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...

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.

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.

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


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.

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!

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


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:


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


What kind of books?

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 6^th, 2008 at 8:40am:

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

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?

   LMAO @ you Scott.

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


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

Best,

George

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.