It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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I searched the largest medical library in the U.S. and found only one citation reporting some success. It was from Italy, 4-yrs old, reporting 55% improvement with Chronic Cluster--but no # of patients treated. Reading the whole article may give more data but, nevertheless, the literature is rather thin in terms of making a decision for you.
The literature on this approach has been limited. Fair to say the concensus at this point is no real evidence this should be used except as a very last resort.
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Does you neurologist have experience treating complex headache disorders? Most have meager training and experience even as it seems reasonable to turn to this group for headache care. We suggest using headache specialists, if at all possible.
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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.
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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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The doses on the two meds you are using are rather low. Unless you have tried higher doses without success, I should ask about increases before you ever think about surgery. (Print the PDF file below. Use it as a tool to discuss options with the doc.)
Don't be shy to ask the doc about his experience and training re. headache. Your obligation is to your well being and not protecting his ego!
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Sphenopalatine Ganglion Block (Read 1589 times)
