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.
================================

Your story is all too common: long delays before finding out what's going on. The delay reflects, in large part, that this is a rare disorders and most docs have no training/experience in dealing with complex headache disorders, this includes neurologists.

Let's get to the money problelm. Call the social work dept in your hospital (the largest one is best if you have a choice). Ask them for infro about finding low cost/free treatment for care, asking directly for a headache specialist.

I'm assuming you have not had a good diagnosis from a skilled doc and you believe, from your study, that its Cluster. Issue is that there are numberous disorders which mimic Cluster but which are not headache disorders. Essential to know what you're dealilng with for many folks wander around, as you have, trying to find some relieif--so don't you to continue to continue on that trip.

If the hospital can't help, call a headche specialist and seek guidance. Worth a call.
===
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.
=====================================================================
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.
==================
When you see this last sentence, you see why it's not wise to try self-diagnosis and self-treatment, especially in reality that some Cluster-Like disorders are quite serious.

Please don't give up hope of finding affordable care before a effort.

While you are searching, spend time learning about what is going on. Besides what you find here:


These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
====================
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  A new site with extensive material. Explore the site map and then, patiently, the broad range of materials.