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The dr who says ketamine works 100% is wrong.

Dr. Sewell was referring to a study done by John Claude Krusz with a small number of cluster headache patients.  In his study, he found that IV ketamine abolished the ongoing cluster headache episodes in all 4 cases treated.  No one at any point has ever said that ketamine works 100% in all cluster headache sufferers.  In fact, I don't think there is any drug that has been found to work 100% of the time for cluster headaches, ever.  No offense meant, but before we call out an esteemed cluster headache researcher and say he's "wrong", we should probably read the abstract that we are claiming is wrong.

http://www.sbcefaleia.com/component/content/article/94-61th-annual-meeting/59-iv-ketamine-in-the-clinic-to-treat-cluster-headache

As far as your experiences, maybe you are one of those people it just won't work for.  My guess is that they did not give you a big enough dosage, seeing as how you didn't feel much of an effect.  I know with me, sometimes the ketamine does not get rid of the pain, but I sure as hell feel the effects!  I also highly doubt that the study Dr. Krusz did was on mild cases of cluster headache patients--he convinced people to try an experimental, untested study with a drug that many many people really hate in high dosages.  My guess would be that people that sign up for these kind of studies are usually not mild cases of cluster headache.

Purple--I really appreciate all your support :)  I also really appreciate all the PM's I've gotten from people that are hesitant to post support in public :)

-Ricardo

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Ah, Crystal has only been here for a few days and was diagnosed less than two weeks ago. She is relaying the personal info she has. That does not make her a 'mild' sufferer or anything else negative. She is new.

Ricardo, I support your efforts to make everything 100% up to date and correct. You have done a ton of research. You are a font of knowledge. Also, you come off as much more of a jerk than my limited experience PMing showed you to be. I read your posts and make an effort to reply when I feel I have something to contribute or learn something new.

I am sure that I am too 'chatty' for some and too dense for some and suffer too mildly for some. Oh well. Such is life. I am here. I left another board because of critics complaining that I did not put spaces between paragraphs in my FIRST post.

Let's not criticize so much. Let's support more and teach more. Especially for new members. They don't know us and we don't know them. But, we do know their pain, family issues, Dr issues, and the rest of this $hit. We do know how to help them so lets just do that.

Now, where is my beer?

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Ah, Crystal has only been here for a few days and was diagnosed less than two weeks ago. She is relaying the personal info she has. That does not make her a 'mild' sufferer or anything else negative. She is new.

I wasn't trying to imply that her case was mild, just that her case was ONE case....Obviously if they are giving you Ketamine in the ER for any type of headache it's got to be a bad one.  My real point was that she was misunderstanding what I had said, and was saying Dr. Krusz was wrong without really understanding the study he did.

Also, you come off as much more of a jerk than my limited experience PMing showed you to be

Sorry.  I don't know how to balance challenging the inaccuracies with keeping everybody happy.

-Ricardo

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Ricardo,

I, for one, am more than happy to support you publicly. Your contributions and opinions, while occasionally "out there" are always welcome additions to our store of knowledge. After reviewing the preceding posts, I feel that my criticism was overly harsh and unfair. I apologize and hope you'll keep doin' what you're doin' just like you're doin' it. This is one old fogey you should feel free to ignore. In the future I'll try to be less critical - especially of people like yourself who I consider my friends. I hope there are no hard feelings.

Ron

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[i wasn't trying to imply that her case was mild, just that her case was ONE case....Obviously if they are giving you Ketamine in the ER for any type of headache it's got to be a bad one. [b] My real point was that she was misunderstanding what I had said, and was saying Dr. Krusz was wrong without really understanding the study he did.[/b]

Sorry.  I don't know how to balance challenging the inaccuracies with keeping everybody happy.

-Ricardo

And you made a number of assumptions about the study to make it fit your theories.

The website was launched in time for the Headache on the Hill event.

We know we have work to do and it will all be reviewed and like any good website, built and updated with new information constantly.

I think this thread has veered off course enough and will be locked.

Rest assured that the points made will be investigated and changes/additions made if found to be appropriate.

If anyone has any constructive comments or suggestions for the website, please feel free to write to me at psiloscribe@yahoo.com.

Clusterbusters is not just about treatments. We are also getting more involved every day in advocacy and education and the new website will reflect all these areas. This is a big job. Not just doing the work but keeping everyone up to date on what transpires every day.

We want the CLusterbusters website to be THE place for not only cluster sufferers to go for up to date and accurate information, but also doctors, researchers and media.

Considering all the areas we endeavor to present, this is a balancing act. There are many people involved doing, in my opinion, incredible work. This message board, as important as it may be, is but one part.

Soon there will be a report here about our visit to Washington DC and the work done there by many cluster sufferers. Work that you can all be proud of.

Bob

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I hope there are no hard feelings.

None at all, to anyone.  I understand why I've upset some people and I'll try and make it happen less often.  I'm sure part of the problem is that I didn't take the time to point out any of the obviously really great parts of the website...It does look good, and it does make it easier to find the info posted.  On the next update I would love to be able to add some suggestions, links, or maybe references, but if that's not needed I understand.

I really am very thankful for all the people who have contributed their time, money, and effort to this site and this recent update.  I'm sorry if I haven't shown that clearly enough, but I do.

-Ricardo

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