Appreciating that Boone is not the center of the universe anymore than Casar (my previous nest!), first question is: who is treating you ? Doc have training and/or good experience with complex headache disorders?
Given your history, my first reaction is: need for a headache specialist. (Even if you had to drive to W-S, Greensboro, Asheville, et al, once you got settled with effective treatment program, subsequent visits would be limited.)
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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.
3. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
On-line screen to find a physician.
4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
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.
5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or
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. (Don't assulme that a neurologist has the sklls. Majority of them have meager education/training with Cluster.
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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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Second reaction is the possibility that you don't have Cluster. See:
Link to: cluster-LIKE headache:
IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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As I noted in this posting, I stopped adding to the list because it just grows and grows. The key point, however, is that you can have the classic Cluster symptoms but not have a headache disorder. So, need a sharp doc to think along these lines.
Since you have used many of the standard Cluster meds without consistent good results, it raises the preceding suggestions rather strongly for me.
Print the PDF file, below for you infro.
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a newbies introduction (Read 1751 times)
