Coping with insensitive docs

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Posted by Bob Johnson ( on January 18, 2000 at 15:19:08:

A recurring compliant in messages is the insensitivity or unresponsiveness of M.D.s and their failure to believe cluster pain is so bad. Last fall there was a medical conference in Spain in which this problem was addressed by several American and European doctors.

Stephen Silberstein, M.D., director of the Jefferson Headache Clinic (Philadelphia) said: "The level of knowledge of how (vascular headaches) affect (patients) is very low in both the United States and Europe." He estimated that HALF of all U.S. physicians do not believe that these headaches are real diseases and some gynecologists regard them as a "trivial issue", making for a special problem for women.

Our old buddy, Seymour Diamond, M.D., noted that little is taught about these headaches in medical school, that there are few specialized clinics (which not only treat the sufferer but train physicians) and that the perception about causation still centers on emotional and psychological factors.

A Dutch professor of neurology noted that too many European neurologists regard these headaches as "something for hysterical females"--but there have been several messages on about American neurologists which suggest that this is not a distinctively European attitude.

So, if Silberstein is correct, we have a 50/50 chance of ending up with a doc who lacks both the knowledge and the attitude to help us. And I suspect that if you live in a many small towns or rural areas your odds are not this good.

The dilemma is, how do you respond, if you find yourself stuck with such a doc, without anger, frustration, and powerlessness being your only responses?

First, we don't stay with a doc who cannot help us. Even if locked into a managed care system, there are usually choices possible. Also, call the National Headache Foundation at 1/888/643-5552 and ask for a list of physicians in your state who specialize in headache. A similar, but smaller list, is available at: These docs, at the very least, have identified themselves as having a special interest in treating headache.

Second, check out any physician you are considering using. Do not accept the front office statement that the doc treats headache. That he treats doesn't mean he treats with skill or sympathy. It's perfectly appropriate to ask the doc at the first visit--very directly--what do you believe causes cluster?; what are the primary forms of treatment you use? If you get mush, primary reliance on pain medications, comments around depression, anxiety, stress, emotional/personality makeup, there is a good chance you are dealing with someone who is not up to date.

Third, if we must work with docs who are well intentioned but not well educated then we help educate them--after educating ourselves. I live in a small town and my primary care is a rheumatologist. I know more about cluster than he does but he respects my judgment when I ask for a specific med because I bring him medical literature which he respects. He knows that I don't abuse meds or him and so we have a mutually beneficial working relationship. But I've had to do my homework. is not an adequate source of the medical information needed. Support, sympathy, and encouragement are the strengths here but medical information tends to be fragmented. Sources? 1. links on the left, 2. medical websites such as Mayo Clinic, Johns Hopkins medical center,,,, just as a few ideas. 3. Do a search under "books" at using "headache" and you will find 200+ titles, both for the layperson and professional. (Dr. Diamond has a new edition of his book for the layperson.) (Just avoid books with a copyright much older than five years. Information is changing so quickly that older titles are too often not helpful.) My bias is for books because they are more likely to give a coherent, organized, overview of the issues.

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