Information is what we offer, because knowledge is power.

Welcome home.

Your doc doesn't know how to treat Cluster. Jumping from one med to another will not lead to stable control.
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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.

Hi and welcome

For oxygen read up about how we use it at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . Even with your job keeping you on the go, it is still a great way to kill CHs even if you just keep it at home for overnight hits.

When in cycle I use a small cylinder that fits in a backback, along with my regulator, mask and Red Bull that I take with me, be it on a social trip or to work, so if I get a hit I can jump on the oxygen in minutes. You just get used to looking out for places where you can use it, be it an empty office or a stairwell.

There is a very interesting interaction between caffeine and headaches. For CH it is not regarded as being a trigger, although for other headache types, like migraine, it is a very common trigger. But then when the headache starts it can work to help alleviate the symptoms. So do give it a go, just pick an energy drink with both taurine and caffeine, then drink it rapidly as soon as a CH starts. It should help minimise the intensity and duration.

There are capsaicin creams that people do sometimes promote. People have posted here about having tried them but there have not been many favourable reports.

Be very careful about long term use of steroids, especially the 40 day duration one you mentioned. Steroids are pretty harsh to your body, especially to joints. For CH a normal prednisione dose is a taper dose starting about 80mg and dropping off over about 10 days. This is used for when a longer term preventive, like verapamil or lithium, is started to work as a preventive whilst the longer term one builds up to an effective dose.

Keep reading and you'll learn more, then ask all the questions you can think of.