Hello Everyone
I have suffered w clusters since 2006 and have been diagnosed as chronic.  The only time where I was HA free was 2009 when I went thru a series of 6 operations on abdominal, stomach, and colon.  I have been looking at the vitamin d regimen that has been posted on here, but having lost of my short bowel, I wonder if this would help. I had my vitamin d checked couple of days ago and it was 56. So it looks like I'm not deficient in vitamin d. For the clusters I'm on: verapamil 720 mg a day, vimpat 400mg a day, sumatriptan shots, spray, and pills.  For last 4 months, I have suffered 2-3 attacks a day. Most at night. I do have oxygen for help also. 
Just checking if anyone has suggestions.  I do have an aptmt w a Dr Brandes in Nashville in April, but have to have relief before then.  Thanks

The first critical question: Is your doc a headche specialist
or does he have extesnsive experience treating complex headache disorders?

Neurologists have quite limited education in complex headache disorders. Too many of us report unsatisfactory care from general neurologists. Would be well to ask about this doc's experience/training.

If you wish to explore further:

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.

With AFIB in your life the need for skilled medical supervison is, I trust, self-evident. A good headache doc will collaborate with the doc handling the heart issue.

MacAtack wrote on Mar 1^st, 2015 at 7:17pm:


The combination of heart issues and CH really complicates things for many medications that help with CH, which will also include potential issues with triptans (like imitrex). Getting your doctors to all talk to each other is essential.

I'd also consider running what medication you've been given past a good pharmacist as they are often the real experts on drug interactions. And I've found that they enjoy being given questions like this as it lets them use their skills rather than just counting out prescriptions.