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CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Formal studies have proven what our informal experience is regularly reported here: Few docs receive good education re. complex headache disorders and their practical experience in treating Cluster is limited. Many folks wander from doc to doc for years before finding someone who understands Cluster.
Since you have not had a good workup you don't KNOW whether you have Cluster or not. You can't safely start treating yourself until you have a good diagnosis.
MRI is not a way of diagnosing Cluster; it serve as one test to exclude other, possible, serious conditions. So a negative doesn't give a final diagnsis.) To grasp the complexity, look over this post:
Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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If at all possible, locate a headache specialist.
LOCATING HEADACHE SPECIALIST
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2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
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; On-line screen to find a physician.
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Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.