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." The mechanisms of 'prostate cell growth' are not that simple, but they are essentially predicated on prostaglandin levels, just as I believe are CH attacks. The observations are that D3+Naproxen has a synergistic effect when combined that are dramatically greater than either by themselves, requiring much lower doses of both to be effective in lowering your prostaglandin levels. To my thinking, this sounds much better than having to take very high doses of either one, which either requires you to monitor your 25(OH)D levels or run the risks of taking consistently high doses of an NSAID like Naproxen. I know it seems hard to believe that some garden variety Advil or Naproxen, in combination with Vitamin D3 can stop your CHs. Certainly, I found out very quickly after becoming a CH sufferer back in 2007 that Advil alone won't abort an attack anywhere near quickly enough to be effective once a CH is coming on. But when I took the Advil (Ibuprofen) WITH the D3 around the clock for those 5 days as a test of my theory, in 2x400mg doses at breakfast, lunch and dinner, BEFORE I felt any CH coming on, and didn't get any headaches, it was like a bolt of pain-free lightning striking for me. I knew I was on to something that really works. As for the idea that episodic CH'ers don't have an inflammation problem when they're out of cycle, I'm not so sure about that. Frankly, I'm beginning to think that what makes you chronic rather than episodic is the amount of prostaglandin potential you have in your system. This is >probably< based on a combination of how much arachidonic acid you have in your system, which is the 'fuel' for prostaglandin production, and how much COX-2 production you have to convert the arachidonic acid into prostaglandin. Simply put, what I'm saying is, the existence of not quite enough COX-2 to put you into a CH cycle may not necessarily mean you don't have an inflammation problem. It just might mean you don't have enough to give you CHs, but it could still well be too high to be good for you. As for prednisone, it's a whole different ball game than the Naproxen in Vimovo. Prednisone is a cortico-steroid, and that spells serious trouble for many systems in your body over time. Read the 'Side effects' section of this link to get an idea of just how bad prednisone can be: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

My issues with prednisone are that overall, it's well known to do a great deal more harm to various systems in your body than D3 or the Naproxen in Vimovo, whose longer term effects have also both been well-established in the literature. I took 7 day prednisone courses three times to deal with CHs when my specialist didn't have anything left in the toolbox to stop them. The first time, it worked well within a day or two. The second time, it took about 5 days, and it barely seemed to do the job. The third time, it simply didn't work. The conclusion I reached, since I took exactly the same dosages all three times, was that I would have had to boost my dosage levels to achieve the original results, each time: a highly dubious proposition with such a damaging drug.

Best regards.

anubis44 wrote on Feb 12^th, 2016 at 10:43am:

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.

 

Maybe it's the D3 not the naproxen,

                   Potter

anubis44 wrote on Feb 12^th, 2016 at 3:02pm:

wrote on Feb 12th, 2016 at 2:08pm: [quote author=474853444F551212260 link=1454078299/48#48 date=1455291825]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.   Maybe it's the D3 not the naproxen,                    Potter

Well, I loaded myself up on D3 for over 2 months with no cessation of my CHs. They got SOMEWHAT weaker, but they didn't stop, and I still got a few level 7s now and again. After reading more about COX-2 and inflammation, I decided to combine the D3 with some Ibuprofen as a test for combined D3+NSAID effectiveness, taken at a max dose 3 times daily, the CHs stopped dead in their tracks. Like immediately. As in that very day that I started the test. I dare you to take a couple of extra strength Advils (as well as your usual D3 dosage--this is critical, or it won't work!) with breakfast, lunch and dinner for 5 days during a CH cycle and see what the results are.  ;)

No, I'm convinced now that it's almost certainly both.

Read this:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read especially the quote: "The group saw a 25 percent reduction in prostate cell growth using only calcitriol, and approximately the same reduction using only ibuprofen and naproxen. But when they combined calcitriol 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." (italics mine)

Although it's talking about prostate cancer cells, the essential dynamic applies to CH, which is also caused by excess prostagladin production. Neither D3 by itself, even in very high levels, or NSAIDs by themselves work as well as both together. The literature supports a very strong multiplier effect when D3 is taken in conjunction with an NSAID. Naproxen is the overall safest NSAID that supports this synergistic effect when taken over time, and Vimovo is an even safer variation than straight Naproxen by itself. Vimovo is also a slow-release formula, which lasts for 12-24 hours, so you can take just 1 or 2, instead of round the clock doses of Advil, which I don't recommend for more than a few days as a trial to see if this will work for you, too.

anubis44 wrote on Feb 12^th, 2016 at 3:02pm:

anubis44 wrote on Feb 12th, 2016 at 3:02pm: wrote on Feb 12th, 2016 at 2:08pm: [quote author=474853444F551212260 link=1454078299/48#48 date=1455291825]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.   Maybe it's the D3 not the naproxen,                    Potter Well, I loaded myself up on D3 for over 2 months with no cessation of my CHs. They got SOMEWHAT weaker, but they didn't stop, and I still got a few level 7s now and again. After reading more about COX-2 and inflammation, I decided to combine the D3 with some Ibuprofen as a test for combined D3+NSAID effectiveness, taken at a max dose 3 times daily, the CHs stopped dead in their tracks. Like immediately. As in that very day that I started the test. I dare you to take a couple of extra strength Advils (as well as your usual D3 dosage--this is critical, or it won't work!) with breakfast, lunch and dinner for 5 days during a CH cycle and see what the results are.  ;) No, I'm convinced now that it's almost certainly both. Read this: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Read especially the quote: "The group saw a 25 percent reduction in prostate cell growth using only calcitriol, and approximately the same reduction using only ibuprofen and naproxen. But when they combined calcitriol 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." (italics mine) Although it's talking about prostate cancer cells, the essential dynamic applies to CH, which is also caused by excess prostagladin production. Neither D3 by itself, even in very high levels, or NSAIDs by themselves work as well as both together. The literature supports a very strong multiplier effect when D3 is taken in conjunction with an NSAID. Naproxen is the overall safest NSAID that supports this synergistic effect when taken over time, and Vimovo is an even safer variation than straight Naproxen by itself. Vimovo is also a slow-release formula, which lasts for 12-24 hours, so you can take just 1 or 2, instead of round the clock doses of Advil, which I don't recommend for more than a few days as a trial to see if this will work for you, too.

   
Nope ten years pf.  I Bust em with something far safer than naproxen.

                     Potter

Thanks for your reply Anubis,  well explained !
The one thing I've found since being diagnosed and finding this forum is that, it seems, no two people seem to be the same, what works for one, doesn't necessarily work for another, So many variables, which I guess make it so so hard to come up with a 100 % plan especially for a preventative. The regime has been fantastic for me, reducing the overall pain factor by over half or more, but not fully killing off cycles. recently I had to burn off the regime as The magnesium citrate was having a very " loose" effect on me. I'm now using mag. glycinate with great effect, but wouldn't you believe it, as soon as I burnt down I was hit with a cycle, and its remained now for going on 4 months ! my longest yet. 
There's just seems to be so many variables, or different factors that seem to run with this damn disease but I always come on here and see someone in a worst state and consider myself lucky, if one can do that  LOL
As I mentioned, I watch these updates with interest Anubis,  keep em coming !!!
regards
colin

Hi Anubis,
You certainly make a very convincing  [smiley=argue.gif] on the pros and cons of Vimovo + D3, but, now you are CH free without taking the Vimovo, I'm still wondering whether or not it's due to the vitamin D regimen finally kicking in.

I remember when I started the vitamin D regimen back in the Spring of 2012 in the middle of my cycle and the  [smiley=evil.gif] went crazy from 2 episodes/day to 6/day, I nearly gave up taking it, but my wife convinced me to stay on it, well, to cut a long story short it didn't stop my cycle, but I kept taking the regimen and the rests history.

I find with the Melatonin! I take 5mg before going to bed to help me sleep, but if you take more than 5mg it's best to take it 2hrs before going to bed so as not to wake up feeling drowsy.

Cheers Hoppy

OK, Day 10 and you anti-Vimovo people aren't going to like what I have to say.

Over the last 3 days or so, I've noticed signs of increasing inflammation. My joints in my hand started to ache a bit more, and my back has been sore than over the previous 3 months when I woke in the morning. Still, I decided to soldier on with just the D3 and no Vimovo for the sake of science.

Today, I woke up with a cough/cold. My girlfriend and I had scheduled Valentine's Day massages, but I wasn't willing to forfeit the massage. I speculated that, as I had been 10 days off the Vimovo, and I was also already noticing some inflammation indicators, it was possible that the massage's release of additional quantities of arachidonic acid >might< give me shadows. I figured a full-blown CH was unlikely, as the past few times I've burned down on the Vimovo (generally after 4-5 days), I've gotten faint shadows which served to warn me my prostaglandin levels were increasing well before a CH hit, and I always resumed the Vimovo. Well folks, I got a couple of those faint shadows just as I was starting to put my clothes on after the massage. They were faint. They >probably< wouldn't have turned into an actual CH, but hey, I just wasn't willing to find out, especially since my girlfriend and I were already scheduled to go to a Vietnamese restaurant for dinner that almost certainly puts MSG in their food, something that in my pre-D3/Vimovo days, would have almost certainly driven a CH ice-pick into my skull. So I chickened out and dropped 1x500/20mg Vimovo with my usual, daily 10,000iu D3 tablet just before we left the resort for the restaurant. The result? The (admittedly faint) shadows had completely evaporated within 15-20 mins (about the time it takes for the Vimovo+D3 to start dissolving together) and I was already starting to feel better before we even got to the restaurant. As I write this now, I'm feeling better than I have in several days.

My feeling is that I will take the Vimovo with my D3 on selective basis at this point. I will try to put as many days between doses as I comfortably can, but will take 1 with my D3 if I feel any soreness in my hand, or stiffness in my back, and most especially, if I get any faint shadows, which are a dead-giveaway that prostaglandin levels are getting close to CH territory.

This is an unvarnished account of my experience. I'm not making anything up or embellishing to prove anything. I'm providing information so that anybody else who might benefit from my experience will have pain-relief.

Best wishes.

Anubis wrote,Over the last 3 days or so, I've noticed signs of increasing inflammation. My joints in my hand started to ache a bit more, and my back has been more sore than over the previous 3 months when I woke in the morning. Still, I decided to soldier on with just the D3 and no Vimovo for the sake of science.

Maybe check in with a Headache Specialist, just to be sure they are CH's your suffering from.

Hoppy

Hoppy wrote on Feb 14^th, 2016 at 9:43pm:

Anubis wrote,Over the last 3 days or so, I've noticed signs of increasing inflammation. My joints in my hand started to ache a bit more, and my back has been more sore than over the previous 3 months when I woke in the morning. Still, I decided to soldier on with just the D3 and no Vimovo for the sake of science. Maybe check in with a Headache Specialist, just to be sure they are CH's your suffering from. Hoppy

LOL. That's a good one.

I've had a CH specialist for over 8 years. My neurologist confirmed my CHs back in 2007. He said I was 'a classic case of CH', as he happened to be able to actually observe my symptoms during an actually attack on the 2nd visit to him, and he is likely the leading specialist on this condition in Ottawa, Canada.

Here is a link to his contact info: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I get the drooping eyelid, the nasal drip in the same side nostril as the pain, the usually clockwork like pain just behind one of my eyes (always the same eye) on a 12 or 24 hour cycle (unless I push them around with an NSAID+D3), the pain lasts predictably from 20 minutes to 1 hour, without the current regimen I'm taking, alcohol is an almost certain trigger, even in very small quantities, etc. etc. etc.

I was episodic when I first got diagnosed, and my cycles tended to last between 3-4 weeks at a time, often (though not exclusively) in the fall or spring. Until about 2013, my cycles tended to have about 4-6 months between them. By 2013, the time between cycles began to shorten, until I was chronic in August of 2014. After August of 2014, I got at least 1, and often 2 or more CHs every single day (with only rare 1 day exceptions), until I broke the chronic cycle temporarily with D3+Ibuprofen for 5 days in mid-October, 2015. It was then that I decided to find a more sustainable NSAID to take with the D3, which turned out to be Vimovo, and got the prescription filled on Oct. 15th. The headaches slowed and finally stopped entirely on Nov. 2nd, 2015, and I have not had a single CH since that date.

I DEFINITELY have CH. Believe it.

Anubis wrote, I get the drooping eyelid, the nasal drip in the same side nostril as the pain, the usually clockwork like pain just behind one of my eyes (always the same eye) on a 12 or 24 hour cycle (unless I push them around with an NSAID by itself, with no D3), the pain lasts predictably from 20 minutes to 1 hour, without the current regimen I'm taking, alcohol is an almost certain trigger, even in very small quantities, etc. etc. etc.

I'm sorry to have to say, but they don't sound like CH's to me, that's why it's always best to check in with a Headache Specialist for a proper diagnosis! Because the majority of neuros aren't up to speed when it comes to diagnosing CH's 

Hoppy

wrote on Feb 12^th, 2016 at 4:07pm:

Nope ten years pf.  I Bust em with something far safer than naproxen.                      Potter

Well, you wouldn't have to 'bust them' if you didn't get them in the first place, like I no longer do, so I'm assuming you still get them. You have my sympathy.

Hoppy wrote on Feb 14^th, 2016 at 11:54pm:

Anubis wrote, I get the drooping eyelid, the nasal drip in the same side nostril as the pain, the usually clockwork like pain just behind one of my eyes (always the same eye) on a 12 or 24 hour cycle (unless I push them around with an NSAID by itself, with no D3), the pain lasts predictably from 20 minutes to 1 hour, without the current regimen I'm taking, alcohol is an almost certain trigger, even in very small quantities, etc. etc. etc. I'm sorry to have to say, but they don't sound like CH's to me, that's why it's always best to check in with a Headache Specialist for a proper diagnosis! Because the majority of neuros aren't up to speed when it comes to diagnosing CH's  Hoppy

Oh my goodness. Nice try. Now I suspect you're just trying to make a nuisance of yourself. You must really have a bee in your bonnet that I found an effective way to stop CHs once and for all. It must gall the crap out of you that it boils down to something as simple as high dose vitamin D3 plus a safe version of naproxen, in the form of Vimovo.

My specialist is the leading expert on CHs in Ottawa. He is a renowned, recognized expert, specifically on CHs.

From the wikipedia entry on CH:

"The typical symptoms of cluster headache include grouped occurrence and recurrence (cluster) of headache attack, severe unilateral orbital, supraorbital and/or temporal pain. If left untreated, attack frequency may range from one attack every two days to eight attacks per day.[2][3] Cluster headache attack is accompanied by at least one of the following autonomic symptoms: drooping eyelid, pupil constriction, redness of the conjunctiva, tearing, runny nose, and less commonly, facial blushing, swelling, or sweating, typically appearing on the same side of the head as the pain.[2]"

I get all of these. The severity of the pain is also exactly as described by other sufferers, re: excruciating to 'man, maybe suicide isn't such a bad idea after all.'

What, pray-tell, about my symptoms doesn't sound like CHs to you, Dr. Hoppy?

Anubis wrote, I get the drooping eyelid, the nasal drip in the same side nostril as the pain, the usually clockwork like pain just behind one of my eyes (always the same eye) on a 12 or 24 hour cycle (unless I push them around with an NSAID by itself, with no D3), the pain lasts predictably from 20 minutes to 1 hour.

What, praytell, about my symptoms doesn't sound like CHs to you, Dr.?


Pain killers will not do shit when it comes to treating CH's. So, I would get a proper diagnosis from a Headache Specialist.

Hoppy

Wow! I get the identical symptoms to Anubis, have done for almost 40 years, and only now must I question the diagnosis of doctors, neurologists and headache specialists across the country.

The simple fact that painkillers have helped me from time to time proves all experts have wasted decades in medical training.

What do you reckon, Anubis, we book in for Preg Tests because patently we don't have CH.

Over the counter painkillers and CH's have been talked about many times over the years on here and when it comes to CH'S they don't and will never abort a CH. Shadows yes, in some folk, but not a CH.

Hoppy

Hoppy wrote on Feb 15^th, 2016 at 1:03am:

Over the counter painkillers and CH's have been talked about many times over the years on here and when it comes to CH'S they don't and will never alleviate a CH. Shadows yes, but not a CH. Hoppy

And did anybody try combing the D3 with an NSAID in that whole time on a consistent basis? I don't see ONE mention of this approach on this site. If there is one, please by all means point me to it.

Have you been reading what I've said? Do you understand that I myself would laugh at anybody who suggested Ibuprofen or Naproxen on their own, and as an abortive? Do you get this? Do you also get that there are academic papers written about the shockingly surprising effectiveness of calcitrol (D3) in high doses when combined with an NSAID like Ibuprofen or Naproxen for certain, inflammation-fed cancers, such as some forms of prostate and breast cancer? Who'd have thought that? Certainly not ME, before I tried it myself. Have you even tried D3+either the Ibuprofen I've suggested just as a test, or the Vimovo yourself? If not, how the HELL do you know if it works or not?

It's very, VERY important that you understand that the whole approach I'm taking is as a preventative, not an abortive. I'm not waiting until I start to get a CH to take Vimovo/D3. I started with the D3, as per Batch's regimen. I was taking vast amounts of D3 taking it every day, and it somewhat weakened, but didn't seem to halt my CHs.

Finally, just because I had read about the synergy between calcitrol (D3) and NSAIDs when COMBINED, I decided to give it a whirl. What did I have to loose? I had a whole bottle of Ibuprofen, and if it didn't work, no big deal. I MYSELF was skeptical. So I started taking the Ibuprofen (2x400mg) at lunch time only, with my D3. That started pushing my CHs around, but it didn't stop them altogether. So I started taking the Ibuprofen 2x400mg in the morning, 2x400mg at lunch with the D3, and 2x400mg in the evening. And guess what. The CHs stopped. So long as I took 3 doses of 2x400mg per day, along with the 10,000iu of D3, they stopped. So I decided to research more. Since Ibuprofen only lasts 4-6 hours per dose, I needed an NSAID that was more long-lasting. I noticed Naproxen, and balked at the potential side-effects, but then I came across Vimovo. Effective for 12-24 hours, as it is a slow-release formula. Doesn't tend to make your stomach bleed because of the Esomeprazole Magnesium. Hmmm, I'll give that a try.

At first, with the round the clock Ibuprofen stopped, my CHs returned, albeit in much less frequent and weaker form than before the Ibuprofen, then after 18 days of fewer and fewer, weaker and weaker CHs, they tapered down to zero by Nov. 2nd. What more do you want from me? It worked. I can't help it if it worked. Do you want me to lie, and say it DIDN'T work?

Jesus. Get over it. It worked for me, and continues to do so. And yes, I REALLY AM a chronic CH-sufferer. I admit I stumbled across a seemingly unlikely treatment, but a completely effective treatment it has been for me since Nov. 2nd. Am I saying EVERYBODY with CH can take this? No. Some people with stomach ulcers or a history of stomach bleeds may not be able to take the D3+Vimovo. That is a call your doctor has to make. When I told mine about the surprising results I saw just taking the D3 with the Ibuprofen, mine said 'Hmm. Interesting. There is some research to suggest a powerful anti-inflammatory synergy when D3+an NSAID are combined in the literature. No problem! Go for it! See if it works, 'cause I all have left for you in the chronic toolkit is more prednisone, or botox injections in your neck, or an occipital block,' none of which I relished. When I mentioned the possible concerns about the Naproxen in the Vimovo, he himself called the risks triffling as compared to the potential side-effects of Verapamil at near max doses and prednisone. I didn't make that call, my DOCTOR did. I'm just echoing his sentiment, because for me, somebody with no heart-disease, and no ulcers or history of stomach bleeds, it was more than an acceptably low-risk.

I tried it, and it really worked. Not a single CH in over 3 months, AND I get a very, very faint shadow as a warning if I stay off the Vimovo for a certain number of days, to let me know that I'd better take one with my next D3. I can drink alcohol, I can eat dark chocolate, I can eat MSG, all without so much as a faint shadow. Beat that.

Hi Guys,
            My belief was, that the likes of nuerofen, which my first to nuerologists told me to take, work to slow to halt an attack, much the same as an imigran pill, great if you can take it 30 minutes before an attack hits, but pretty hard to judge.  My understanding is that that's why pain killers don't work, but the principle of ibroprofin ( excuse spelling )  is that it is an anti inflammatory, and can indeed reduce inflammation, which is whats happening to us, much the same as prednisone, a steroid anti inflammatory, but takes to long to work. I think that Anubis was using an anti inflammatory as a preventative to build up in his system, much the same as the Vit D's anti inflammatory benefits,  I don't think he was popping stuff when an attack was in progress ! purely as an addition to help the Vit D along.  We all know that if you leave an attack going for 10 minutes before you try an abortive, its effect is lessoned quite substantially.  I hear where your coming from Hoppy, I just think you may have miss understood Anubis's approach to everything.  I was told by the first neurologist to take the verapamil, when an attack happens, take nuerofen, I stopped doing that after 5-6 had no effect on the attack, But may have helped reduce inflammation afterwards. I got scared how many I was taking and fortunately my new neurologist told me about imigran.
The big question here, is that there are a heap of us on the regime that don't go completely pain free ! Is Anubis correct in his endeavours about some of us needing something extra to help the Vit D3 regime get us to that pain free state, then the D3 can control it on its own, without the need for another drug ?  Is that the missing link ? some of us need something extra in the beginning ? !
I think we should see this play out and give some credit here for Anubis putting it out there about his experience.
  With this damn affliction  Who Knows !!!
I'm a  Batch regime man for life !  so is my wife now, but I also want to be completely pain free too.........
cheers guys
colin
   

Sorry, Anubis posted while I was typing !!

colin

Thank you, Colin.

Yes, you've essentially got it right. However, my latest burn-down test of Vimovo (10 days this time), has demonstrated that, at least at the D3 dosage I'm currently taking (~10,000iu/day), the Vimovo would be required, at least 1x500/20mg every few days. I didn't get a CH, but the faint hint of a shadow after a deep-tissue massage, in combination with some other indications of increasing prostagladin levels in my system, made me chicken out and take 1 with my D3 today. Sorry, I just can't stomach the idea of deliberately giving myself a CH!

I'm not yet exactly certain how many days one can go off the Vimovo, on an ongoing basis, but it's possible it could work with as little as 1x500/20mg Vimovo, once a week. Considering the maximum dose in the prescription is 2x500/20mg DAILY, that's WELL below the maximum dosage. I will continue to test how little Vimovo I can combine with D3 and still be completely CH-free.

Best wishes.

Anubis wrote, Do you get this.

Well, I'm doing my best to do so, but you keep contradicting yourself.

You wrote,(unless I push them around with an NSAID by itself, with no D3), the pain lasts predictably from 20 minutes to 1 hour.

I'm trying to work out what part of this, you wrote, I don't get. Is it this bit.

unless I push them around with an NSAID by itself, the pain lasts predictably from 20 minutes to 1 hour.

Hoppy

Hoppy wrote on Feb 15^th, 2016 at 2:06am:

Anubis wrote, Do you get this. Well, I'm doing my best to do so, but you keep contradicting yourself. You wrote,(unless I push them around with an NSAID by itself, with no D3), the pain lasts predictably from 20 minutes to 1 hour. I'm trying to work out what part of this, you wrote, I don't get. Is it this bit. unless I push them around with an NSAID by itself, the pain lasts predictably from 20 minutes to 1 hour. Hoppy

Hoppy,

Sorry, I meant to say 'push them around with too low a dose NSAID+D3'. My bad. No contradiction. I mean that only 1 dose of Ibuprofen (2x400mg) taken at lunch with my D3 only pushed around the CHs, meaning the timing of them. I aborted the ones I did get with Zomig 5ml nasal sprays. I don't know how long they would have lasted because I aborted them. But even changing the timing of the CHs was a hint to me that I was onto something. I've never been able to push around their timing with any other treatment at will. It was because they moved around with only 1 dose of Ibuprofen that I decided to take 3 doses (the maximum 2 every 4-6 hours), plus the D3, and that stopped them completely.

OK, now for one more  :question, are you taking the whole vitamin D regimen, that's all the cofactors Batch recommends.

Hoppy

Hoppy wrote on Feb 15^th, 2016 at 2:34am:

OK, now for one more  :question, are you taking the whole vitamin D regimen, that's all the cofactors Batch recommends. Hoppy

I was, from September 26th of 2015. I took everything in his regimen for about 3 weeks, with no success. When it didn't work, I slowly pared down the extraneous aspects of his regimen to leave just the D3 and the fish oil, and eventually dropped taking the fish oil on a daily basis by late October, when I had started the D3+Vimovo+melatonin, which seemed to reduce my CHs until they finally stopped on Nov. 2nd for good.

I started on the regimen midway through my 2012 Spring cycle, didn't work for me either, but stayed on it for the rest of my cycle and still taking it everyday, I haven't seen or heard from the  [smiley=evil.gif] since.

Cheers  [smiley=beer.gif] Hoppy

Anubis, Maybe, its a good time to try adding the rest of the regime ?   I say that, because I know that the magnesium, the fishoil and the calcium in the multi, all play a huge part in regards to absorbtion. The talk being that magnesium, calcium and fish oil all play a huge part in the Vit D3.
I mean, magnesium is a definite anti inflammatory along with fish oil and the talk in the town is that they all play a huge part collectively. Plus, this "may" help with your reduction in vimovo and would play a part in inflammation reduction.
I know you mentioned that you listened to batch with regard to K2 men. m7, as D3 draws calcium into the gut, and because we are taking large doses of d3 the natural K2 which lives in out gut cant cope, as it re directs the calcium to where its suppose to go, not to our vains and bad areas that can cause issues.
I hear you loud and clear about Vimovo helping to switch off things along with the D3,  but I would reconsider the rest of the regime now that your reducing the Vimovo level ?    It makes sense to me to take as many anti inflamatories as possible, especially ones that only have a positive reaction to our bodies and provide a huge range of other benefits,  it could help reduce the levels of vimovo even further that you need to take, which would be a positive ?????   thoughts ?
colin

Oh HAY-SOOS, Daisy and Donald  ...Anubis.....your one trick pony rants are becoming tiresome...what works for you works for you...GREAT....there is not a single  clusterhead who begrudges YOUR success. Some of us happen to think its a dangerous option for others...are we allowed an opinion?

Insulting Hoppy is silly/stupid.... as he is one of the most supportive on this site...and he only asked for clarification of YOUR  muddled ramble...can you report your findings without insult?...can you answer questions?...I'm still waiting...tho I completely understand that avoiding answers IS an answer in and of itself........

Jon

jon019 wrote on Feb 15^th, 2016 at 3:26am:

Oh HAY-SOOS, Daisy and Donald  ...Anubis.....your one trick pony rants are becoming tiresome...what works for you works for you...GREAT....there is not a single  clusterhead who begrudges YOUR success. Some of us happen to think its a dangerous option for others...are we allowed an opinion? Insulting Hoppy is silly/stupid.... as he is one of the most supportive on this site...and he only asked for clarification of YOUR  muddled ramble...can you report your findings without insult?...can you answer questions?...I'm still waiting...tho I completely understand that avoiding answers IS an answer in and of itself........ Jon

And how many 'tricks' would you like my 'rants' to have?

You don't have to read them. I'm presenting information. If you don't like it, don't read it. Frankly, I'm getting a little sick of hearing people say that what I'm presenting is a 'dangerous' option. I've already provided evidence that even straight Naproxen is safer than Ibuprofen or aspirin in terms of the number of death attributed to it in the 10 years leading up to 2014. And I'm not even suggesting straight Naproxen, I'm suggesting something SAFER than that. If you really think it's unacceptably dangerous, that's your problem, not mine. Don't take any, and keep getting CHs. That's your prerogative.

I only responded to Hoppy's sniping, because it was insulting. Telling me that 'over the counter pain killers don't work', after I've written detailed explanation of why my variation on the D3 regimen is NOT just 'over the counter pain killers' by themselves was insulting. I went to a huge amount of trouble to explain why my routine is NOT just Ibuprofen or Vimovo by themselves. Furthermore, Vimovo is not an 'over the counter' medication, which only further demonstrated that Hoppy had not read what I had written. Then he went on to question whether I even suffer from CHs, yet another insult, after I had detailed exactly how I was diagnosed by a CH expert here in Ottawa. If people don't insult me first, i don't insult them back.

There is nothing 'muddled' in my responses. They are detailed, yes, so others can benefit as much as possible. I've already reported my findings without insult. The D3+vimovo works like a magic wand. I don't know exactly what else you're waiting for. Frankly, I'm getting to the point where I might just stop responding to this thread altogether. I've provided virtually all the information anybody who would want to try my variation would need to know, so really, there's not much more I can contribute, and I'm not going to sit here and respond to ridiculous accusations and criticisms for no reason. The only reason I'm STILL here is because I remember how life-affecting my CHs were, and I wanted to help as many people as possible get what I believe is a permanent respite from CHs.

wrote on Feb 15^th, 2016 at 3:16am:

Anubis, Maybe, its a good time to try adding the rest of the regime ?   I say that, because I know that the magnesium, the fishoil and the calcium in the multi, all play a huge part in regards to absorbtion. The talk being that magnesium, calcium and fish oil all play a huge part in the Vit D3. I mean, magnesium is a definite anti inflammatory along with fish oil and the talk in the town is that they all play a huge part collectively. Plus, this "may" help with your reduction in vimovo and would play a part in inflammation reduction. I know you mentioned that you listened to batch with regard to K2 men. m7, as D3 draws calcium into the gut, and because we are taking large doses of d3 the natural K2 which lives in out gut cant cope, as it re directs the calcium to where its suppose to go, not to our vains and bad areas that can cause issues. I hear you loud and clear about Vimovo helping to switch off things along with the D3,  but I would reconsider the rest of the regime now that your reducing the Vimovo level ?    It makes sense to me to take as many anti inflamatories as possible, especially ones that only have a positive reaction to our bodies and provide a huge range of other benefits,  it could help reduce the levels of vimovo even further that you need to take, which would be a positive ?????   thoughts ? colin

Colin,

Thanks for the suggestions. Hmmm. As I mentioned, I did try the whole Batch D3 regimen, religiously, for over a month, without a cessation in my CHs. Yes, it's possible resuming it now, when I'm CH-free, might prolong the periods between taking a maintenance Vimovo. However, it's already at the point where I'm able to take 1 Vimovo every few days without any hint of shadows or CHs, so I don't really feel the need to load myself up with vitamin supplements for this reason.

I'm a little concerned about taking calcium supplements, as Batch himself suggested I avoid them, as I also get some arthritis pain in my right hand from time to time (especially when I've burned down the Vimovo). As for the magnesium, there is some Esomeprazole magnesium in the Vimovo, albeit only 20mg per tablet, so I might take another magnesium supplement. As for the fish oil, I still take some from time to time, just not every single day without fail, so I'm pretty sure I'm getting enough. One thing I have started to experiment with is substituting 3x100mg 5-HTP every day instead of a 10mg melatonin before bed each night. I may alternate between the 5-HTP and the melatonin, depending on how my sleep goes, but so far, the 5-HTP does help me get to sleep, but it also makes it easier to wake up in the morning, too. Since 5-HTP is a serotonin precursor, my serotonin levels are probably higher now, too. :)

You are right that the objective is to keep inflammation levels down, but that's exactly what the D3+Vimovo does extremely well. It's so effective at this point, I really don't see the need to supplement it any further.

anubis44 wrote on Feb 15^th, 2016 at 2:24pm:

jon019 wrote on Feb 15th, 2016 at 3:26am: Oh HAY-SOOS, Daisy and Donald  ...Anubis.....your one trick pony rants are becoming tiresome...what works for you works for you...GREAT....there is not a single  clusterhead who begrudges YOUR success. Some of us happen to think its a dangerous option for others...are we allowed an opinion? Insulting Hoppy is silly/stupid.... as he is one of the most supportive on this site...and he only asked for clarification of YOUR  muddled ramble...can you report your findings without insult?...can you answer questions?...I'm still waiting...tho I completely understand that avoiding answers IS an answer in and of itself........ Jon You don't have to read them. I'm presenting information. If you don't like it, don't read it. Frankly, I'm getting a little sick of hearing people say that what I'm presenting is a 'dangerous' option. I've already provided evidence that even straight Naproxen is safer than Ibuprofen or aspirin in terms of the number of death attributed to it in the 10 years leading up to 2014. And I'm not even suggesting straight Naproxen, I'm suggesting something SAFER than that. If you really think it's unacceptably dangerous, that's your problem, not mine. Don't take any, and keep getting CHs. That's your prerogative. I only responded to Hoppy's sniping, because it was insulting. Telling me that 'over the counter pain killers don't work', after I've written detailed explanation of why my variation on the D3 regimen is NOT just 'over the counter pain killers' by themselves was insulting. I went to a huge amount of trouble to explain why my routine is NOT just Ibuprofen or Vimovo by themselves. Furthermore, Vimovo is not an 'over the counter' medication, which only further demonstrated that Hoppy had not read what I had written. Then he went on to question whether I even suffer from CHs, yet another insult, after I had detailed exactly how I was diagnosed by a CH expert here in Ottawa. If people don't insult me first, i don't insult them back. There is nothing 'muddled' in my responses. They are detailed, yes, so others can benefit as much as possible. I've already reported my findings without insult. The D3+vimovo works like a magic wand. I don't know exactly what else you're waiting for. Frankly, I'm getting to the point where I might just stop responding to this thread altogether. I've provided virtually all the information anybody who would want to try my variation would need to know, so really, there's not much more I can contribute, and I'm not going to sit here and respond to ridiculous accusations and criticisms for no reason. The only reason I'm STILL here is because I remember how life-affecting my CHs were, and I wanted to help as many people as possible get what I believe is a permanent respite from CHs.

       

I suggest you read what you have written and then edit it before posting it, then it wouldn't be  :question or as you put it "insulting you".

Hoppy

Hoppy wrote on Feb 15^th, 2016 at 4:21pm:

I suggest you read what you have written and then edit it before posting it, then it wouldn't be  :question or as you put it "insulting you". Hoppy

So because something I wrote wasn't clear to you, I >deserve< scorn and derision? It's all MY fault, eh?

I suggest you assume the best about people, instead of the worst and rushing to insult them. If something isn't clear, instead of discounting what I'm saying out of hand, you can politely ask me to clarify instead of making bold statements of criticism such as 'over the counter pain killers don't work!' and 'You DON'T sound like you get CHs to me!'. Manners will get you everywhere.

Blacklab and Aussiebrian also asked me challenging, clarifying questions without being accusatory or insulting, and I answered them in kind. You might want to try the same.

If you don't like being  :question on your snake oil remedy then tough titty's.

Hoppy

wrote on Feb 15^th, 2016 at 3:21pm:

anubis44 wrote on Feb 15th, 2016 at 2:24pm: jon019 wrote on Feb 15th, 2016 at 3:26am: Oh HAY-SOOS, Daisy and Donald  ...Anubis.....your one trick pony rants are becoming tiresome...what works for you works for you...GREAT....there is not a single  clusterhead who begrudges YOUR success. Some of us happen to think its a dangerous option for others...are we allowed an opinion? Insulting Hoppy is silly/stupid.... as he is one of the most supportive on this site...and he only asked for clarification of YOUR  muddled ramble...can you report your findings without insult?...can you answer questions?...I'm still waiting...tho I completely understand that avoiding answers IS an answer in and of itself........ Jon You don't have to read them. I'm presenting information. If you don't like it, don't read it. Frankly, I'm getting a little sick of hearing people say that what I'm presenting is a 'dangerous' option. I've already provided evidence that even straight Naproxen is safer than Ibuprofen or aspirin in terms of the number of death attributed to it in the 10 years leading up to 2014. And I'm not even suggesting straight Naproxen, I'm suggesting something SAFER than that. If you really think it's unacceptably dangerous, that's your problem, not mine. Don't take any, and keep getting CHs. That's your prerogative. I only responded to Hoppy's sniping, because it was insulting. Telling me that 'over the counter pain killers don't work', after I've written detailed explanation of why my variation on the D3 regimen is NOT just 'over the counter pain killers' by themselves was insulting. I went to a huge amount of trouble to explain why my routine is NOT just Ibuprofen or Vimovo by themselves. Furthermore, Vimovo is not an 'over the counter' medication, which only further demonstrated that Hoppy had not read what I had written. Then he went on to question whether I even suffer from CHs, yet another insult, after I had detailed exactly how I was diagnosed by a CH expert here in Ottawa. If people don't insult me first, i don't insult them back. There is nothing 'muddled' in my responses. They are detailed, yes, so others can benefit as much as possible. I've already reported my findings without insult. The D3+vimovo works like a magic wand. I don't know exactly what else you're waiting for. Frankly, I'm getting to the point where I might just stop responding to this thread altogether. I've provided virtually all the information anybody who would want to try my variation would need to know, so really, there's not much more I can contribute, and I'm not going to sit here and respond to ridiculous accusations and criticisms for no reason. The only reason I'm STILL here is because I remember how life-affecting my CHs were, and I wanted to help as many people as possible get what I believe is a permanent respite from CHs.

And what, pray-tell, was the point of re-posting what I said without a comment, just to highlight the fact that I'm getting annoyed with a couple of trouble-makers who are attacking me and my credibility?

When I first came to this site, I thought it was a forum for cluster headache sufferers to share their treatment experiences with other sufferers so we could all support each other. What I'm experiencing is a bastion of cult of personality, rabid defense of treatment 'fifedoms', and closed-mindedness. The pettiness on here is breath-taking. I've never seen people so in love with their own treatment routines that they'll completely reject a new, safe one, completely out of hand. Frankly, I'm quite disgusted, but of course, that's exactly what a few people sniping from the sidelines want me to feel, so I've decided I refuse to do that. I only posted my results because my routine is safe (my GP and my neurologist have both condoned the Vimovo as perfectly safe for me), and has been completely, 100% effective. If anybody who is still suffering wants to try it, for the sake of pity, let them ask their OWN doctor about D3+Vimovo, instead of YOU telling them not to take it.

If you have a question about it, please ask. If all you're here to do is rant "It's not safe! It's not safe! It's not safe!", when there are people taking things like Verapamil and Prednisone, and I KNOW it to be safe for most people beyond any doubt, you're not welcome here. Please provide evidence of what you're saying or bugger off.

Hoppy wrote on Feb 15^th, 2016 at 6:12pm:

If you don't like being  :question on your snake oil remedy then tough titty's. Hoppy

How mature. I guess my GP and neurologist, and years of research proving Naproxen is safer than Ibuprofen or Aspirin are ALL WRONG, and YOU are right. Thank you for your input, Dr. Hoppy.

I don't mind being questioned, I just resent being mindlessly attacked. Just because you're in love with your oxygen tank, it doesn't mean everybody else has to be.

anubis44 wrote on Feb 15^th, 2016 at 6:24pm:

wrote on Feb 15th, 2016 at 3:21pm: anubis44 wrote on Feb 15th, 2016 at 2:24pm: jon019 wrote on Feb 15th, 2016 at 3:26am: Oh HAY-SOOS, Daisy and Donald  ...Anubis.....your one trick pony rants are becoming tiresome...what works for you works for you...GREAT....there is not a single  clusterhead who begrudges YOUR success. Some of us happen to think its a dangerous option for others...are we allowed an opinion? Insulting Hoppy is silly/stupid.... as he is one of the most supportive on this site...and he only asked for clarification of YOUR  muddled ramble...can you report your findings without insult?...can you answer questions?...I'm still waiting...tho I completely understand that avoiding answers IS an answer in and of itself........ Jon You don't have to read them. I'm presenting information. If you don't like it, don't read it. Frankly, I'm getting a little sick of hearing people say that what I'm presenting is a 'dangerous' option. I've already provided evidence that even straight Naproxen is safer than Ibuprofen or aspirin in terms of the number of death attributed to it in the 10 years leading up to 2014. And I'm not even suggesting straight Naproxen, I'm suggesting something SAFER than that. If you really think it's unacceptably dangerous, that's your problem, not mine. Don't take any, and keep getting CHs. That's your prerogative. I only responded to Hoppy's sniping, because it was insulting. Telling me that 'over the counter pain killers don't work', after I've written detailed explanation of why my variation on the D3 regimen is NOT just 'over the counter pain killers' by themselves was insulting. I went to a huge amount of trouble to explain why my routine is NOT just Ibuprofen or Vimovo by themselves. Furthermore, Vimovo is not an 'over the counter' medication, which only further demonstrated that Hoppy had not read what I had written. Then he went on to question whether I even suffer from CHs, yet another insult, after I had detailed exactly how I was diagnosed by a CH expert here in Ottawa. If people don't insult me first, i don't insult them back. There is nothing 'muddled' in my responses. They are detailed, yes, so others can benefit as much as possible. I've already reported my findings without insult. The D3+vimovo works like a magic wand. I don't know exactly what else you're waiting for. Frankly, I'm getting to the point where I might just stop responding to this thread altogether. I've provided virtually all the information anybody who would want to try my variation would need to know, so really, there's not much more I can contribute, and I'm not going to sit here and respond to ridiculous accusations and criticisms for no reason. The only reason I'm STILL here is because I remember how life-affecting my CHs were, and I wanted to help as many people as possible get what I believe is a permanent respite from CHs.         And what, pray-tell, was the point of re-posting what I said without a comment, just to highlight the fact that I'm getting annoyed with a couple of trouble-makers who are attacking me and my credibility? When I first came to this site, I thought it was a forum for cluster headache sufferers to share their treatment experiences with other sufferers so we could all support each other. What I'm experiencing is a bastion of cult of personality, rabid defense of treatment 'fifedoms', and closed-mindedness. The pettiness on here is breath-taking. I've never seen people so in love with their own treatment routines that they'll completely reject a new, safe one, completely out of hand. Frankly, I'm quite disgusted, but of course, that's exactly what a few people sniping from the sidelines want me to feel, so I've decided I refuse to do that. I only posted my results because my routine is safe (my GP and my neurologist have both condoned the Vimovo as perfectly safe for me), and has been completely, 100% effective. If anybody who is still suffering wants to try it, for the sake of pity, let them ask their OWN doctor about D3+Vimovo, instead of YOU telling them not to take it. If you have a question about it, please ask. If all you're here to do is rant "It's not safe! It's not safe! It's not safe!", when there are people taking things like Verapamil and Prednisone, and I KNOW it to be safe for most people beyond any doubt, you're not welcome here. Please provide evidence of what you're saying or bugger off.

Like all medications that contain NSAIDs, Vimovo may increase the chance of a heart attack or stroke that can lead to death. This chance increases with longer use of NSAID medicines, in people who have heart disease. NSAID-containing medications, such as Vimovo, should never be used before or after a type of heart surgery called coronary artery bypass graft (CABG). As with all medications that contain NSAIDs, Vimovo may increase the chance of stomach and intestinal problems, such as bleeding or an ulcer, which can occur without warning and may cause death. Elderly patients are at greater risk for serious gastrointestinal events.

Want any more?

     Potter

Hey, Anubis, don't feel as though you've been singled out. Newbie-bashing is a bit of a sport around here, especially if your thoughts and ideas are a little new or innovative.

Just yesterday a first-time poster mentioned he was getting some relief using cypress oil and the first post to greet him was "Bwaaaaaaaaaaaa."

Only a fortnight back a brand-newbie replied to the Tryptomine DALT thread to say he was having a bit of success with it as an alternative therapy. He was immediately advised his post was difficult to read without para-breaks and when he bridled a little at the welcome the next post was, "Took [him] eight hundred days to make their first pissy post and prolly gonna wait eight hundred more to reply."

Haven't heard from either of them since and there's been so many more, including those whose 'stupid and dangerous' ideas are now mainstream CH therapies.

An interesting exercise is to click on someone's user-name to bring up their profile, scroll down, and you can click to see their last 40/80 posts. This will give you an idea about how they respond to others and how much they're here to help or otherwise.

Since putting my email address on the bottom of all my posts I've been contacted privately by four ClusterHeads and a Supporter who choose not to post here.

Two of them began posting but were pretty much driven away, two never even made a first post, and one didn't even join though we correspond regularly and she's thankful for my help.

This is an open forum which means everyone has the right to post their opinion or to howl down anyone with whom they disagree.

It's only airheads like myself who believe we're all here to help ClusterHeads and their Supporters deal with a horrible, horrible disease and to perhaps claim some of their life back.

Ah, well. Full steam ahead and damn the torpedoes,

Brian down under.

AussieBrian wrote on Feb 15^th, 2016 at 9:38pm:

Hey, Anubis, don't feel as though you've been singled out. Newbie-bashing is a bit of a sport around here, especially if your thoughts and ideas are a little new or innovative. Just yesterday a first-time poster mentioned he was getting some relief using cypress oil and the first post to greet him was "Bwaaaaaaaaaaaa." Only a fortnight back a brand-newbie replied to the Tryptomine DALT thread to say he was having a bit of success with it as an alternative therapy. He was immediately advised his post was difficult to read without para-breaks and when he bridled a little at the welcome the next post was, "Took [him] eight hundred days to make their first pissy post and prolly gonna wait eight hundred more to reply." Haven't heard from either of them since and there's been so many more, including those whose 'stupid and dangerous' ideas are now mainstream CH therapies. An interesting exercise is to click on someone's user-name to bring up their profile, scroll down, and you can click to see their last 40/80 posts. This will give you an idea about how they respond to others and how much they're here to help or otherwise. Since putting my email address on the bottom of all my posts I've been contacted privately by four ClusterHeads and a Supporter who choose not to post here. Two of them began posting but were pretty much driven away, two never even made a first post, and one didn't even join though we correspond regularly and she's thankful for my help. This is an open forum which means everyone has the right to post their opinion or to howl down anyone with whom they disagree. It's only airheads like myself who believe we're all here to help ClusterHeads and their Supporters deal with a horrible, horrible disease and to perhaps claim some of their life back. Ah, well. Full steam ahead and damn the torpedoes, Brian down under.

You've taken trolling to a whole nother level.  I salute you.
Edit: If you go back far enough you could read my first ridiculous post claiming I had found the magic bullet for taming clusters.  Jonny soon came along and gently set me straight.  Oxygen and more Oxygen.

        Potter   

         


         

wrote on Feb 15^th, 2016 at 7:26pm:

Like all medications that contain NSAIDs, Vimovo may increase the chance of a heart attack or stroke that can lead to death. This chance increases with longer use of NSAID medicines, in people who have heart disease. NSAID-containing medications, such as Vimovo, should never be used before or after a type of heart surgery called coronary artery bypass graft (CABG). As with all medications that contain NSAIDs, Vimovo may increase the chance of stomach and intestinal problems, such as bleeding or an ulcer, which can occur without warning and may cause death. Elderly patients are at greater risk for serious gastrointestinal events. Want any more?      Potter

Oh yeah? I'll see your scare-mongering, cover-my-ass warning label and raise you a wikipedia entry:

"(Naproxen) is the preferred NSAID for long-term use in people with a high risk of cardiovascular (for example, heart attacks or strokes) complications,[3]:665 due to its relatively low risk of causing such complications. Naproxen has an intermediate risk of causing stomach ulcers as compared with ibuprofen, which is low-risk, and indometacin, which is high-risk.[4] In order to reduce the risk of stomach ulceration, it is often combined with a proton-pump inhibitor (a medication that reduces the production of stomach acid) during long-term treatment, in those with pre-existing stomach ulcers, or a history of developing stomach ulcers while on NSAIDs.[2][3]:665,673"

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

That last sentence in the quote is exactly what Vimovo is. This article seems to be implying that you can even take Vimovo if you HAVE a history of stomach ulcers or bleeds, as the protein pump inhibitor reduces the production of stomach acid during the dose.

You don't seem to get it. What you quoted is full of 'May... May... May...'. The manufacturer of Vimovo is COVERING THEIR LEGAL ASS. They are warning the heck out of people, JUST IN CASE somebody dies who shouldn't have been taking it. Drinking too much water can kill you, too. The United States is so litigious, of COURSE they have a scare-mongering warning in the fine print. But the RESEARCH is what I'm reading, NOT the 'cover my ass' legalese, and the research says Naproxen is proven to be the safest NSAID and with a protein pump inhibitor, it's even safer for long-term use.

If you'd stop being so thick-headed and stubborn when faced with real information on Vimovo, you might just be able to put away the damned oxygen tank for good.

  I only push O2 and mooshies I like safe.

            Potter

wrote on Feb 15^th, 2016 at 10:17pm:

I only push O2 and mooshies I like safe.             Potter

Bully for you. Some of us want to be able to go out WITHOUT hauling around an oxygen tank. And better yet, not get any CHs in the first place.

Anubis wrote, I don't mind being questioned, I just resent being mindlessly attacked. Just because you're in love with your oxygen tank, it doesn't mean everybody else has to be.

[smiley=sayno.gif] I don't need to cuddle my oxygen bottle and if you read through my replies properly you wouldn't have to make such a stupid comment, instead, you pick out the bits that suit your ego and call them sniping, where as, I call them how it is.

This thread has been viewed 1695 times with 91 replies! I would like to hear from folk that are trying your remedy and their results?

Hoppy

anubis44 wrote on Feb 15^th, 2016 at 10:20pm:

wrote on Feb 15th, 2016 at 10:17pm:   I only push O2 and mooshies I like safe.             Potter Bully for you. Some of us want to be able to go out WITHOUT hauling around an oxygen tank. And better yet, not get any CHs in the first place.

  In your fervor to post you missed the part where I said I'm ten years pain free.

           Potter

Hoppy wrote on Feb 15^th, 2016 at 10:46pm:

This thread has been viewed 1695 times with 91 replies! I would like to hear from folks that are trying your remedy and their results? Hoppy

  The number is gonna be zero.

            Potter

Yep,  This sounds really familiar  !

I'll give ya all some mail !
What has transpired here is friggen disgusting !
Everyone needs to take a damn good look at themselves !
If everyone wants a forum,  only for there own views to be gospel and anyones comments that differ from there's are to be berated, ridiculed and personally attacked, Well, this forum would then become useless !! as it seems to be heading.
Everyone, as I see it, has a right to express views, experiences and tribulations, with regard to our affliction, I don't think any one person, regardless of length of time or shortness of time contributing here has any special right of passage !!
Its unfortunate that Anubis and hoppy got off to a wrong footing ! I know Hoppy and respect his input and contribution both here and on other places, I also think Anubis is genuine in his approach with using Vimovo and his willingness to document his experience with it, which is with doctors supervision.....
How about we accept people with different views or approaches, all contributions, whether they be ill informed, or taking a new tact, should be at least given a fair crack at it.
So maybe a chill pill is in order,  those opposing have made their views known, which should be respected as well  !
... But enough is enough  !
  geeez
C

   

Thank you AussieBrian & Colin.

AussieBrian wrote on Feb 15^th, 2016 at 9:38pm:

Hey, Anubis, don't feel as though you've been singled out. Newbie-bashing is a bit of a sport around here, especially if your thoughts and ideas are a little new or innovative... ...This is an open forum which means everyone has the right to post their opinion or to howl down anyone with whom they disagree. It's only airheads like myself who believe we're all here to help ClusterHeads and their Supporters deal with a horrible, horrible disease and to perhaps claim some of their life back. Ah, well. Full steam ahead and damn the torpedoes, Brian down under.

Brian,

Thank you very much for your supportive words.

After mulling things over a bit, I've come to some conclusions. First of all, although I don't like to make generalizations about people, I had always known that America is a very litigious country. Just driving down the I-81 to Atlanta to visit some relatives, I noticed that practically every billboard was a lawyer's advertisement to help you sue the crap out of somebody for something. In Canada (where I live), Australia and the U.K., such 'legal cases' would often just be thrown out of court as baseless. Based on some of the responses to D3+Vimovo, I'm starting to realize just how confused, frightened, and frankly, paranoid, some Americans can be. Apparently, it's cultural, so I don't blame anybody personally. Apparently, nobody can trust anybody or anything in that country, and so, even if the overwhelming consensus of medical research has demonstrated that Naproxen is safer than aspirin or Advil, and Vimovo, being a Naproxen+protein pump inhibitor, is even safe enough for people with a history of stomach ulcers to use long-term, that's still not going to be good enough. The mistrust in these people is epic.

So, in the spirit of goodwill, in spite of some hostile and bitter replies, because I want CH'ers to try what has worked for me, (especially chronic CH'ers!) I'm going to recap, since I know some people might only read the latest posts in an active thread.

I'm going to reiterate that I, a chronic CH'er, still haven't had a single CH since I was 18 days on the D3+max dose Vimovo back on Nov. 2nd, 2015. (Yes, for that initial loading dose period, you will still need your usual abortive in the event you still get a CH, until they've stopped altogether). Not ONE SINGLE CH. Not even a little, tiny one. Only the vaguest hint of a shadow whenever I burned down the Vimovo a little too much.

I'm going to reiterate that this is not an abortive treatment. I don't take D3+Vimovo only when I sense an actual CH coming on. This is a preventative treatment. That means that once you have stopped your CHs with daily D3+Vimovo doses, you should not get any more CHs. Since I was chronic at the time I started this regimen, I don't know what the implications are for an episodic sufferer. It may be that you can break a cycle with this regimen, and not need to take the Vimovo again unless/until you sense another cycle coming on. I don't know. My belief is that you may be able to avoid a cycle entirely if you are able to resume the D3+Vimovo regimen at the earliest sensation of a shadow.

I'm going to reiterate that this treatment dropped my inflammation levels (meaning prostaglandin levels) down to the point that I have been able to cut down the Vimovo to a single 500/20mg tablet every few days (while still taking one and sometimes two 10,000iu D3 daily). At this point, I'm basing it on how I feel, as I've become quite attuned to my inflammation levels by now. For example, if I start to get arthritic soreness in my right hand joints, I know my inflammation levels in general are rising, and it's time for another Vimovo. So far, once I got past the 3 week loading dose period, I have been able to take no more than 1 Vimovo/day. I haven't had to take 2 in a day.

I'm going to reiterate that Naproxen, the main ingredient in Vimovo, is listed in wikipedia (wikipedia, for crying out loud!) as "the preferred NSAID for long-term use in people with a high risk of cardiovascular (for example, heart attacks or strokes) complications,[3]:665 due to its relatively low risk of causing such complications," and "In order to reduce the risk of stomach ulceration, it is often combined with a proton-pump inhibitor (a medication that reduces the production of stomach acid) during long-term treatment, in those with pre-existing stomach ulcers, or a history of developing stomach ulcers while on NSAIDs.[2][3]:665,673" I'm going to reiterate that Vimovo is just such a Naproxen/protein pump inhibitor-class of drug.

Best wishes to all, even to you, Hoppy & Potter! :)

wrote on Feb 15^th, 2016 at 10:51pm:

Hoppy wrote on Feb 15th, 2016 at 10:46pm: This thread has been viewed 1695 times with 91 replies! I would like to hear from folks that are trying your remedy and their results? Hoppy   The number is gonna be zero.             Potter

I would have thought that a curmudgeon such as yourself would have preferred several people to try my regimen and have it fail? Or are you that afraid that it really does work that you feel the dire need to ward off any takers? :)

All,

If we can't show each other a bit of respect and hold a reasoned debate (on any proposed treatment), then how in God's name can we expect the rest of the population to take us seriously ??????

P.

Hoppy wrote on Feb 15^th, 2016 at 10:27pm:

Anubis wrote, I don't mind being questioned, I just resent being mindlessly attacked. Just because you're in love with your oxygen tank, it doesn't mean everybody else has to be. [smiley=sayno.gif] I don't need to cuddle my oxygen bottle and if you read through my replies properly you wouldn't have to make such a stupid comment, instead, you pick out the bits that suit your ego and call them sniping, where as, I call them how it is. This thread has been viewed 1695 times with 91 replies! I would like to hear from folk that are trying your remedy and their results? Hoppy

For once, something we both can agree on. I, too, am curious to hear from someone else who is trying this to see what their results are!

wrote on Feb 15^th, 2016 at 10:51pm:

anubis44 wrote on Feb 15th, 2016 at 10:20pm: wrote on Feb 15th, 2016 at 10:17pm:   I only push O2 and mooshies I like safe.             Potter Bully for you. Some of us want to be able to go out WITHOUT hauling around an oxygen tank. And better yet, not get any CHs in the first place.   In your fervor to post you missed the part where I said I'm ten years pain free.            Potter

Ten years pain free? Where did you say that in this thread? Please elaborate. Or are you just able to abort quickly? There's a difference. I'm not even starting to get CHs anymore. That's what pain-free means. No CHs in the first place. The way you talk up Oxygen, it sounded like you're still getting them, and just aborting them. That's not pain-free.

Peter510 wrote on Feb 16^th, 2016 at 6:59am:

All, If we can't show each other a bit of respect and hold a reasoned debate (on any proposed treatment), then how in God's name can we expect the rest of the population to take us seriously ?????? P.

Agreed. I started out with an open heart and mind on this thread, and I'm still willing to be civil.

I just don't want any CH sufferers to be deterred from trying this approach. That's why I can't leave the last message on this thread some kind of balderdash, fear-mongering statement. It frightens me to imagine somebody who would have benefited being discouraged from even trying this treatment just because of Potter or Hoppy. A life ruined due to pettiness? I won't stand for that.

They've made their erroneous claims about Vimovo, and they've been refuted. Next question, please.

wrote on Feb 12^th, 2016 at 4:07pm:

anubis44 wrote on Feb 12th, 2016 at 3:02pm: anubis44 wrote on Feb 12th, 2016 at 3:02pm: wrote on Feb 12th, 2016 at 2:08pm: [quote author=474853444F551212260 link=1454078299/48#48 date=1455291825]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.   Maybe it's the D3 not the naproxen,                    Potter Well, I loaded myself up on D3 for over 2 months with no cessation of my CHs. They got SOMEWHAT weaker, but they didn't stop, and I still got a few level 7s now and again. After reading more about COX-2 and inflammation, I decided to combine the D3 with some Ibuprofen as a test for combined D3+NSAID effectiveness, taken at a max dose 3 times daily, the CHs stopped dead in their tracks. Like immediately. As in that very day that I started the test. I dare you to take a couple of extra strength Advils (as well as your usual D3 dosage--this is critical, or it won't work!) with breakfast, lunch and dinner for 5 days during a CH cycle and see what the results are.  ;) No, I'm convinced now that it's almost certainly both. Read this: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Read especially the quote: "The group saw a 25 percent reduction in prostate cell growth using only calcitriol, and approximately the same reduction using only ibuprofen and naproxen. But when they combined calcitriol 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." (italics mine) Although it's talking about prostate cancer cells, the essential dynamic applies to CH, which is also caused by excess prostagladin production. Neither D3 by itself, even in very high levels, or NSAIDs by themselves work as well as both together. The literature supports a very strong multiplier effect when D3 is taken in conjunction with an NSAID. Naproxen is the overall safest NSAID that supports this synergistic effect when taken over time, and Vimovo is an even safer variation than straight Naproxen by itself. Vimovo is also a slow-release formula, which lasts for 12-24 hours, so you can take just 1 or 2, instead of round the clock doses of Advil, which I don't recommend for more than a few days as a trial to see if this will work for you, too.     Nope ten years pf.  I Bust em with something far safer than naproxen.                      Potter

This thread has been viewed 1695 times with 91 replies! I would like to hear from folks that are trying your remedy and their results?

Hoppy


  The number is gonna be zero.

            Potter

Anubis wrote, I would have thought that a curmudgeon such as yourself would have preferred several people to try my regimen and have it fail? Or are you that afraid that it really does work that you feel the dire need to ward off any takers?

Curmudgeon, ill bread or crossed-grained or niggardly fellow, peasant, low-born person, miser, miserable, contemptible.  [smiley=wow.gif] that's #10 insults he called Potter and I can't recall Potter or I "Insulting" anubis  in this manner once, unless asking a  :question or being called out is "Insulting" to some folk, which seems to be the case with Anubis,  [smiley=wow.gif] It's a good job Potter has a good sense of humour.

Hoppy

Hoppy wrote on Feb 16^th, 2016 at 7:00pm:

This thread has been viewed 1695 times with 91 replies! I would like to hear from folks that are trying your remedy and their results? Hoppy   The number is gonna be zero.             Potter Anubis wrote, I would have thought that a curmudgeon such as yourself would have preferred several people to try my regimen and have it fail? Or are you that afraid that it really does work that you feel the dire need to ward off any takers? Curmudgeon, ill bread or crossed-grained or niggardly fellow, peasant, low-born person, miserable, contemptible,  [smiley=wow.gif] Hoppy

Curmudgeon makes me feel like I'm part of a Dickens novel.

     Potter

Potter wrote, Curmudgeon makes me feel like I'm part of a Dickens novel.

I'm wondering what part/character in his novels you would have been?

Hoppy

Hoppy wrote on Feb 16^th, 2016 at 8:34pm:

Potter wrote, Curmudgeon makes me feel like I'm part of a Dickens novel. I'm wondering what part/character in his novels you would have been? Hoppy

  Krook.

     Potter

Potter wrote Krook,

[smiley=lolk.gif] I remember the rag and bone man coming down our street on his horse and cart when I was a kid! He would give you a Goldfish in a plastic bag in exchange for old rags :)

Hoppy

wrote on Feb 16^th, 2016 at 9:39am:

Nope ten years pf.  I Bust em with something far safer than naproxen.                      Potter

Potter, I had understood your use of the word 'bust' to mean that you abort CHs with something like Oxygen at the earliest sign of one. Is this incorrect? Are you saying you have an effective preventative treatment?

Hoppy wrote on Feb 16^th, 2016 at 7:00pm:

This thread has been viewed 1695 times with 91 replies! I would like to hear from folks that are trying your remedy and their results? Hoppy   The number is gonna be zero.             Potter Anubis wrote, I would have thought that a curmudgeon such as yourself would have preferred several people to try my regimen and have it fail? Or are you that afraid that it really does work that you feel the dire need to ward off any takers? Curmudgeon, ill bread or crossed-grained or niggardly fellow, peasant, low-born person, miser, miserable, contemptible.  [smiley=wow.gif] that's #10 insults he called Potter and I can't recall Potter or I "Insulting" anubis  in this manner once, unless asking a  :question or being called out is "Insulting" to some folk, which seems to be the case with Anubis,  [smiley=wow.gif] It's a good job Potter has a good sense of humour. Hoppy

One definition of 'curmudgeon' is 'bad tempered or surly.' Do either of you deny this? I didn't idly, childishly call you some name, rather, I'm quite accurately characterizing your actual behavior. Find one positive or encouraging statement either one of you have written to me in this thread until now, and I'll gladly retract that epithet. :)

You've both done nothing but snipe since I started this thread, and many others are in agreement. They're interested in my treatment and its effectiveness. If you are, too, then stop being so aggressively critical. You've already made your only point, which is that you're scared to death of Naproxen. Now that I've refuted the contention that it's some sort of poison, it's getting old.

How you and Potter have been treating me has been as insulting as me calling it 'like I see 'em', and labeling that behavior as curmudgeonly. You're not going to escape the judgement of others on a technicality. You've both been incredibly demeaning and unwelcoming. I'm still willing to hold out an olive branch to both of you if you'll just be a bit more reasonable.

wrote on Feb 16^th, 2016 at 7:26pm:

Hoppy wrote on Feb 16th, 2016 at 7:00pm: This thread has been viewed 1695 times with 91 replies! I would like to hear from folks that are trying your remedy and their results? Hoppy   The number is gonna be zero.             Potter Anubis wrote, I would have thought that a curmudgeon such as yourself would have preferred several people to try my regimen and have it fail? Or are you that afraid that it really does work that you feel the dire need to ward off any takers? Curmudgeon, ill bread or crossed-grained or niggardly fellow, peasant, low-born person, miserable, contemptible,  [smiley=wow.gif] Hoppy Curmudgeon makes me feel like I'm part of a Dickens novel.      Potter

I'm glad you feel comfortably well-characterized in such a literary setting such as that.

anubis44 wrote on Feb 17^th, 2016 at 2:41pm:

wrote on Feb 16th, 2016 at 9:39am:     Nope ten years pf.  I Bust em with something far safer than naproxen.                      Potter Potter, I had understood your use of the word 'bust' to mean that you abort CHs with something like Oxygen at the earliest sign of one. Is this incorrect? Are you saying you have an effective preventative treatment?

  What you know about clusters you could put in a thimble.  You obviously don't read my replies.

      Potter

  And I did take a poll on a super dooper secret cluster headache website.

one member berated me for doubting your analytical findings.

one member found some relief from migraines by using naproxen.

  ninety eight think yer full of yourself.

        Potter

Anubis wrote, One definition of 'curmudgeon' is 'bad tempered or surly.' Do either of you deny this? I didn't idly, childishly call you some name, rather, I'm quite accurately characterizing your actual behavior. Find one positive or encouraging statement either one of you have written to me in this thread until now, and I'll gladly retract that epithet.

Not in the Oxford Dictionary!

Potter wrote,
What you know about clusters you could put in a thimble.  You obviously don't read my replies.

Nor mine! Maybe check out page #3 where I suggested you try the vitamin D regimen again and where I suggested it's always best to see a Headache Specialist just to be sure they are CH's your suffering from, as we do with all newbies that come here, but oh no, you found this advice offensive and accused me of making sniping comments and all you could do was retaliate with a very derogatory remark.

Hoppy

wrote on Feb 17^th, 2016 at 3:04pm:

And I did take a poll on a super dooper secret cluster headache website. one member berated me for doubting your analytical findings. Well bugga me ! A super doper secret cluster head website ah why the hell don't you stay over there ! You know what, I took aussie Brians advice and trilled over your past few years of posts,  You have hardly helped, advised or put up your so called vast experience to a newbie to help them in any way, but you sure as hell have made a lot of honest newbies needing help leave the forum ! I don't care how many people you supposedly have helped that everyone keeps reffering to, your attitude your and intolerance and past record shows your a train wreck ! This is all about you wanting recognition for how experienced you are and putting anyone else down that dares contradict suggest or puts forward an idea ! There are many many people on here that do so much good for people that join up here, but for you, its all about proving how big your pecker is ! I cant believe that the moderators allow some of the crap and disgusting un needed posts you put up. What Joy or pleasure do you get out of it ? seriously I've had the pleasure of connecting with a lot of champion people on this forum that have tirelessly helped me and others on their journey with clusters, I have personal contacts with most of them and are regularly in contact with them outside of the forum, for me, that's enough, I don't need to be here listening to your poison or have the desire to get into key board feuds with someone with obviously more serious issues than clusters alone. Chalk up another disgruntled member on your belt potter ! You win,  I will be deleting my membership here. Hopefully soon DJ will realise your poisen ego and start to sensor you input ! I really thought this forum was to help those suffering with cluster headaches, not support those that need their ego's massaged ! Thanks for everyone's help and input while I've been here, it has been literally a life saver. Sorry about the rant, but others need to bounce this clown ! All the best colin one member found some relief from migraines by using naproxen.   ninety eight think yer full of yourself.         Potter

wrote on Feb 17^th, 2016 at 3:04pm:

And I did take a poll on a super dooper secret cluster headache website...

You could start the same poll here where things aren't quite so secret.

I vote Anubis.

Aussie Brian wrote, You could start the same poll here where things aren't quite so secret.


This thread has been viewed 1695 times with 91 replies! I would like to hear from folk that are trying your remedy and their results?

Now viewed 2384 times and still no takers!

Hoppy

Hi all,

below is a PM that I sent Anubis.

Then i thought to myself that this should be public so here goes, you can read what I think about what has happened above.
I am expeting more childish nastyness addressed to me but this is worth doing.

"Hi Annubis,
I am sure I am not the first person to send you a PM.
I am guessing that there are many of us here who cannot believe the way Potter and then Hoppy have treated you.
I find it unbelieveable that nothing has been done towards Potter by moderators, the only reason I can think of for this non-action towards Potter and then Hoppy is that maybe they contribute financially in a big way to this site.
I am so sorry for you that this has happened.
Potter repeatedly acts like a very nasty child and has been the cause for many people's departure from this site, this is so not right and I do not understand how this is allowed to happen.
I can't believe a  grown up person such as Potter can act in such a way towards a human being.
I suggest that you forward this PM and all the other supporting PM you get to DJ.
Again, I feel so sorry to see you go and so sorry that you have had to endure such nastyness from members of  this site.
All the best"

So much for my suggesting that everyone shows a bit of respect for each other. It seems that was a little naive of me.

It's time the Moderators step in and put a stop to this thread. What happened to the principle of " challenge the idea, don't attack the person".

That certainly hasn't happened in this case and I must add,it's not the first time, involving some of the same people.

Colin (Blacklab), if you're still looking in, reconsider. I have always valued your input and I think it a great waste for you to leave this site for the failings of others.

Peter.

I have my own code of conduct and personal limits regarding decorum, but I certainly have no right to dictate the behavior of others on the internet.

THAT is most often the root of many arguments around here.

This is an open forum owned solely by DJ. I am sometimes surprised at the guests who come into his house and try to enforce their own rules on other guests in his house!

Marc

thierry wrote on Feb 18^th, 2016 at 4:33am:

Hi all, below is a PM that I sent Anubis. Then i thought to myself that this should be public so here goes, you can read what I think about what has happened above. I am expeting more childish nastyness addressed to me but this is worth doing. "Hi Annubis, I am sure I am not the first person to send you a PM. I am guessing that there are many of us here who cannot believe the way Potter and then Hoppy have treated you. I find it unbelieveable that nothing has been done towards Potter by moderators, the only reason I can think of for this non-action towards Potter and then Hoppy is that maybe they contribute financially in a big way to this site. I am so sorry for you that this has happened. Potter repeatedly acts like a very nasty child and has been the cause for many people's departure from this site, this is so not right and I do not understand how this is allowed to happen. I can't believe a  grown up person such as Potter can act in such a way towards a human being. I suggest that you forward this PM and all the other supporting PM you get to DJ. Again, I feel so sorry to see you go and so sorry that you have had to endure such nastyness from members of  this site. All the best"

Yep I invested all the money I took out of my microsoft and fb stock and bought into chdotcom a site that costs DJ money to keep up.
  Maybe you should ask him yourself.

               Potter

Naproxen) is the preferred NSAID for long-term use in people with a high risk of cardiovascular (for example, heart attacks or strokes) complications,[3]:665 due to its relatively low risk of causing such complications. Naproxen has an intermediate risk of causing stomach ulcers as compared with ibuprofen, which is low-risk, and indometacin, which is high-risk.[4] In order to reduce the risk of stomach ulceration, it is often combined with a proton-pump inhibitor (a medication that reduces the production of stomach acid) during long-term treatment, in those with pre-existing stomach ulcers, or a history of developing stomach ulcers while on NSAIDs.[2][3]:665,673"

Maybe read what Batch posted yesterday in the general section on proton-pump inhibitor.

Hoppy

Hi Anubis

If you get the impression you are pissing against the wind on here, you would be correct. But the wind bags are few, however bigoted the nay sayers, you were right to put up your solution, it would have mean for you not to. For you to be attacked for doing so is not mean just plain crass.

This site may have helped save my life. I was in a great deal of difficulty and some of the advice was spot on , though some was less than helpful.

I dip in from time to time to see if things have moved on, they haven't. CH is incurable! no one knows what causes it! it is the worst pain known to man! and GP's don't know what they are talking about! neuros aren't much better! but if you find a headache specialist who tell you what you want to hear and it conforms with the views of some of eminences on  here you are in safe hands!

Lets cut some of the crap; CH does not have a single cause and there is no single panacea. NSAIDS can and do help.

My problem was a multi headache syndrome which culminated, at its worst, with CH. I had got up to a 10 and it kept on going.

I now know what causes my HA's, there is a cure but its not one I need to opt for at the moment (transected / cauterised nerves – top of neck 20mm into skull, 20mm to left from centre back).

I now juggle with amitriptyline (former depression drug) used as a nerve block, normally 40mg once per day plus NSAID  (indomethacin 25mg – 150mg per day with gut protector)). And I can control most headaches, Downside Indo gives me a full HA (both sides at back) Amitript not good with booze.

Personal body chemistry and specific impaction of nerve(s) plus other biological factors will determine what works for the individual. The “experts” are still groping in the dark with primary (don't know what causes it) and secondary (THINK they know what causes it). The truth is the current classifications of HA's are holding back the science. There is too much width in some of the diagnoses that means an individuals HA could have 2,3, 4 more causes and diagnoses. Internal blood pressure vs atmospheric pressure seems an obvious antagonist by either a blood vessel  growing through increased pressure and pressing on a nerve or the same blood vessel growing through drop in atmospheric pressure resulting in the same pressure on a nerve.

Your fix works for you and therefore may well work for others therefore don't be put off from getting your fix out their to people who may benefit.  Let the D3ers believe what they want to (D3 is a anti-inflammatory but also helps in the reduction of BP and assists with elasticity of blood vessels – studies show too much can be as harmful as too little – the experts can't yet agree on where too much / little lies). Oxygen also works on modifying the diameter of blood vessels.

There are some on here that hold that CH is a badge of honour, then there are some of us who wish not to have it and encourage others with our stories of success.

Hey Lanc,

Good to hear from you. Hope things are getting better.

Peter.

I find it strange how people come here and insist that some of us are idiots, because "they have the cure for their type of headache."  That reminds of the surgeon who said that he got cluster headaches when he bent over too long during a long surgery, and had to take a nap to end it.

I was chronic for more than 14 years with actual CH's. If a person actually has CH's, they will fully understand when I say that I was exploring the dark and scary places in the deepest recesses of my mind. Because of the collective information on THIS site, I have not had a real CH in more than two years now. Yes, I get some really minor twinges/warnings, but......

THERE IS NO WAY that I can begin to explain what it is like to get my life back after 14 years of agony beyond my wildest imagination. Yes, really - it is that amazing. The MOST important part of my post is: The people who were the hardest on me, were the MOST effective in making me explore the options.

Pissing in the wind? Bigoted naysayers?  If you get your delicate feelings hurt on the internet, grow up, grow a pair and get over it. Been there and done that! I got all "butt chapped" a couple of times and deleted myself - before I grew up a little.

If a person spends the time to research the information available here, they will find a way to better manage their CH's.

I repeat for the folks looking for help: THIS IS THE PLACE.

Read, look, research and listen. If you get your feelings hurt, decide if CH's or your feelings are more important - before you run away crying.

People who care very deeply about the subject tend to be the most assertive and protective of this site. They worry about new people getting sucked into false narratives and suffering longer...............

Then there is the Fluffy Bunny crowd who doesn't want to hurt anyone's feelings, under any circumstances.

Marc

Hi Marc,
I was pleased to read you have been pain free for 2 years and you have your life back, as do I, and that's because I also found this website, and the help I got. "I was lurking for years  [smiley=lolk.gif]". I remember posting on here how  by taking one little pill before going to bed could help get some  [smiley=sleep.gif] and I thought I had started WW111 with the replies that came flying back, but being thick skinned didn't bother me  [smiley=lolk.gif] and I remember in the past we've agreed to disagree about something or another, but that's what makes life interesting, to hear some ones else point of view without getting up on their high horse and accuse you of sniping, after all, we can't all be walking around with a halo on our head  [smiley=lolk.gif].

All the best, Hoppy

Thierry wrote,
"Hi Annubis,
I am sure I am not the first person to send you a PM.
I am guessing that there are many of us here who cannot believe the way Potter and then Hoppy have treated you.
I find it unbelieveable that nothing has been done towards Potter by moderators, the only reason I can think of for this non-action towards Potter and then Hoppy is that maybe they contribute financially in a big way to this site.

[smiley=wow.gif] I can assure you, the moderators and DJ will be following this thread with eagle eyes. So, if I or Potter had been out of order at any time, believe me, we surely would have known about it. Also, I find your remark towards Potter and I that no action is taken by the moderators is because we contribute financially in a big way, highly offensive.

Hoppy

Hoppy wrote on Feb 19^th, 2016 at 12:02am:

...I can assure you, the moderators and DJ will be following this thread with eagle eyes. So, if I or Potter had been out of order at any time, believe me, we surely would have known about it.

G'day, Hoppy, and I'm thrilled you're able to speak outright on behalf of our WebMaster and Moderators.

I can also accept that some newcomers to ch.com might not be perfectly familiar with our Standard of Conduct, but I also suspect it might be a while since some of our older and moldier members have read the same thing.

Little things like,

"Users of this site will be held to a prominent standard of integrity and respect."

"Debate is welcome (and encouraged), but attack ideas and opinions; not personalities."

"Personal attacks or threats against other board members will NOT be tolerated...Calling a member 'troll' or using 'troll' or similar emoticons is considered a personal attack".

All of it has happened in just this one thread while other newbies have fared much worse.

I truly wish them well, where ever they may be now.

Every newcomer to ch.com has sought us out for a reason, most commonly because they suffer this horrible condition we all know so well, and I'll continue to support and defend them against the old guard who know everything, man the fort and stand-by to repel boarders, regardless how much these sufferers might be helped by what we're so happy to tout as the "greatest repository of all CH knowledge".

I don't care why others are here but my name's Brian. I'm a ClusterHead and I'm here to help.

Well said Brian. I was beginning to think that I was the only "fluffy bunny" here.

I too am here to help, in what little way I can, but I'm also still here to learn.

There is no learning value in a debate that has descended into a personal slagging match.

P.

So there you have it, you pays your money and takes your chance.

Mushrooms, NAIDS, Triptomines inc 5MeOD, Vitamins, BP Meds, Epilepsy Meds, Oxygen but be sure its the right mask and flow rate, electrical nerve stimulation, RF Ablation, Meditation, hypnotherapy, manipulation, sleep sat up or on the opposite side to the pain, .38 copper sleeved lead etc etc. All have miraculous effects of stopping the beast in his tracks.

Or Mine and Only Mine is the gold standard cure!

I've mentioned it before and it was not meant to be flippant, CH can make you daft. It really can, I know. That much pain with no sight of relief in site can and does wear you down, and the effects on mental health become just another unwanted side effect. It doesn't mean however that fervent zeal for a particular remedy that works for you means it will work for others. It doesn't mean that that you and only you (with the exception of a chosen few) know what its like to have “The Real” CH. And it doesn't mean you should be uncharitable, rude and dismissive of remedies that work for others but not you. It isn't about Me Me Me Me Me.

There are some remedies that carry more risks that others but those who know the pain and the abject terror of facing even one more ordeal means risks are easily taken.

The reason why CH remedies have become a cottage industry is because there is no money in it for the pharmas, sure if a hand-me-down drug happens to work your welcome to it but don't expect them or governments to put their hands in their pockets to find a cure-all.

It really is down to the CH community to supply the expertise in helping sufferers. There are too few qualified experts and even they don't agree on diagnoses. But the CH community mirrors society at large, there are some good guys and there are others. Waiting months to see someone is not always an option and if as an alternative a sufferer turns to this or another CH site and there is a turf war going on over then the site has failed that person, and the people doing the battling are at fault. Plus its just boring to hear. And whilst I'm on the rant just because you have been here years doesn't make you right.

This site has so much going for it, so much positivity, its a pity that mean spiritness and inflated egos often mar the central message of; Help's here if you need it!

Thank you DJ for setting up the site and those on here that helped me when I most needed it

Everybody done acting like little children?

Hoppy wrote on Feb 15^th, 2016 at 10:27pm:

This thread has been viewed 1695 times with 91 replies! I would like to hear from folk that are trying your remedy and their results? Hoppy

Yikes…go away for a while and the snowball really gets going! Had to play an unexpected gig
at the Hoss-piddle just as I was prepared to send this….too thrashed to edit…I’m gonna send
as is…..and comment on the other replies later.....home now since they got tired of my act and sent my saddle home…….


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So…to answer the Hoppy question…


Well…ok….I HAVE….

Over 10 yrs ago….having given up, for 7 yrs, on PCP doctors and their endless scurries to the PDF to find me another useless migraine drug that was expensive…. with heavy side effects…I decided to try naproxen (but NEVER went without O2 on hand). Hey…it’s supposedly the best of the NSAIDS…and it’s OTC so it MUST be safe…right? Add naïve and once desperate to the list of what I am…

For at least 3 months I took the maximum daily dosage…with most fortunately no ill effects….and
unfortunately MINIMAL  beneficial effects on CH (maybe help with shadows). Now hang on…don’t start typing yet…I was ALSO on a version of the D3 regimen (very close to current)…having started that years before for a completely different heath condition. It had no discernible effect on my CH…was never intended to….and I never considered what a successful treatment it could be for so many. Kudos to batch for dedicated perseverance. I have told him I’m one of the what…20%.... for whom (I think) it does not work. Though I absolutely maintain it for previous stated purpose, “insurance”, and the increasing evidence for other beneficial effects.

When I finally returned for medical attention shortly after that…having found a neuro who totally understood CH…she related to me exactly what ‘benefits” (maybe stopping tiny hits (she didn’t know from clusterhead terminology “shadow”)) I was receiving from naproxen…before I told her anything but that I was taking it….and insisted I STOP. “This is very dangerous with little benefit”….. So, we have ‘battling neuros…what’s new? I totally respect her opinion, she gets it, and is a nationally recognized headache specialist. Later on, I had a discussion with a Ph.D. Pharmacologist (researcher)….he was of the same opinion re naproxen.

I’ve done my research…you’ve done yours…we both made personal choices that only affect us….I will repeat my previous stated concern…naproxen…even in Vivomo form…. is known to cause gastro, cardio, and renal problems…it’s right in the FDA lit… …add to that the esomeprazole…which is now linked to dementia, heart disease and kidney disease, among others. I think…and my opinion…is: I don’t want fellow clusterheads diving into a dangerous pond based on one person’s enthusiasm….not without a whole lot of careful consideration. I DON’T trust Docs to be careful enough…the best PCP I ever had was tops in all regards except one…..if I asked for, mentioned, suggested….or even discussed a med….she had the pad out ready to write a script. I had to be REAL careful. I suspect she got so tired of being hammered by folks who watch the stinking evil Pharma ads that she gave up. Yes, it was a bad fault…

Now, back in the old days on this forum…even before I was considered a jerk…the attitude that “it doesn’t work for ME….therefore it doesn’t work” was prevalent and frustrating. The power of persistence and success of alternate O2 treatment methods, alternate medicine, D3 and others kinda quieted that right down. I will state, unequivocally, that I did not and do not ascribe to “if not for me than for nobody”. This one, however, has potential for real danger…and I am puzzled by the amount of attention it has received…much more than even brain implant surgery (YIKES!)…. without the same amount of concern and caution. It got to be a little wild here on occasion.  Maybe it’s a reflection on the mature calm acceptance that the family has achieved…that is…. besides curmudgeons like myself….dunno…I’ll continue to say what I think….. until they won’t have me anymore….

Now then, if ya wanna talk about dangerous alternatives for CH treatment….consider chemo. So far, for ME, it has worked the best of any treatment ever….a side effect so to speak?  I am still chronic… but its only daily shadows for the past 3 years now (alas tho, it could be age, or D3, or chance, or who knows??????) Whatever, I am NOT recommending intentional attempts to prove one way or the other…………….

Best

Jon

Marc wrote on Feb 18^th, 2016 at 8:22pm:

I find it strange how people come here and insist that some of us are idiots, because "they have the cure for their type of headache."  That reminds of the surgeon who said that he got cluster headaches when he bent over too long during a long surgery, and had to take a nap to end it. I was chronic for more than 14 years with actual CH's. If a person actually has CH's, they will fully understand when I say that I was exploring the dark and scary places in the deepest recesses of my mind. Because of the collective information on THIS site, I have not had a real CH in more than two years now. Yes, I get some really minor twinges/warnings, but...... THERE IS NO WAY that I can begin to explain what it is like to get my life back after 14 years of agony beyond my wildest imagination. Yes, really - it is that amazing. The MOST important part of my post is: The people who were the hardest on me, were the MOST effective in making me explore the options. Pissing in the wind? Bigoted naysayers?  If you get your delicate feelings hurt on the internet, grow up, grow a pair and get over it. Been there and done that! I got all "butt chapped" a couple of times and deleted myself - before I grew up a little. If a person spends the time to research the information available here, they will find a way to better manage their CH's. I repeat for the folks looking for help: THIS IS THE PLACE. Read, look, research and listen. If you get your feelings hurt, decide if CH's or your feelings are more important - before you run away crying. People who care very deeply about the subject tend to be the most assertive and protective of this site. They worry about new people getting sucked into false narratives and suffering longer............... Then there is the Fluffy Bunny crowd who doesn't want to hurt anyone's feelings, under any circumstances. Marc

So good to see you posting again...I been worried...you so quiet!

I was hammered a few times myself "back in the day"...some eye opening pm's...even quit one time.
Then...and I don't know the originator...sorry...they said: "take what you need and leave the rest".
Holy smoking rockets Batman....what a concept...I think I'm buying!!!! Now when I get cranky and say stupid shit...I just hope the anger is at me....and not the site......................

Best

Jon

lancashire Lad wrote on Feb 19^th, 2016 at 8:54am:

So there you have it, you pays your money and takes your chance. Mushrooms, NAIDS, Triptomines inc 5MeOD, Vitamins, BP Meds, Epilepsy Meds, Oxygen but be sure its the right mask and flow rate, electrical nerve stimulation, RF Ablation, Meditation, hypnotherapy, manipulation, sleep sat up or on the opposite side to the pain, .38 copper sleeved lead etc etc. All have miraculous effects of stopping the beast in his tracks. Or Mine and Only Mine is the gold standard cure! I've mentioned it before and it was not meant to be flippant, CH can make you daft. It really can, I know. That much pain with no sight of relief in site can and does wear you down, and the effects on mental health become just another unwanted side effect. It doesn't mean however that fervent zeal for a particular remedy that works for you means it will work for others. It doesn't mean that that you and only you (with the exception of a chosen few) know what its like to have “The Real” CH. And it doesn't mean you should be uncharitable, rude and dismissive of remedies that work for others but not you. It isn't about Me Me Me Me Me. There are some remedies that carry more risks that others but those who know the pain and the abject terror of facing even one more ordeal means risks are easily taken. The reason why CH remedies have become a cottage industry is because there is no money in it for the pharmas, sure if a hand-me-down drug happens to work your welcome to it but don't expect them or governments to put their hands in their pockets to find a cure-all. It really is down to the CH community to supply the expertise in helping sufferers. There are too few qualified experts and even they don't agree on diagnoses. But the CH community mirrors society at large, there are some good guys and there are others. Waiting months to see someone is not always an option and if as an alternative a sufferer turns to this or another CH site and there is a turf war going on over then the site has failed that person, and the people doing the battling are at fault. Plus its just boring to hear. And whilst I'm on the rant just because you have been here years doesn't make you right. This site has so much going for it, so much positivity, its a pity that mean spiritness and inflated egos often mar the central message of; Help's here if you need it! Thank you DJ for setting up the site and those on here that helped me when I most needed it

LL...what a remarkable post...I agree with every word.

While I may say things harshly, or in a humor only I see, or in another's eye, stupidly or mean....or whatever. I say it because I'm a member of a club that I don't want to be in...and I don't want family harmed by what (granted) I think is harmful. I can learn...and I can progress....but there are certain things that are just wrong and/or dangerous.... and should be pointed out lest newer/less experienced family get sucked into a quagmire. Do I need remind older members of Danny and his like?

Best

Jon

wrote on Feb 18^th, 2016 at 3:01pm:

thierry wrote on Feb 18th, 2016 at 4:33am:   maybe they contribute financially in a big way to this site. Ummmmmm.....NO.... Yep I invested all the money I took out of my microsoft and fb stock and bought into chdotcom a site that costs DJ money to keep up.   Maybe you should ask him yourself.                Potter

I been thinking about this...and it brought to mind Jonny. If ya been here a while ya know him...if not...well..ya missed a hurricane. Anyway...he used to say something like we all have an obligation...not a "fleeting feel like" to support the site. WHATEVER your view on life...CH...or whateverTF....this site is THANKS to one remarkable man...who I have NO DOUBT has LOST money in the process...and SAVED lives!. There is a saying...I paraphrase: "who has saved a single soul...has saved the world entire".  DJ has done WAY so much more than that.

Jonny also used to say...."look at the bottom of this page...there is a paypal button...USE IT!" I have...but not nearly enough...there shouldn't be anyone on this site who doesn't have a receipt for same...can you find THIS anywhere else? Paypal!!!... brothers and sisters.........

And Potter...damn-nit...I live in Seattle...I REMEMBER Microsoft, Starbucks, maybe a coupla others...when they went IPO. I coulda bought at the bottom...but I am my Father's son...his idea of investment...with the $20 extra bucks he ever had... was "where are the  hard" assets?...if not, what's there to invest in? I wasn't gonna!. SHeeeee-it...he' s gone and I'm broke. I sure hope you didna sell..................

Best 

Jon

lancashire Lad wrote on Feb 18^th, 2016 at 6:36pm:

Hi Anubis If you get the impression you are pissing against the wind on here, you would be correct. But the wind bags are few, however bigoted the nay sayers, you were right to put up your solution, it would have mean for you not to. For you to be attacked for doing so is not mean just plain crass. This site may have helped save my life. I was in a great deal of difficulty and some of the advice was spot on , though some was less than helpful. I dip in from time to time to see if things have moved on, they haven't. CH is incurable! no one knows what causes it! it is the worst pain known to man! and GP's don't know what they are talking about! neuros aren't much better! but if you find a headache specialist who tell you what you want to hear and it conforms with the views of some of eminences on  here you are in safe hands! Lets cut some of the crap; CH does not have a single cause and there is no single panacea. NSAIDS can and do help. My problem was a multi headache syndrome which culminated, at its worst, with CH. I had got up to a 10 and it kept on going. I now know what causes my HA's, there is a cure but its not one I need to opt for at the moment (transected / cauterised nerves – top of neck 20mm into skull, 20mm to left from centre back). I now juggle with amitriptyline (former depression drug) used as a nerve block, normally 40mg once per day plus NSAID  (indomethacin 25mg – 150mg per day with gut protector)). And I can control most headaches, Downside Indo gives me a full HA (both sides at back) Amitript not good with booze. Personal body chemistry and specific impaction of nerve(s) plus other biological factors will determine what works for the individual. The “experts” are still groping in the dark with primary (don't know what causes it) and secondary (THINK they know what causes it). The truth is the current classifications of HA's are holding back the science. There is too much width in some of the diagnoses that means an individuals HA could have 2,3, 4 more causes and diagnoses. Internal blood pressure vs atmospheric pressure seems an obvious antagonist by either a blood vessel  growing through increased pressure and pressing on a nerve or the same blood vessel growing through drop in atmospheric pressure resulting in the same pressure on a nerve. Your fix works for you and therefore may well work for others therefore don't be put off from getting your fix out their to people who may benefit.  Let the D3ers believe what they want to (D3 is a anti-inflammatory but also helps in the reduction of BP and assists with elasticity of blood vessels – studies show too much can be as harmful as too little – the experts can't yet agree on where too much / little lies). Oxygen also works on modifying the diameter of blood vessels. There are some on here that hold that CH is a badge of honour, then there are some of us who wish not to have it and encourage others with our stories of success.

Thank you very much for your words of support, lancashire Lad, they hearten me greatly.

I did try Amitriptyline very briefly (basically on its own), but it didn't seem to stop my CHs, just give me a >very< deep sleep, which certainly was welcome, but I couldn't get out of bed until 2:00 in the afternoon! :) It's interesting that it seems to help you out.

Interesting that you are using another NSAID (indomethacin) with a protein pump inhibitor. Have you tried pairing that NSAID with some D3? Couldn't hurt, and I'd very much like to hear if you get any additional relief from the synergistic combination of the two. It would probably take about 2-4 weeks to build up your D3 levels, but in theory, you should notice nearly immediate further reduction in inflammation levels by combining the D3 with indomethacin.

Here ya go, maybe you could run your regimen by these folks.

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                        Potter

jon019 wrote on Feb 20^th, 2016 at 5:49pm:

Hoppy wrote on Feb 15th, 2016 at 10:27pm: This thread has been viewed 1695 times with 91 replies! I would like to hear from folk that are trying your remedy and their results? Hoppy Yikes…go away for a while and the snowball really gets going! Had to play an unexpected gig at the Hoss-piddle just as I was prepared to send this….too thrashed to edit…I’m gonna send as is…..and comment on the other replies later.....home now since they got tired of my act and sent my saddle home……. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE So…to answer the Hoppy question… Well…ok….I HAVE…. Over 10 yrs ago….having given up, for 7 yrs, on PCP doctors and their endless scurries to the PDF to find me another useless migraine drug that was expensive…. with heavy side effects…I decided to try naproxen (but NEVER went without O2 on hand). Hey…it’s supposedly the best of the NSAIDS…and it’s OTC so it MUST be safe…right? Add naïve and once desperate to the list of what I am… For at least 3 months I took the maximum daily dosage…with most fortunately no ill effects….and unfortunately MINIMAL  beneficial effects on CH (maybe help with shadows). Now hang on…don’t start typing yet…I was ALSO on a version of the D3 regimen (very close to current)…having started that years before for a completely different heath condition. It had no discernible effect on my CH…was never intended to….and I never considered what a successful treatment it could be for so many. Kudos to batch for dedicated perseverance. I have told him I’m one of the what…20%.... for whom (I think) it does not work. Though I absolutely maintain it for previous stated purpose, “insurance”, and the increasing evidence for other beneficial effects. When I finally returned for medical attention shortly after that…having found a neuro who totally understood CH…she related to me exactly what ‘benefits” (maybe stopping tiny hits (she didn’t know from clusterhead terminology “shadow”)) I was receiving from naproxen…before I told her anything but that I was taking it….and insisted I STOP. “This is very dangerous with little benefit”….. So, we have ‘battling neuros…what’s new? I totally respect her opinion, she gets it, and is a nationally recognized headache specialist. Later on, I had a discussion with a Ph.D. Pharmacologist (researcher)….he was of the same opinion re naproxen. I’ve done my research…you’ve done yours…we both made personal choices that only affect us….I will repeat my previous stated concern…naproxen…even in Vivomo form…. is known to cause gastro, cardio, and renal problems…it’s right in the FDA lit… …add to that the esomeprazole…which is now linked to dementia, heart disease and kidney disease, among others. I think…and my opinion…is: I don’t want fellow clusterheads diving into a dangerous pond based on one person’s enthusiasm….not without a whole lot of careful consideration. I DON’T trust Docs to be careful enough…the best PCP I ever had was tops in all regards except one…..if I asked for, mentioned, suggested….or even discussed a med….she had the pad out ready to write a script. I had to be REAL careful. I suspect she got so tired of being hammered by folks who watch the stinking evil Pharma ads that she gave up. Yes, it was a bad fault… Now, back in the old days on this forum…even before I was considered a jerk…the attitude that “it doesn’t work for ME….therefore it doesn’t work” was prevalent and frustrating. The power of persistence and success of alternate O2 treatment methods, alternate medicine, D3 and others kinda quieted that right down. I will state, unequivocally, that I did not and do not ascribe to “if not for me than for nobody”. This one, however, has potential for real danger…and I am puzzled by the amount of attention it has received…much more than even brain implant surgery (YIKES!)…. without the same amount of concern and caution. It got to be a little wild here on occasion.  Maybe it’s a reflection on the mature calm acceptance that the family has achieved…that is…. besides curmudgeons like myself….dunno…I’ll continue to say what I think….. until they won’t have me anymore…. Now then, if ya wanna talk about dangerous alternatives for CH treatment….consider chemo. So far, for ME, it has worked the best of any treatment ever….a side effect so to speak?  I am still chronic… but its only daily shadows for the past 3 years now (alas tho, it could be age, or D3, or chance, or who knows??????) Whatever, I am NOT recommending intentional attempts to prove one way or the other……………. Best Jon

Thank you for your feedback, jon019.

Don't know what to tell you. I'm still CH-free -- not a single one since Nov. 2nd 2015 after over a year and two months chronic. Perhaps the missing ingredient for me was the re-regulation of my sleep cycles using melatonin in large doses, simultaneously with the D3/Vimovo regimen? I don't know. All I know is that the D3+Vimovo has really been keeping my inflammation levels down and my CHs completely away, even without the melatonin. I've been taking some 5-HTP for the last couple of weeks instead of nightly melatonin. Seems to make me feel sleepy enough at bedtime, while letting me wake up better in the morning.

As for the 'FDA lit', here's a link I came across:

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Also, I've googled esomeprazole and can't seem to find any of the warnings you've mentioned about it. Not saying you're wrong, but just that I can't seem to find anything myself on this. I'm NOT saying Naproxen can't harm somebody with a tendency for stomach ulcers, but according to this, the dangers have been overstated. I promise I will report it the minute I get a CH while on this treatment, but so far, it has been the single most effective treatment I've yet taken in 9 years, including verapamil, prednisone, amytriptaline, vassopresin, Ibuprofen by itself, high dose D3 without NSAIDs, etc. etc.

wrote on Feb 17^th, 2016 at 2:55pm:

anubis44 wrote on Feb 17th, 2016 at 2:41pm: wrote on Feb 16th, 2016 at 9:39am:     Nope ten years pf.  I Bust em with something far safer than naproxen.                      Potter Potter, I had understood your use of the word 'bust' to mean that you abort CHs with something like Oxygen at the earliest sign of one. Is this incorrect? Are you saying you have an effective preventative treatment?   What you know about clusters you could put in a thimble.  You obviously don't read my replies.       Potter

I asked you a simple, polite question. How about a simple, polite answer instead of more insults?

anubis44 wrote on Feb 15^th, 2016 at 10:20pm:

wrote on Feb 15th, 2016 at 10:17pm:   I only push O2 and mooshies I like safe.             Potter Bully for you. Some of us want to be able to go out WITHOUT hauling around an oxygen tank. And better yet, not get any CHs in the first place.

wrote on Feb 22^nd, 2016 at 11:58am:

Here ya go, maybe you could run your regimen by these folks. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE                         Potter

Was thinking of doing that, but I wanted to hear a bit of feedback from some more experienced CH'ers on here first.

Kind words Anubis

FOR ME, Indo worked on its own for a while but the long term side effects are not good and can create quite a nasty (but tolerable) HA across the whole of the back of my head but stops a CH from taking hold.

Amitrip on its own @ 40/50mg lessons the other HA's I have and for most of the time keeps CH away.

The other HA's I get are Hemicrania Continuum (Left) and Cervicogenic (L) in head neck and shoulder. I get migraines full head, v little pain just aura. Used to be a growing zigzag line bright silver or multicoloured that eventually bend into a circle, effectively blinding me until it goes. That was until I used these two meds I'm talking about, since then the aura is at the extremes of my vision and just a grey waving at a frequency of a cooler fan.

Amitrip does take some getting used to even at the low dosage, I can't imagine what its like to take the higher doses that are used for depression, it would do my head in. And if you drink with it you need a bed nearby.

D3 I tried before I tried these two drugs without any benefit probable because I refused to take it at the most elevated doses that is sometimes advised on here. Its worth me trying again at say 10K /day

I suspect that D3 shows benefit to CH sufferers because of 2 effects. And if you consider a cause of CH can be blood vessels pressing on a nerve it makes sense.

1) D3 impacts on blood pressure, too little and blood vessels become stiff and BP rises, enough and excess makes blood vessels more elastic and reduces BP.
2) D3 is an anti inflammatory.

These two together could explain why CH commonly occurs at times when the sunlight is rationed by the seasons. Also a drop in atmospheric pressure results in blood vessels growing until things settle down. (imagine taking  balloon filled with air or other gas into a hyperbaric chamber and turned the pressure up, the balloon gets smaller, as you reduce the pressure it gets bigger.

But D3 does lots of other things and one is the production of various nitric oxide (NO) products, these are good but not at high levels which causes an exacerbation of Alzheimer's disease. The research continues and other studies lay weight to the connection.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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Some on here lay great store in the miraculous properties of D3 whilst dismissing the potential dangers thrown up by the research as quackery. I understand sticking with something that stops CH, I do not understand the unqualified rejection of scientific studies but we are not all the same. Thank goodness.

I did have a falling out on here because of the pushing of D3 as “perfectly safe” when the research shows no such thing. I see nothing wrong with promoting D3 as long as the potential risks are highlighted.

I am sure there is a safe level which is above the normally accepted high, I don't know what that level is and neither does anyone else. I am not talking about , Hypervitaminosis D which is reversable, Iam talking about the long term  extremely high usage where NO has the potential to do permanent damage.

I apologise in advance of kicking off another turf war (if that comes to pass) but I think it best that the full truth is debated and not just parts of it. A little learning is a dangerous thing!

ps Indometh and Amitript can both be dagerous and cause unpleasnat side effects but I know that and am happy to take them because although I still get HA's I haven't had one CH episode since I first started them.

lancashire Lad wrote on Feb 22^nd, 2016 at 1:07pm:

Kind words Anubis FOR ME, Indo worked on its own for a while but the long term side effects are not good and can create quite a nasty (but tolerable) HA across the whole of the back of my head but stops a CH from taking hold. Amitrip on its own @ 40/50mg lessons the other HA's I have and for most of the time keeps CH away. The other HA's I get are Hemicrania Continuum (Left) and Cervicogenic (L) in head neck and shoulder. I get migraines full head, v little pain just aura. Used to be a growing zigzag line bright silver or multicoloured that eventually bend into a circle, effectively blinding me until it goes. That was until I used these two meds I'm talking about, since then the aura is at the extremes of my vision and just a grey waving at a frequency of a cooler fan. Amitrip does take some getting used to even at the low dosage, I can't imagine what its like to take the higher doses that are used for depression, it would do my head in. And if you drink with it you need a bed nearby. D3 I tried before I tried these two drugs without any benefit probable because I refused to take it at the most elevated doses that is sometimes advised on here. Its worth me trying again at say 10K /day I suspect that D3 shows benefit to CH sufferers because of 2 effects. And if you consider a cause of CH can be blood vessels pressing on a nerve it makes sense. 1) D3 impacts on blood pressure, too little and blood vessels become stiff and BP rises, enough and excess makes blood vessels more elastic and reduces BP. 2) D3 is an anti inflammatory. These two together could explain why CH commonly occurs at times when the sunlight is rationed by the seasons. Also a drop in atmospheric pressure results in blood vessels growing until things settle down. (imagine taking  balloon filled with air or other gas into a hyperbaric chamber and turned the pressure up, the balloon gets smaller, as you reduce the pressure it gets bigger. But D3 does lots of other things and one is the production of various nitric oxide (NO) products, these are good but not at high levels which causes an exacerbation of Alzheimer's disease. The research continues and other studies lay weight to the connection. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Some on here lay great store in the miraculous properties of D3 whilst dismissing the potential dangers thrown up by the research as quackery. I understand sticking with something that stops CH, I do not understand the unqualified rejection of scientific studies but we are not all the same. Thank goodness. I did have a falling out on here because of the pushing of D3 as “perfectly safe” when the research shows no such thing. I see nothing wrong with promoting D3 as long as the potential risks are highlighted. I am sure there is a safe level which is above the normally accepted high, I don't know what that level is and neither does anyone else. I am not talking about , Hypervitaminosis D which is reversable, Iam talking about the long term  extremely high usage where NO has the potential to do permanent damage. I apologise in advance of kicking off another turf war (if that comes to pass) but I think it best that the full truth is debated and not just parts of it. A little learning is a dangerous thing! ps Indometh and Amitript can both be dagerous and cause unpleasnat side effects but I know that and am happy to take them because although I still get HA's I haven't had one CH episode since I first started them.

lancashire Lad,

Obviously, I can't say anything about your other HA's. On the subject of the CH's however, I will reiterate that I am completely convinced it is an inflammatory, rather than a neurological condition at this point. In a CH sufferer, I believe the tissues surrounding the trigeminal become inflammed by an excess production of prostaglandins, which are produced by the catalysation of arachidonic acid into prostaglandin by the enzyme COX-2. In short, CH sufferers almost certainly are producing excess quantities of COX-2. COX-2 is the exact enzyme produced by your body when you subject your tissue to trauma, such as banging your thumb with a hammer, or when you sprain your ankle, causing it to swell.

My notion is that something in the bodies of CH sufferers is detecting 'trauma' (probably erroneously) in the tissues surrounding the trigeminal nerve, and is producing and sending vast quantities of COX-2 out to these tissues. The COX-2 catalyses arachidonic acid into prostaglandin, and causes the tissue to swell and constrict the trigeminal nerve, much like a boa constrictor. The D3 in 10,000iu dosage (I sometimes double it to 20,000iu) reduces the production of COX-2, and an NSAID like Ibuprofen or the Naproxen in Vimovo, reduces the catalytic efficiency of the remaining COX-2 that does get produced. That's why there is strong synergistic effectiveness when they are combined.

One quick and simple way to see if the D3+NSAIDs will work for your CHs is to take 3 doses of Ibuprofen (I took 2x400mg Ibuprofen) with one of the Ibuprofen doses taken concurrently with the D3 (at least 10,000iu D3 daily), three times daily for several days, just to see if it stops your CHs. I tried this when I was over a month and a half on the D3, and took the Ibuprofen in the morning, at lunch, and after dinner, and it stopped my CHs almost immediately. The key is to take the Ibuprofen+D3 BEFORE you even start to get a CH, not in the hopes it will abort a CH that's already starting. If this does indeed work for you, it's highly probable the D3+Vimovo would also work, as the Naproxen in the Vimovo is really just a slower release (12-24 hours) NSAID formulation than the 4-6 hour Ibuprofen. It's very important to understand that the key is the D3+the NSAID. Either one on its own will not be potent enough as an anti-inflammatory.

Best wishes to you!

Annubis wrote:

As for the 'FDA lit', here's a link I came across:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Also, I've googled esomeprazole and can't seem to find any of the warnings you've mentioned about it. Not saying you're wrong, but just that I can't seem to find anything myself on this. I'm NOT saying Naproxen can't harm somebody with a tendency for stomach ulcers, but according to this, the dangers have been overstated. I promise I will report it the minute I get a CH while on this treatment, but so far, it has been the single most effective treatment I've yet taken in 9 years, including verapamil, prednisone, amytriptaline, vassopresin, Ibuprofen by itself, high dose D3 without NSAIDs, etc. etc.




Ummmm...note the date on that NBC report...2004. Recent and multiple news reports are not so sanguine. Re "FDA lit"...the following link was the second I opened following a Bing search (typed in Vivomo). I USED to so love Google...but as you have also apparently found, the results are lacking. There are multiple other links of interest.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

A few months back I started taking omeprazole on occasion....and as is the case with any med I take I researched it thoroughly. The problem seems to be with extended use...so I will take care....as the reports are ominous. We've already discussed the same for naproxen.......

Best

Jon

jon019 wrote on Feb 22^nd, 2016 at 3:08pm:

Annubis wrote: As for the 'FDA lit', here's a link I came across: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Also, I've googled esomeprazole and can't seem to find any of the warnings you've mentioned about it. Not saying you're wrong, but just that I can't seem to find anything myself on this. I'm NOT saying Naproxen can't harm somebody with a tendency for stomach ulcers, but according to this, the dangers have been overstated. I promise I will report it the minute I get a CH while on this treatment, but so far, it has been the single most effective treatment I've yet taken in 9 years, including verapamil, prednisone, amytriptaline, vassopresin, Ibuprofen by itself, high dose D3 without NSAIDs, etc. etc. Ummmm...note the date on that NBC report...2004. Recent and multiple news reports are not so sanguine. Re "FDA lit"...the following link was the second I opened following a Bing search (typed in Vivomo). I USED to so love Google...but as you have also apparently found, the results are lacking. There are multiple other links of interest. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE A few months back I started taking omeprazole on occasion....and as is the case with any med I take I researched it thoroughly. The problem seems to be with extended use...so I will take care....as the reports are ominous. We've already discussed the same for naproxen....... Best Jon

Jon,

Thanks. Yes, I did notice the date of 2004 on the NBC report. I figured, however, that most of the real scare-mongering about Naproxen pre-dated this report, and it appears I'm right. I did have a look at the link you sent me, and it is a reprint of the manufacturer's official legal disclaimer. As I've mentioned on this thread, I think a lot of Americans don't realize how incredibly litigious their society is. With all due respect, I am not completely discounting the possibilities mentioned in the disclaimer, but I will point out that people sue each other over hot coffee in the United States because it was hot. It is entirely understandable that the manufacturer of an NSAID would plaster their product with butt-covering warnings, just in case somebody happens to die who shouldn't have been taking it. In the US, just one successfully argued court case could utterly ruin the company. Unfortunately, the rampant paranoia in the United States only leads individuals to interpret the manufacturer's warnings as likely the 'sugar-coated' version of perceived even greater likely undisclosed dangers, and hence, we get into this ridiculous situation where people think the real dangers of a product like Vimovo are probably even worse than the almost outrageously assertive legal disclaimer, which is already exaggerating the dangers for the sake of legal protection.

The fact is, if you look at how many people have actually had Naproxen attributed as the primary cause of death, the number is fewer than for Aspirin or Ibuprofen in the 10 years leading up to 2014. I want everybody to really think about that. Naproxen killed fewer people than ASPIRIN or ADVIL. That tells me almost all I need to know. I'm not saying their is absolutely nothing bad about Naproxen, I'm just saying my research is telling me that the actual danger from this drug is dramatically less than the manufacturer's warning might appear to indicate, and I'm not even taking straight Naproxen, I'm taking an even safer version of it.

Anubis wrote, The fact is, if you look at how many people have actually had Naproxen attributed as the primary cause of death, the number is fewer than for Aspirin or Ibuprofen in the 10 years leading up to 2014. I want everybody to really think about that. Naproxen killed fewer people than ASPIRIN or ADVIL. That tells me almost all I need to know. I'm not saying their is absolutely nothing bad about Naproxen, I'm just saying my research is telling me that the actual danger from this drug is dramatically less than the manufacturer's warning might appear to indicate, and I'm not even taking straight Naproxen, I'm taking an even safer version of it.

                              THE END

Other than certain elements of this thread that DJ has commented on, this has been an extremely good one in that different medications are being discussed along with hypothesis as to how they might work, potential side effects and much more.

This sort of discussion is incredible in that we're bringing together people with a strong interest in making improvements to how we deal with CH (since we all have it) and we are working off the science.

Please do keep the discussion going like this and a thank you for all those contributing to this topic.

This has been one long thread "Trying at times" and my personal opinion is "Everything has been said that has to be said, time to move on, it's a no win situation"  [smiley=argue.gif]

Hoppy [smiley=lipsrsealed.gif]

Hoppy

I have a great deal of respect for you and agree with most of what you say and the balanced way you usually put your side, you're a long server and have contributed a great deal compared with my offerings and short the spell I attended and since been an infrequent (silent until now) visitor.

But.

Just where do you suggest we / they move onto? Everything has been said when a newbie can come on here and find a fix that everyone agrees on. And there can be a win win situation that arises from this thread.

Namely, (and I will condense what I have to say to keep this brief, in doing so I may offend, but you know me from old and it not a barrier for me)

I am sure DJ's explanation of why this site was created is understood. It has however evolved, which is natural. It now is a resource of many things to many people. The old timers who have or haven't found a source of relief but feel an obligation to stay around and offer their expertise, knowledge, comfort and support to newcomers who are struggling to cope. There are those who use the site as R&R to chill out with people they have an extremely strong common bond with whilst offering help to weary strangers that drop by. And it is this group that may cause some of the friction amongst newbies who either put up a fight or run away. The impression of hostility is unintentional I know but when a group of mates get together regularly over a number of years they form their own group personality, language, etiquette and limits of acceptable behaviour.

Newbies like I was are impressed by the welcome in awe of the advice and humbled by the scale of the problem (although perversely relieved that Its Not Just Me!). But the downside is there appears to be an innate intolerance to change of the status quo, if it hasn't already been invented here it doesn't work.

I may be wrong but that is how it comes across and that impression is the antithesis of what I think everyone on here wants to achieve. To Help Others!

Having said that there are trolls, personality disorders, closed minds and twats that need to be dealt with.

What I have said is not meant as a detrimental criticism, the behaviour on here is human and probably laced with more frustration than the majority of other social groups. It is threads like this assist with the evolution of the site.

I wish you well and I am sure you will help many others as you did me.

Peter

G'day Peter,
The reason I posted that reply was! I posted this on the 14th Feb, This thread has been viewed 1695 times with 91 replies! I would like to hear from folk that are trying your remedy and their results?

It's now been viewed 3281 times and 149 replies, and only one reply from someone that has tried this medicine, a negative one at that. So, I was just of the opinion everything that can be said about Vimovo has been said (the for and the against) so now's the time to let folk make up their own mind to give it a go or not.

By the way, nice to hear from you again.

Hoppy

Hoppy wrote on Feb 22^nd, 2016 at 7:04pm:

Anubis wrote, The fact is, if you look at how many people have actually had Naproxen attributed as the primary cause of death, the number is fewer than for Aspirin or Ibuprofen in the 10 years leading up to 2014. I want everybody to really think about that. Naproxen killed fewer people than ASPIRIN or ADVIL. That tells me almost all I need to know. I'm not saying their is absolutely nothing bad about Naproxen, I'm just saying my research is telling me that the actual danger from this drug is dramatically less than the manufacturer's warning might appear to indicate, and I'm not even taking straight Naproxen, I'm taking an even safer version of it.                               THE END

Why the snarky comment? What do you want me to say? That it's more dangerous than my research is telling me it is, without any evidence? What the heck do you want?

Hoppy wrote on Feb 23^rd, 2016 at 9:27am:

G'day Peter, The reason I posted that reply was! I posted this on the 14th Feb, This thread has been viewed 1695 times with 91 replies! I would like to hear from folk that are trying your remedy and their results? It's now been viewed 3281 times and 149 replies, and only one reply from someone that has tried this medicine, a negative one at that. So, I was just of the opinion everything that can be said about Vimovo has been said (the fore's and the against) so now's the time to let folk make up their own mind to give it a go or not. By the way, nice to hear from you again. Hoppy

Hoppy,

I agree with you. I want to know if anybody else has tried and had their CH's halted by a high D3+NSAID (Ibuprofen or Naproxen) routine as I believe I have. If it doesn't work for anybody else, I'd be the first person to want to hear about it. If it works for some CH'ers and not others, that's also crucial information. Maybe there are variations of CH that we need to identify? I simply want to know if it's effective for others, because if it is, I believe it will be a real breakthrough for CH, as it already has been for me.

The research exists to back up the exceptional anti-inflammatory synergies of high D3+NSAIDs: (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)

Although this source is looking at the benefits of D3+NSAIDs in treating prostate cancer, the discussion concerning dramatically reduced prostaglandin output is, I believe, eminently pertinent to CH sufferers. I believe CH is an inflammatory disease, not a neurological one, but we've been confused for a long time by the fact that it's the trigeminal nerve that is the source of the pain. I continue to maintain that its inflammation of the tissues surrounding the trigeminal that cause CHs. Dramatically reduced prostaglandin levels should = no CHs.

The relevant quote: "Our hypothesis is that the action of calcitriol at the genomic level to reduce COX-2 expression leading to decreased COX-2 protein levels will allow the use of lower concentrations of NSAIDs to inhibit COX-2 enzyme activity."

The implication of this statement is that you don't need high levels of NSAIDs to have significant impact on prostaglandin production if you take them with D3.

Here's another cancer study focussing on Naproxen and Naproxen derivatives: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Again, the relevance of this article is in its general discussion of inflammation and the specific effectiveness of Naproxen in reducing inflammation. The article also talks about the relative safety of Naproxen compared with other NSAIDs.

Now, if only some other CH'ers would give even the D3+Ibuprofen a try for 5-7 days! C'mon people, it's vitamin D3 plus Advil! Shouldn't be too difficult, and you can always use your Oxygen or Imatrex/Zomig (whatever you normally use as an abortive) if you do still get any CHs!

Anubis wrote, maybe there are variations of CH that we need to identify?



Primary Headaches That Resemble Cluster Headaches

Cluster headaches are a type of primary headache. A headache is considered primary when it is not caused by another disease or medical condition. Other primary headaches that resemble cluster headache include:
Chronic Paroxysmal Hemicrania. Chronic paroxysmal hemicrania is very similar to cluster headache. It causes multiple, short, and severe daily headaches with symptoms resembling those of cluster headache. As compared to cluster headaches, the attacks are shorter (1 - 2 minutes) and more frequent (occurring an average of 15 times a day). This headache is even rarer than cluster headache, tends to occur in women, and responds to treatment with the anti-inflammatory drug indomethacin (Indocin, generic).
Hemicrania Continua. Hemicrania continua occurs mostly in women. The pain, which can range from mild to severe, occurs continuously on one side of the face. Periodic attacks can last from days to weeks, and may resemble migraines. It is usually treated with indomethacin.
SUNCT Syndrome. SUNCT syndrome (short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing) causes stabbing or burning eye pain that may resemble cluster headaches, but attacks are very brief (lasting about a minute) and may occur more than 100 times per day. Red and watery eyes, sweating forehead, and congestion are typical. This rare headache is more common in men than women and does not respond to usual headache treatments.

Causes

Cluster headaches, like migraines, are likely due to an interaction of abnormalities in the blood vessels and nerves that affect regions in the face.

Abnormalities in the Hypothalamus

Evidence strongly suggests that abnormalities in the hypothalamus, a complex structure located deep in the brain, play a major role in cluster headaches. Advanced imaging techniques have shown that a specific area in the hypothalamus is activated during a cluster headache attack.

The hypothalamus is involved in the regulation of many important chemicals and nerve pathways.

Hoppy

For what its worth Hoppy my CH attacks lasted between 15 -80 mins, 3 -5 per day. I can cope with all HA's but not CH.

I could be wrong but I believe the cause of all my HA's have one source, around the brain stem (top). As the brain stem and hypothalamus work in unison with pain processing (signals looping back and forth).

The occipital, trigeminal and mandibular branch, once the system is overloaded can transfer (refer) the pain signals between each other. I witnessed this once when I had a bone cracker have a go at my neck, nothing much except worsening of my symptoms (which I was told to expect) then on the 3rd or 4th visit the bone cracker moved all the pain from behind my L eye into my left jaw. That was fine, it hurt like hell but I could give up all my meds, then on the next visit he put the pain back where it belongs. Nice. That was my last visit.

Anubis, don't expect folks on here to experiment for your research benefit, Look at it this way, you are not going to give up your regimen to try mine for the simple reason it may not work for you and the downside of that is bad. The same reason I won't give yours a try, I never want another CH again. 

lancashire Lad wrote on Feb 23^rd, 2016 at 5:08pm:

For what its worth Hoppy my CH attacks lasted between 15 -80 mins, 3 -5 per day. I can cope with all HA's but not CH. I could be wrong but I believe the cause of all my HA's have one source, around the brain stem (top). As the brain stem and hypothalamus work in unison with pain processing (signals looping back and forth). The occipital, trigeminal and mandibular branch, once the system is overloaded can transfer (refer) the pain signals between each other. I witnessed this once when I had a bone cracker have a go at my neck, nothing much except worsening of my symptoms (which I was told to expect) then on the 3rd or 4th visit the bone cracker moved all the pain from behind my L eye into my left jaw. That was fine, it hurt like hell but I could give up all my meds, then on the next visit he put the pain back where it belongs. Nice. That was my last visit. Anubis, don't expect folks on here to experiment for your research benefit, Look at it this way, you are not going to give up your regimen to try mine for the simple reason it may not work for you and the downside of that is bad. The same reason I won't give yours a try, I never want another CH again.

lancashire lad, what research benefit would that be? I'm not a doctor. I won't get anything out of it if my treatment routine works except for the satisfaction of knowing I helped somebody. I'm not expecting anything. You can do whatever the heck you like. Don't try 5-7 days of 10,000iu D3 and 3x2 400mg Ibuprofen daily if you really don't want to, although why somebody with such a painful and debilitating illness as CH wouldn't bother to try something that simple just on the off chance it worked is beyond me. I'm just patiently waiting for any reports of the effectiveness/ineffectiveness of my treatment approach to slowly filter in. I can see from your condition that CH is but one of the medical conditions you're dealing with. If what you're already doing is keeping you 100% pain-free, then of course I wouldn't expect you to try what I'm taking. But if you're still getting CHs, I think you'd be pretty silly not to chug down some D3 and Ibuprofen as per my suggestion, just as a test. After all, neither are even prescription drugs, at least in Canada where I am, although the 10,000iu D3 dose is prescription, but 5,000iu D3 is not.

What I can also tell all of you is that it's not just my CHs that have stopped because of the D3+Vimovo. It's also done away with the arthritic (inflammatory) pain I started getting in my right hand around the time I went from episodic to chronic, and, oh what the hell, I don't care anymore about propriety, it also completely cleared up the hemorrhoids (yet another inflammatory condition) I've had since I was in my late teens that preparation H never got rid of, either. So that's 3 inflammatory medical conditions that are now gone with the D3+Vimovo.

Anubis

I suspect that isn't what was intended when someone told you to stick your advice up your arse.

Hoppy wrote on Feb 23^rd, 2016 at 4:05pm:

Anubis wrote, maybe there are variations of CH that we need to identify? Primary Headaches That Resemble Cluster Headaches Cluster headaches are a type of primary headache. A headache is considered primary when it is not caused by another disease or medical condition. Other primary headaches that resemble cluster headache include: Chronic Paroxysmal Hemicrania. Chronic paroxysmal hemicrania is very similar to cluster headache. It causes multiple, short, and severe daily headaches with symptoms resembling those of cluster headache. As compared to cluster headaches, the attacks are shorter (1 - 2 minutes) and more frequent (occurring an average of 15 times a day). This headache is even rarer than cluster headache, tends to occur in women, and responds to treatment with the anti-inflammatory drug indomethacin (Indocin, generic). Hemicrania Continua. Hemicrania continua occurs mostly in women. The pain, which can range from mild to severe, occurs continuously on one side of the face. Periodic attacks can last from days to weeks, and may resemble migraines. It is usually treated with indomethacin. SUNCT Syndrome. SUNCT syndrome (short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing) causes stabbing or burning eye pain that may resemble cluster headaches, but attacks are very brief (lasting about a minute) and may occur more than 100 times per day. Red and watery eyes, sweating forehead, and congestion are typical. This rare headache is more common in men than women and does not respond to usual headache treatments. Causes Cluster headaches, like migraines, are likely due to an interaction of abnormalities in the blood vessels and nerves that affect regions in the face. Abnormalities in the Hypothalamus Evidence strongly suggests that abnormalities in the hypothalamus, a complex structure located deep in the brain, play a major role in cluster headaches. Advanced imaging techniques have shown that a specific area in the hypothalamus is activated during a cluster headache attack. The hypothalamus is involved in the regulation of many important chemicals and nerve pathways. Hoppy

No Hoppy, I'm not talking about CH analogues, I'm talking about the possibility that bona-fide CHs themselves could have sub-variants, although I'm pretty skeptical about this right now.

lancashire Lad wrote on Feb 23^rd, 2016 at 5:49pm:

Anubis I suspect that isn't what was intended when someone told you to stick your advice up your arse.

LOL. So far, nobody has suggested that. But at least it has been remarkably effective there, too. :)

Good one.

Lancashire lad wrote, For what its worth Hoppy my CH attacks lasted between 15 -80 mins, 3 -5 per day. I can cope with all HA's but not CH

Peter, if I caught my CH in time in the early days with Migral, then Zyprexa, and finally using 50mg Imigran tabs, they would abort it in about 5mins, otherwise it would climb to a kip10 and then fade away in about 20mins, without meds it would last for an hour and then fade away, this would happen twice a day through the months of Spring and  Autumn, CH same time in the morning and in the arvo, and some times one would wake me from my sleep, to late for meds! I just had to ride it out  [smiley=headbanger.gif]... I went to see a bone cracker back in the 80s! It didn't stop me from getting CH's, but instead, I inherited a sore shoulder which is still with me today  >:(

Hoppy

Anubis wrote, No Hoppy, I'm not talking about CH analogues, I'm talking about the possibility that bona-fide CHs themselves could have sub-variants, although I'm pretty skeptical about this right now.

OK, Their are lots of headache types "Variants" that mimic CH's.

Hoppy

Hoppy

I suspect you know that shoulder pain can be associated with the trigeminal nerve or trigeminal neuralgia, I know several times in the period of few months my shoulder felt like it had been sprayed with a deep heat pain relief spray, I hadn't put anything on it or changed my med regime, very strange thing referred pain and associated symptoms.

I know you are a staunch supporter of getting the Right diagnoses a la Goadsby and Sjaastad schools. I don't agree with the emphasis on getting the diagnosis correct before treatment commences.

Goadsby and Sjaastad had a public falling out over the strict language of a particular HA diagnosis in a leading HA Journal, I wrote to both of them and chastised them saying the most important thing for me (as a patient) is to stop the pain. To his credit Sjaastad wrote back with a kind reply but I think Goadsby's must have got lost in the post.

And its the difference in our views that I suspect has held back the science, I am not over exaggerating.

The point being that in Primary (HA's) (I don't like that term either) the diagnosis points towards a set of treatment(s) that should be applied and a trial and error period of finding the treatment that brings most relief.

I know from bitter experience that my HA's probably have a single cause, even the so called Secondary one of  Cervicogenic. But the “experts” would have me believe each one needs to be treated independently.

I will repeat to emphasis my point (I'll also exclude Cervicogenic) The Primaries I have are Migraine, Hemicrania Continua and CH, for each the precise cause is not known but there is a recognised and accepted drug therapy regime(s) for each.

Not one expert can tell me that there are multiple causes or a single cause but they can offer me three different therapeutic approaches based on each diagnosis.

This is nonsense because if my HA's derive from a single source (which I am convinced they do) then the emphasis must be on tackling that problem and until they have that ability then give me some bloody pain killers that work.

An Irish neuro I came across who also doubted the established approach told me that it is such a complex subject and overlap of diagnoses that finding something that works rather than following a rigid diagnostic path is usually the most efficient method of treatment, if somewhat unacademic.

You have a pain system that has loads of different chemicals, enzymes and neuro transmitters sloshing about, nerve roots swapping pain signals and different parts of the brain looping information back and forth trying to make sense of the chaos.

Nerve Root Irritation is most likely my problem, solution remove the inflammation (with and anti inflammatory) on the nerve and deaden it by preventing it from sending messages (amitriptyline).

There are lots of other approaches many of which are involved with reducing the pressure of blood vessels on the nerve that is inflamed. This is not to be confused with neurovascular approach to the problems.

Peter

Lancashire Lad wrote, I suspect you know that shoulder pain can be associated with the trigeminal nerve or trigeminal neuralgia, I know several times in the period of few months my shoulder felt like it had been sprayed with a deep heat pain relief spray, I hadn't put anything on it or changed my med regime, very strange thing referred pain and associated symptoms.

Hi Peter,
It seems strange for me to be asking a CH related  :question on here, but here goes. Like I mentioned earlier, the pain in my right shoulder just below my neck (same side as my CH's) is hard to describe, but it's like a numbness with pins and needles if that makes any sense.  It only came about after seeing a bone cracker about my CH's. Thoughts.

Cheers Hoppy

Hoppy

I am sorry to say that you have the classic symptoms of being knackered.

No hope I'm afraid.

Hey Hoppy,

The pins and needles, like a slight prickling or crawling sensation is called paresthesia.

Does this sensation extend across your upper chest to the shoulder or is it just localized at the base of your neck?  Any shot up lymph nodes under your jaw or on the back of your neck?

Take care,

V/R, Batch

Batch wrote, The pins and needles, like a slight prickling or crawling sensation is called paresthesia.

Does this sensation extend across your upper chest to the shoulder or is it just localized at the base of your neck?  Any shot up lymph nodes under your jaw or on the back of your neck?

Batch, just localized to the shoulder at the base of my neck to the right, I also have the same feeling in my little finger on my left hand. I'm not sure what to look for, for shot up lymph nodes.

Hoppy

Lancashire Lad wrote, I am sorry to say that you have the classic symptoms of being knackered.

I already knew that  [smiley=lolk.gif].

Hoppy

Being serious for a moment Hoppy if your lymph glands have been swollen for while and you don't think you have an infection it would be a good idea to see the doc and get a blood test.

The shoulder thing could involve the trigeminal stuff but whilst you are at the docs have him check it out. If if a bad Chiro caused the problem a good one may be able to put it right but from personal experience you need to be confident that any chiro / osteopath knows what s/he's doing.

Best wishes

Peter

Still not a single CH.

I've been keeping the Vimovo down to about 1 or 2 a week. Still taking the D3 in amounts of 10,000IU daily and the very occasional 20,000IU in a day. Still using a 5 or 10mg melatonin most nights for sleep, and sometimes, a Trazadone to make me fall asleep if I feel too awake by 11pm.

I'm now more convinced than ever that staying CH-free is a matter of fighting an anti-inflammation war. Your weapons include a daily dose of Vitamin D3, Vimovo as needed for that supercharged synergistic combination effect with the D3, and very importantly, getting regular, full sleep on a consistent basis, using at least 5 or 10mg melatonin every or at least, most nights, and taking Trazadone or whatever very effective sleeping pill/aid to ensure you are asleep at a consistent time every single night.

The consistent sleep and adequate duration seems, at least for me, to be key to staying CH-free. Your body removes toxins from your blood while you sleep, and if you don't sleep consistently enough or for long enough, these toxins build up in your system. I'd be willing to bet that these toxins contribute to COX-2 production somehow. In any event, the D3 and the very occasional Vimovo, along with the Melatonin/very occasional Trazadone all seem to be keeping me 100% CH-free. I can't stress enough how effective this treatment has been for me. The best part is that I am completely myself. No side effects or having to rush to a Zomig nasal spray or O2 tank. Ever.

I sincerely hope it will also help others.

I will continue to update this thread occasionally at milestone intervals. For example, it'll be 6 months since I went from being chronic to 100% CH-free as of May 2nd, so I'll post again to indicate if I'm still CH free then.

Hey Anubis,

Thanks for the wonderful update...  Glad to hear you're CH pain free... and you know why...

Take care,

V/R, Batch

I am glad to hear you are still doing well , I have read some of this  looking for extra clues to what my be a help to me .
So far so good , and also I do like you are saying with the regular sleep hours . I has been hard to get any good thing going with past CHs . But since I have been doing the D3 regimen I am able to sleep much better and I know that helps.
I was even shocked to find last night I did a seven hour stretch without waking up .

MGP...

Great post... It gets even better as long as you stick with this regimen...

Take care and please keep us posted.

V/R, Batch

First I want to commend you on finding a routine that works, and the kindness to share it.

Secondly, it's a shame that we have to "defend" what we claim is working. Naproxen is an aspirin relative but saying "an aspirin" won't help my headaches is a bit of a put down.

Everyone, listen up!! We're here to support one other, learn, and try new ideas from time to time. It costs nothing to be supportive. Don't forget that we CHers don't get a lot of support outside of our CH circle. Let's let kindness rule our dialog.

*** 7 month update ***

Hi all!

Still not one CH, and I mean zero. Zilch CH's since I first started this regimen. I feel like I have my life back. I can drink/have sex, stay up a bit late once in a while (though that last one is probably the most dangerous risk in terms of keeping me CH-free), all without a single CH.

I continue to take melatonin basically almost every night (though I cut the dosage down to 5mg pills from 10mg) and/or the occasional Trazadone (or half Trazadone) as a sleeping pill if I can't seem to fall asleep. I'm becoming increasingly convinced that making myself sleep deeper with the melatonin and regularly, with the occasional Trazadone is also contributing greatly to my pain-free status. I have even started to become quite cavalier with the D3, sometimes going a couple of days without taking one 10,000IU pill, and especially cavalier with the Vimovo, often going for well over a week without taking one with a D3. But I still find I feel the need to take a Vimovo 500/20mg every now and again (maybe once every week/week and a half) with a 10,000IU D3 to keep the inflammation levels in my body from building up again. Like yesterday, it had been almost 2 weeks since my last Vimovo, and I felt just the very slightest hint of a shadow, so I downed one with a D3, and that did the trick.

Still able to drink as much alcohol as I like (sometimes 2-3 beers, wine, mixed drinks, etc.) without so much as a hint of a shadow!

Hope all of you in the northern hemisphere are enjoying your summer!

Am pleased it is working so well for you, long may it continue to do so and enabling you to live life as free as possible from CH.

Mike NZ wrote on Jun 9^th, 2016 at 9:25pm:

Am pleased it is working so well for you, long may it continue to do so and enabling you to live life as free as possible from CH.

Thank you, Mike!

*** 10 month update ***

Still not one CH.

I continue to take 5-10mg melatonin most nights, and the occasional Trazadone (or half Trazadone) as a sleeping pill if I can't seem to fall asleep.

Still taking daily D3 in 1x10,000iu (most of the time) or 2x10,000iu (when I feel a need for a boost or with a vimovo) dosages. Still augmenting my D3 with a 500/20mg Vimovo approximately 1-3 times per week (1 per day on those days), if I feel either a slight hint of shadow or any hint of arthritic soreness starting in my right hand joints. Both the D3 and the Vimovo are taken together for maximum effect, and they are keeping me utterly pain-free, probably in concert with the regular sleep provided by the melatonin and Trazadone.

Still able to drink as much alcohol as I like (sometimes 2-3 beers, wine, mixed drinks, etc.) without so much as a hint of a shadow. This treatment regimen worked for me when nothing else did, and it prevents CHs from happening, it's not merely a response once they're coming on. My quality of life is profoundly different now. This is really working, folks. I urge any chronic sufferers to try this.

...good for you...glad you are PF...and I STILL note you are a club of ONE...that naproxen sodium is
dangerous with extended use...and anyone considering should most definitely confide such to
their headache specialist......

best

Jon

jon019 wrote on Sep 6^th, 2016 at 8:26pm:

...good for you...glad you are PF...and I STILL note you are a club of ONE...that naproxen sodium is dangerous with extended use...and anyone considering should most definitely confide such to their headache specialist...... best Jon

Stop trying to dissuade people from getting their lives back! It's unseemly!

In all seriousness, Vimovo (naproxen sodium PLUS esomeprazole) is about as dangerous as advil. If you can pop advils (Ibuprofen) you can take Vimovo. It's actually a slow-release, easy on the stomach arthritis medication, but it just so happens to supercharge vitamin D3's inflammation-reducing powers by complementing it. So far, I've had absolutely zero negative health effects from over a year of taking 1x500/20mg Vimovo 2-5 times per week+1 or 2x10,000IU vitamin D3 tablets daily. Frankly, I think people are just not believing this can really stop CHs, but it does. I'm very serious about this, that's why I'm still updating this thread. If YOU are getting CHs, ESPECIALLY if you are chronic, you MUST see your doctor to ask about getting a Vimovo prescription and 10,000IU D3 tablets. You MUST take it daily to start, and once the CHs stop entirely (after 1-2 weeks), you can cut down mainly on the Vimovo to 2-5 per week (depending on how you're feeling) but if you do, you will get your life back. It worked for me.

....well, to begin with..... you serve up HORSESHIT!.....it behooves (pun intended) me to point
that out....

...posting the same thing twice is juvenile...

...extended use of naproxen is DANGEROUS......

...you need to keep up on your "research"...the evidence builds....

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

...nothing in my quote  was unseemly or untrue....there's a whole thread to peruse here
so no sense repeating same argument...cuz "you can knock forever on a deaf man's door"....

...why is it you don't join the rest of the family and lend support on other issues/topics....this one
trick pony stuff is boring.....

....where have you been for the last 3 months....I thought you finally went away...pain free
on the D3 regimen..

Bye

jon019 wrote on Dec 1^st, 2016 at 1:18am:

....well, to begin with..... you serve up HORSESHIT!.....it behooves (pun intended) me to point that out.... ...posting the same thing twice is juvenile... ...extended use of naproxen is DANGEROUS...... ...you need to keep up on your "research"...the evidence builds.... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ...nothing in my quote  was unseemly or untrue....there's a whole thread to peruse here so no sense repeating same argument...cuz "you can knock forever on a deaf man's door".... ...why is it you don't join the rest of the family and lend support on other issues/topics....this one trick pony stuff is boring..... ....where have you been for the last 3 months....I thought you finally went away...pain free on the D3 regimen.. Bye

First of all, saying I'm 'serving up horseshit' is what's truly juvenille, particularly when you can't properly explain with any supporting facts why you think so.

Second of all, I didn't INTENTIONALLY double-post. Since I only just logged back on here for the first time now (Feb. 9th, 2017) I didn't realize I had somehow produced a second copy of my reply.

Third of all, I came on here to report that I had an allergic response to something in a supplement that I was taking (still haven't isolated the exact ingredient) called 'Libido', which is supposed to help your body boost its testosterone production. The allergic response also, you guessed it, produced a brief cluster cycle. This is extremely interesting, because, as Batch points out in his thread, allergic (ie. histamine response) is a potential trigger for CH. What's noteworthy to me, as a former chronic CH'er, is that a histamine response can produce a mini-cycle over two-three days, which I'm able to break with enough antihistamine. This lends credibility to the notion that CH may be condition whereby your body's histamine response mechanism is triggered on the circadian rhythm by something in your body OR by an actual allergen that simply produces a histamine response! There's inflammation, to be sure, but the inflammation is caused specifically by a histamine response. It's just that in the case of a CH'er, that inflammation happens to press against (crush?) the tri-geminal nerve. In any case, I feel like I'm getting closer and closer to understanding CH, as I can now stop and start the CH's at will. The question of the CH's happening in longer clusters probably has to do with this histamine response being triggered by something produced within you body, on the circadian rhythm, rather than an external allergen (something you eat/breath in, etc.)

As a result of this finding, I'm going to request that the admins close and archive (but not delete) this thread. I do want the information in it to be preserved for research purposes, but I think I will try to participate in Batch's thread again and possibly start a new thread pertaining to these new findings associating histamine response, inflammation and CH.

Thanks to all, even the curmudgeons!

Feb. 15th addendum

I've decided to continue this thread, as it now serves essentially as the record for my CH experience. Now that I've been PF for over 1 year after being chronic, and then once again started a cycle, almost certainly due to an allergic response, I'm going to keep adding info in the hope that it will somehow benefit others. I still believe in Batch's high vitamin D3 anti-inflammatory approach, and that my NSAID supplement does further increase the efficacy of the D3 treatment. However, allergic responses triggering large histamine levels seem to be VERY capable of pushing the inflammation levels up well past the level that the D3/vimovo can contain. In the case of my latest CH, even in conjunction with high doses of benadryl, if the histamine response is severe enough. I am therefore now exploring the root causes of my allergic response (which even produced a rash, both a few weeks ago, and a much smaller one again yesterday), and hoping that what I come up with will also help others.

First of all, saying I'm 'serving up horseshit' is what's truly juvenille, particularly when you can't properly explain with any supporting facts why you think so.

Yup...poor choice of words and I apologize...hard-headed and single minded more appropriate. There is an entire thread of "supporting facts'...I can't help it if you care not to read.... nor believe

Second of all, I didn't INTENTIONALLY double-post. Since I only just logged back on here for the first time now (Feb. 9th, 2017) I didn't realize I had somehow produced a second copy of my reply.

Proof reading ones own posts is a good idea....less misunderstandings

Third of all, I came on here to report that I had an allergic response to something in a supplement that I was taking (still haven't isolated the exact ingredient) called 'Libido', which is supposed to help your body boost its testosterone production. The allergic response also, you guessed it, produced a brief cluster cycle. This is extremely interesting, because, as Batch points out in his thread, allergic (ie. histamine response) is a potential trigger for CH. What's noteworthy to me, as a former chronic CH'er, is that a histamine response can produce a mini-cycle over two-three days, which I'm able to break with enough antihistamine. This lends credibility to the notion that CH may be condition whereby your body's histamine response mechanism is triggered on the circadian rhythm by something in your body OR by an actual allergen that simply produces a histamine response! There's inflammation, to be sure, but the inflammation is caused specifically by a histamine response. It's just that in the case of a CH'er, that inflammation happens to press against (crush?) the tri-geminal nerve.  In any case, I feel like I'm getting closer and closer to understanding CH, as I can now stop and start the CH's at will. The question of the CH's happening in longer clusters probably has to do with this histamine response being triggered by something produced within you body, on the circadian rhythm, rather than an external allergen (something you eat/breath in, etc.)

Now THAT'S some thoughtful stuff...which I agree with....and thought there was a connection even 30+ years ago when this all started for me. Btw...it's not just testosterone supplements to be concerned about. I recall a multi vitamin that had the same effect on me....never narrowed down which particular ingredient it was.............

As a result of this finding, I'm going to request that the admins close and archive (but not delete) this thread. I do want the information in it to be preserved for research purposes, but I think I will try to participate in Batch's thread again and possibly start a new thread pertaining to these new findings associating histamine response, inflammation and CH.

That would be an unusual step for DJ to take...sure he has enough on his plate already. Threads live or die on their own........

Thanks to all, even the curmudgeons!

Any time....especially when there is no mention of the v or n words...........

Best

Andy Rooney

As far as what will trigger the production of the cox2, I have some input to that.
I am an episodic sufferer of CH's but I get them VERY infrequently. Usually about 5 years go by before the beast visits. I also have a trigger; they (cycles) ALL have started after I had a bad cold and/or flu, no exceptions. As soon as the congestion started to relieve, the CH's came on for a couple weeks. They have also always come on in January/February, the time when I get the least amount of sunshine/outdoor exposure (hence no D3 production from the Sun)

I have Sumatriptan but it does NOTHING. A few urgent care visits where they gave me O2 (which cleared up my head but the attack was already gone). Last time I got a shot of a strong anti imflammatory which REALLY cleared up my head 100%. Next day the attacks came back.
So after reading up I now started D3 and lots of water intake and believe it or not, 1 day later I already feel a difference. I had 1 small attack this morning and I feel the beast in there but it doesn't seem to get a grip for a full on attack. First day I took about 70,000 iu and I plan to kickstart it w about 100,000 iu/day for a week or so , then go back down to a lower dose.
I also feel the high water intake is helping.

Anyone heard of a cold/flu being an episode trigger?

Regarding colds being a CH trigger...  It happens all the time...  Colds cause an increase in immune system activity that consumes available 25(OH)D at a high rate leaving too little to prevent CH.

For CHers taking the anti-inflammatory regimen at 10,000 IU/day vitamin D3, at the first sign of a cold, (itchy throat, dry cough) I've found it's best to bump the vitamin D3 dose to 40,000 IU/day for a week and start taking vitamin C at 1000 mg every two hours.  It also helps to increase zinc to 20 mg/day until all cold symptoms are gone.

Regarding taking vitamin D3... you need to take all the vitamin D3 cofactors to ensure optimum pharmacokinetics and pharmacodynamics.  400 mg/day magnesium is most important as it supports the enzymatic processes that hydroxylate vitamin D3 to its genetically active metabolite.

You can pull down the latest version of the anti-inflammatory regimen at the following VitaminDWiki link.  It explains the vitamin D3 regimen and all the cofactors along with  suggested doses.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

Batch wrote on Feb 14^th, 2017 at 12:31pm:

. You can pull down the latest version of the anti-inflammatory regimen at the following VitaminDWiki link.  It explains the vitamin D3 regimen and all the cofactors along with  suggested doses. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Batch...glad to see a compilation in one easy to read place. And congrats on Cluster Ache Inc.

Patti

Bag the vimovo and replace with shrooms.  Bust the cycle not mask it.

                   Potter

So, just reporting in that I had to go to the hospital yesterday evening with a 5th and never-ending CH (didn't stop after more than an hour, and I had used every weapon in the arsenal against it to no effect). Had been getting CHs with increasing regularity over the preceding few days, and it finally culminated in a force 9-10: my first since September of 2015. At the hospital, I asked for and was given a tramadol (an opioid + acetaminophen). What really helped while I was waiting for the tramadol to do something was a VERY hot gel pack, wrapped in a thin towel at first, applied to the browbone and temple around my right eye. The pain was still there, but with the hot pack, I could immediately pull the pain down from about a 9 to a 3-4. At home, I often use hot water on a face cloth (since it's instantly available heat), but of course, I have to keep running the hot water over the face cloth to replenish the heat every 10-15 seconds. The ER doctor wrote me a prescription for tramadol, and gave me another one to take when I got home to help me sleep. When I got home at about 1am, I also took a trazadone to help me sleep, and between the 2 tramadols and the trazadone, I was able to get a full night's sleep. Slept until noon today, whereby the CH was back at about lvl 5-6, so I took a zomig and 2 bendryls. I also downed some orange juice and used the hot water facecloth, and the CH actually disappeared completely within 15-20 mins.

The cause of the force 9-10 is still up in the air, but it could have been the sweetgrass essential oil my girlfriend used and spilt a little of on the bedsheets (we changed the sheets/pillow cases last night after I got home from the hospital). It could also have been caused by something that I ate. In any event, I also started to get a few bumps of a rash on my hands and arms, a more subtle version of the rash that the 'Libido' supplement gave me a few weeks ago, which I now believe is likely responsible for starting my first CH cycle in more than a year. The presence of a rash is a dead giveaway for a histamine response, which was the trigger for this latest CH cycle. I am back to taking max doses of benadryl to bring the histamine response under control, along with Batch's D3 regimen, and a Vimovo once or twice a day. I had also been taking vitamin C (which didn't seem to have any effect in the face of the histamine response), but that tall glass of orange juice, (combined with the benadryl and the zomig) seems to have helped make the CH stop entirely, for the first time since the onslaught of it around 8pm last night.

I am now paring down my dietary choices to the most simple foods in an attempt to break this latest CH cycle, eliminating diet pop once again (I had stopped drinking it back when I first became PF back in Oct./Nov. 2015), and I'll report on my progress.

Batch wrote on Feb 14^th, 2017 at 12:31pm:

Regarding colds being a CH trigger...  It happens all the time...  Colds cause an increase in immune system activity that consumes available 25(OH)D at a high rate leaving too little to prevent CH. For CHers taking the anti-inflammatory regimen at 10,000 IU/day vitamin D3, at the first sign of a cold, (itchy throat, dry cough) I've found it's best to bump the vitamin D3 dose to 40,000 IU/day for a week and start taking vitamin C at 1000 mg every two hours.  It also helps to increase zinc to 20 mg/day until all cold symptoms are gone. Regarding taking vitamin D3... you need to take all the vitamin D3 cofactors to ensure optimum pharmacokinetics and pharmacodynamics.  400 mg/day magnesium is most important as it supports the enzymatic processes that hydroxylate vitamin D3 to its genetically active metabolite. You can pull down the latest version of the anti-inflammatory regimen at the following VitaminDWiki link.  It explains the vitamin D3 regimen and all the cofactors along with  suggested doses. Take care and please keep us posted. V/R, Batch

Thanks for the Info, Batch, you are a saver of my sanity !!
So the first day I only had 2 attacks and they were of much lower intensity, 3 or 4 maybe. I did have a regular headache for most of the day.
I am now on day 2 and I haven't even had a single attack or anything near it.. it seems gone ! I keep taking D3 and multivitamins. I feel so much better today. I really feel this D3 regimen is exactly what I needed. Can't believe I broke the cycle with it so soon after it started. Next cold I get I will immediately start up the regimen, might just stick to low dosage of D3 during winter. The cycle only starts after a serious cold or flu, not a 1 or 2 day cold. Luckily I only get the bad cold/flu's every 4 or 5 years and I will have plenty of time to boost up the vitamins before the cycles start. The cycle starts when the cold is just about gone.

Has anyone else had such quick results form D3 w high water intake ? I can barely believe it.....

Highly recommended, I will report back on progress.

anubis44 wrote, So, just reporting in that I had to go to the hospital yesterday evening with a 5th and never-ending CH (didn't stop after more than an hour, and I had used every weapon in the arsenal against it to no effect). Had been getting CHs with increasing regularity over the preceding few days, and it finally culminated in a force 9-10: my first since September of 2015. At the hospital, I asked for and was given a tramadol (an opioid + acetaminophen). The ER doctor wrote me a prescription for tramadol, and gave me another one to take when I got home to help me sleep. When I got home at about 1am, I also took a trazadone to help me sleep, and between the 2 tramadols and the trazadone, I was able to get a full night's sleep.

[smiley=confused.gif]  :question :question :

Hoppy

Hey R2D1,

Thank you for the feed back...  You're singing my song...  I was completely pain free by the second night on this regimen...  All I could think was YGBSM!  It can't be that simple...  but it is...

It happens that way for roughly 10% of CHers starting the anti-inflammatory regimen. 70% of CHers who start this regimen respond in the first week to 10 days and nearly all have responded by the 30 day mark.

We've also discovered that allergic reactions and infections can delay a favorable response.  Fortunately, there are ways to address these spoilers...

I also suggest ECHers stay on this regimen year round...  The other health benefits are hard to argue... Doing this also avoids a lot of needless pain when the next cycle comes around.  All you need to do is ask yourself...  Do I feel lucky... or is 50 cents a day a great price for excellent health and no worry about CH...

When you've completed the vitamin D3 loading schedule, stay on the maintenance dose of 10,000 IU/day for at least a month to let your 25(OH)D serum concentration response reach an equilibrium then go in for labs of your serum 25(OH)D, total calcium and Parathyroid Hormone (PTH). 

Once you have the results in hand, please take the online survey of CHers taking this regimen to prevent their CH.  The link to this survey is on page 1 of the following link:

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Neurologists and headache specialists who are skeptical of the anti-inflammatory regimen, always look for medical evidence of efficacy and safety in any new treatment.  Your survey will help build the needed body of medical evidence.

Take care and please keep us posted.

V/R, Batch

Been trying to post here......IT wasn't working for some reason.
So, Since I started posting in this thread and took the D3 I have been completely PF for several weeks now. It's been working excellent. I did have a few times where I felt some sort of high for an hour or 2. I think I saw someone else post about that too. Nothing real bad but it was weird.

R2D1,

Glad to hear the anti-inflammatory regimen is still doing its thing to keep you CH pain free.  You need to consider this regimen a way of life like many of us and continue to take it daily. 

The health benefits over and above preventing your CH are hard to argue...  I have my entire family and close friends taking this regimen and none of them have CH.  That includes my two and a half year old granddaughter Fred, a.k.a., Winefred and Thumper, the bump on my daughter's belly. 

I have a theory on the "High" sensation you experienced that goes something like the following.  Our bodies are genetically tuned to consume vitamin D3 to keep everything functioning properly...  When sufficient vitamin D3 is available to meet all of our physiological needs, we build a reserve of both the parent vitamin D3 and the first metabolite, 25(OH)D.

As CHers we still get a triggering pulse to start a CH, but vitamin D3 down-regulates/suppresses CGRP, Substance P and likely other neuroinflammatory agents that also cause the pain we know as CH. 

Although vitamin D3 interrupts the CH triggering process so we don't experience the actual CH, parts of the brain including the hypothalamus sense the CH triggering pulse so are still expecting a painful attack. In preparation for that attack, they signal the pituitary gland and it starts producing endorphins, the body's "endogenous morphine" to help dull the CH pain.

Soooo... you're actually experiencing a endorphin high much the same as the runner's high experienced by runners who have just completed their daily run of 3 to 5 miles or more. 

You're also likely getting a additional shot of dopamine, the "feel good" neurotransmitter that plays a major role in reward-motivated behavior to reinforce whatever activity induced the endorphin high.

Hope this helps.

Take care and please keep us posted.

V/R, Batch