I am encouraged to ask, as after an off site email, I now know there are at least two of us out there that AP did help.
After 20 years of severe CH, drug resistant, year long episodes, solid tens some, in 1987 I stumbled on a practitioner of AP, mainly because I was looking for acupuncture, his other specialty along with Chiropractic. Without babbling, I walked in after an almost year long episode, (thought I had become chronic), and after a long workup, two days later he did some work on me, and leaving the office I had a precursor, and that was it, the episode stopped dead in its tracks. Since then, my annual bouts have gone to one every two years, in fall all of them, the severity has dropped from 8's and 10's avg to 2's and 4's, occasional bad ones, and the length is maybe 3-8 weeks working with my doc, down from average 6-12 months.
I bring up this subject with caveats. First, I use him parallel with other meds and stuff, wouldn't dream of throwing away my O2 bottles. Two, as with any profession, there are good and not so good practitioners, I hate seeing people give up on an avenue of therapy because one practitioner did not give relief. Hell, did the first MD you saw diagnose and treat your CH 100%? Last, I know that standard medical practice poops on AK. Heck, seems they poop on anything that costs them money, but AK might be something we want to at least look at.
So, whatever I'm writing is anecdotal at best, but factual to the best of my abilities. It might not have any validity for anyone else, but my question is if anyone else has tried it, what were your results, and is this something we should put in our bag of CH tricks either after everything else has failed, or, God forbid, as a primary treatment for CH?

fly gas wrote on Dec 6^th, 2008 at 7:27am:

Last, I know that standard medical practice poops on AK. ...but AK might be something we want to at least look at.

They do.  

Looking at it...


Quote:

The Bottom Line If you encounter a practitioner who relies on AK muscle-testing for diagnosis, head for the nearest exit. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Yeah, I've read that one. A lot of cites of very old studies, some more recent and positive ones ignored. The author is a retired psychologist, who has made a lot of bucks on his opinions. I don't know his qualifications judging anything in neurology or AK, and I also have my opinions on him, but someone beat me to it, check:
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This guy points up the need to question ALL meds and doctors and studies, and skin deep tapping on google just doesn't cut it.
Wiki links to a number of studies pro and con, a bit more balanced and non judgmental, but who knows what is valid and not valid these days. I am reminded of acupuncture. Standard medical practice was aware of it for centuries. We saw practitioners on china doing open brain operations on patients with only a few needles for anesthesia, but Western doctors still poop on that also. Heck, it only took them 40 years to tell us that smoking was bad for us, and they still are arguing about PCB's, Agent Orange and a raft of other things, not to mention the cornucopia of drugs and operations they have embraced that over the years have killed or maimed millions.
Part of the glitch, is the concept of rigorous scientific proof. Esp with clusters, the idea of an experiment that can be repeated anywhere, by anyone, showing the same results is not valid. All clusters are different, as are the sufferers, so there is a variable injected by definition that derails standard scientific inquiry. the guys experimenting with hallucinogens run in to the same problem, looks promising, but hard to design a scientifically valid experiment.
Anyway, I could care less what average people or internet gurus say about AK. My question is if there is any experience, pro or con, that my fellow CH sufferers have had.
I don't have anything for or against medicine at any practice, I'm not that smart, and I know there are good and bad practitioners in every discipline.
It is just that this one doc and brand of medicine had a stunning effect on me, I have to wonder it anyone else has had any experience and if this is something we should look at. I must admit, I have a prejudiced idea at this point that we probably should look at AK for possible relief for some CH sufferers, I could be wrong.
With all the scientific studies in the world, all I can see is 21 years of finally managing my pain.
Not very smart I am, eh?

The chiropractic lead-in brings us, AK.


fly gas wrote on Dec 6^th, 2008 at 8:40am:

Part of the glitch, is the concept of rigorous scientific proof. ...who knows what is valid and not valid these days.

Just a glitch, a little hurdle.  Difficult for objective decisions.


 

You may have noted, that the entire field of CH study shares this glitch, ergo what works today, does not work tomorrow, works for some, not for others.
Its like shooting darts blindfolded, but like darts, sooner or later, by persistence and luck, you are going to score.
If you want anything definitive and scientifically provable, sorry guys, you picked the wrong disease to play with.
There was a good piece last night on TV on websites in medicine, especially those sites that are disease specific. A lot of caveats, bad info, unsubstantiated claims etc, but their bottom line was that the shared experiences of hundreds or thousands of sufferers, with all their studying and clinical experience were more valid than any individual, no matter how expert that person might be.
I tend to agree.

fly gas wrote on Dec 6^th, 2008 at 8:40am:

Wiki links to a number of studies pro and con, a bit more balanced and non judgmental,

Following the page-long criticism from the balanced Wiki, lastly are position statements from U.S. and Danish Chiropractic Associations.  While the U.S. reads neither here nor there, the Danish add:

Chiropractors may not infer or imply that the Danish chiropractic profession endorses AK to be legitimate or effective, nor may the word/title chiropractic/chiropractor be used or associated with the practice of AK.



Wiki also adds:

See also

List of pseudosciences and pseudoscientific concepts
ideomotor effect
magical thinking
Observer-expectancy effect
ad hoc hypothesis


The list of skeptical evaluations is long.


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fly gas wrote on Dec 6^th, 2008 at 7:27am:

...is this something we should put in our bag of CH tricks either after everything else has failed, or, God forbid, as a primary treatment for CH?

This is crazy.
If you actually read the link you pasted, The American Chiropractic Assn is a major proponent of AK. They state as of 2005, 37.6% of American Chiropracters use it, 12.9% of their patients have it as part of their treatments, and it is the number ten most used technique in chiropractics. You think that is "neither here or there"? Christ, then, what the hell is here or there?
It is right there in black and white, why do you post things that are patently untrue or misleading?
Did you just miss this Wiki footnote, or a bunch of others that fly in the face of most everything you've written?
Listen, we all have our opinions, and together they are not worth a sack of wet noodles.
If someone has any facts or personal experience here, it might add a bit more than the mindless regurgitation of 20 year old studies.
Heck, any pharm company can fund a survey to say anything they want, pro or con, happens every day. So can AK for that matter, which is why I would love to hear actual experiences, not just one person's opinion.

fly gas wrote on Dec 6^th, 2008 at 3:00pm:

If you actually read the link you pasted,

The link I pasted was the one you mentioned that was:


Quote:

a bit more balanced and non judgmental

It was difficult to stumble over these phrases every few sentences:


Quote:

AK has been criticized on theoretical and empirical grounds a review of peer-reviewed studies concluded that the "evidence to date does not support the use of [AK] for the diagnosis of organic disease or pre/subclinical conditions." A double-blind study was conducted ...and concluded that, "The results of this study indicated that the use of Applied Kinesiology to evaluate nutrient status is no more useful than random guessing." many studies of Applied Kinesiology have failed to show clinical efficacy. For example, muscle testing has not been shown to distinguish a test substance from a placebo under double-blind conditions, and the use of applied kinesiology to evaluate nutrient status has not been shown to be more effective than random guessing. Some scientific studies have shown that applied kinesiology tests are not reproducible. the few studies evaluating unique AK procedures either refute or cannot support the validity of AK procedures as diagnostic tests. The evidence to date does not support "There is little or no scientific rationale for these methods. Results are not reproducible

Quote:

it is the number ten most used technique in chiropractics. You think that is "neither here or there"? Christ, then, what the hell is here or there?

The tenth most used technique by chiros, and this quote by the chiro asso is neither here nor there:  


Quote:

"This is an approach to chiropractic treatment in which several specific procedures may be combined. Diversified/manipulative adjusting techniques may be used with nutritional interventions, together with light massage of various points referred to as neurolymphatic and neurovascular points. Clinical decision-making is often based on testing and evaluating muscle strength."

You left out what the Danish Chiro Asso said:


Quote:

Chiropractors may not infer or imply that the Danish chiropractic profession endorses AK to be legitimate or effective, nor may the word/title chiropractic/chiropractor be used or associated with the practice of AK.

Quote:

It is right there in black and white, why do you post things that are patently untrue or misleading?

It is the link you said was objective and non judgmental.  Here is the black and white again:


Quote:

AK has been criticized on theoretical and empirical grounds a review of peer-reviewed studies concluded that the "evidence to date does not support the use of [AK] for the diagnosis of organic disease or pre/subclinical conditions." A double-blind study was conducted ...and concluded that, "The results of this study indicated that the use of Applied Kinesiology to evaluate nutrient status is no more useful than random guessing." many studies of Applied Kinesiology have failed to show clinical efficacy. For example, muscle testing has not been shown to distinguish a test substance from a placebo under double-blind conditions, and the use of applied kinesiology to evaluate nutrient status has not been shown to be more effective than random guessing. Some scientific studies have shown that applied kinesiology tests are not reproducible. the few studies evaluating unique AK procedures either refute or cannot support the validity of AK procedures as diagnostic tests. The evidence to date does not support "There is little or no scientific rationale for these methods. Results are not reproducible

Are you saying these are all untrue or misleading from the site you said was objective and non judgmental?



Quote:

Did you just miss this Wiki footnote

No, I mentioned the long list of skeptical evaluations.  Let me list them here:


Quote:

Skeptical evaluations Applied Kinesiology: Muscle-Testing for "Allergies" and "Nutrient Deficiencies" by Stephen Barrett, Quackwatch Applied Kinesiology by William T. Jarvis, The National Council Against Health Fraud Applied kinesiology James Randi Educational Foundation, An Encyclopedia of Claims, Frauds, and Hoaxes of the Occult and Supernatural The Mischief-Making of Ideomotor Action by Ray Hyman, The Scientific Review of Alternative Medicine Applied Foolishness by John Blanton, The North Texas Skeptics InteliHealth applied kinesiology article material was reviewed by the Faculty of the Harvard Medical School with final editing approved by Natural Standard. Muscle Testing by John Ankerberg and John Weldon, The Encyclopedia of New Age Beliefs Testing Muscle Testing: Applied Kinesiology by James Walker, The Watchman Expositor Applied Kinesiology and Nutritional Muscle Response Testing: A Christian Perspective by Janice Lyons Applied Kinesiology By Nicholas Brewer, 2006 Applied Kinesiology by Harry Edwards, A Skeptic’s Guide to the New Age Retrieved from "START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE And I listed similar interests from the site: [quote]See also List of pseudosciences and pseudoscientific concepts ideomotor effect magical thinking Observer-expectancy effect ad hoc hypothesis

Quote:

This is crazy.

Not really.  It doesn't hamper gathering testimonials from a CH site.

   I'm glad it did you some good. I received no beneficial result from it at all. And would not recommend it. YMMV
[smiley=smokin.gif]

Kirk, appreciate the feedback. I know there's nothing that will work for everyone, maybe i just got lucky, now 15 times in a row, over 21 years.
As to AK, maybe if someone has gone through all other available treatments, it is worth a try. About 2-400 bucks to go through the whole thing, more or less, I don't know how others charge, but I've spent a lot more than that on a single doctor's visit or a single  worthless prescription.
As to this other guy, I won't waste my time. Do your own independent research, read these sites for yourselves, maybe ask your own practitioners and make up your own mind. Its not as black and white as it is painted by standard medicine, drug companies and others with irons in the fire, not for AK, or for a lot of other non standard approaches to medicine.
Who knows. If a few people try it and get relief, that would make me very happy. If my experience is unique among all CH sufferers, then I am sorry beyond words that I have falsely gotten your hopes up,
that is certainly not why I've shared my experiences here.

My family uses AP to test medications, along with supplements on ourselves. Basically, I had a kinesiologist / iridologist, who taught us a lot about it.

The muscle testing for the medications works well for us, and to prove that it's not placebo effect, my family HAS added in my medicine things that I didn't know about. Things I'd tested weak to caused the same reaction, no matter if I knew about them or not. (My doctors even had my family do this, regular doctors, just as a test to make sure I wasn't freaking out and having the allergic reactions due to fear/stress.)

My Grandpa reads every single book he can on it, then again, he'll read anything if he thinks he can find something to help me get better. We figured out how much melatonin I should take through this, along with any of my other medications.

That's just my experience with it. We've used it since I was 17. It's something that you can actually just get books on, and do at home, if you want to try it.

The way this usually plays out is that flygas keeps pecking away on the subject of chiro and AK. Eventually he/she gets more and more frustrated because no one else will jump on the tilt-a-whirl with him/her and starts to claim that they are closed minded. and then, again if the usual pattern exists, it heightens and someone storms away muttering.

After reading this AK stuff, I’m heading to the drug store for some Head-On!!!

Roland. :-/

Definitions for everyone from Wiki:

Iridology (also known as iridodiagnosis[1]) is an alternative medicine technique whose proponents believe that patterns, colors, and other characteristics of the iris can be examined to determine information about a patient's systemic health. Practitioners match their observations to iris charts which divide the iris into zones corresponding to specific parts of the human body. Iridologists see the eyes as "windows" into the body's state of health.
As it is not a method of treatment but a diagnostic tool, its practitioners often study other branches of alternative medicine, such as naturopathy.[citation needed].

Kinesiology, also known as Human Kinetics, is the science of human movement. It focuses on how the body functions and moves. A kinesiological approach applies scientific and evidence based medical principles towards the analysis, preservation and enhancement of human movement in all settings and populations.[1] Kinesiologists work in research, the fitness industry, clinically, and in industrial environments.[2] It is not to be confused with Applied Kinesiology, a controversial alternative medicine technique.

AK: Applied Kinesiology (AK) is a practice of using manual muscle-strength testing for medical diagnosis and a subsequent determination of prescribed therapy. According to followers of the theory, it gives feedback on the functional status of the body.
AK is a practice within the realm of alternative medicine and is therefore different from "kinesiology," which is the scientific study of human movement. AK has been criticized on theoretical and empirical grounds,[1] and characterized as pseudoscience.[2]

AP = Acupuncture physician (?)

WTF = well, you know.....

BEDH = beating a dead horse

I went to such a AK practice once, my ex wife and her alternative lifestyle mother pestered me into trying it. I was told to hold some sort of stones, and then I was poked in the muscles by the AK persons finger. At the end I was told to sit in a specific position, and that this was going to reestablish my energy. I never went back, went to a pub and had a beer, and guess what.. I felt much better:-)

Easy does it young bookmer, life is too short to get frustrated.
You may have noticed, but in life, some people actually are close minded. Some are not.

Maybe some people have tried AK, will try it in the future, meanwhile, some people will never try it. So be it.

Why some people have a zealotlike need to bash it when they have never tried it, who knows. Maybe they honestly think that some retired blogger and the Danish Chiro Assn are the primary experts on medicine in the world. BTW, the Danish paper allows their Chiros to practice AK, their 1998 position is that they want to make sure AK is not presented as Chiro, fair enough, no big too-doo.

There are studies and positions that have AK as spawn of the devil, those that embrace it, like the American Chiro Assn
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According to the American Chiropractic Association, Applied Kinesiology is the 10th most frequently used chiropractic techniques in the United States, with 37.6% of chiropractors employing this method and 12.9% of patients being treated with it.[33]

   "This is an approach to chiropractic treatment in which several specific procedures may be combined. Diversified/manipulative adjusting techniques may be used with nutritional interventions, together with light massage of various points referred to as neurolymphatic and neurovascular points. Clinical decision-making is often based on testing and evaluating muscle strength."

As a lot of negative studies have been presented, a few positive ones for balance incl:
Perot C, Meldener R, Goubel F (1991). "Objective measurement of proprioceptive technique consequences on muscular maximal voluntary contraction during manual muscle testing". Agressologie 32 (10 Spec No): 471–4. PMID 1844106.
Frost, Robert, Applied Kinesiology: A Training Manual and Reference Book of Basic Priciples and Practices', p. 4, North Atlantic Books, 2002. available online.
Schmitt WH, Leisman G (December 1998). "Correlation of applied kinesiology muscle testing findings with serum immunoglobulin levels for food allergies". Int. J. Neurosci. 96 (3-4): 237–44. PMID 10069623.

It seems part of the dark underbelly of medicine, is that those with incredible financial stakes, can churn out studies that can say most anything. If their first study doesn't support their position, hell, just hide it, and do another. Drug companies make billions thus, selling drugs that don't work, or that have side effects that hurt or kill. Just read your newspaper, happens all the time.

The one thread that I did get reading some of these, is that AK is a pretty much new practice, founded in 1964, and licensing and training is sometimes called to question. As with any doctor, it is valid to question a practitioner's training and experience in the field. Heck, you wouldn't want your brain surgery to be done by a part time neurosurgeon who has never done the operation before.

If you're waiting for a definitive study on efficacy on AK to CH, rotsaluck. Studies by the AK Inst will be positive, studies by competing standard medicines or drug companies will be pretty negative, what would you expect.

Still, in a syndrome that looks at hallucinogenic drugs, native American herbs, hot showers and oxygen pushes, maybe AK  is one more thing that MAY offer relief to a few of us. I don't know.

With all due respect to the google types, I could care less about your studies.

All I asked, as it seemed to work for me, was if anyone else out there has any EXPERIENCE with Applied Kinesiology that they might want to share with other sufferers?

seasonalboomer wrote on Dec 8^th, 2008 at 6:24am:

AP = Acupuncture physician (?) WTF = well, you know..... BEDH = beating a dead horse

Add to BEDH + AAA = again and again.

I don't see you looking for feed back, just reiterating it over and over.

As per the usual, some drug company bashing worked into the conversation as well.

As I've said to you before; when you hope that others will "try it", meaning take time and resources to try something that has consistently presented very, very low odds of helping cluster headache, I see it as a sad, waste of precious time and money. Two things, that if applied with care and focus, can help a large percentage of cluster sufferers.

I would ask you to imagine a cluster sufferer who is desperate for help. They are getting hit three times a night, they are worried about their job, their family and how the heck they are going to get any relief from what they are going through. If they are new to this CH world do you recommend they schedule an appointment with an applied kinesiologist or talk to a doctor and teach them how to present info to get oxygen? Do you present information that can help them understand how triptans can be part a balanced approach to abortives? Do you, in effect, try to teach them a way out that has a reasonable percentage of success? Or a shot in the dark?

So your choice. Do you take the feedback you've been offered? Which is essentially, we haven't seen a lot folks claiming success with these approaches or do you keep doing what I've predicted you'd keep doing. And do you play it out to the end and walk away muttering what a bunch of closed minded idiots we are, or familiarize yourself with this community of broad minded cluster headache sufferers and supporters. It's your choice.

fly gas wrote on Dec 8^th, 2008 at 8:18am:

the Danish paper allows their Chiros to practice AK, their 1998 position is that they want to make sure AK is not presented as Chiro, fair enough,

Chiropractors may not infer or imply that the Danish chiropractic profession endorses AK to be legitimate or effective, nor may the word/title chiropractic/chiropractor be used or associated with the practice of AK.


fly gas wrote on Dec 8^th, 2008 at 8:18am:

no big too-doo.

fly gas wrote on Dec 8^th, 2008 at 8:18am:

Studies by the AK Inst will be positive, ...what would you expect.

fly gas wrote on Dec 8^th, 2008 at 8:18am:

If their first study doesn't support their position, hell, just hide it, and do another.

fly gas wrote on Dec 8^th, 2008 at 8:18am:

rotsaluck

fly gas wrote on Dec 8^th, 2008 at 8:18am:

...some people actually are close minded.

Your words swing both ways.

Could some-one explain for me what is Applied Kinesiology, in simple words, didn’t totally understand it, looked it up in wiki but some what seems very un organized, is it an alternative treatment, I never heard of this before this morning …..

Michael

Crikers, I'm just asking for feedback from anyone who has had EXPERIENCE, ergo tried it.

All I get are some ?'s quoting antiquated studies and damning me for causing heartless suffering to fellow sufferers.

I don't suggest anyone try it, but I'm not presumptuous enough to tell people not to try ANYTHING that has helped others with CH. Who do some people think they are? Stop treating everyone on the list like they are morons, unable to make inteligent decisions without your Godlike condescending counsel. Yeah my words swing both ways, it's called conversation, not closed minded diatribe, and yes, there are pro's and con's on most any remedy in the field of CH.

I do say it has helped me, and maybe if someone is in the 5% that standard approaches don't help, and they've tried everything else, MAYBE it is another avenue to try, not dropping any concurrent remedy that is helping them.

Is that too damned complicated to grasp?

I don't pretend to know if AK is valid or not, but some posters must be  genius's, never tried it, but after reading some lame studies
they are the final word on AK, perfectly positive that it does not work, never, ever for anyone; smug and judgmental in their own little worlds, condemning anyone with an open mind on the subject.

If you genius's with 2-6,000 messages already posted have nothing better to do than bash me and AK, and hog the site, why not start your own thread and bash away.

There is no scientific proof that AK works or does not work. There is no scientific proof that many of the things that help CH sufferers work, no scientific studies on hot showers, acupuncture, Pepsi, schrooms, pacing, coffee, seeds, most drugs, cold packs, nose blowing, herbs, rice packs or the other things that seem to have helped others on the list.

So I guess you don't want us to try any of those also? Gee, thanks guys, appreciate the input, pardon me if i think your arguments are dangerous and without merit.

My point is that some of these things may, and do work with some people, maybe a thin minority, but the idea is to keep trying new things until you find something or some combination of things that works for you. If one's CH is perfectly handled by a therapy, why go any further? If you still suffer after many therapies, don't give up, keep trying things that have helped others, maybe even wierd things or non standard medicine in one of it's many forms. NEVER GIVE UP!!!

Anyone who would discourage trying any new technique when a sufferer has gotten no relief from more standard avenues, might not be doing us a favor. Even if it works in 5% of cases, and a lot of these things only work for a few of us, it is at least worth thinking about.

Contrary to a lot of posts, y'never know......not for sure.

Michael, I’m with you. And after all that jargon I still don’t understand, and I want to keep it that way now!

I thought it was that quack stuff I have seen on 60 minuets where they pull a fake tumor out of someone (add some fake blood) and called them healed.

[smiley=crackup.gif] [smiley=pokeeye.gif] [smiley=watchdrama8jm.gif]

Right according to the book. Utterly predictable.

fly gas wrote on Dec 6^th, 2008 at 8:40am:

I could care less what average people ...say about AK.

In a balanced topic, it's unfortunate some posts interfered with your disregard of average people  

What interferes are the posts from people ignorant of the topic I advanced, setting themselves up as experts by quoting bizarre, debunked  internet sources.
I only asked if anyone out there has any experience,
honest question,
why not set up another thread for opinions,
honest response.

fly gas wrote on Dec 8^th, 2008 at 12:27pm:

people ignorant of the topic I advanced

As I see it, theres not much in the advance stage here. The boosters have not even left the pad yet!

fly gas wrote on Dec 8^th, 2008 at 12:27pm:

quoting bizarre, debunked  internet sources.

[quote]Skeptical evaluations

Applied Kinesiology: Muscle-Testing for "Allergies" and "Nutrient Deficiencies" by Stephen Barrett, Quackwatch
Applied Kinesiology by William T. Jarvis, The National Council Against Health Fraud
Applied kinesiology James Randi Educational Foundation, An Encyclopedia of Claims, Frauds, and Hoaxes of the Occult and Supernatural
The Mischief-Making of Ideomotor Action by Ray Hyman, The Scientific Review of Alternative Medicine
Applied Foolishness by John Blanton, The North Texas Skeptics InteliHealth applied kinesiology article material was reviewed by the Faculty of the Harvard Medical School with final editing approved by Natural Standard.
Muscle Testing by John Ankerberg and John Weldon, The Encyclopedia of New Age Beliefs
Testing Muscle Testing: Applied Kinesiology by James Walker, The Watchman Expositor
Applied Kinesiology and Nutritional Muscle Response Testing: A Christian Perspective by Janice Lyons
Applied Kinesiology By Nicholas Brewer, 2006
Applied Kinesiology by Harry Edwards, A Skeptic’s Guide to the New Age
Retrieved from "START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Please distinguish for us average people which are the bizarre and which have been debunked.







fly gas wrote on Dec 8^th, 2008 at 12:27pm:

I only asked if anyone out there has any experience,

fly gas wrote on Dec 6^th, 2008 at 7:27am:

is this something we should put in our bag of CH tricks either after everything else has failed, or, God forbid, as a primary treatment for CH?

"according to the book"...

Given that most people new to this list, are just trying to get some information, maybe some new ideas, even share their experiences and see if they might help others.

How many people who could be out there now,
are turned off when their first posts are met by arguments of the caliber extended here?

I mean silly arguments, where the new posters are accused of being callous and extending the pain of others. Posts by those who are so superior, they can tell the poster's next move, even when they are wrong. Posts that proffer meritless blogs, and are smug and superior,
while dismissive and insulting.

With 9,000 posts between the two major posters on this thread, a recurring comment is how new posters will post a while and then go off this forum, cursing others for their ignorance. Perhaps a self fulfilling prophecy, as most people don't need that type of abuse and, especially in the throws of a cluster episode, will go other wheres.

On behalf of the people you've chased off, I want to thank you both for your courteous, positive and well thought out responses. If all 9,000 of them are of this cut, you can be very proud of yourselves.

While I don't have the monumental egotism to think that I have 2 or 6 thousand things worth saying to this forum, I do plan to stay around a while.

Some of the old threads and posts are dynamite, and if you guys would stop wasting our bandwidth, I really am curious if anyone out there has any experience with AK.

fly gas
you posted on the initial post
Quote:

“I am encouraged to ask”

yes, very good, ask, we all get to gather some more know how…..and that is what CH.com is for me, a platform for knowledge about our common malady! and yes, a place where I can talk about CH, and I know I am understood!
I am not attacking you, nor am I presumptuous or any thing, I just never heard the term AK (Applied Kinesiology) and I was simply asking you (or all) to explain it to me….. how can I attack you if I have no idea what are you talking about, and as I am interested to gather knowledge, that is why I am on this boards, and I simply ask you to explain to me what is  AK!
you post
Quote:

“All I get are some ?'s”

well the same way you can ask I believe I can ask too! so pleas, take the time and explain for me the term, so I know what we are talking about…..

Michael

BTW I didn’t like
Quote:

What interferes are the posts from people ignorant of the topic I advanced

I might be as you call it ignorant, I do live in a remote village on the Alps…… but I am not stupid!.... so Pls. use proper language!

And now the drama and victimology phase of your little play.
Completely consistent with a particular M.O.

You are still pushing it for some reason? I actually went to one of these guys a few years back on the recommendation of an associate. I found it to be pure quackery at its best. I just did not remember what it was called. I called it holistic hooey!

You wanted the feedback and now I too will be accused of being uninformed also. If our feedback does not conform to your vision, we are labeled ignorant by you…

[smiley=spit.gif]

fly gas wrote on Dec 8^th, 2008 at 12:50pm:

dismissive and insulting.

Who's hand is this?


fly gas wrote on Dec 8^th, 2008 at 12:50pm:

silly, proffer meritless blogs, smug and superior, monumental egotism, wasting our bandwidth

fly gas wrote on Dec 8^th, 2008 at 12:50pm:

I do plan to stay around a while.

Well, watch the personal attacks.      


Welcome.

Could some-one explain for me what is Applied Kinesiology, in simple words, didn’t totally understand it, looked it up in wiki but some what seems very un organized, is it an alternative treatment, I never heard of this before this morning …..

Wildhaus,

Applied Kinesiology simply is a method of testing the body for allergies, and/or nerve, organ or muscle peculiarities.

My doctor uses touch or acupressure to test for nerve and muscle, and
tests about 400 substances on my body for allergies or deficiencies, using a ceramic magnet at three receptor points on the body.
The current from the poles of the magnet are supposed to accelerate the electron flow from the potential allergens. A positive will cause a distinct loss of strength, he has me push against his hand, and my hand just goes backwards if I test positive.
He uses deeper tests to root out false positives, and after analyzing results, he tries to fix any diagnosed problems, usually with acupressure, diet therapies and occasionally supplements. As opposed to most CH therapies whose goal is to contain the pain, AK as I understand it tries to find root causes why the body is allowing this pain to come out again, and then heal the problems, allowing the body to get back to a non episode like state of health, ergo heal itself so to speak. When doing AK, I have never dropped any other course of treatment that has been effective, this episode oxygen, showers and Zomig are the charm, but AK works parallel to my other doctors' work.
I doubt if this approach will work for everyone, I also doubt that many practitioners are 100% in their practice, as this is an evolving discipline, more the conjuncture of a number of disciplines.
Better explanations can be found at

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

but as this is the site of the AK college, it is offered as a resource only.
Most studies on AK are skewed one way or the other, as if the writer has their mind made up before day one.

My experience has been good, others have not had luck.

This is why I keep asking for experiences from people who have actually tried it, not just read some blogs.

If you do try it, I wish you luck, and I hope you will share your results, positive or negative.

If it is not for you, that is OK also,
I wish you luck in whatever course you choose.

Chris

fly gas wrote on Dec 8^th, 2008 at 1:27pm:

This is why I keep asking for experiences from people who have actually tried it, not just read some blogs.

I think the articles that have been cited thus far are more than "reading some blogs". In addition, the time spent here and gathering data from a wide variety of information does point out some of the deficiencies of a treatment that you claim to be effective yet you state, "When doing AK, I have never dropped any other course of treatment that has been effective, this episode oxygen, showers and Zomig are the charm, but AK works parallel to my other doctors' work."

So which is working? the conventional meds that you choose to denigrate? or the virtuous AK that you seem to extol?

If you believe it has shortened your cycles then that is one thing, but also know that many sufferers deal with varied lengths in cycles throughout our lives. I used to be able to set a calendar by my cycle -- not anymore. No patterns exists anymore other than it sucking whenever it comes.

Chris, that is the most genuine post yet on AK. The guy I tried was very convincing, but the therapy still fell short of anything I would consider helpful for my chronic CH.

Best, Roland.

fly gas wrote on Dec 8^th, 2008 at 1:27pm:

Wildhaus, Applied Kinesiology simply is a method of testing the body for allergies, and/or nerve, organ or muscle peculiarities. My doctor uses touch or acupressure to test for nerve and muscle, and tests about 400 substances on my body for allergies or deficiencies, using a ceramic magnet at three receptor points on the body. The current from the poles of the magnet are supposed to accelerate the electron flow from the potential allergens. A positive will cause a distinct loss of strength, he has me push against his hand, and my hand just goes backwards if I test positive. He uses deeper tests to root out false positives, and after analyzing results, he tries to fix any diagnosed problems, usually with acupressure, diet therapies and occasionally supplements. As opposed to most CH therapies whose goal is to contain the pain, AK as I understand it tries to find root causes why the body is allowing this pain to come out again, and then heal the problems, allowing the body to get back to a non episode like state of health, ergo heal itself so to speak. When doing AK, I have never dropped any other course of treatment that has been effective, this episode oxygen, showers and Zomig are the charm, but AK works parallel to my other doctors' work. Chris

Chris, Tks, I will take it to the pain Klink in KSSG (Kanton Spital St. Gallen, Switzerland) and talk it over with the Pain clinic Dr's, they are very open for alternative medicine! as well as the Dr's at the endocrinological institute at KSSG.... and see what they have to say….. I am currently treated with the ONS (Occipital nerve stimulator) but I am interested in any type of therapy, and I do pass it on to my treating Drs. they are very interested in any bit and piece of Info. I did pass (even) the info about the soft drink containing Caffeine…  some thing they have found amusing, but interesting….. and looking for plausible related information to explain the positive effect!

Michael

If I haven't said before, my experience with AK was that after 25 years of totally drug resistant CH, 21 years ago, I looked up an acupuncturist, who was also licensed in AK. I had been suffering an episode for almost a year, and on the second vivit, I had a small precursor walking out of the office. Then the Episode stopped.
Since then, over 21 years, the episodes that averaged maybe 4-6 months up, and were laced with a lot of 8-10 headaches, now average 2-6 weeks, and are generally 2-6's.

I don't claim that AK did anything.
I don't claim that it worked anything without she showers, oxygen and other therapies I used.
It could just be luck, or timing of a change in my cycles.
All I claim is that this is my own individual experience, but it is factual.

All I'm doing is asking if anyone else has had any experience with AK.

All I'm suggesting is that if we share our experiences and keep our opinions to ourselves, this would be a far more inteligent thread.

Heck, if I read any of the "papers" quoted in post's, I'd be running the other way, but  I thank God I didn't.

Sorry I'm confused. Now you say: "I don't claim that AK did anything."

You did infer that AK was what changed your cluster headache.

You said:
"I walked in after an almost year long episode, (thought I had become chronic), and after a long workup, two days later he did some work on me, and leaving the office I had a precursor, and that was it, the episode stopped dead in its tracks."

What is the question then?

fly gas wrote on Dec 8^th, 2008 at 2:11pm:

All I'm suggesting is that if we ...keep our opinions to ourselves, this would be a far more inteligent thread.

Have you read your opinions?

What's funny is, when you post a link, footnote, resource, or study, it is used in an authoritative and substantive referenced manner, a better explanation.


fly gas wrote on Dec 6^th, 2008 at 8:40am:

I also have my opinions on him, but someone beat me to it, check: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE This guy...

fly gas wrote on Dec 6^th, 2008 at 8:40am:

Wiki links to a number of studies pro and con, a bit more balanced and non judgmental,

fly gas wrote on Dec 6^th, 2008 at 3:00pm:

The American Chiropractic Assn is a major proponent of AK. They state...

fly gas wrote on Dec 8^th, 2008 at 8:18am:

like the American Chiro Assn START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE According to the American Chiropractic Association,...

fly gas wrote on Dec 8^th, 2008 at 8:18am:

studies have been presented, a few positive ones for balance incl: Perot C, Meldener R, Goubel F (1991). "Objective measurement of proprioceptive technique consequences on muscular maximal voluntary contraction during manual muscle testing". Agressologie 32 (10 Spec No): 471-4. PMID 1844106. Frost, Robert, Applied Kinesiology: A Training Manual and Reference Book of Basic Priciples and Practices', p. 4, North Atlantic Books, 2002. available online. Schmitt WH, Leisman G (December 1998). "Correlation of applied kinesiology muscle testing findings with serum immunoglobulin levels for food allergies". Int. J. Neurosci. 96 (3-4): 237-44. PMID 10069623.

fly gas wrote on Dec 8^th, 2008 at 8:18am:

I did get reading some of these, is that AK is a pretty much...

fly gas wrote on Dec 8^th, 2008 at 1:27pm:

better explanations can be found at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE but as this is the site of the AK college, it is offered as a resource only.

But when someone else posts a link or, addresses the same link as you, it is:


fly gas wrote on Dec 8^th, 2008 at 12:27pm:

bizarre, debunked  internet sources.

fly gas wrote on Dec 6^th, 2008 at 3:00pm:

mindless regurgitation

fly gas wrote on Dec 8^th, 2008 at 11:06am:

antiquated studies

fly gas wrote on Dec 8^th, 2008 at 12:50pm:

silly arguments, meritless blogs,

fly gas wrote on Dec 8^th, 2008 at 1:27pm:

some blogs.

fly gas wrote on Dec 8^th, 2008 at 8:18am:

I could care less about your studies.

fly gas wrote on Dec 6^th, 2008 at 8:40am:

I could care less what average people ...say about AK.

Is it because when someone else posts a link, or the same link you mentioned, they are average people and you are not?


I saw some advice given earlier in the thread, how about if you read this for yourself.


fly gas wrote on Dec 8^th, 2008 at 11:06am:

Who do some people think they are? Stop treating everyone on the list like they are morons,

Dear Kevin,

I'm sorry, your last post is beyond me. You are misquoting, twisting,
and without any coherant thread. Either you don't understand what I'm writing, or you choose to ignore it and go on with your phobic diatribe.
Either way, you are entitled to your thoughts, as I am to mine.

I stand by everything I have written.

I hope this blather doesn't get in the way or people at least looking at AK,
which is clearly your intent, for whatever your reasons.

Good Day!

This is not the first time this type of treatment has come up. If it works for you great. If someone likes to try it great. Some will disagree, great. Drive on. This blather is what I consider open discussion. Simply take what you want and leave the rest.
all the best
the bb [smiley=watchdrama8jm.gif]

fly gas wrote on Dec 8^th, 2008 at 4:36pm:

I'm sorry, your last post is beyond me. You are misquoting, twisting, and without any coherant thread. Either you don't understand what I'm writing, or you choose to ignore it and go on with your phobic diatribe.

How can your own opinions be beyond you?  You can point out where I've misquoted and twisted for more constructive criticism.  

Well, without understanding or choosing to ignore that last post, you are still able to come up with a summing dismissive opinion -- "phobic diatribe".  It fits nicely along side your others in that last post also, why didn't you use that one earlier.  Damn.  Good one.

Yea, what they said... [smiley=watchdrama8jm.gif]

Could it be a new instance of CH-Tom?


                       [smiley=smokin.gif]

AlienSpaceGuy wrote on Dec 8^th, 2008 at 6:38pm:

Could it be a new instance of CH-Tom?                        [smiley=smokin.gif]

    Tom wouldn't use a ceramic magnet.

                Kinder gentler Potter

Potter wrote on Dec 8^th, 2008 at 6:49pm:

Tom wouldn't use a ceramic magnet.              Kinder gentler Potter

It’s an energy magnet Potter, you know like the ones they find off Bimini Island. There’s magical power in dem… [smiley=bow.gif]

Rolo… [smiley=sleep.gif]

Edit to add:

Chris wrote:


Quote:

share our experiences and keep our opinions to ourselves

The last time I checked experiences are based on ones opinions of the environment that spawned them… :-/

Way back in the dark ages, some folks came to ch.com with the suggestion that they could control their attacks with something new. They had strange names like PinkShark Mark, Flash and even Q chimed in. They gained a few followers and the villagers lit torches and screamed obscenities at the heretics.

In desperation, more people began to try their new methods and found that there just might be something to this………….except for the guy who did it wrong  ;)

I’m NOT saying that AK is good, or even has any potential. I just hate to see the villagers lighting those damn torches at the sound of a single lost coyote in the distance.

Respectfully,

Marc

Marc,
I make here some fine differences:

Sure, on first sight Flash's method looked crazy, and it met the full rejection of the subjects of the DEA. But in the light of the parentage of LSD, its chemical similarity to serotonin, the reports on trial for meegraine (and even CH), the more investigating minds found it worthwhile a closer look. Furthermore, there was no commercial interest at all involved.

On the other hand, reading about kinesiology is a hair-raising experience, with all these assumptions building on shaky foundations I must conclude: Quackery. Furthermore, there is a multi G$ business involved.

In my esteemed opinion, kinesiology belongs into the same pot as aromatherapy, Boji stones, homeopathy, palmist scams, astrology, iris diagnostic and all the other health frauds. They only slim your wallet in exchange to a possible placebo effect.

Someone defending fervently one of these just sets off an alarm for me.  



                       [smiley=smokin.gif]




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

Mark,

I remember when the associate I spoke of earlier (who suffered from stress HA’s) referred me to one of the top 10 here in town. The guy gave me two stones to hold in my hands while he (in a hypnotic fashion) asked me to concentrate on my healing energy as he wiped the bad energy from my arms and legs with his hands. Not only did I feel violated but my wallet felt liberated… Oh what a feeling you get when you satisfy someone else’s wish for you to heal. I go through this manor of treatment vibes from my mother all the time. She is a holistic guru supporter who spreads the word far too often for me…

Roland. ;)

AlienSpaceGuy wrote on Dec 8^th, 2008 at 10:09pm:

.... In my esteemed opinion, kinesiology belongs into the same pot as aromatherapy, Boji stones, homeopathy, palmist scams, astrology, iris diagnostic and all the other health frauds. They only slim your wallet in exchange to a possible placebo effect.

Actually, aromatherapy shouldn't be in the same category as the others - most of the substances they use have pharmacological activity - lavender and rose, for example, have measurable effects on brainwaves and neurotransmitters when inhaled or rubbed on the skin.  The same for camphor, pine, and other oils. The strange thing about aromatherapy is they limit themselves to distilled oils that smell.  

monty,
Camphor surely has a really pungent "aroma", and it has its place in the bag of a sport physiotherapist.

But

Quote:

from START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ... They are alleged to contain hormones, vitamins, antibiotics, and antiseptics and to represent the "life force," "spirit," or "soul" of the plant and Aroma Vera, Inc., of Los Angeles, has falsely claimed that "essential oils have the power to purify the air we breathe while they relax, stimulate, soothe or sharpen our senses . . . a wonderful antidote to the air pollution and 'scentsory' imbalance of modern life." It also claims that inhaling the scents "balances the biological background," "revitalizes the cells," and produces a "strong energizing effect on the sympathetic nervous system."

In my book, clearly claims from the quack corner.

BTW, aromatherapy products grossed about $59 million in 1995 and $105 million in 1996. Today it's probably in the G$ range.


                 [smiley=smokin.gif]

Well I’m open to anything twice but when I tried it 4 yrs ago I believe it was $135 per session… If there was some substanciated proof that I would be pain free for 6 weeks I would try it again. I assume if I’m going to save $135 on O2, I guess it’s a even swap?...Rolo... :-/

Thanks to a few of you for some really good perspective, BB especially.

As it seems a lot of us are at least looking at alternative medicine parallel with whatever else we are doing, how's this for an idea?

If anyone out there is currently going to an alternative medicine multi practitioner CLINIC, How about asking your current practitioner about their thoughts and recommendations on AK and if it is worth a try? If you choose to try it, maybe let everyone else know the outcome.

I emphasize CLINIC, because in any medicine, the quality of outcome is linked to the training, experience and basic talent of the practitioner(s), be it an MD, hospital, surgical practice or whomever. Having a group of practitioners, arguably suggests a better outcome, as they seem to keep each other up on things, have more time as a body to read all the latest research, and generally bring more to the table with varying backgrounds, specialties, and disciplines.

For my own perspective, I reread a bunch of the sites previously mentioned. The very first one offered, "Quackwatch" was not all that positive, but had one interesting set of numbers, albeit 10+ years out of date, on the prevalence of AK in the Chiropractic community:

Subsequent NBCE surveys found percentages of 31% in Canada (1992) [2], 60% in Australia (1993) [3], 72% in New Zealand (1993) [3], and 43% in the United States (1998) [4].

They mention the use of AK by MD's, Dentists etc, but can not quantify the numbers.

Most all the material out there seems to have some bias, we all have bias, but it occurs, we're probably talking tens of thousands of practitioners, and almost a half century of practicing. Perhaps one of us has a broader perspective that this entire group, or they think they do, I can respect that. Maybe every single one of these people has been hoodwinked, which is also a possibility.

Maybe, just maybe though, there is something here of substance, a small spark, that might be of interest or help to at least some CH sufferers.

I do admit my bias. I believe it has helped me, and continues to help, now for 21 years. I may be unique among all CH, maybe not.

However, I do not have the insufferable ego to suggest ANYONE try it. I do fail to see where others feel free to denigrate it for whatever reasons, and suggest the opposite, although their motives might be, and almost certainly are utterly pure.

I do suggest that people do their own research, and ask questions of their current health care providers. Then, as with any potential CH course of action, make up your own minds, using the brains God gave you, and the best information and advice you can lay your hands on.

Oh yeah, good or bad, let us know.  

Fly, maybe you just got off on the wrong foot. Tell us a little about yourself. When you first started having them, what you do for a living, where you live etc.

That usually is how a new poster introduces himself. Maybe that will help.

Chris, the thing I don’t understand is how you can form a balanced opinion of AK when you discount the first hand contributions of people who have tried it with failure? The one or two people who you say have had success with it have slanted your opinion so as to imply we should all run out and try it. You won’t catch many fish here without addressing the nay sayers concerns. Every time you disregard the failures, you are exemplifying them. I find your fervor on this to be of pure self indulgence. Caveat Emptor!

Rolo,
I don't discount any experiences, think we're up to thre negative, two positives. In my wildest dreams, AK might help a few of us, that's why i asked the question. If I'm unique, OK, if a few people find relief, then I'm a happy camper. If there's any fervor, it's just that it did seem to help me, along with a lot of other things that helped to a lesser degree. Most the others have been covered, I don't have a lot to add.

Quote:

Tell us a little about yourself. When you first started having them, what you do for a living, where you live etc. That usually is how a new poster introduces himself. Maybe that will help.

fly gas wrote on Dec 9^th, 2008 at 10:27am:

Rolo, I don't discount any experiences, think we're up to thre negative, two positives. In my wildest dreams, AK might help a few of us, that's why i asked the question. If I'm unique, OK, if a few people find relief, then I'm a happy camper. If there's any fervor, it's just that it did seem to help me, along with a lot of other things that helped to a lesser degree. Most the others have been covered, I don't have a lot to add.

Nope, you're not unique. You're consistent with many others that have come before you to present information on a subject, and then, if criticized or questioned, blame everything else for the inability of their information to stand on its own.

We've all seen a wide variety of things discussed here. Who would think that "Red Bull" would be discussed as a serious element of the CH'ers arsenal? But, yes it was brought up, bantied about, tried by a few and then momentum grew as people realized that it wasn't the panacea but in some cases it was a help.

Step away from the subject for awhile. Read others. See threads about Kudzu, RC Seeds, go to clusterbusters.com and you can find how open minds are that exist here.

If you keep hammering away on this you'll end up getting up and leaving. Step away..... read up.

I have looked deeper into this item, with the help of some more knowledgeable persons then I am  and the reaction was somewhat very sceptical, mildly said…… I would dear and say, from what I understand now, Ueli is right, it is more likely to be:


Quote:

a hair-raising experience, with all these assumptions building on shaky foundations I must conclude: Quackery. Furthermore, there is a multi G$ business involved.

In the spirtit of the “new” CH.com I will wish all the one’s that wish to use it good luck, and to the one that have positive resualts, I am happy for you!
But
I find it very suspect bal method! and feel it is rather a “nice” way to make money on the back of the sufferers!

And therefore I am out of this discussion, I fell we are discussing a futile matter.

Michael

Jimi,
introduction, bad starts, maybe you have something there.
I'm Chris,
live in upstate NY, but was born in Stockholm Sweden.
After many years running corporations, I have settled into buying and selling rare books, and also, out of clusters, work as a commercial pilot in hot air and helium balloons, very glad to be out of the corporate world. We also do historical research in aviation, I'm particularly proud of a show last year on Civil War Ballooning, Man, Moment and Machine in the Hist channel, (I'm really not as ugly as I appear on camera), also a History Detectives segment on PBS, same subject.
I also ride, used to Club ride, but I'm a loner now. Up here in the Adirondacks, nice area to be a loner, at least 6 months a year.
First cluster was about 1972, out of Viet Nam for a couple of years, there were a few head traumas that may have contributed somewhat.
My CH is episodic, although they could go on almost a year, used to be solid tens a lot of the time, a lot of howling, holes in the wall and mistakes.
I am probably as sensitive to bad medicine as most. I have tried most everything, the headaches were totally drug resistant. My favorite standard approach was back when, as the pain radiated from the upper left jaw area, a local dentist talked me into root canals and caps on every molar on the left side, top and bottom. Ouchcakes!!! Another time, a standard clinic tried aggressive drug therapy, mixed. Think I was up to $1,800 bucks of drugs one month, lithium, Caffergot, Acthar IV, bunch of others, to no avail. Hell of a buzz all the time, just no relief.
Got onto AK when an elderly aunt shamed me into trying acupuncture. Back then I was conservative, thought all alternative medicine was hooey, had never tried any of it. Anyway, the acupuncture doc was also an AK practitioner, this was 1987 or so, so I said what the heck, he was a nice guy, smart as the getout, and actually knew about CH, so I said do your best.
While I may be unique, or while my clusters may have been coincidentally changing at that time,  it did seem to work. I still use other methods to beat back individual clusters in episode, hot showers and Oxygen seem to help, also last two episodes, some of the Triptans seem to quash individual headaches. I see him when a new episode starts, parallel to these other treatments, and since 1987, my headaches have been markedly less intense, and the number and length of episodes have dropped significantly.
Don't claim to be the brightest bulb on the Christmas tree. This current episode started when I was walking around the back of a truck recovery vehicle and my attention got diverted by a lovely old backhoe bucket, (I'm looking for one for my Ford 4500), and the fixed hook caught me square in the middle of my forehead. A lot of blood and a week later, guess who pops up? My old friend CH.
Anyway, c'est moi.
I do get forceful in my arguments. I am quite research orientated, and habitually do serious studying before I commit to words or camera. Before I work on a documentary or article, I want to have my research in order. Some of our work is widely disseminated, like to millions, not the place to make a lazy boo-boo, eh?
So, I guess if I offended anyone's sensibilities, apologies are in order, if was certainly not my intent.
After God knows how many clusters, drugs and doctors, I am at the point where I support most any experiments or queries into potential avenues of cure. As I understand the state of the art, some things work for some people, but nothing works for all. The idea is to keep trying things until you find something that works for your individual case. After one explores all standard approaches, which I think I have, it makes sense to keep trying with non standard or alternative approaches, along with the standard ones, I am still under an MD's care. The only other real option seems to be just giving up.
Perhaps that is my real CH mantra,
Never, never, never, never, never give up!

Thank you Chris. Nice to meet you and welcome.

fly gas wrote on Dec 9^th, 2008 at 11:40am:

Civil War Ballooning, Man, Moment and Machine in the Hist channel,

The French import, silky and hot air.  ;)  
An old Jacques/Montgolfier story of strange beginnings at Champ de Mars.  Twelve feet in diameter, rose to 7000 feet, landed 12 miles away.  It was stabbed and beaten with rocks by locals until it emitted a death rattle.     :)



Quote:

...also a History Detectives segment on PBS, same subject.

So, did you find Mysterious Island?    j/k, didn't catch the show.


What kind of books?

AlienSpaceGuy wrote on Dec 8^th, 2008 at 11:43pm:

monty, Camphor surely has a really pungent "aroma", and it has its place in the bag of a sport physiotherapist. But Quote: from START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ... They are alleged to contain hormones, vitamins, antibiotics, and antiseptics and to represent the "life force," "spirit," or "soul" of the plant and Aroma Vera, Inc., of Los Angeles, has falsely claimed that "essential oils have the power to purify the air we breathe while they relax, stimulate, soothe or sharpen our senses . . . a wonderful antidote to the air pollution and 'scentsory' imbalance of modern life." It also claims that inhaling the scents "balances the biological background," "revitalizes the cells," and produces a "strong energizing effect on the sympathetic nervous system." In my book, clearly claims from the quack corner. BTW, aromatherapy products grossed about $59 million in 1995 and $105 million in 1996. Today it's probably in the G$ range.                  [smiley=smokin.gif]

The fact that some aromatherapists (or herbalists, or dentists) make obviously ridiculous claims doesn't mean that all aromatherpay, herbalism, or dentalism is quackery.

Also, effects of various chemicals used in aromatherapy on the nervous system (sympathetic, parasympathetic) have been adequately documented.  

I was bottling 20 liters of wine last night and pondering the difference between the traditional 'noses' of wine and the chemists ... the noses have a strange, non-scientific vocabulary for describing the smell, taste, mouth feel etc of wine.  Science can often help with the process (Thank you, Monsieur Pasteur!) but at the end of the day, science is not the only way to deal with the experience, and the non-scientific framework is often valid and valuable.  I believe that some aromatherapy concepts are similar - they are describing the effects of various chemicals using a vocabulary that is squishy, but not always illusory. I have read that the American wine industry didn't develop in the 1970s because they had a scientific approach to various chemicals in the vat, but no real understanding of wine - the improvements came when they loosened up a bit on their test tubes and started thinking in traditional squishy metaphors in addition to parts per million.

Your dollar numbers for aromatherapy might seem large, but they pale next to the everyday use of fragrance, which is around $35-$50 billion according to some figures.

Ah yes, our friends in France,
they do many things well, but I am of the opinion
the fire balloon is one of their finest accomplishments,
and two months later, the gas balloon, or Charliere'.
The first was indeed met with rocks and pitchforks, obviously it was
sent by the devil himself, and they killed it.
Wise decision, look where balloons have gotten us.
Silly people like me, floating in the currents, getting in the way of perfectly good aeroplanes.  
Have a good story about cattle sticks, pitchforks and natives,
flying way out in India, prob not the forum to tell it in. Darn! Its a good one.
Alas, for Hist Detectives we found no Mysterious Verneian Island,
actually were trying to authenticate some Civil War fabric,
but using low level X Ray spectography,
found it was not what it was supposed to be. Quel Domage,
but it was a nice piece of history, and the producers did a good job with the segment.
Most my books are pre 1900, around science and technology, history
a close second, especially the history of flight.
Still, I am a sucker for any good book, have novels, juvenalia,
voo doo, orientalia, poetry, military, darn close to anything that catches my interest.
Anyway, don't get me started on books, I do love them.
Still, a fantastic business. The average person who collects this type of book is fascinating. Even through the convolutions of internet wrt bookselling, it is a pleasure to find a good home for a special book,  the personal contacts are many, and generally very pleasant.

I have actually been going through a lot of old posts since I found this site, looking for new ideas, trying to get the lay of the land. It was always my practice when I joined a board of directors to sit back the first two meetings and shut up, draw in on the unique dynamics, read past minutes, see how the players play before I added whatever they were paying me to add.

Perhaps a good idea here, my wife tells me I should chill out.

Whatever, I hope my writings will be accepted in the spirit offered, and given whatever consideration they deserve.

I always ask people when they don't agree with me, to come up with a better idea than mine.

In this spirit, for those of us who have exhausted every avenue we can see in standard medical practice, is there a line of alternative medicine that can be recommended? Should we just keep going to one MD after another, hoping that one will have the magic bullet? I can guarantee that I can shoot down any form of alternative medicine with non peer reviewed literature, so can most anyone, but I have to keep focusing on the positive. That is my gauntlet du jour, maybe amongst us we can come up some things that will actually help some people, not all, but some.

I guess my question is, where do we go from here?

.

fly gas wrote on Dec 9^th, 2008 at 2:18pm:

I guess my question is, where do we go from here? .

Settle in, we're expecting a bumpy ride highlighted by recurring need to row like hell, punctuated by periods of exquisite pain.
;)

fly gas wrote on Dec 6^th, 2008 at 8:40am:

Yeah, I've read that one. A lot of cites of very old studies, some more recent and positive ones ignored. The author is a retired psychologist, who has made a lot of bucks on his opinions. I don't know his qualifications judging anything in neurology or AK, and I also have my opinions on him, but someone beat me to it, check: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE This guy points up the need to question ALL meds and doctors and studies, and skin deep tapping on google just doesn't cut it. Wiki links to a number of studies pro and con, a bit more balanced and non judgmental, but who knows what is valid and not valid these days. I am reminded of acupuncture. Standard medical practice was aware of it for centuries. We saw practitioners on china doing open brain operations on patients with only a few needles for anesthesia, but Western doctors still poop on that also. Heck, it only took them 40 years to tell us that smoking was bad for us, and they still are arguing about PCB's, Agent Orange and a raft of other things, not to mention the cornucopia of drugs and operations they have embraced that over the years have killed or maimed millions. Part of the glitch, is the concept of rigorous scientific proof. Esp with clusters, the idea of an experiment that can be repeated anywhere, by anyone, showing the same results is not valid. All clusters are different, as are the sufferers, so there is a variable injected by definition that derails standard scientific inquiry. the guys experimenting with hallucinogens run in to the same problem, looks promising, but hard to design a scientifically valid experiment. Anyway, I could care less what average people or internet gurus say about AK. My question is if there is any experience, pro or con, that my fellow CH sufferers have had. I don't have anything for or against medicine at any practice, I'm not that smart, and I know there are good and bad practitioners in every discipline. It is just that this one doc and brand of medicine had a stunning effect on me, I have to wonder it anyone else has had any experience and if this is something we should look at. I must admit, I have a prejudiced idea at this point that we probably should look at AK for possible relief for some CH sufferers, I could be wrong. With all the scientific studies in the world, all I can see is 21 years of finally managing my pain. Not very smart I am, eh?

This is such a touching piece that one cannot but hail it in support and approval. I stand in amazement everyday at the awesome fraud perpetrated on the populace by the unholy alliance of the drug companies and orthodox medical practitioners whom the former control like dogs on leashes.

Anything today that does not in any way contribute to their prospects of increased revenue is immediately discouraged and frowned upon, if not suppressed and opposed by all means summonable. This is why we NEVER hear of cures from them for any condition but rather only of ‘newer drugs’ they’ve just released.

Anyone today who fails to see what is going on for what it truly is needs to wake up. There are several very helpful and proven health aids out there today that most people never get to hear of on account of being poor income prospects for the powers that be either because (1) they are cheap or (2) they are so effective that in time they must reduce drastically the numbers of sufferers, and so of income sources for them.

A good example in this wise are the energy balancing devices, notably Ondamed, (see START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)  which has been recording such dramatic results as have, nothing short of, dumbfounded orthodox practitioners. In fact, it is as if the individuals who have benefited most from these devices are just those that orthodox medicine has most woefully failed to help.

They were driven to discover these devices because they had reached the ends of their tethers and had become willing to try anything; not because they were recommended by their physicians, many of whom remain in unblissful ignorance of their existence and the remarkable help they hold forth for humanity.

It is refreshing to happen upon the few scientists today who have remained unshackled by the influence of the pharmaceutical companies and have been able to publish, in spite of all restraints, their findings on major aspects of health.

They are the ones who have let it be known that every ailment, CH not being the least of them, is a result of an energy imbalance somewhere in the body. Find the location of and correct that imbalance and you unfailingly let in relief for the symptoms, whichever they may be.

The prospects that this earth-shaking principle holds for us all bring tears to the eyes when one sees what enormous expense of human as well as financial resources are ploughed into methods and processes that remain questionable at best and outright condemnable if one is to call a spade a spade.

Time is always on the side of Truth though. And so on time we must rely for an eventual restoration of sanity into what we inappropriately refer to everywhere today as ‘healthcare’.

Dally,

Your first post here is to redeem what most of us consider through experience to be quackery…

Hmmmmmmmmmmmmmm????????????? Caveat Emptor!!!

Add; The only thing in the pseudo sciences that has helped my clusters is biofeedback pain management and that is something you can get on a CD for $49.99. PFW’s

Yes, a strange first post. Can you tell us a little about yourself, your headaches, how long you have had them, where you from etc?

Wow, I'm blown away... So many ways I want to respond but just can't seem to figure out how.

  LMAO @ you Scott.  

Dally,

Do you know what energy imbalance (Applied Kinesiology) and Snow white have in common?


Both are fairy tales!

Michael

seasonalboomer wrote on Dec 12^th, 2008 at 2:21pm:

Wow, I'm blown away... So many ways I want to respond but just can't seem to figure out how.

You just gotta balance your energy.  It'll come to you.   ;)

Best,

George

Hi all,

For those who might be interested, I am in private PM conversation with Flygas to learn more about his experience with acupuncture, AK, diet modification and chiro treatment for CH. I am hoping that his practitioner will be willing to talk to me and explain to me how he thought these things might have worked for CH, at least in Flygas's case. Hopefully then I will be able to evaluate the claim on a scientific basis, using anatomy, biology and physiology.

So far, what I have learnt is that Flygas 's practitioner was not sure if the treatments would work either but  he was willing to try. In effect, it was a trial and error thing based on the practitioner's knowledge and experience. Flygas found some relief so he kept coming back, which is understandable. I guess since neither he nor the practitioner really knew how and why the treatments seemed to work, he was keen to find out if someone else has had similar experience, to validate it for himself. I really dont think Flygas is trying to be provocative.

Flygas has posted on the Board that the whole treatment regime is not just AK or chiro. It is a combination of everything from allergy testing, diet modification, lifestyle review and muscle reconditioning,etc. Acupuncture was used to speed up the process as one needed several sessions for the effects to build up. I am not sure yet what role does AK play in this treatment regime. I hope to find out. Personally I know next to nothing about AK but I am willing to learn.

Flygas has also posted that since starting on these treatments, his attack frequency has reduced. He still has the headaches but they are now more managable and the cycle shorter. This is after 20 years of relentlous high cycles. We all know that the beast morphes. Like some people have shared here, sometimes it just stops or reduces by itself, without any treatment of any sort. Is this the beast morphing or is this the treatment working for Flygas? I guess we will never know for sure but I would like to venture forth some thoughts on the subject, in my next post.

We all know that CH is caused by a malfunctioning hypothalamus. The main function is to maintain homeopathy ie the delicate balance of multiple systems and organs in the body, from blood pressure to temperature to sleep patterns. It does so mostly via various neurotransmitters, such as serotonin, histamine, adrenaline and calcium,etc. Most medication for CH work by influencing these neurotransmitters.

Now we also know that serotonin is not just in the brain, it is found abundantly in the digestive systems. Certain food has been known to trigger CH and we all know histamine released by allergies can play harvoc with one's headches. My ( scientific ) guess here is that Flygas's practitioner, when testing for allergy and advising diet modification, happened to address the effects of digestive serotonin, histamine and other forms of electrolyes, which might have helped the hypothalamus in some ways.

If a person does not look after himself and is in poor health, with bad diet, untreated allergies and have electrolyte/vitamin deficiency , these treatments could indeed make a difference. As expected, it would not cure CH, or stopping it all together, but it can help reducing the number and the intensity of the attacks, as seen in this case.

Secondly, we all know that muscle tension is a big problem during a cycle. When in severe pain, one cant help but tense up the body trying to cope with it. Doing this repeatedly and the muscles get into a knot, especially around the neck which can pull onto the muscles of the skull and face. The trigeminal nerve ( the culprit causing CH pain ) has branches to the facial and skull muscles. Irritating these branches and one risks irritating the whole nerve.

Therefore if a CHer is particularly prone to muscle tension, chiro and/or acupuncture can help reducing those, which in turn, might reduce the intensity of the attacks. Again, no cure , no prevention or abortion of CH is possible here.

I dont know enough about AK to know how it works in this case, but I guess it might work along similar lines. I hope to learn more from Flygas's practitioner on this and I will certainly post here to share with everyone.

In summary, and please Flygas correct me if I am wrong, neither you nor your practitioner really knew how the treatments worked. Its trial and error and so far it seems to help. Your CH attacks are less in number and less in intensity and the cycles are shorter. How much was due to the natural morphing ability of the beast, based on age and time alone, and how much was due to the treatment, I dont think anyone can say for sure. There is scientific basis as to why and how the combination of acupuncture, allergy control, muscle reconditioning and diet modification may have helped, but I have yet to learn from your practitioner if AK or chiro alone will do anything for CH.

My conclusion is that if you have CH and you are in poor physical health, suffering from untreated allergies, have a poor diet, and experience a lot of muscle tension, then by all mean try out this treatment combo, bearing in mind that acupuncture was used to speed up the balancing process and chiro helped mainly with muscular pain and tension.

I stand by my previous statement that I dont believe acupuncture or chiro treatment alone will do much for CH, unless Flygas's practitioner can teach me something new. As to AK, I need to learn more about it before I can say anything else.

I hope this helps.

Dally and Ann,

first, my thanks for the kind posts, it was this level of discourse I was most hoping for when I first posted. I have to learn patience.

My only real comment, is that AK is as much a diagnostic tool as anything. IF one is allergic to something, then diet modifications are in order, likewise supplements for deficiencies. IF muscles or joints are distended, they should be addressed. IF other things are out of balance, organs, glands, nerve pathways or the like, that should be addressed.

My experiences might certainly be casual, or luck or whatever.
Still, it is hard to see where this type of multi disciplined approach working on the longer term overall body's health,
along with parallel more standard treatment for the individual headaches can hurt. Quite the opposite. Financially, the entire course with my practitioner, costs less than one month's prescription for only one of the drugs I take.

I'll will try to put Ann and my Doc together as soon as possible, and
welcome her overview.

Thanks again for the kind words everyone, they are appreciated.

Chris

fly gas wrote on Dec 12^th, 2008 at 9:21pm:

first, my thanks for the kind posts, it was this level of discourse I was most hoping for when I first posted. I have to learn patience.

[smiley=nopity.gif]

Thanks Boomer,

Right according to the book. Utterly predictable.

Wow, I'm blown away... So many ways I want to respond but just can't seem to figure out how.

And now the drama and victimology phase of your little play.
Completely consistent with a particular M.O.

For some reason I'm attracted to reading posts like this. Maybe not attracted, but that same feeling you get when you hear someone say something really stupid and you pause to hear what is going to come next.

Do you need a hug?

I've already guessed your next response

(with apologies to the original author of these
pithy little repartees, I'm not my eloquent self
right this minute, really nasty one...Chris)

Ohforpetessake.   ::)

fly gas wrote on Dec 13^th, 2008 at 8:04pm:

Thanks Boomer, Right according to the book. Utterly predictable. And he is right. Wow, I'm blown away... So many ways I want to respond but just can't seem to figure out how. I am too because you just don't get it. And now the drama and victimology phase of your little play. Completely consistent with a particular M.O. Been going for a week now. For some reason I'm attracted to reading posts like this. Maybe not attracted, but that same feeling you get when you hear someone say something really stupid and you pause to hear what is going to come next. Same thing next. Do you need a hug? No, I'm working the O2 valve for every breath. I've already guessed your next response Same old AK Philosophy. (I'm not my eloquent self right this minute, Chris) No, you are not.

Rolo... [smiley=watchdrama8jm.gif]

fly gas wrote on Dec 13^th, 2008 at 8:04pm:

Thanks Boomer

You're welcome.

But before I finish let me make sure I put the words "APPLIED KINESIOLOGY" into the post so that you can feel the level of discourse met your expectations/needs. It is, apparently, all about your needs here on this thread.

Applied Kinesiology?

Interesting concept, can you explain it to the list?

fly gas wrote on Dec 13^th, 2008 at 8:58pm:

Applied Kinesiology? Interesting concept, can you explain it to the list?

I can explain it Chris, It’s a load of crap perpetuated by holistic wallet scrapers.

Ya know.....this thread is starting to get a tad old.

Racer1_NC wrote on Dec 13^th, 2008 at 9:30pm:

Ya know.....this thread is starting to get a tad old.

Ya think?

Maybe now this thread can slip into oblivion?

Quote:

Racer1_NC wrote on Yesterday at 21:30:54: Ya know.....this thread is starting to get a tad old.

Quote:

Posted by: Linda_Howell Posted on: Yesterday at 21:46:47 Maybe now this thread can slip into oblivion?

Linda / Bill (racer), I don’t see why would you want to stop this thread, I start to regard this thread as my daily read, as I do in the newspaper, at the end the comics, its just makes me laugh, the literary back and force, with the “hidden” innuendos, it is just simply fun to read….. and seems to get the outmost of the participants……


Michael

wildhaus wrote on Dec 9^th, 2008 at 11:26am:

it is rather a “nice” way to make money on the back of the sufferers! And therefore I am out of this discussion, I fell we are discussing a futile matter. Michael

Kevin, I do not join the course, the same way I do not write the comics in the newspaper, I simply have a good laugh……

Michael

Amusement can come and go.

I'm with you Michael, The daily interplay, and seeing the reactions pro and con is fascinating.

Also, doing site research is interesting, btw, nice job you and the others did on the O2 CH Abortive paper, people should just print that one off and give it to any doctor who balks at giving an O2 prescription.

Also interesting, if someone hasn't figured it out, to tap on individual names and go to the icon that displays their last 50 messages. Some people do seem to be on the attack most of the time, some who I was wondering about, seem to have some serious depth to them. Mea Culpa!

There was a suggestion in one thread to read the Dr Robbins page for research:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Certainly worth reading, if nothing else, to point out the lack of recent substantive research on CH.

One somewhat dated survey caught my attention, allow me to clip:

Eighty-three percent of survey respondents qualified as CH sufferers according to IHS criteria. However, diagnosis was delayed an average of 6.6 years from onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3 and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary MRI's or CT scans and four percent had unnecessary sinus or deviated septum surgery. We found that inappropriate medications such as propanolol, amitriptyline, and antibiotics were prescribed and that successful medications for CH such as Imitrex and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers which correlates with previously published data. Seventy-four percent stopped smoking in an attempt to improve their condition, however, only 3% experienced relief.

If I'm reading correctly, standard medical practice in year 2000, delayed CH treatment by an average of 6 years, and the average sufferer had to endure 4 misdiagnoses and see 4 doctors before someone got it right, with the majority of sufferers enduring ct's, mri's and ineffectatious courses of drug treatments, all, of course, were even given free by the providers, or at least given with a money back guarantee.

I have been challenged for my questioning of standard medicine, also "Pharm Bashing", perhaps rightly so. Perhaps though, I am not totally off the mark.

I also note a recurring thesis that all non standard medicine is simply a money gouging fraud. As I chop my pills into one quarters, grateful that the 1/4 seems to help my headaches, I note that the average cost of an entire course of treatment from my non standard practitioner, costs less than a single month's prescription, (and I have two prescriptions), less than any Cat Scan, MRI, Neurological workup, Headache Clinic or whatever.

Opposing any treatment simply on a cost basis, is an argument without merit. Go on, just tell me that a tank of Oxygen costs too much, we shouldn't use it.

Heck, well educated, well intentioned doctors misdiagnose, and deny even the most basic relief, like O2, all the time, look at the studies, go back and read the threads. I don't condemn them, it is a product of ignorance, and a system awash in billions of dollars, dominated by corporations, insurance forms  and HMO's, where it is easier to justify a cat scan than a bottle of oxygen.

If I have a fight here, I guess it is against ignorance. The ignorance of a new CH sufferer, who might not even know what they have, and certainly hasn't heard about the neat things we discuss on all these threads. The ignorance of individual doctors, a la the Robbins paper, who just haven't taken or don't have the time to study up, and don't have the humility to say "I don't know". Last, as one might infer, the ignorance of those who say "N0, no, no", when they might better be saying "I don't know, maybe?".

For those of you complaining the thread is getting old, PLEASE, there is no gun pointed at your head. There are other threads I find boring or shallow, but rather than try to censor and in effect denigrate them, I have a great new trick.

I don't read them any more.

God bless all the posters I've read over this period. Ranting, philosophical, in pain, challenging, argumentative, off the wall, whining, dictatorial,  they all have their places. Take them all with a grain of salt, believe them or don't believe them, but in the long run, we have to hope the average reader has the hutzpah to separate the crap from the petunias, and hopefully walk away with an occasional flower, while not smelling too bad. Correct me if I'm wrong, isn't there something in the Constitution about that, its sort of a very American concept.

Anyway, I'm in a great mood, 8 1/2 hours of sleep, sun is shining on all the damned ice on everything, God Awesome beautiful, and it's my boy's 12th birthday. Doesn't get too much better than that.

To all my new friends, Rolo, Jimi, Kevin, Boomer,Racer, Linda, Michael I can only wish you a PF day, and a few moments to stop and smell the roses, or petunias, or whatever good things come your way today.

Best,

Chris

fly gas wrote on Dec 6^th, 2008 at 7:27am:

...AK might be something we want to at least look at.  It might not have any validity for anyone else, but my question is if anyone else has tried it, what were your results, and is this something we should put in our bag of CH tricks either after everything else has failed, or, God forbid, as a primary treatment for CH?

wildhaus wrote on Dec 9^th, 2008 at 11:26am:

...it is rather a “nice” way to make money on the back of the sufferers! And therefore I am out of this discussion, I fell we are discussing a futile matter. Michael

fly gas wrote on Dec 14^th, 2008 at 10:19am:

I'm with you Michael, The daily interplay, and seeing the reactions pro and con is fascinating.

fly gas wrote on Dec 14^th, 2008 at 10:19am:

some who I was wondering about, seem to have some serious depth to them. Mea Culpa!

You can pretty much count on the fact that if someone has been here several years they aren't simply trolls or hanger's on, looking for fight. This community doesn't support such long term behavior. It's a straighten-up-and-fly-right kind of world here. Either pitch in and get serious about being a member of the community or quit stirring shit up every post.

I personally think Fly Gas and Annsie make some very valid points worth some serious consideration, yet many of you are hell bent on just shutting them down because as Seasonal Boomer says "It's a straighten-up-and-fly-right kind of world here. Either pitch in and get serious about being a member of the community or quit stirring shit up every post."

That is a sad commentary on a community of caring and empathetic people dealing with a lot of pain in their lives.

Perhaps for those that do not want to just talk about O2 and verapamil and Lithium, a separate new folder could be created in the Cluster Headache Help and Support section of the forum possibly entitled something like Personal Experiences with Alternative Therapies  This section could be for those intractable types that are looking to try anything to find pain relief, when regular medical science has failed them.

There should be a compassionate place for all CH people here IMO

Moderators...is this a possibility?


Paul

You are talking to the wrong people. This would be something that you would have to ask DJ about. He is the administrator.

You state that

Quote:

, yet many of you are hell bent on just shutting them down

and...

Quote:

That is a sad commentary on a community of caring and empathetic people dealing with a lot of pain in their lives.

When a new person comes in and makes a statement like that to a board that has been here 10 years, well you aren't gonna win friends and influence people.

Do you think that everything being discuseed here has never been discussed in the past, debated about, tried, reported on, accepted or rejected? None of this is new and if we have offended you then you can do one of two things. You can join us and grab an oar or you can go start your own site. This is my personal feeling about it.

As a Moderator if we were hellbent on shutting down this thread. If we wanted to lock it, we would have done so a long time ago.

If you’ve got the time for this Chris, Ive got the popcorn. [smiley=watchdrama8jm.gif]

fly gas, have you tried the Clusterbuster method?

"You are talking to the wrong people. This would be something that you would have to ask DJ about. He is the administrator." Thank you...maybe he will see this.

"well you aren't gonna win friends and influence people."..I am not running for political office

I believe it was a couple of moderators on this page of discussion that indicated that the discussion was getting a "tad old", and "Maybe now this thread can slip into oblivion?"

"if we have offended you" no...you missed my point

I was not looking to have the thread locked, just to have attention of the mods drawn to a point that i thought my be important to a few...that there may be merit in having a place somewhere to list other persons' positive experiences with alternative non traditional treatments of CH for those intractable sufferers that have been non responsive to traditional therapies....fly gas experience with his method would be one, chiropractic may be another, hormone replacement therapy may be another etc.

sorry for the inconvenience caused by introducing the idea in the midst of this thread....carry on


Paul

fly gas wrote on Dec 14^th, 2008 at 10:19am:

God bless all the posters I've read over this period. Ranting, philosophical, in pain, challenging, argumentative, off the wall, whining, dictatorial,  they all have their places. Take them all with a grain of salt, believe them or don't believe them, but in the long run, we have to hope the average reader has the hutzpah to separate the crap from the petunias, and hopefully walk away with an occasional flower, while not smelling too bad.

I'm not sure I agree with anything else you've said, but Bravo for this little gem. If we all agreed on everything, and our world was only filled with rainbows and unicorns and visions of sugarplums, it would be a boring existance.  :)

Well, K is still misquoting posts, boomer is firmly convinced he is in charge, but the idea of a separate category for alternative medicine is not a bad idea, darn good one in fact.

Why people who don't like what I write, keep coming back and reading it really escapes me. I guess my First Amendment idea didn't pass muster.

Perhaps some people have it that they are the only ones under the sun with the lofty intellects to separate the wheat from the chaff, and they are the only ones who can save us mortals from ourselves. Must be nice.........

I'm tired, I think the dead horse swings both ways.

Pixie, never tried clusterbusters. This episode is just under control, should it change for the worse, I'll probably give it a try. anyone ever try dried peyote buttons for CH? They used to be my favorite.........

fly gas wrote on Dec 14^th, 2008 at 5:35pm:

Why people who don't like what I write, keep coming back and reading it really escapes me.

Kevin_M wrote on Dec 8^th, 2008 at 12:46pm:

Please distinguish for us average people which are the bizarre and which have been debunked.

Kevin_M wrote on Dec 8^th, 2008 at 5:17pm:

You can point out where I've misquoted and twisted for more constructive criticism.

It's been six days.  Or is it just more convenient to see your own typed words: bizarre, debunked, and misquote.

Come on guys....................What do folks hope to achieve with by continuing with this pissing match? People have stated their positions many times already.

Do you REALLY think that you are going to change the other persons opinion? To most of us this seems like:


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

Marc

fly gas wrote on Dec 14^th, 2008 at 5:35pm:

boomer is firmly convinced he is in charge.....

I'm sorry...was there a question there?

As for the peyote button joke... check out clusterbusters.com
You'll find another world where, as you've fantasized, alternatives are discussed, and used successfully --- not just conjectured. THese people are the real deal, not some fantasizing jerkishness that you seem only to be able to partially imagine.

So get off your ass and put the work in. Do the reaearch. Try something that is working for others and get on with your CH journey. But get off my ass - I'm not your enemy - you are.

Scott

"What do folks hope to achieve with by continuing with this pissing match?"

Marc, fair question. I ask myself the same one; what is to be gained arguing a point against guys who's intellectual plateaus seem to top out at quotes from Quackwatch and how to use smiley faces playing violins.

I think the definition of internet troll is one who posts inflammatory posts, just to distract or derail a discussion.

As honestly as I can say it, I can only see two reasons I'm still here.

One, I have a personal experience that has helped me over the long term, that, if anyone looks at the header, I wondered if anyone else had tried. Three question marks in the header, I'm not trying to sell anything. As they say in the new visitor page, start out by asking a question. I have no ulterior motives, can't make a penny out of it, but
if anyone was interested, I thought I'd throw it out there. With 1600 readers in a bit over a week, even the resident genius's have to admit at least there's interest. Some readers are actually curious and supportive, and we're trying to get something together that might present a more scientific, presentation for them. God forbid, after this is all over, that I might help even one CH sufferer.

Second, and certainly not a noble reason, is that when someone attacks my ideas, or me, I will fight back with anything I have to fight with. Anyone with integrity, who believes in what they are saying, would do no less, at least that's how I was brought up.

I don't know, maybe also, this banter is therapeutic, put that down as reason 2 1/2.

Funny, but they'd attack me if I just faded off and let it be, they already have. They attack me if I defend my ideas, usually not adding to any dialog, just the type of comments that sadly troll up this whole thread, the ass, hooey, fraud, utterly predictable, blah blah smiley faced  ilk of comment.

I do scratch my head. The last post suggests I check clusterbusters.com, do my work. That's what I have to wade through.

I've been following the Harvard experiments for years, the field since the early 70's from it's flow from serious to "junk" science. Leary didn't do us any favors. Just my guess, but I was probably researching CH when this poster was researching his diapers. Nothing against being young, if you know what to do with it. He uses the word ass a few times. I could use the same word in a crafted response, what's the use?

Anyway, these CB.Com experiments, O2, most drugs and the like have been addressed many times, by many people. I know, I checked the historical posts before I started this post.

The only seemingly unique thing I had in my personal experience to share with "the most caring, compassionate, supportive family of cluster headache sufferers" (off the home page) was my twenty years with AK.

At this point I am only surprised by two things. Surprised that so few people have ever tried it, and surprised that a small group who have never tried it, are instant experts. I know the idea of trying to dial in your diet, and readjust all the muscles and body functions that CH whacks is heretical, and can't possibly help Ch in any way, but I am still waiting for the detractors to share their Curriculae Vitae with us. To be so certain of themselves, I'm curious what post graduate studies they attended after they got their MD's; their Board certifications will be a good guide so I can get off my butt, down to the library and read all the scholarly papers they have published in their trade Journals.

Such a talented group en masse, we are so lucky to have them on this thread.

O well, ask me an honest question, I'll give you an honest answer, as best I can.

Can't guarantee you'll like it, but at least I won't adorn it with smiley faces and clip art quotes, PROMISE!

Damn, 3:10 in the morning, one of those nights, maybe tomorrow will be better.

Good Night, hopefully,

Chris

[smiley=nopity.gif]

More drama. More playing the victim. More deflection.
That's how you roll...

Kevin_M wrote on Dec 14^th, 2008 at 6:18pm:

Or is it just more convenient to see your own typed words:

And that's what it was, whatever you can fabricate to get you through the moment.  That you've displayed.




fly gas wrote on Dec 15^th, 2008 at 3:15am:

what is to be gained...

1.  To see more and more of your own juvenile, exaggerated, taunting antics that have been addressed previously.


 
2.  And this:


fly gas wrote on Dec 15^th, 2008 at 3:15am:

I ask myself I think I can say I can only I'm still I have I wondered I'm not I have I thought I'd throw I might I will I have I was I don't I just I defend I do I have I was I could I know I checked I started I had I am I know I am still I can I'll give I can I won't

fly gas wrote on Dec 15^th, 2008 at 3:15am:

I think the definition of troll is one who posts inflammatory posts, just to distract or derail a discussion. ...troll up this whole thread,...

I do not think the definition or designating of troll is your's to make.

 I have spent way too much money on this crap with no results,  when they see no results they just tell you that you need more sessions.  So if everyone has money to waste then go ahead and waste away,  there are worse things too blow your money on but dont expect this to help CH.
 Phil 8-)

Typical little slurs, not addressing any part of the argument, thank you Doctors. Again, what again are your qualifications? You read about it where?

Victim? From the likes of you guys? Oh my god, grow up, you overestimate your own importance, easy to do. Naw, no one can really believe that; just pulling my leg, eh guy? Good One! Witty retort, one of many.

Troll? I didn't first use the term in this thread. Sort of an oxymoron when suggested against the person who started the thread, but maybe I'm wrong. Let the readers or administrators judge. Then again, read your last post(s). If the shoe fits.......

Funny, just described an English book, no date prob 1907, where the author goes on in depth where the flights of the Wright Brothers must be totally discounted to those of (ex pat Brazilian living in UK) Santos Dumont, because he had not read the studies and record reports that support their claims.

I don't know, maybe this logic travels over the generations, like John Handcock, a good movie by the way. Maybe its in the genes.

There's so much else I'd rather talk about. Is there any correlation to combat service and CH? Three of us in the Vet's M/C had clusters, the mathematical odds are staggering against that in the general random population.  A la, Clusterbusters, are there any studies that look at a REVERSE correlation between hallucinogenic use and the ultimate emergence of CH? Has anyone out there ever had an allergy screening from an MD or immunologist while in episode. If allergies were found, especially molds, given the seasonal nature of some episodes, were there any results?

I remember after months out on the line, i used to be able to pick flies out of the air, every single time. There was a lot I'd rather be doing, but there I was, picking flies out of mid air. Maybe life is just a series of repetitive cycles.

Whatever, wishing you all a PF,

chris

 Is anyone reading flygases books hes posting here because its to much reading for me. ;)

Good question, some are, some are not, 1700 lookers though..
Not to worry, not required reading, plenty of other threads out there, and there will NOT be a test on it in the morning.

fly gas wrote on Dec 15^th, 2008 at 9:15am:

Typical little slurs, not addressing any part of the argument, thank you Doctors. Troll? I didn't first use the term in this thread. chris

Yes you did.


fly gas wrote on Dec 15^th, 2008 at 3:15am:

I think the definition of troll is one who posts inflammatory posts, just to distract or derail a discussion. ...troll up this whole thread,...

Seems you brought up the word troll and I have not seen any slurs in this thread. BTW, you forgot to capitalize you name…



fly gas wrote on Dec 15^th, 2008 at 10:03am:

1700 lookers though..

Once again, it seems your main concern is how many listeners you can advertise AK to in your futile effort to legitimatize holistic hooey.

No one has fallen into your ploy yet. You keep mixing the Kool-Aid and looking for cups to fill.

It seems like it will continue to be a bumpy ride, downdraft on the way.

I guess you can absorb more of the same, enjoy it you must.

Don’t forget to stock up on diet Pepsi, my cupboard is loaded with popcorn.

Rolo... [smiley=watchdrama8jm.gif]

[smiley=watchdrama8jm.gif] :-*

okay  [smiley=damncomputer.gif]

and then the king said to the queen, let it be known throughout the land, that this day shall be always known as the day after yesterday. This seemed unimportant at the time, but it had a significant impact on the gross national product of the kingdom. Soon the minister of agriculture could not find his briefcase and the phones kept ringing, endlessly, bringing in  a new day, a dawning of age of Aquarius. The Fifth Dimension sang it loud and proud and we all listened, hoping it would be better than it was. So the fleas danced. The cards fell upon each other, and then........

and then...3-6-9 the goose drank wine, the monkey chewed tobacco on the street car line, the line broke, the monkey got choked and they all went to heaven in a little row boat.....and then...

 Thanks guys I like short stories better.
   [smiley=watchdrama8jm.gif]

Rolo,
Troll post 91, and on:

"You can pretty much count on the fact that if someone has been here several years they aren't simply trolls or hanger's on, looking for fight. "

I know, don't try to confuse things with the black and white truth, screws up some really otherwise convincing arguments.

I'm a balloonist, good with downdrafts, 20 cans in the fridge bring it on.

short 'nuff?

fly gas wrote on Dec 15^th, 2008 at 11:54am:

"You can pretty much count on the fact that if someone has been here several years they aren't simply trolls or hanger's on, looking for fight. " I know, don't try to confuse things with the black and white truth, screws up some really otherwise convincing arguments.

The tire is flat, not too much to argue about. Time for the jack and spanner.

Pretty black and white to me, keep mixing the Kool-Aid and missing the cup… ::)

I'm with Michael (Wildhaus) on this one: don't wanna participate but HAVE to see what happens next lol.
It's like a soap, and I don't even like soaps.

But keep going guys, I'm enjoying every minute of it.

I think enough (bandwidth) has been said on this...beating a dead horse indeed.

Get over it and go on.....

For those opposed to alternative medicine, have been doing some research, and there is a parallel path to AK, done by 100% Doctor, board certified, practitioners.

There are a scarce few papers filed on AK/Chiro and CH, but almost all have one thing in common on reported relief, ergo, the resetting of the plates in the skull, maxiofacial work, also working on the mandible and spine.

Low and behold, Osteopaths are reporting success with parallel methods. Osteopathic medicine can be practiced with a PhD, or at a perhaps higher level, by an MD, with specific training, residency requirements, and board certification, ergo, standard medicine.

The second half of my treatment, dietary/allergy, can also be done by MD's, there are many who can test for diet deficiencies and for allergies.

A lot of the discussions on CH cycle remission, go around diet, magnesium supplements, red bull, herbal cocktails and the like, and many people report some efficacy thus. It occurs that perhaps, some of these courses might add elements to the diet that are lacking, and trace minerals especially, are getting a lot of play in all medicine of late, pro and con.

Likewise, there is a lot of discussion that head trauma might be casually, or specifically related to CH, something I suspect is true in a number of cases, up to 24% in the CH.com survey. Also, the identification of enlarged brain section in CH sufferers, specifically the gray matter to the CH side, does pose a question that a shift in the plates of the skull, along with other factors, might be a part of  CH.

Anyway, as disclaimer, this has nothing to do with individual headache relief, more with breaking a cycle, so huff, swallow those pills and do whatever gets you through the night. As with any course of CH action, might work for some, not for others.

Still, if you read the CH.com survey, follow my logic here. For 37 years, hot showers have been my only near 100% source of relief for cluster headaches. If you look at the survey numbers, only 3% of reportees say hot showers are a source of primary relief. Thus, if I asked, I could have 32 perfectly honest people say hot showers have provided them no relief, and in the case of some, I would be castigated for even suggesting them and giving people a false sense of hope.

Still, if I listened to any of them, I would be out in the cold, denied the one source of relief that has kept me sane over the years.

Most of us are adults here, and can make up our own minds. I'd say two things. One, hit on google and read the same papers I have, see if they make sense. Next, next visit to your MD or Neurologist, maybe print off a few of the articles and ask him/her if it makes sense to at least try this path. To the best of my knowledge, it does not preclude ANY current course of action or treatment that is helping you through your CH. Standard insurance should cover the treatments if you get a referral, and the worst thing that could happen, is that you get your head checked, and might end up with a healthier diet.

Again, if you already have something that handles your cycles, God Bless, and stay with it. If you are one of the 3%'ers like I am, I only offer this as one more possible line of relief among the many others discussed on CH.com.

It has worked for me now 22 years, or given the vagarity of CH and cycles, I THINK it has worked for me, every time, every cycle for 22 years.

Whatever you do, don't put all your eggs into one basket. Me, I just got a script for Testosterone blood work, plus TSH, lipids and the whole match, and am thinking about renewing old friendships and seeing if anyone out there still sells lsd, both are really interesting OTHER courses of action.

PFD's to all of you, however you get them.

Best,

Chris

Applied Kinesiology doesn't appear to help you much at all from what I'm hearing in your posts.

The first time I tried AK, my headaches stopped right after the third visit, this after over a ten month cycle with frequent 8-10's, 6-8 a day. For 22 years now, after 17 years of 4-10 month cycles with many ten's; with AK, my longest cycle has been approx 7 weeks, with no tens, occasional 8's, but usually headaches in the 3-6 range. In this range, individual headaches are handled by Oxygen, Relpax and hot showers, and remembering my past history and the ten's and no relief from nothing, I am happy beyond words with AK.

That being said, I realize everyone won't be helped by AK, also that just like doctors, there are less that excellent practitioners of AK, Osteopathy, neurology, chiropractice and any medical practice. My primary advice is to choose ANY practitioner with care, if a practitioner isn't schooled in CH, compassionate and effective a/o agressive in your treatment, drop them and move on, and leave no stone unturned until you get relief.

What struck me with all that I've been reading on AK/Osteopathy and the like, is the common thread on the skull plates and the jaw. My AK doctor this cycle, zeroed in on my skull first visit, did some ouchy adjustments, and so far, this has been a pussycat episode compared to any of my past ones.

Again, I don't suggest anyone go out and jump into any of this. I do suggest that it might be worth a look, and if warranted, a discussion with any health practitioner they trust may be in order.

Especially if insurance covers it, the downside risk is negligible, stay with all meds and treatments you are on, and the upside, maybe only for a few of us, is significant.

Fly gas, you have tried to push down our throat enough of your alternative BS, and nobody is believing it.

Don't you think it's time to move on, to another message board and honor the people there with your outlandish ideas?


                  [smiley=nopity.gif]

Mrs Deej wrote on Dec 15^th, 2008 at 12:28pm:

I think enough (bandwidth) has been said on this...beating a dead horse indeed. Get over it and go on.....

Fly dude...You wait almost a month and start all over again. Did you not see what Steph said? Your point has been made.

fly gas wrote on Jan 7^th, 2009 at 9:01am:

My AK doctor this cycle, zeroed in on my skull first visit, did some ouchy adjustments, and so far, this has been a pussycat episode compared to any of my past ones.

Is ouchy adjustment an AK. term?

     Kinder gentler Potter

Is this a new topic?

If so, one traditionally begins a new thread.  If not, what purpose is served by revisiting a topic that has been thoroughly explored?  I see no good reason for this resurrection.  

Best,

George

Arguing with some people is a lot like wrestling with a pig..in the mud. After a while you realize the pig is enjoying himself!

Joe

Hey J DUDE,
I think she unlocked it for a reason, ask her. If you can't figure out the difference between admittedly alternative medicine, and
Board Certified experiments in CH relief, well, maybe I am wasting our time. My mistake, I thought this was a forum to discuss new remedies and research, and I have never mentioned Osteopathy before in any way.

George, you are correct. I have tried to study to figure out why this has worked on me, and was struck by the similarity with standard medicine and the AK path, I thought people adverse to alternative medicine might be interested in a path paved by peer reviewed, board certified MD's, thus the extension of the thread. Anyway, Cranial Osteopathy is certainly a jump from AK, and probably should have been a new thread.

Alien, I am not trying to push anything down your throat, or anyone's, just don't open the thread and we'll all be better off. Other than that, you're pushing it down your own throat, each time you open the topic.
Man up and take responsibility, stop trying to blame others for your little control problems.

That's it, I'm on the side for a while, you guys have fun.

Quote:

Re: Does Applied Kinesiology Help Clusters? Feedback?? Reply #117 - Dec 15th, 2008, 9:28am      I think enough (bandwidth) has been said on this...beating a dead horse indeed. Get over it and go on.....

Flygas...Stephanie has spoken and you would be smart to listen.

Enough