Hey everyone, how are you.Im a 32 year old male from Pittsburgh, Pa. My first CH was 3/12/2006. Over 8 years now and I still haven't had a break or not even a week free of them. Can you say Chronic Cluster Headaches smh.

Are you working with a headache specialist?
===
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.
=====================================================================
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.

Sorry to hear that. I've got them pretty bad but not chronic. Sucks!

Hey BAD,

The odds are you're vitamin D3 deficient and this deficiency is contributing to the frequency, severity and duration of your CH.

See your PCP for a lab test of your serum 25(OH)D concentration and discuss the contents of this post.  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status.

An online survey of 127 CH'er taking the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 indicates 83% of the CH'ers taking this regimen experienced a significant reduction in their CH...  like three a day down to three a week...  60% experience a lasting pain free response...

There are hundreds of CH'ers here at CH.com on this same regimen who will attest to the effectiveness of this regimen.

Here's the latest list of supplements and doses used in the anti-inflammatory regimen along with a photo of the supplements I take.  I buy nearly all of them at Costco and the cost of this regimen is roughly 30 cents a day:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The Mature Multi contains the rest of the vitamin D3 cofactors shown in the table above.  Not shown in this photo is the vitamin B 50 recommended by Dr. Stasha Gominak, MD.  She's a neurologist in Tyler, TX who suggests a 3-month course of vitamin B 50 to take care of any possible B vitamin deficiencies... 

Dr. Gominak has been treating her patients with sleep, chronic pain and headache disorders for over 6 years with a regimen very similar to the anti-inflammatory regimen.  The only real difference is she adds the 3-month course of vitamin B 50.

Vitamin B 50 is a formulation of all seven B vitamins at 50 mg each plus 400 mg of Folic acid.

Many CH'ers have found the following vitamin D3 loading schedule elevates their 25(OH)D serum concentration and achieves a pain free response a lot faster than taking 10,000 IU/day vitamin D3... 

Take the complete anti-inflammatory regime with 10,000 IU/day vitamin d3 on the first day.  As long as you don't experience an allergic reaction (very rare) to the vitamin D3, proceed with the loading schedule.

The vitamin D3 loading schedule calls for 20,000 IU/day vitamin D3 for two weeks plus a 50,000 IU loading dose once a week during the first two weeks.

Take 15,000 IU/day vitamin D3 for the next two weeks then drop the vitamin D3 intake to a maintenance dose of 10,000 IU/day. 

This loading schedule totals 600,000 IU of vitamin D3 over the 4-week schedule.  I know that sounds like a lot of vitamin D3, but it averages out to a little over 20,000 IU/day vitamin D3... 

Our skin can make that much vitamin D3 with a 30 minute exposure to the UVB in direct sunlight at mid day if clad in a bathing suit without any sun block.

This vitamin D3 loading schedule should result in a 25(OH)D response of 60 ng/mL above the starting serum concentration by the end of the 4th week. 

Be sure to see your PCP for the 25(OH)D lab test at that point.

Take care and please keep us posted.

V/R, Batch

Thanks a lot I'm gonna look into it right way.

I'd love to hear what ends up working for you and what doesn't. You seem to be chronic, and though I'm episodal, I'm about as close to chronic as I can get before getting into the gray area. I get 2-3 per day with ~1 month on and ~1 month off.
Being that you don't get at least a month break, that is chronic territory. If you don't mind sharing, how often are your attacks during the week?

Yea I definitely will share how it works. I'm lucky compared to some others in here. I usually get between 5-10 a week the more I sleep/nap the more I get but I am Chronic so not ever getting a break is very stressful.