All headaches are horrible, AJ, and we empathise completely. Tell us whereabouts you live and perhaps we can steer you towards a headache specialist.

Doctors try to help, certainly, but it really does take an expert to get you started on a road to recovery.

We're here to help,

B.

Hi Alison and another welcome to a place where everyone understands just what impact headaches can have on your life.

What we can't do is to give you a diagnosis, instead as Brian and Hoppy have suggested, the recommendation that you see a headache specialist to give you an accurate diagnosis and get you started on whatever treatment you need for whatever it is.

Are you keeping a headache diary?

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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There are many disorders which appear to be Cluster but which are not headache problems. After so many years of suffering it's time to find a headache specialist, if at all possible. (Be cautious about neurologists for, as a group, they have limited training/experience with headached.)
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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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And please don't start and self-help treatments which you see here. Without a good diagnosis, the chances are that you keep wandering without effective help.

I think I understand that you have not seen a headache specialist--and so you are doubtful about trying the real thing. That doesn't make much sense.

Too many people tell us stories of wandering around for years trying a variety of "fixes".

Welcome to the site. If you haven't taken our "cluster quiz", click on the link below. This will help you decide if CH is what is causing your pain

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Don