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

Melatonin is the go for a lot of us on here! It gets you
through the night without those wake up calls, you
need to take 5-15mg 2hrs before going to bed, it
can take up to a couple of weeks to kick in. You
can buy it from your pharmacy or local health
food store.

Hoppy.

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

Will try melatonin. Thanks

Bob
  No. I have had to worry with other problems and haven't had time to look around. Since I developed A-fib in January after being on high dose of predisone, I think he knew it was time to send me to this neurologist in Nashville at Vanderbilt University. Hoping she comes up with a solution. I can handle one atack at night w oxygen giving me relief but they keep coming back until I sit up rest of night. Losin all the sleep is takin toll on body.

Thanks very much for responding!

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. 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.

MacAtack,

Sorry to be so slow in responding...  For starters, a 25(OH)D serum concentration of 56 ng/mL is good for otherwise healthy people... but too low to prevent CH.  Data we've collected here at CH.com indicate CH'ers taking the anti-inflammatory regimen report a favorable cluster headache response range of 60 to 100 ng/mL. 

Looking over the online survey data from 127 CH'ers taking this regimen to prevent their CH, it appears a 25(OH)D serum concentration of 60 ng/mL is the 50:50 tipping point where half get hit and the other half start responding but are not completely pain free.

What we've found is the target 25(OH)D serum concentration where most CH'ers experience a lasting favorable response to this regimen, is 80 ng/mL and that 10,000 IU/day vitamin D3 results in an average 25(OH)D response in that area.

Regarding vitamin D3 absorption... given your shortened GI tract, several studies indicate vitamin D3 is mainly absorbed in the jejunum and ileum sections of the small intestine, so missing a portion of the small bowel shouldn't pose any limitations to vitamin D3 absorption.

I'm not a doctor so give your PCP or gastroenterologist a call and bounce the idea of starting a vitamin D3 regimen at therapeutic dose of 10,000 IU/day.  The rest of the supplements in this regimen are at RDA or less so shouldn't pose any problems.

Some neurologists will say don't take any calcium supplements as calcium may decrease verapamil's CH preventative effect...  However, given you're taking 720 mg/day verapamil, and still getting slammed... it would appear verapamil is not having a major preventative effect.

Given your other medical problems, I think you'll find the anti-inflammatory regimen brings added health benefits.

If you've any questions, please shoot me a PM.

Take care,

V/R, Batch

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.

Bob
    Yes, with me going into a-fib first of January, I think that really caught the attention of the neurologist that I'm going to now. The heart dr wanted to put me on a beta blocker but after being contacted by the neurologist, he decided to leave me on the verapamil. Im hoping this Headache Specialist/Neurologist that I am going to in April, and is certified by the info you supplied to me, will straighten out the issues w the heart dr.

Batch
  I've started taking 4 vitamin d (2000 iu) and a calcium (600 mg w 800 iu of vitamin) two times a day. Also, I am taking 400 mg of magnesium a day. And one multivitamin that has 600 iu of vitamin d. Do I stay at the 10,000 per day for the first week?  I would be appreciative if you send the regiment to me by a pm. Wished I found this site a long time ago, and know what to ask.

Thanks again guys for the help!

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

Bob     Yes, with me going into a-fib first of January, I think that really caught the attention of the neurologist that I'm going to now. The heart dr wanted to put me on a beta blocker but after being contacted by the neurologist, he decided to leave me on the verapamil. Im hoping this Headache Specialist/Neurologist that I am going to in April, and is certified by the info you supplied to me, will straighten out the issues w the heart dr.

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.