Post by Bob Johnson on Apr 21st, 2014 at 1:16pm
Sorry that you had to find us but, given the nature of Cluster, we'll be chatter for a long time. (Sorry...)
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Let's get the homework done first:
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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Do take the screen test, left of this page. It's NOT a final diagnosis but, if you get a positive score, then I'd suggest you find a headache specialist.
What you doc has give you suggests that he isn't skilled/experience with complex disorders. No fault of his for most docs, even neurologists, receive very little education/training in a complex area of medicine. At least explore your options.
----
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.
===============
IF you have Cluster, not yet established, don't be surprised or concerned if your pattern of pain degree, location, duration, etc. changes over weeks, even a coupleof years. It's just the nature of the disorder but can be confusing and troubling.
Treatment of often complex and requires, many times, changes in meds over weeks to months.
What these last two para. say: LITTLE is known about Cluster; no "cause" yet identified even as the processes are becoming a bit clearer. This is one of those frustrating disorders which we often control but can't eliminate/cure.
Leads to a major survival skill: learning about; willingness to patiently try different treatments; learning how to keep you emotional responses undercontrol when your're hurting and frustrated. Most of the folks you'll find here have gone down this path with decent success and we still have a good life. So, please try and develop your patience! And it's a good argument to read alot here. May not make full sense at first but you'll be building up layers of knowledge which will help as time passes.
========
Medical treatments for Cluster have changed over time, reflecting research being done but, for now, print out the PDF file, below. Use it as a discussion tool with any doc you see (and can be used to evaluate how up to date they may be). These are the most commonly used medss with some evaluation of effectiveness.
=========
Finally, until you get settled with a doc for long term care, keep posting your messages in the same section where you are now. After your settled and starting treatment, shift to the med/therapies section and. Really important that we be able to follow a single thread/location for your posts or else it's very hard to see continuity in your developing experience.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16
)
====
Let's get the homework done first:
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.
========================
Do take the screen test, left of this page. It's NOT a final diagnosis but, if you get a positive score, then I'd suggest you find a headache specialist.
What you doc has give you suggests that he isn't skilled/experience with complex disorders. No fault of his for most docs, even neurologists, receive very little education/training in a complex area of medicine. At least explore your options.
----
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.
===============
IF you have Cluster, not yet established, don't be surprised or concerned if your pattern of pain degree, location, duration, etc. changes over weeks, even a coupleof years. It's just the nature of the disorder but can be confusing and troubling.
Treatment of often complex and requires, many times, changes in meds over weeks to months.
What these last two para. say: LITTLE is known about Cluster; no "cause" yet identified even as the processes are becoming a bit clearer. This is one of those frustrating disorders which we often control but can't eliminate/cure.
Leads to a major survival skill: learning about; willingness to patiently try different treatments; learning how to keep you emotional responses undercontrol when your're hurting and frustrated. Most of the folks you'll find here have gone down this path with decent success and we still have a good life. So, please try and develop your patience! And it's a good argument to read alot here. May not make full sense at first but you'll be building up layers of knowledge which will help as time passes.
========
Medical treatments for Cluster have changed over time, reflecting research being done but, for now, print out the PDF file, below. Use it as a discussion tool with any doc you see (and can be used to evaluate how up to date they may be). These are the most commonly used medss with some evaluation of effectiveness.
=========
Finally, until you get settled with a doc for long term care, keep posting your messages in the same section where you are now. After your settled and starting treatment, shift to the med/therapies section and. Really important that we be able to follow a single thread/location for your posts or else it's very hard to see continuity in your developing experience.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16
)