Fundamental problem is that you have not been working with a skilled doc. Endless use of Ped. is a sure sign of a doc without knowledge. So,
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LOCATING HEADACHE SPECIALIST
1. 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.
2. 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.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED
Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.
THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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See the PDF file, below. These are the kinds of meds you should be receiving.
Learning about Cluster will give you security as well as comfort.
These sites which are worth your attention: medical literature, films, plus the expected information
about CH.
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Search under "cluster headache"
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Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
a careful read.
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A new site (ca. 2015) with extensive material. Explore the site map and then patiently
the broad range of materials.
But a good doc comes first. Cluster cannot be "cured", i.e., eliminated but the vast majority of us have learned how to live with--and control--it.
As you spend time reading here the confusion of language and issues will make sense. So, patience and persistance will yield control and comfort.
Please don't try and treat yourself without first getting settled with a skill doc.