It's frustrating living with the mysteries of Cluster! Not ununusual for the various signs & symptoms to wander and change--in location, duration, intensity. But these chanes don't predict anything except that we will worry and speculate.

This is especially true if this is a new onset of Cluster. Changes can appear for months to a year or more before settling into some stability.

Are you using a preventive, such as Verapamil? Folks who are in/out of cycles, with only a brief interlude, find it helpful to stay on a preventive 100% of the time.

Hope you are seeing a headache specialist.
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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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Print the PDF file, below, and use it to discuss options with you doc.

Hi Texaslady,

Bob gives you excellent advice.

My husband has also experienced strange changes in his pattern. For 4 years he had a 3 week cycle in October, like clockwork. Then last year he had a long cycle for a few months in the fall that was basically only shadows, not all the time and not every day. Then this summer he had a cycle in the "wrong" time of year, and it was by far the worst he ever had. I too wondered if he was "going chronic".

My husband's headaches finally slowed down and stopped and we think it's because of the Regimen that he started (see my sig line). It took one month for him to get pain free (no shadows). I'm taking it myself - it's safe and has a very high rate of effectiveness.

Also, please get an oxygen prescription and inform yourself of the right way to do it (yellow "oxygen info" link to the left). It really helps with the pain.