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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Are you seeing a doc skilled in treating complex headache disorders? If not, urge you, if at all possible, to find a headache specialist. First, you need a good diagnostic work-up for there are many disorders which mimic Cluster but which are no headache disorders.
Second, assuming Cluster and your age, the odds that they will disappear afrer 1-2 attacks are very low. This means you need to start learnin how to care for yourself so that can, as much as possible, be in control.
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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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I'd urge you to not get into a self-diagnosis, self-treatment effort. Especially, avoid the temptation until you have had a good work-up/diagnosis.
I assume that, since you have been reading here, you have seen recommendations about where to find good materials to help you learn how to care for youself. Apart from learning how to care for youself, learaning will help to reduce your anxiety and fear of how this will affect your family.
The odds are in you favor that learing and good treatment will stabalize your situation, so getting to work with a good doc is important.
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