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Marc CH.com Old Timer Offline Posts: 429 TX Gender:	Re: gosh Reply #25 - Mar 8^th, 2016 at 7:45pm Not4Hire wrote on Mar 8^th, 2016 at 7:31pm: Now I'm offended. Just as there's no "me" in TEAM, there's no "U" in behavior... just sayin'... LOL ..... and I say that because I've watched you go toe-to-toe with. Hoping all is well with you and yours, Sir. Marc
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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: gosh
Reply #26 - Mar 8^th, 2016 at 9:37pm

Hoppy wrote on Mar 8^th, 2016 at 5:22am:

I'm talking about newbies, the ones that may have been offended by a first comment to their post, but have stuck around to make a point, and then leave, but I can't recall any that have just left on the first comment made. Maybe you can find me a post where this has happened.

Looking at the forum member list, the people with one post starts at this page:

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

or

It goes to this page:

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

or

So that is about 1550(ish) people who have made just one post.

From there to get to the end of people who have registered with zero posts:

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

or

So that is about 2150 people with zero posts.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: gosh Reply #27 - Mar 9^th, 2016 at 1:15am Hoppy Hoppy wrote, Brian, I've lost count on how many one post newbies I've replied to over the years "With a warm welcome and a positive reply" only, never to be seen or heard of again, and in the same period of time, I could count on one hand, the newbies that have been offended by a comment from one member or another.
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: gosh Reply #28 - Mar 9^th, 2016 at 10:24am
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lancashire Lad

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Posts: 93

Re: gosh
Reply #29 - Mar 9^th, 2016 at 11:42am

There are a few individuals who come to this site for R&R purposes and being horrible to someone who is suffering and looking for answers or offering advice of what has helped them, and by being horrible makes them feel better about themselves, these people are very definitely sick.

And then there are the D3 defenders who say high doses won't do you any harm. Really?

And if D3 in massive doses doesn't work then top up with antihistamine because histamine depletes D3! Really?

Both Histamine and D3 occurs naturally but in high levels they cause problems.

D3 helps the elasticity of blood vessels and is an anti-inflammatory (but does lots of other stuff). Antihistamine is a vasoconstrictor (but does lots of other stuff)

Most CH remedies work on reducing the size of blood vessels and /or making them more elastic. Vasoconstriction can cause a rise in BP so a trade off is required,
There are lots of substances that do this; BP meds (increasing elasticity), oxygen, anti-seizure meds, nerve blockers (by blocking the signals that dilate vessels), NSAIDS, mushrooms, “recreational” drugs etc etc incl. D3 and antihistamine each have risks associated with them.

The human body is an individual chemistry set, some people can tolerate this but not that and getting the right treatment for CH is often a trial and error process. A few lucky people get their special cure at first ask from their GP, most do not and go looking it and that's what brings most people here.

If sniffing an essential oil, smoking something, chomping on mushrooms, taking massive amounts of D3 and antihistamine do it for you (AND YOU ARE AWARE OF THE RISKS) then good for you.

But there are two common responses on here that you should ignore 1) abuse, which you should report and 2) advice that large intake of D3 carries no risks.

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Potter

Ex Member

Re: gosh
Reply #30 - Mar 9^th, 2016 at 1:25pm

Marc wrote on Mar 7^th, 2016 at 8:03pm:

Joshua wrote on Mar 7^th, 2016 at 5:55pm:

Wow. Just wow. That throwback to 2010 post made my day.

I'm looking for the special spot I can rub, where it just clicks. Cheesy

Be very careful...... you might hurt someone's feelings.

We get posters that are convinced that they have found their cure for Cluster Headaches, so let us respect that and rejoice in their pain free lives. Then let us help to spread the word, so others can suffer needlessly.

Sure, people have left here because they didn't feel warm and fuzzy. But, how many other sufferers have endured horrid countless hours of sheer agony while they held out hope for Boji Stones - or some other equally valuable remedies?

There are reasons that some folks react strongly to some posts. I can assure you that it is not rooted in cruelty or some perverted badge of honor as some folks have intimated.

Marc

What he said^^^^

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: gosh Reply #31 - Mar 9^th, 2016 at 4:21pm Peter, Here and in the UK you can only get vitamin D-3 in 1000iu soft gels, but in the US you can get them in 5000iu and 10000iu. So, I think the jury is still out on this one. Hoppy
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lancashire Lad

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Re: gosh
Reply #32 - Mar 9^th, 2016 at 5:07pm

Hoppy

I agree with you 100%

As you know I have a problem with experts who take an approach on CH that I wholeheartedly disagree with (by experts I mean Sjaarstad and Goadsby not the barrack room medics)

The science is not clear, until it is (if it is) a definitive picture is just hooey, anyone who abuses a sufferer for stating that something has worked for them or tell a sufferer that “this” will probably work with no side effects; belong in the barrack room, not even the officers mess.

You have offered extremely good advice which I hold very special, not everyone has your compassion, wisdom, constrained ego and the eloquence that you (sometimes) exude. Those others can be up to mischief to salve their own egos, talking pigshit because they don't know any better or are deluded.

Until there is a usefulness marker against members contributions then the arseholes need to be kept on a short leash.

All the best my friend

Peter

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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: gosh Reply #33 - Mar 9^th, 2016 at 5:11pm Not4Hire wrote on Mar 8^th, 2016 at 7:31pm: Now I'm offended. Just as there's no "me" in TEAM, there's no "U" in behavior... just sayin'... Every Good Boy Deserves Favour..............
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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: gosh Reply #34 - Mar 10^th, 2016 at 7:39am Where's Hub when you need him!
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BarbaraD

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Hugs to ya

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Douglasville, TX
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Re: gosh
Reply #35 - Mar 10^th, 2016 at 3:51pm

Bob P wrote on Mar 10^th, 2016 at 7:39am:

Where's Hub when you need him!

Ok, I'm gonna say my say here... Some of us have been around here since the beginning of this site and have seen all sorts of things posted - most turned out not to work.. but we tried them BECAUSE we HURT and were trying to find something to stop the pain.

Over the years research has been done and today we have a wealth of medical info here (more than most medical schools do on CH).

But one thing we found out years and years ago - NOTHING works for EVERYONE... I'm a D3 supporter because I've been PF for over 2 years since beginning it.. that's after almost 20 years of being chronic and trying about everything else. So if there's side effects - so be it - I'm not in pain and right now that's what counts..

Back in the early days we didn't know about high liter O2 worked better than most other things, but by research from several people on here we now know that. The Demand Valve was "invented" by a couple of guys on this site. That was a lifesaver for a lot of us.

The meds that we sometimes say work for "us" are not meant to tell people that they're the ONLY thing that works - just that this is an option - ask your doctor about it.

We're a SUPPORT SITE - when someone comes here asking for help we've ALWAYS tried to HELP. But we're all different and have different ways of expressing that help..

Sometimes, instead of being offended, you just need to take a deep breath and take the "advice" as it's meant - to be helpful.

BUT over the years WE have done a lot of good for a lot of people who needed support and I don't know of any OLD TIMER on here who will apologize for that.

So as my dear old dad always said - If you ain't tried it don't knock it.. Kiss

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What don't kill ya, Makes ya stronger!

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: gosh Reply #36 - Mar 10^th, 2016 at 4:48pm Very well said Barbara.
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: gosh Reply #37 - Mar 10^th, 2016 at 5:36pm Hey Barbara, thanks for your great post. Judging by the huge number of posts under your belt, i'd say you offered support and helped an equally large amount of people. All the best to you and yours.
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Mike NZ

CH.com Hall of Famer

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Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: gosh
Reply #38 - Mar 11^th, 2016 at 12:32am

thierry wrote on Mar 10^th, 2016 at 5:36pm:

Hey Barbara,
thanks for your great post.
Judging by the huge number of posts under your belt, i'd say you offered support and helped an equally large amount of people.

Going off the posts Barbara has written over the years she has certainly provided a lot of help and support to a lot of people. Thank you Barbara.

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