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Jerry,

Let me clear up a few misconceptions.

In the early days, yes i did have a difficult time getting mainstream doctors to listen to the evidence, but, I would consider The Harvard Medical School and the Hannover Medical School, legitimate medical professionals and they have been with us for years.

The National Headache Foundation which is one of the country's most prestigious headache/medical organizations, has not only sent us speakers but has helped at out conferences, for years now.

Doctors that didnt want to answer our emails in the beginning have come a long way. They are now not only presenting at our conferences, but are paying to attend the conferences to learn about our methods.

Other mainstream doctors are "participating" in other ways that I'd rather not elaborate upon.

As to Dr Goadsby, he has given many conflicting/morphing opinions of psilocybin for clusters.

You may be surprised to learn that he was listed as an investigator on the psilocybin study planned at Harvard.

He has said its worth investigating which is why he is on the team.

I DO look forward to speaking with him (and you) in Nashville.

See you in Nashville.

Bob

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...I know this year he is very interested in talking with Bob, in fact he may stay over a day if he can arrange his schedule so he'll be there for Bob's talk.

Well yay for Goadsby then  :) Now regretting I was gettin' on his case for outdated remarks.

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We have planned for Bob and Dr. G to speak on the same day....one right after the other.  This should allow them to hear each others presentations.  I'm hoping they will have time together, one on one, should they choose to.

Two headliners in the cluster world speaking on the same day.....very exciting and will be most informative.   :)'

Jackie

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Just gonna throw this out there, who knows right?  Kendall Gill aparently suffers from CH.

http://articles.chicagotribune.com/keyword/headaches

SPORTS

Headaches Fell Sonics' Gill

November 25, 1993

Guard Kendall Gill stayed home Wednesday to undergo tests for recurring cluster headaches while the rest of the Seattle SuperSonics went to Sacramento. The Sonics were midway through a two-hour practice Tuesday when Gill slumped to the floor at the side of the court, observers said. Gill was given oxygen by trainers and underwent a series of tests Tuesday. Cluster headaches can be more severe than migraines. They are marked by intense throbbing pain behind the nose and one eye, according to Taber's Cyclopedic Medical Dictionary.

From what I could find on the internet he apparently tried some form of Prolotheraphy (which I am not indorsing-I know nothing about it.) BUT - my guess is that this theraphy most likely hit at the end of a cycle, that he is episodic and they returned. (2 years later, sounds familiar  :-?) I have to wonder if he is suffering with it still but having no benefits from the theraphy.

http://www.prolonews.com/migraines.htm

"I had cluster headache migraine headaches off and on for about 16 years," said Kendall Gill, Guard for the Miami Heat professional basketball team. "The headaches would last for one to two months. It did not matter how many pain pills or pain shots I took. They would only return with a vengeance. They  would hamper my daily activities to the point where all I could do was stand still and hope the pain would go away." After receiving one Prolotherapy treatment by Gustav A. Hemwall, M.D., the world's most experienced Prolotherapy doctor, Kendall Gill was headache free for two years.

So, I think he still lives in Chicago  ::)...maybe he would be a "face" for our plight? Anybody in Chicago want to try and get in touch with him?

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From Wikipedia:

Prolotherapy (PROLiferation therapy) involves the injection of an irritant solution into an area where connective tissue has been weakened or damaged through injury or strain. Many solutions are used, including dextrose (a sugar), lidocaine (a commonly used local anesthetic), phenol, glycerine, or cod liver oil extract. The injection is given into joints or tendons where they connect to bone. The Injected solution causes the body to heal itself through the process of inflammation and repair. The process may result in as much as 30-40% strengthening of the connective tissue. Although well designed traditional placebo controlled scientific studies are still few, increasing numbers of good studies have been seen lately. There are now medical textbooks available to teach principles and practice of prolotherapy such as that by Dr's Ravin, Cantieri and Pasquarello.

Prolotherapy treatment sessions are generally given every three to six weeks. Many patients receive treatment at less and less frequent intervals until treatments are rarely required, if at all.[2] Prolotherapy is sometimes used as an alternative to arthroscopic surgery.

And from '>http://www.prolonews.com/migraines.htm

:

After a flare-up of his headache pain, Kendall Gill knew where to turn, and it was not to the local pharmacist. He learned that headaches are not due to a pain pill deficiency. Headaches, even cluster and migraine headaches, have a definitive cause. The most common cause of headache pain  is ligament laxity in the neck. The best treatment option for long-term curative rests is Prolotherapy because it addresses the underlying cause of the problem, ligament weakness.

While I have learned to discount nothing....or near nothing anyway....I do have a hard time seeing how this approach could work on CH. As stated, he was probably at the end of a cycle when this approach was taken. As far as a spokesperson goes, if he thinks that worked for him, I doubt he'd steer people towards anything else.

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While I have learned to discount nothing....or near nothing anyway....I do have a hard time seeing how this approach could work on CH

I completely agree.

As far as a spokesperson goes, if he thinks that worked for him, I doubt he'd steer people towards anything else. 

my thought is more towards the assumption that that has failed for him. If that is the case he is probably in the same "boat" as the rest of us, and possibly willing to become a "public" voice - if not for CB, then possibly for CH in general?

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  • 1 month later...

I think it is so sad and ridiculous that there are so few doctors and ers that understand. The pain of a bad ch is far worse than giving birth (3 kids, all natural, and I didn't even flinch at the pain because it was far less than a ch). There have been a few ch attacks were I searched the house for a way to end it. I've taken my last breath a couple times and downed so many pills idk how I survived. These attacks need to be treated in ers for the people who can't afford a doctor, and the sufferers should not be sent home with an rx for a migraine pill. I saw the Dr oz episode about clusters and it was very disappointing. Our pain is nothing like a migraine, it is NOT a headache, it is a life threatening attack. I just don't understand why so many take it so lightly, I guess they just think were all over dramatic, or they read something on the web that says its just a bad headache.

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Christina,

You are 100% correct!  And thanks or the compare to giving birth.  People just don't understand the level of pain...  Like you, I've gone over the edge during K10's.  Nothing but luck has kept me here.  I'm 10,000% better after finding oxygen and more importantly the hallucinogens discussed here.

Jeff

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I realize the conversation has veered down another road but I can't help but wonder if this suicide and others we hear of aren't suicides.  You know that some of us bang our heads against the wall and do other crazy things when we're in pain, some of which is rather hazardous.  Maybe he was trying to knock himself out and it went too far.  It's tragic regardless of what happened but it reminded me that we should perhaps make more of a point of emphasizing to our members to stay calm during an attack because it keeps your headache from accelerating more and keeps you from doing life-ending stuff.  Speaking from experience, since I used to panic and wound up in ERs and learned to calm down.  Doesn't end the attack, of course, but it keeps it from getting worse and I haven't had any incidental injuries or episodes like others have.

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