Post by Bob Johnson on Feb 9th, 2015 at 9:04am
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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You have two major problems: a doc who doesn't know how to treat Cluster; and, therefore, it's possible that he hasn't diagnosed you correctly.
Adding a third one isn't wise, i.e., trying to treat yourself in the absence of good medical guidance.
Neurologists have a very poor track record around here because they have, contrary to expectations, very limited training/education in treating complex headache disorders.
A second issue is that there are many disorders whidch mimic Cluster but which are not headache disorders. This means you must have a solid, accurate diagnosis before you start any treatment plan. This is where self-treatment becomes an issue.
If possible, find a headache specialist, even though his means starting over again. (Note the last paragraph of the following.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or 
END PRINTPAGE; On-line screen to find a physician.
4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or END PRINTPAGE 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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Your present doc's treatment plan suggets he doesn't have the background you need. Forexample, prednisone is NOT a problem when used correctly and it sounds like he is introducing it incorrectly for Cluster.
Long range thinking is critical for us. Cluster is not a disorder which can be "cured". It likely to be with you until late middle-age. That demands you find skilled medical care early on, understanding how to treat youself in collaboration with the doc.
==================================
You have two major problems: a doc who doesn't know how to treat Cluster; and, therefore, it's possible that he hasn't diagnosed you correctly.
Adding a third one isn't wise, i.e., trying to treat yourself in the absence of good medical guidance.
Neurologists have a very poor track record around here because they have, contrary to expectations, very limited training/education in treating complex headache disorders.
A second issue is that there are many disorders whidch mimic Cluster but which are not headache disorders. This means you must have a solid, accurate diagnosis before you start any treatment plan. This is where self-treatment becomes an issue.
If possible, find a headache specialist, even though his means starting over again. (Note the last paragraph of the following.
------
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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or END PRINTPAGE; On-line screen to find a physician.4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or END PRINTPAGE 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.
=====================================================================
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.
============
Your present doc's treatment plan suggets he doesn't have the background you need. Forexample, prednisone is NOT a problem when used correctly and it sounds like he is introducing it incorrectly for Cluster.
Long range thinking is critical for us. Cluster is not a disorder which can be "cured". It likely to be with you until late middle-age. That demands you find skilled medical care early on, understanding how to treat youself in collaboration with the doc.