Looking for anyone nearby who might be able to help with CH friendly clinics/docs. 

Also... I've been kicking around the thought of starting some sort of CH related project like a documentary or a book to raise awareness....  if this sounds interesting to anyone who has skills to bring to the table, let me know!

Hello P'monkey. On the left side of your screen are some buttons. Click on the 'where we live' button and you'll find 24 folks from WV.

Awesome, thank you!

You're going to get a wider range of choices going this route:

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.
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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.

I found a wonderful doctor on the OUCH website,there is a link for it on the left,a very kind man,he diagnosed me within 10 minutes,I told him I dont have any insurance so he didnt make me get an MRI or tack on any unneeded expenses,he put me on Verapamil and a mild nerve pill and life became worth living again in a few days. I do have to drive 1 1/2 hours each way to see him but no distance is too far to get some relief.My initial appointment was over a month away,I think they may do this to dissuade drug seekers,if I could do it over I would have gone and sat in his office every day untill I was seen,if I had known how quickly I could feel so much better,not only the lessening of the pain but the feeling of understanding and compassion to actually for the first time meet someone who truly understood what it was I was going through,I would have set a tent and camped in front of his building just to see him for 5 minutes. To me Hollywood has no glitter,athletes and rock stars pale,this neurologist is truly my idol now. If you do make an appt. with a headache specialist just go there,tell them to tell the doctor you have clusters and you cannot take it anymore and please see you for just a minute. You are not there seeking narcotics,they can help you end the suffering,be proactive,get desperate help is available its just very hard to get to the source of it.

I don't think it's hard to get an appt with a neurologist because of the 'I want drugs' issue. After all, a decent neuro is not going to prescribe narcotics for CH..they simply don't work.

My neuro here in NC saw me the 1st time years ago simply because of a phone call my PCP made with my symptoms. He squeezed me in the same day! I see fellow sufferers on here waiting months for an appt and I simply don't understand why. If I go into cycle all I have to do is call, tell the receptionist I am a CH sufferer and in cycle and she works me in within a day or two. My dear Dr. treats most of the CH in the area so maybe he has a deeper commitment and compassion.

If you find a Dr by one if the methods above..get your PCP to call and try to get you worked in asap.

Best of luck and hoping for pain free days.

Judy

To get my first Neuro appointment I called everyday sometimes twice a day checking for cancellations.  In about a week I had an appointment within an hour.  I left work in a rush and headed over.  You have to be persistent.  Pain is a wonderful motivator and teacher...