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  ". I remember posting on here how  by taking one little pill before going to bed could help get some  and I thought I had started WW111 with the replies that came flying back, but being thick skinned didn't bother me  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  .

All the best, Hoppy

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

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.

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

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


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…….


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

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

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



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

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


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.

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

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:

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

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.

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

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.

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

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

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

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.

Annubis wrote:

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

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

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.

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

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

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

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" 

Hoppy

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