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Posted by Bennie Sue ( on July 30, 2000 at 13:22:03:

In Reply to: Suggestion... posted by Enrique Geiger on July 30, 2000 at 10:02:34:

You are certainly correct that many of us with long-time CH have not received effective treatment in the past. I went 11 years without any medication - fortunately, I am episodic.

In regard to the questionnaire, we want to know about the years of misdiagnosis because we need these statistics in our campaign for better treatment in the future. We want to show what clusterheads have suffered for so long and to emphasize how necessary it is to change this state of affairs.

I do not think this questionnaire is the place for the information you suggest. We are looking for general statistics to publish for all to read - and that includes medical professionals. Listing the names of "bad" doctors in this survey would not accomplish anything for us except to alienate those very people we want to educate and win over to our side.

(I cannot blame my fine doctor who wished so very much to help me many years ago. He offered what was known and available at the time. More he could not do. I saw the neuro down the hall from him next. She diagnosed me in 5 minutes, but had no medication to offer. Again, it was not her fault that CH had not been more thoroughly resarched at that time.)

Your point is a good one. We do need to know which doctors to avoid if possible. But the only people I would wish to vilify publicy for their lack of success in treating CH are those who refuse to consider CH a possible cause of head pain, those who are unwilling to listen carefully to their patients' symptoms, those who say "take an aspirin and call me tomorrow," and those who refuse to refer patients to a neurologist for various reasons of their own.

I do not believe intentional bad treatment or lack of treatment are rampant today. Our health care system needs a lot of work. Far too many people are not getting the diagnosis or treatment they need because of the way the system is set up. I won't go into my political ideas about this issue. But I do think almost everyone would agree that we do not have an equitable system and change is needed.

I do think the site you mentioned might be useful reading for many of us. But all Web sites are set up to serve their own purposes and in some cases their reporting may not be strictly factual. We must weigh what we know against what is claimed and make our decisions based on common sense and the opinions of those we trust.

If you are willing to coordinate making a list of doctors to avoid because of their obvious disdain for headache sufferers or something like that, I think you might ask people to send you that information by email to be kept on file for the time someone is seeking a doctor in a certain area.

Perhaps someone besides me has a better system to suggest.

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