I don't know why I can't reply to the thread, and I may be creating more of a problem than I'm helping, but I hope not.

Everyone put your anger/self-righteousness aside for a few moments and let's think this through.

Potter's reaction was, as he says, succinct, as are all of his posts. Being an old-timer like Potter, and having seen so very many Chiropractors come on the board and make outrageous claims (and blatant advertisments) he reacted to Lauralynn's comment about being a Chiro and reacted. I fully understand his reaction, and had a very similar one on first reading of the post.

However, on second reading of the post, I looked up Carrick Brain Institute and found out they are board certified Neurologists, not just Chiropractors.  I will be doing more reading about them and their practices, for I see a number of areas I know some people could benefit from probably. CH? I honestly doubt it, but we also pooh-poohed Vit D and shrooms in the beginning, too.  Regular Chiropractic treatments I already know will do nothing for CH from much experience and from others' experience

Laurelyn frankly left me puzzled in a number of areas, and that can only be because she only posted once, and there was not room enough to answer all of those areas in that post. I'm frankly not sure her husband actually has CH or if he has bad HA's caused by another brain malfunction that are similar. NOTE: I did NOT say I don't think he does have CH. I said, "I'm not sure." The post did not go into enough detail to be certain.

The patients refusal to try O2 confuses me, and that refusal causes me to doubt CH. The ONLY things I have refused to try in the last 45 years are things that I KNOW are not in my best interest because of side-effects/allergies, etc. Oxygen has none of those for anyone.

Please let me address Potter and his posts:
I've known Potter for a long time, and I don't have to go back into the archives to know how much help he has been to a number of people over the years. He does, and has done a lot of behind the scenes things for other clusterheads most know nothing about either. OUCH gave him an award a number of years ago for his Oxygen advocacy, and it was well deserved.

Potter has a well deserved reputation for his "succinct" posts, which often are misconstrued as a personal attack on a poster. Unfortunately, all we see here are dots on a phosphor screen that don't convey body language, voice inflection, or any of a number of other non-verbal communications.

Let me suggest next time you take knee-jerk offense at one of his "succinct" posts you bother to post a question asking him "Why?" or "What do you mean by that?" instead of attacking him in return you will actually learn something. If you were responding with one hand typing on a phone, your responses would probably be succinct, too.

I often wish Potter would not be as succinct when he posts for that very reason, but I have the advantage of having known him for long enough to look past it and understand the man. He does not tolerate those he believes to be scamming the CH community or those who are pushing non-effective remedies on newbies who are desperate for help, and I appreciate that fully. I know I could not find a better friend, or another who would do what I know he has done for quite a number of clusterheads who needed help.

Is he always right? Nope. But then, who among us has never posted something after misreading a post that we wish later we could take back?

Laurelyn, I do hope you will post again. There is no greater compendium of CH knowledge than is on this board. Please let us help you and you husband.

I can still see no excuse for abusing or swearing at first-time posters.

Ditto...

I'm still under the impression the post was all about
promoting chiropractors, and I for one know it doesn't
work when it comes down to treating CH's. So, Potter
being Potter, spotted this straight away, and reacted, shooting straight from the hip, which has alerted me
on more than one occasion, when something is not right.

Hoppy

Well, I try to circumvent censorship by posting here.  :-(

I'm flabbergasted at the simple minded people that have come to this board in the last couple years. They don't recognize spam posts advertizing junk science "cures". Instead, they start slamming Potter, one of the few trying to debunk fraudulent hypes.

People, you have a computer in front of your nose! Start to use it. Here a few simple hints:

In this forum you can click on an user name and its profile will pop up. As an example START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and you'll see that our good Laurelyn DC signed off 1 second after posting her spam and newer came back in 25 days. Of course, AussieBrian, it was her only post, because she wanted to post her add and is not interested in any replies.

In her only post our good Doctor talked about "functional neurology", a term that rung an alarm bell in my head. So I put that into Google and already the 2nd hit gave some START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Quote: Functional neurology ... is able to treat a multitude of conditions (e.g. ADHD, Alzheimer's, Asperger's, and Autism, just among those diseases starting with A). (... and of course, under C also Cluster). Decide for yourself if such a cure-all treatment is trustworthy.

Then I wondered if Laurelyn DC is known to Google. She is. In her profile of the first hit at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE you'll learn that she also is adept in Cranial Sacral therapy. There is some interesting reading about this art on my favorite quack busting site START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

So Ricardo, Peter510, thierry, instead of slamming our best watchdog, start scrutinizing those dubious claims or you'll end up with spending not only your money but also your health on quackery.


[smiley=smokin.gif]      Ueli

AlienSpaceGuy wrote on Jul 1^st, 2015 at 11:07pm:

I'm flabbergasted at the simple minded people that have come to this board in the last couple years.

Quite obviously I'm one of those simple-minded people, so forgive my naivety in believing that every first-time poster either lives with this nightmare or supports one of our mates.

My simple-mindedness allows me to support every first-time poster unless they prove themselves otherwise.

My obvious lack of brains means I can offer a helping hand, rather than a punch in the face.

I'm a CHead, so forgive my stupidity in trying to help others access the world of information and advice that is ch.com.

Just call me dopey,

Brian who cares.

AlienSpaceGuy wrote on Jul 1^st, 2015 at 11:07pm:

Well, I try to circumvent censorship by posting here.  :-( I'm flabbergasted at the simple minded people that have come to this board in the last couple years. They don't recognize spam posts advertizing junk science "cures". Instead, they start slamming Potter, one of the few trying to debunk fraudulent hypes. People, you have a computer in front of your nose! Start to use it. Here a few simple hints: In this forum you can click on an user name and its profile will pop up. As an example START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and you'll see that our good Laurelyn DC signed off 1 second after posting her spam and newer came back in 25 days. Of course, AussieBrian, it was her only post, because she wanted to post her add and is not interested in any replies. In her only post our good Doctor talked about "functional neurology", a term that rung an alarm bell in my head. So I put that into Google and already the 2nd hit gave some START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Quote: Functional neurology ... is able to treat a multitude of conditions (e.g. ADHD, Alzheimer's, Asperger's, and Autism, just among those diseases starting with A). (... and of course, under C also Cluster). Decide for yourself if such a cure-all treatment is trustworthy. Then I wondered if Laurelyn DC is known to Google. She is. In her profile of the first hit at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE you'll learn that she also is adept in Cranial Sacral therapy. There is some interesting reading about this art on my favorite quack busting site START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. So Ricardo, Peter510, thierry, instead of slamming our best watchdog, start scrutinizing those dubious claims or you'll end up with spending not only your money but also your health on quackery. [smiley=smokin.gif]      Ueli

that was one of the most condescending posts I have ever read !
I to am a simple minded person, with CH
to think, on this forum we have those that ascend to a higher plain !
Oh how great it is to be the decider, judge and jury on those deemed as spam etc.
How many people have complained, that are still members here but have been judged upon their first ever post ? and commented on there treatment when they first arrived ?
I hate spammers or non genuine posters pushing there wares on this sight, its frustrating !
I too laugh at the suttelness of some of potters posts ! some are hilarious.
but don't you come on here spaceman and preach your self appointed power to decide, crucify and command judgement on those that only wish to offer support and help for people in need of it, As I again stress, that has happened to some first time posters because they've been previously feed false information for there condition !
  You walk a fine line
perhaps there's another forum us simpletons can migrate too to help your ego !
I and probably most others do NOT need your so called protection from shonks or spam artists !!
Brian, I commend you on bringing this whole issue to the fore, and I do notice that its the likes of Brian and the others you name that are more than often the ones that give the first hand support for first time posters !
I have used the so called search button here ( amazing for a simpleton), and you spaceman pretty well offer nothing to new comers seeking advice !!  pretty rich !
why the need arrives to even address obvious spam unless the poster repeat posts is beyond me, ignoring the post is the best approach, then, just maybe, another first time ch poster, isn't mistakenly abused by those on a higher plane,
just my view
colin

Laurelyn wrote, I am a Chiropractor, I dragged him around to all kinds of body workers, nothing nothing.
Last resort (which should have been first but the place wasn't built yet)
Carrick Brain Institute. A Chiropractic Functional Neurology Center. There is one here in Marietta, GA, and one in Dallas,

[smiley=duh.gif] [smiley=thumbdown.gif]

Hoppy

forum never changes..............smh


Considering there is no known cause or cure  for CH, I am always intrigued by new ideas.  Was she genuine ?   I don't know.   Never got a chance to find out......   

Well said and put Callico! Thumbs up Potter! I get you!

DK

JHK07 wrote on Jul 2^nd, 2015 at 10:31am:

forum never changes..............smh Considering there is no known cause or cure  for CH, I am always intrigued by new ideas.  Was she genuine ?   I don't know.   Never got a chance to find out......

Ditto...

Thanks, Ueli!

The reason you never heard anything more from Laurelyn was NOT because of Potter's post. She posted her advertisement and closed out her account before Potter in his "succinct" manner replied.

BTW, to those who have been around here less than five or ten years, Ueli is one of the originals on this board, and he HAS done a lot to help newbies as well as others. He doesn't post as much any more, but when he does it is specific and researched. He is one of the best scientific minds on this board, and he is one I listen to when he speaks. Always agree? No, because often his posts are more scientifically versed than I can understand. Sometimes we differ on our take on things, but he is definitely someone you should pay attention to.

Brian, I know you are one of the first to reach out and care for new people. I really appreciate that characteristic. Please don't quit! As it says in "The Rose" "It's the one who won't be taken, who cannot learn to give." Keep that open heart, but also give a little space for the "sheepdogs" who watch out for us like Potter and Ueli. There is a need for both the gentle nurturing and the scathing rebuke.

Jerry

Callico wrote, The reason you never heard anything more from Laurelyn was NOT because of Potter's post. She posted her advertisement and closed out her account before Potter in his "succinct" manner replied.

She's still a member.

Hoppy

Jerry......she is still a member. That was her only post though. So far.

An open post to Potter.

Potter,

In my last post on this subject I expressed a view on your manners and maturity.

I hope you accept my apology for the comment on "maturity". Upon reflection I feel I overstepped the mark. I don't know you and therefore I have no right to make such a remark.

I was going to send you a PM but as I made the comment in open forum, I feel I should retract it openly also.

Whether Lauralyn was genuine or not is still not certain and I suspect, at this stage, we'll never know for certain.

However, my beef was with the manner in which you shot her down.

I like nothing more than a good debate on any subject, but comment and opinion has to be supported by reasoned argument. In my view a single word (bad language or otherwise) does not constitute a reasoned argument.

If Lauralyn is, as you suggest, a scammer, it would have become obvious pretty quickly anyway.

So that's my only beef. Judging by the level of support you get here you have been much valued over the years and I don't doubt your intentions. I just feel that your points could be of much greater benefit if they were expressed differently.

I'm sure my view of your posting style is of no importance to you and why should it be.

Anyway, I hope you take this post in the spirit in which it is intended.

Regards,

Peter.

I reached out to Lauralyn in a PM and she has yet to respond to me.

Mark

Did "poo-pooing" on posts about using shrooms , 02  , and D3 run batch and pinksharkmark off of this forum? NO! instead they stuck to their guns and refined their ideas and helped nearly everyone who has been on this message board and in doing so they became legendary here. When lauerlyn said that rotating 360 degrees to the left while staring at lights or dots retrains the two hemispheres of the brain to work together and properly interpret pain signals , I thought she was making outrageous claims about fixing the most complex part of the human anatomy. It doesn't sound cost effective versus D3 , 02 or busting. If there is any merit to her post then it would be logical to assume that a single word response to her post would prevent her from further explanation, unless of course that one word was spot on. A lot of what she said just didn't jive, vague descriptions of solutions to complex matters.

I reckon life is pretty simple.

There are those who think it perfectly acceptable to abuse and swear at first-time posters, then there's people like myself who are here to help others who are dealing with a terrible condition.

Certainly we get the occasional troll and spammer but diagnosing that in one post? If you're really so concerned, touch the 'moderator' button.

So often I've seen people attacked for using the word 'cure' not knowing it's forbidden here. Saying their pain is chronic, meaning terrible, not knowing that within these hallowed halls it can refer only to its medical definition.

Newcomers have been pilloried for saying a personal trick is to pretend in their mind that they're really lying on a beautiful beach in a string bikini (in my mind I go to a special waterfall) while others have suggested such madness as magic mushrooms and vitamin D and been howled down. They've rarely posted here since.

Equally we've seen others on disastrous paths, believing their way to be the only way, and been able to steer them towards less treacherous waters.

As you mention, Callico, I reach out to those who are new to our nightmare, new to ch.com, and I'll continue to do so. If only to protect them from those who feel it their right to abuse and swear at first-time posters.

I'm here to help.

I'm calling the pizza dude!

BTW - O2 was around long before Batch and Flash brought the psychedelics to the MB.

I was offered 02 by my neuro back in 1988.

Hoppy

Batch deserves kudos for his work in refining the use of O2 and improving availability.

Thanks Batch! (you old fart)

AussieBrian wrote on Jul 1^st, 2015 at 6:00pm:

I can still see no excuse for abusing or swearing at first-time posters.

Exactly.


Hoppy wrote on Jul 1^st, 2015 at 8:09pm:

I'm still under the impression the post was all about promoting chiropractors, and I for one know it doesn't work when it comes down to treating CH's. Hoppy

Correction--You know that you have tried chiropractic treatment and that it did not work for you.  Seeing as how we do not know what causes cluster headache, and that all sorts of people react different ways to different treatments, we can not say that chiropractic work is not going to help someone until we have a study that has investigated it. 

If I used that kind of logic I could say that I have tried testosterone and it did not work so it doesn't work for clusters.  I could say that melatonin triggers clusters because mine get triggered by it, but most of us know that it is a viable option for some.


AlienSpaceGuy wrote on Jul 1^st, 2015 at 11:07pm:

I'm flabbergasted at the simple minded people that have come to this board in the last couple years.      Ueli

I think you are confusing "simple minded people" with "open minded people that are willing to hear someone out before delving into arrogant behavior where they claim they know all the answers"

I too, am very doubtful about larellyn's post and the effectiveness of her treatment.  I am not arrogant enough however to think that the ideas I have are automatically correct.  I know that if I want to find the answers to this bitch of a disease I have to keep an open mind to all possibilities.  The thing I don't get is "why is it so hard for people to understand this?"  When people started talking about clusterbusting, we got the same response.  When people came talking about ketamine, we got the same response, when I talked about peppermint oil and when people talked about cannabis being effective, we got the same response.  People making fun of people, acting like they are idiots or charlatans when they have no idea of the truth of the situation. We can keep up the same behavior over and over again and throw away potential treatments until enough of the "simple minded" people say "you know what, even though all the trash talkers tried to convince us that the answers they have are the only ones worth listening to, I listened to the crazy people and treated my clusters effectively.  Then the rest of the people that have talked trash to the open minded people can get the benefit of new therapies and find other new ideas and new posters to take their shit out on.  I get the feeling some people are more intent on schooling people and feeling superior, acting like arrogant know it all's than actually helping people.

Truthfully, I think that one of the biggest points to be made is that in this post here, there is just about half the people saying "good job at talking to trash to that poster" and the other half are saying "I wish that you had not done that as there is the possibility that is could have been helpful info.  We will never know because it seems like she was chased off the board."  The people that think "good job" take it upon themselves to make decisions for the rest of us.  The people that want more info (and it seems there are plenty) can not get it because of rude, arrogant, demeaning and dismissive behavior. 


wrote on Jul 2^nd, 2015 at 6:06am:

I and probably most others do NOT need your so called protection from shonks or spam artists !!

Quite true.


AlienSpaceGuy wrote on Jul 1^st, 2015 at 11:07pm:

They don't recognize spam posts advertizing junk science "cures". Instead, they start slamming Potter, one of the few trying to debunk fraudulent hypes. [smiley=smokin.gif]      Ueli

The way to scientifically debunk fraudulent claims is by asking questions and posting info on the proof that these are fraudulent claims.  NOT by talking trash to people with absolutely no proof or explanation of what you are talking about. This is how the scientific method works and simple minded people are hardly ever the people that go with that, quite the opposite.  Simple minded people act like arrogant know it all's.  Simple minded people dismiss ideas without any evidence to back it up. 

-Ricardo

Ricardo wrote, Correction--You know that you have tried chiropractic treatment and that it did not work for you.  Seeing as how we do not know what causes cluster headache, and that all sorts of people react different ways to different treatments, we can not say that chiropractic work is not going to help someone until we have a study that has investigated it.

From what I've read over the years! The only headache
types that can be helped by a chiropractor are those caused by a neck problem, or a neck injury, I'm yet to     read of one where it helped in CH's. It may help in some
of the headache types that mimic CH's. But, it will not, I
say again, will not fix a CH in a million years. 

I get at least some relief from having my neck professionally massaged. It seems to take a lot of pressure off the old cluster bump.

Having a neck massage isn't the same as being
manipulated by a chiropractor.

Please don't tell my chiropractor that.

The only thing I got from seeing a chiropractor was a
torn muscle in my shoulder, which needed physiotherapy.
From a physiotherapist.

I'm sorry your chiropractic experience wasn't a happy one, Hoppy, but that doesn't mean all chiropractors are bad and have no place within the CH community.

To be abused, accused and  sworn at over a first post, but let's be honest.

This isn't just about Lauralyn.

This is about everyone's right to come here as a CHead, or a Supporter, and not be driven away because of a word or opinion that our old-timers say is forbidden.

Let's presume for a moment that Lauralyn's first post really is true, then the CHead she's supporting is in desperate need of serious help and that's the sort of help we are here to offer - if only to protect a fellow sufferer from 'cures' such as hers.

I'll keep hugging the newbies. The bad ones quickly show themselves up and are easily dealt with by Admin, but I believe everyone who comes here is either seeking help or needs it.

We have so much to offer. So many ways to help others who must endure this nightmare.

My name is Brian. I'm a ClusterHead. I'm here to help.

Brian, I fully understand where your coming from, and
agree totally, but I still feel it wasn't the case here.
"Seeking help for her partner", but more about advertising the business where according to her, "helped him find some
relief with his CH's".

Laurelyn wrote, I wanted to share a way to deal with clusters that is rather new.  My man had the clusters almost every night for 4 years. As you already know, nothing really helps(he wouldn't try oxygen)
I am a Chiropractor, I dragged him around to all kinds of body workers, nothing nothing.
Last resort (which should have been first but the place wasn't built yet)
Carrick Brain Institute. A Chiropractic Functional Neurology Center. There is one here in Marietta, GA, and one in Dallas, TX.

Hoppy

Chiropractics have their place. My husband sees a brilliant one who has kept him on his feet for years.  However............

nothing really helps (he wouldn't try oxygen) That's the bit that gets me !!  We all know there is plenty that helps and for most of us 02 is our number one "go to". If you are just plain unwilling to use the most tried and trusted methods of relief then the only answer is to carry on living with the pain - your choice.

I think that anyone who refuses to even try 02, doesn't have clusters at all. No one with a kip 10 would refuse ANYTHING. Especially something which has been proven by medical science,100% natural and recommended by so many others.

While I don't think it right that new posters (or any poster for that matter) should be sworn at and chased from the boards, I feel this couple were not trying very hard to find a solution. If the man prefers to be "dragged round" all over the place whilst in severe pain instead of breathing a few puffs of 02 then let him get on with it.

I think Potter was rude......but he has a valid point.

I am indebted to this forum and a couple of posters who helped me when I needed help most. Thank you.

I came here knowing nothing of my problem (multiple HA syndrome) and after much research now know a little. What I know compares as an ant hill to the mountain that I do not know and indeed no one will have the answers in my life time, the brain, cns and body mechanics, biology, chemistry and electronics and their interactions are far too complex for us earthlings to comprehend.

But I did learn a thing or two;

The neck is involved in every single CH attack there has ever been. Via the brain stem. The brain stem either in a primary role as pain processor or in a secondary role as processing loop filter is involved in all pain processing. If the brain stem in impacted in some way it can play up.

And there are the primary / secondary words that are so un-useful in CH understanding. Primary in this case means the experts don’t know what the cause is and secondary means they think they MIGHT know. The fact is the experts don't know.

That doesn't mean there isn't a cause or probably more correctly multiple causes, that is self evident but it also means that to say there isn't a cure is equally wrong. And before we get into semantics "no known cure" in this case, I take as meaning "no cure"

So when a CH head gets a high velocity manipulation from a chiro and never has a CH again, that's a cure.

Because there are so many CH pain relief techniques / therapies / medications that work for some people and not others I think it likely that the common result of a the experience of CH may not have common roots, that is to say CH most likely can be manifested by various and differing (in different people) factors, that is also to say there is no single or single set of contributors.

My last point may get me some boos but hey! CH can and does send you nuts. Sufferers get precious / protective over the very term, somehow resentful of "outsiders".

Its understandable. You find a mix of personalities in any work place, bar, club any social / formal gathering. Internet forums attract a more introspective type and introspective CHers are always going to be challenging.

If you can't say what's causing a problem you can't say what wont cure it.

Quote:

The way to scientifically debunk fraudulent claims is by asking questions and posting info on the proof that these are fraudulent claims.  NOT by talking trash to people with absolutely no proof or explanation of what you are talking about. This is how the scientific method works and simple minded people are hardly ever the people that go with that, quite the opposite

If you knew Ueli you'ld see the humor in this.  I can't believe the old fart is still around!  Hi Ueli.

Hoppy wrote on Jul 6^th, 2015 at 6:50pm:

From what I've read over the years! The only headache types that can be helped by a chiropractor are those caused by a neck problem, or a neck injury, I'm yet to     read of one where it helped in CH's. It may help in some of the headache types that mimic CH's. But, it will not, I say again, will not fix a CH in a million years.

Until you show a study that has been done showing that chiropractic work does not do anything good for cluster, all you have is an opinion, not a fact.  I am extremely doubtful that cluster is going to respond in a positive way to chiropractic care, but again--I am not arrogant enough to think that my OPINION is automatically correct.  I have no idea why this idea is so hard for people to grasp.  You can look up opinion and you can look up fact in a dictionary and see where what you are saying fits.


wrote on Jul 3^rd, 2015 at 4:31am:

Did "poo-pooing" on posts about using shrooms , 02  , and D3 run batch and pinksharkmark off of this forum? NO!

Yee friggin haw.  We talked trash to people and at least 3 or 4 of them did not leave.  How many did?  We will never know.  BECAUSE THEY ARE GONE.

-Ricardo

AussieBrian wrote on Jul 7^th, 2015 at 1:27am:

This isn't just about Lauralyn. This is about everyone's right to come here as a CHead, or a Supporter, and not be driven away because of a word or opinion that our old-timers say is forbidden.

This is about as true as it gets.  On our opening page it says

"Our site can be a tumultuous, fast-moving, contentious world at times, but first and foremost, it is the most caring, compassionate, supportive family of cluster headache sufferers (and their supporters) in the world."

Ask yourself--does the way Potter act around here fit into this?  If someone can explain to me how telling someone after their first post that they are bullshit goes along with compassion or being supportive please do. 



AussieBrian wrote on Jul 7^th, 2015 at 1:27am:

Let's presume for a moment that Lauralyn's first post really is true, then the CHead she's supporting is in desperate need of serious help and that's the sort of help we are here to offer - if only to protect a fellow sufferer from 'cures' such as hers.

Here's another scenario--what if she just doesn't know what the hell is going on.  What if her husband has clusters and he went to a chiropractor.  We have seen numerous times where someone says "holy crap my clusters got cure by this"  and then they (and we) find out that, no they didn't.  Clusters can come and go, and it can be tempting to say "this is why" but it can often be a coincindence.  If this happens is it OK to tell them they are bullshit and act like an arrogant, dismisive jerk?  I don't think so.


Bob P wrote on Jul 7^th, 2015 at 7:27am:

Quote: If you knew Ueli you'ld see the humor in this.

I highly doubt it.  He called a number of people on our forum simple minded because they don't want people to be jerks and actually want to give someone the benefit of the doubt before telling them they are bullshit.  I don't care who you are, if you are going to behave like that I will not find your behavior humorous. 

I've had chronic daily cluster headaches for close to 20 years now.  I have no patience for people that are going to decide for the group that they have the answers and that it is completely ok to talk trash and chase people off the board because they know better than anyone else.

If the arrogant people claiming to know all this info started being a little nicer and stopped trying to save all us simple minded people , it sure would be appreciated.

-Ricardo

Here's my play on all this
I keep hearing about how good a person so in so is and the good work so an so has done, or we don't understand So in So's humour !!
Well, Bollocks to that !
If Me as a member here for a couple of years doesn't know, then how in the Hell is a first time poster expected to know !!   its that simple !
I pretty well agree with all of what Lancashire had to put forward, there is sometimes some preciousness about us sometimes, like any workplace.
Also, I firmly believe as he stated, that perhaps there are a multitude of triggers which set off a cluster attack, for some it may be as simple as alcohol, inflammation of the area seems to come hand in hand, so therefore some may indeed have a cluster attack from a neck complaint, Its not the cause, but maybe purely a trigger of sorts. I think what I've learnt since being on here, is everyone has a completely different story to go with their cluster disease. What works for some, doesn't for others. I mean why have 60 plus percent of sufferers gone completely pain free on the vit D regime, and another 25% with reduced symptoms ( sorry Lancashire  ;D ) and some that have no response,  why do little idiosyncrasies work for some and not others ?  Its quite ironic when you think about it !  I think until a definitive diagnosis, of the true cause comes to light, we must accept that some remedies or treatments may indeed work for some people ! Nothing should be totally discredited, if even a small percentage of sufferers get relief.
I think this is where some of the " arrogance" and intolerance come in to play, Not accepting that EVERYONE is different, what works for me, doesn't necessarily work for someone else. Because we have no factual scientific or definitive evidence of cause or cure ! That sure does open the door for the more forcefull personalities to take it upon themselves to be the judge jury and executioner !!!!
I liked how Brian signed off
" my name is Brian, I'm a Clusterhead, I'm here to help !
   we should all aspire to that
Failing all this, Grated ginger, 1/2 a lemon and a spoon full of honey in hot water !   is Dr Hoppy's sure bet remedy to ward off shadows !      it worked for me !
This forum has been a godsend for me, I've learnt so much, Its helped me to firstly accept this horrible disease, and know that I'm not alone. And on top off this, I've met some great people............
My name is colin I'm a clusterhead  and I need all the help I can get !! ;D
cheers
colin

Laurelyn DC
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She's been here for a month now and hasn't come back Which means all of the responses to her original bullshit post are immaterial.  Kinda like if a tree falls in the woods thing.

            Potter



     

You are probably right on that score Potter !
However,

" all of the responses to her original post are immaterial"
" Kinda like if a tree falls in the woods thing"

Well, another immaterial post suggest that you simply don't get it Potter !
     The tree never fell, maybe an axe was used,  who truly knows ?
all the best
colin

wrote on Jul 7^th, 2015 at 10:19am:

You are probably right on that score Potter ! However, " all of the responses to her original post are immaterial" " Kinda like if a tree falls in the woods thing" Well, another immaterial post suggest that you simply don't get it Potter !      The tree never fell, maybe an axe was used,  who truly knows ? all the best colin

  I do believe It's   "If a tree falls in the woods and there's no one around to hear it does it make a sound?"  Much ado about nothing.

                Potter

Bottom line, This forum can be a great place to READ and pick up some useful information.   Unfortunately it will never be a place to socially gather/ debate talk about stuff/ topics  like other forums as long as the succinct self righteous _______s continue (and they will) to run NOOBS away.    

If a man goes out into the desert where no woman can possibly hear him, and speaks,  Is he still wrong ? lol  ;D ;D ;D

maz wrote on Jul 7^th, 2015 at 1:41pm:

If a man goes out into the desert where no woman can possibly hear him, and speaks,  Is he still wrong ? lol  ;D ;D ;D

But of course! Cause women are from Venus and Men are from Mars... :D ;D ;)

"It's not sorted until it's sorted" Kipling.

Hoppy

Quote:

I highly doubt it.

I just mean the irony of teaching scientific method to a nuclear physicist.

wrote on Jul 7^th, 2015 at 9:49am:

She's been here for a month now and hasn't come back Which means all of the responses to her original bullshit post are immaterial.  Kinda like if a tree falls in the woods thing.             Potter

That's not true.

           Brian.

wish she had come back as id of liked an answer to my query,which is i have a false eye on my ch side so what eye exercises do you think they wud recommend ;D

Well said Jerry!!!

Bob P wrote on Jul 7^th, 2015 at 6:35pm:

Quote: I highly doubt it. I just mean the irony of teaching scientific method to a nuclear physicist.

Brilliant!!!
Hi Bob!
Hi Ueli!!

Seeking empirical data on a pseudoscience is quite amusing!!
Just saying!!
Do people feel better after going to them? Sure they do BUT they have to keep on going. Unethical!!
Same goes for psychoanalysis with regards to therapy. People spend fortunes for decades only to learn not one thing but they want mommy' teet! CBT on the other hand is empirically validated and will teach how to cope and what to do instead.
Sorry stroke brain rambling.

Bottom line is still quackery is quackery.
And as far as use of tryptamines, there is tons of research.

Good on ya Brian for always being so kind.
I'll have to make a presence more often. Been too long!!

One final comment and I'm done:

Lancashire Lad, a few years ago, after going chronic due to medical treatments that complicated matters rather than giving me help, I rehabilitated a house for a chiropractor and lead professor at the National College of Chiropractic in Lombard IL, (now the National University of Health Sciences). One day I got hit hard while he was there. He took one look at me and asked if I have Cluster Headaches. When I affirmed it he left me alone until I was done with the hit. This was before we knew energy drinks worked, and O2 had not yet been prescribed to me.

Once the attack was over he came back in and we discussed CH for some time. He knew more about CH than did my Neuro, and he is the one who told me to get O2. We discussed chiropractic, and he told me every student at National studied CH, Migraine, and other primary headache disorders, even though they knew they couldn't help them, except to refer them to a medical doctor. They had an entire chapter on CH alone!

He told me that day that if any chiropractor tried to tell me he could do anything for CH to run, not walk, out of his office, because he was a scam artist and a sham. Chiropractic can be helpful for the attendant pains and problems caused by fighting the pain, but not the CH itself.

We spent over two hours that day discussing CH and other headache disorders (some of which chiro can help) and I learned more than I ever did chasing MD's around the block. Because he was a Doctor of Osteopathy as well as chiro headaches were a secondary specialty to him, and were the subject of one of his PhD dissertations. (He has two) I'll take his word about whether CH is treatable by chiro.

The next time I saw my Neuro I asked how much time he had actually studied CH, and he told me in med school he had a total of THIRTY minutes of education on ALL forms of HA, and he didn't even hear of CH. In his neurology training he had a total of ONE forty-five minute lecture on HA's in  general, and a passing reference to CH was made at that time. I wrote about all of this at the time. If you wish to go back into the archives you can probably find it. I'm sorry I can't tell you for sure when it was.

Perhaps Potter's succinct response was blunt and impolite. I will soften mine. It is the night squeezings of a large male ox.

Had Laurelyn asked for help it would have gladly been offered, but when a shill pops on and blatantly pushes chiropractic the BS meter goes into full mode. Can the neurological retraining she mentioned have any value? I doubt it, but would be willing to look into it some more. (I tried to, but all I could get from them was a sales pitch.)

Jerry

I've an open mind on the effectiveness of what was described.

I have pretty bad tinnitus which started after the severe concussion I had that also kick started my CHs and migraines. It is pretty loud and it was having a pretty severe impact on my life. After an assessment at the local university I took part in a research project which involved playing a game which included sounds very close in pitch to the tone from my tinnitus daily over a few weeks. This effectively reprogrammed how my brain processes the tinnitus noise to the extent that most of the time I'm not even aware of having tinnitus. It only seems to be obvious at times (like writing this post) that tinnitus is mentioned. The research gained the person involved their PhD and further work is being done on it.

So I have first hand experience of how the brain can be reprogrammed by doing something very simple to change how it processes data. If anything it is scary how simple it was done.

So the possibility of doing something to change how the brain responds to headache pain to me is not something I'd regard as impossible.

I have to chuckle at some members here who whine about manners and conduct on this board. I find their whining to be highly offensive. If your name is DJ, you have the right to tell folks how to act in his house.

So, I send a big "howdy" to people that I have learned to both like and respect over the last 16 years here - including Bob, Ueli and Potter!

Marc

Marc wrote on Jul 11^th, 2015 at 8:45pm:

I find their whining to be highly offensive.

I never meant to offend you. I was merely questioning whether anyone has the right to abuse and swear at first-time posters.

I'll do my best not to be so highly offensive in future.

AussieBrian wrote on Jul 11^th, 2015 at 9:15pm:

Marc wrote on Jul 11th, 2015 at 8:45pm: I find their whining to be highly offensive. I never meant to offend you. I was merely questioning whether anyone has the right to abuse and swear at first-time posters. I'll do my best not to be so highly offensive in future.

Mighty nice of you, I must say!

  " I find their whining to be highly offensive "

   I was trying to think of a good retort to such a statement, but the tears rolling down my face, cracking me up, reading such a post !     for once I'm stumped !

We shall try to be more considerate of your feelings "princess" in future posts, heaven forbid we offend the likes of you in anything we may post  !
that statement needs its own thread !
its a classic !   well done Marc.
I think its only your 4 mates that seriously give a damn whether your offended or not !
200 odd posts in 16 years hardly compares to the hundreds Brian and others have contributed in helping new comers.
but keen to learn your secret brotherhood handshake   ;D
what an absolute tool  "edit"  of a thing to say !
It seems to be, that some that have been on the forum for a lengthy time, seem to feel a superiority or greater than thou attitude !   Me, I judge people on what they say now, I don't care much for ones history, your judged on what you do now, not 15 years ago with a "buddy" 
   Perhaps D.J can set up an " old crusties section" could be set up for those with issues and they can bitch amongst themselves ! criticise everything be rude and cantankerous to each other resite how things were done in the "old days" and how great they are, or were ! 
Hell,  I'd pop over there for a laugh too
                          ;D


colin

Colin,

You missed the whole point of my post. Your little rant is way off target.

Marc

Marc wrote on Jul 11^th, 2015 at 8:45pm:

I have to chuckle at some members here who whine about manners and conduct on this board. I find their whining to be highly offensive. If your name is DJ, you have the right to tell folks how to act in his house. So, I send a big "howdy" to people that I have learned to both like and respect over the last 16 years here - including Bob, Ueli and Potter! Marc

Marc,  If I have mis- understood your post, please feel free to explain how ?
what have I missed ?

regards
colin

Marc,
I bet when you are out taking your nature pictures, you purposely step in the cow pies.  Leave it to you to jump into the shit old friend!
Boob

Seems as if the unwashed have gone from attacking my one word Bullshit reply to our one post add by the chiro to attacking some of us old timers. Bullshit.

         Potter

wrote on Jul 12^th, 2015 at 8:56am:

Seems as if the assholes have gone from attacking my one word Bullshit reply to our one post add by the chiro to attacking some of us old timers. Bullshit.          Potter

  oh common Potter ! your not havin a dummy spit are you
                               ;D
       

wrote on Jul 12^th, 2015 at 9:26am:

wrote on Jul 12th, 2015 at 8:56am: Seems as if the unwashed have gone from attacking my one word Bullshit reply to our one post add by the chiro to attacking some of us old timers. Bullshit.          Potter   oh common Potter ! your not havin a dummy spit are you                                ;D

Nope.  Just aim your vitriol in the right direction.

        Potter

My "vitriol"   
I'll use your term
     bullshit
      ;D

yep, your spitting the dummy alright !
  you really turned out to be a sook didn't you !

Come on potter, Federer is playing Dokovich in the Wimbleton tennis final !
That's far more interesting than playing computer tennis against an old crusty grumpy old fart like you !   ;)
chill out man !
who'd a thought a man so "sensitive" as you would be concerned with such a comment !    ;D

kindest regards
simpleton
not a very nice person ( a potter word deleted)
offended

      

Ok......now this thread has become nothing but a pissing contest.  Shut it down or I will shut it down.

:'(

:-*

Jimi wrote on Jul 13^th, 2015 at 9:45am:

:-*

;D

    

---

Sometimes Potter its best to say nothing but then you wouldn't get the attention or the satisfaction out of knowing you have offended, belittled or hurt someone.

I should, at this point, take my own advice but as this is my last post I will excuse myself.

My research has led me to understand that there is more not known about primary headaches than known and some of their sufferers are like plumbers, lawyers, bar keeps, nurses and pretty much every category where you may want to place someone. There are arseholes and there are good guys and a whole lot in between. There are also clever people, normal and thick people.

Its the thick arseholes that tend to get noticed but not for the right reasons.

My research also brought me into contact with some big name "experts". Sjaarstad was very generous but stuck in his ways, Goadsby did not reply which did not disappoint. But the others, some not so well known, the good ones (in my opinion) were pragmatic (in private). The boundaries of primary HA diagnoses are not clear in the real world, there is much overlap.

As said previously the subject is not well understood, not the diagnosese or treatment (cause or symptom).

The strength of this forum, if it isn't spoilt by those that don't respect / value it (and it hasn't been yet) is the numbers. What works for someone might work for someone else and there again it may not. But when it does; that is an immense prize.

That's not to say some of the symptom alleviators are not harmful in themselves. Mine, not by choice, is indomethacin, it can cause the guts to rot, lead to heart failure and psychosis in later life (nice) but I wouldn't be without it. And before any prick stands up and shouts "if indo works for you, you havn't got CH"! Sit down you don't know what your talking about.

A small lesson in a bit of science: One poster here when I pointed out that multiple studies had shown elevated use of D3 carries with it a potential increased risk of death from heart disease, stroke and alzheimers, he donned his tu tu and twirled around in a hissy fit shrieking that I had said he was going to die from all the above. To blacklab, just because someone smokes 60 a day doesn't  mean they will die of lung cancer, it means the risk that they will is increased.

This site was extremely useful to me I wish I could leave it in as good or better shape than when I joined, unfortunately that is not the case for which I do not entirely blame myself.

gidday Lancashire,
      agree with most of what you posted, great post.
and I mean that.
My only retort would be that if " multiple studies" showed that an elevated use of D3 carries with it a potential of death from heart disease, that's great, but there have been more studies contradicting this fact and even more evidence on record that there has never been a reported death of elevated use of D3. That's a fact.
Including I might add a clinical study in place measuring the effects of D3 on Alzheimer patents !  I think your very selective in facts you put up, or very very under researched.
we all know for a fact, cigarette smoking causes lung cancer among other things, so its an invalid comparison.  but there's yet to be factual evidence of the studies you quote.
D3 is not for everyone, its a choice, but when you chimed in on a conversation calling someones decision to titrate up and called it ridiculous and dangerous ( from memory) it then became your personal beliefs from unquantified studies which to date cant be validated.
Its the same thing that you ask of people not to criticise or judge  on your use of indomethacin, should also mean the same with you telling someone not to titrate up, can you see the comparison I'm making here ?
Recently Batch got hung and quartered by a poster for potentially scaring people into not using conventional drugs because he put up the factual death rates from commonly used CH treatment drugs !  If you could point to some factual, documented deaths or heart disease caused by elevated use of D3, not "multiple studies" Then you would have a right to advise posters of that documented evidence, as you did.
Listen, that's water under the bridge, we both got our points across, but don't expect me or anyone else to agree and take every word you say as fact and not open for debate, that's never going to happen, you believe in one lot of evidence, but many more of us believe in other medical papers contradicting yours.    Its our choice, just like your indomethacin choice, you have to accept we don't follow your path and mindset.
but apart from that, I do hope an alternative to indomethacin turns up for you, that's horrible stuff, but we take what we need, no one deserves to be in pain.
  On the ongoing nature of this post, well, nothing and I mean nothing justifies abusive responses to new posters, whether they be Ch sufferers or even spammers. I wouldn't care if it was a moderator ( only an example  ;D) or the fossel mob who seem to think the length of time gives them a dispensation on how they act. Hopefully this thread ends, as I think everyone has expressed how they feel and that should be that I suppose, this is my last post on the issue. 
all the best
colin

There's no "r" in assh_le!

Hey Lancashire,

Why your last post ?????

Peter.

Bob - there is in England. We don't have asses, we have arses !!   ;D ;D ;D

I thought they were bumm's.

Hey colin.."fossel mob"? Good one.  ;DMay I use that for some of the old farts that hang out here?

Fossel?  Would that be The Queens English? 

        Potter

Yeah, we have bums too. Bum is the nice word. The one kids are allowed to use.  ::)

BobG wrote on Jul 14^th, 2015 at 9:42am:

Hey colin.."fossel mob"? Good one.  ;DMay I use that for some of the old farts that hang out here?

Oh, heck - another fossil has reared his head!

You're just another one of those awful crusty people that went out of your way to actually help other CH sufferer's in person, one-on-one - without using distance as a deterrent. In fact, you drove through the desert all the way to Las Vegas almost daily. (And no, Cluster support did not start there!)

Nice to see someone who knows that "carbs" can also mean Holley, Rochester and (shudder) Carter...... Hope you are keeping your cams lumpy, your valves polished and your headers tubes blown out!

Marc

wrote on Jul 14^th, 2015 at 10:05am:

Fossel?  Would that be The Queens English?          Potter

Unfortunately I'll be the first to admit my command of the "queens English" is not my strong point. I will add Potter your grammatically correct in your spelling of Bullshit and "the ass@oles"  ;D
I suppose I was the angst of my English teachers at school and that has continued with my wife ! her pet hate is peoples inabilities to use correct grammar !  She constantly claims that my spelling and creative words are nothing but "colinisms"   Now I no there is no such word, But my wife has a black belt in verbal karate ! so I'm not about to contest the fact  ;)
I find even with my "colinisms" ie fossol, Its a much more socially acceptable word, with all its glaring faults, compared to some language which tends to reflect ones true ability to communicate or indeed socialise.
that's not to say I don't share in the joy of construction site gutter language !  It just means there's a time and a place.
                                  ;)
Would love to be more articulate in expressing my written views ! but hell, the older I get the more intolerant I am towards idiots and conforming to what's politically right or wrong !   I'm happy to admit that,,,,, not to my wife thou !
                                   ;D
colin
 

BobG wrote on Jul 14^th, 2015 at 9:42am:

Hey colin.."fossel mob"? Good one.  ;DMay I use that for some of the old farts that hang out here?

Hey Bob,
           I'm sorry, but you may not use my "colinisms"
  I'ts taken 54 years to create such words, and I don't like to share   ;D

regards
colin
:D

This thread cracks me up! If I miss my soaps, I can always come here and just get away for a bit. Thanks guys.  ;D ;D ;D

spinning around in anticlockwise circles whilst watching wimbledon didnt help my CCH very much , perhaps i should have tried clockwise. i will do so during the US open and promptly report the results. WOW! all this response from potters use of a single word.........i would love to watch a press conference from him if he were president.  FUCK YEAH ! POTTER FOR PRESIDENT!!!!!

wrote on Jul 15^th, 2015 at 3:41am:

FUCK YEAH ! POTTER FOR PRESIDENT!!!!!

Then put it to the vote.

wrote on Jul 15^th, 2015 at 3:41am:

spinning around in anticlockwise circles whilst watching wimbledon didnt help my CCH very much , perhaps i should have tried clockwise. i will do so during the US open and promptly report the results. WOW! all this response from potters use of a single word.........i would love to watch a press conference from him if he were president.  FUCK YEAH ! POTTER FOR PRESIDENT!!!!!

I'm an honest, straight forward Montana cowboy. I don't slap backs kiss ass nor kiss babies.  Leaves me out.

               Potter   

But you DO give one-armed hugs though.   ;)

Linda_Howell wrote on Jul 15^th, 2015 at 2:39pm:

But you DO give one-armed hugs though.   ;)

  I do give one armed hugs,  I also give one armed kisses.  Ask Beeyul.

              Potter

wrote on Jul 18^th, 2015 at 9:37am:

Linda_Howell wrote on Jul 15th, 2015 at 2:39pm: But you DO give one-armed hugs though.   ;)   I do give one armed hugs,  I also give one armed kisses.  Ask Beeyul.               Potter

I've heard that Beeyul will take pictures, so be careful!  ;D

How many other CH'er on this board spend more time, energy and money to DIRECTLY help Clusterheads with Oxygen equipment than him? I don't mean "sweet little online pat on the back's and virtual hugs."

I'm talking about hands on help like shipping regulators, fittings, adapters and other parts to really help.

Oh..... never mind - he's just another old crusty guy that works behind the scenes and doesn't look for notoriety and post counts to validate his importance. 

Marc

Well said, Marc.

jc

Perhaps we can convince others to help out completely behind the scenes...

CDog wrote on Jul 21^st, 2015 at 12:44pm:

Perhaps we can convince others to help out completely behind the scenes...

   Is that a suggestion?

        Potter