I am a chronic clusterhead and just wondering if anyone has any experience working with the Mayo clinic. I have a December appointment there. :-?

Scottsdale, AZ,  Jacksonville, FL, or Rochester, MN?

Rochester MN

Hey Star,

Dr. Jerry W. Swanson, M.D. appears to be your best bet at Mayo Rochester... 

I'm not familiar with him, but he's several articles and conducted studies on cluster headache and migraine disorders.

When you get there, ask for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 most frequently used to measure its status.

Nearly all cluster headache sufferers who have posted their results for this lab test here at CH.com while experiencing active cluster headaches have tested below a 25(OH)D serum concentration of 30 ng/mL.  Some chronic CH'ers have tested as high as 55 to 62 ng/mL.

The exciting news is 76% of the 250 CH'ers who started the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3 have experienced a significant reduction in the frequency and severity of their CH.  70% of the 250 CH'ers have gone completely pain free on this regimen.

Members of this group who had the lab test for 25(OH)D after experiencing a favorable response to this regimen have all tested in a range of 60 to 110 ng/mL 25(OH)D.

See the following link for more detail on the benefits of vitamin D3 as a cluster headache preventative:

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Bottom line...  when you get in to see a neurologist at the Mayo Clinic, ask for an endocrine consult as well. 

You also need ask for a prescription for oxygen therapy at 15 to 25 liters/minute.  Tell them you've also read papers on the use of oxygen therapy as an acute treatment for cluster headache and its effectiveness by Dr. David W. Dodick, MD, President American Headache Society...  (He works out of the Scottsdale Mayo Clinic...)

Take care, good luck and please keep us posted.

V/R, Batch

Thank you for the suggestiond. I know they scheduled me for a four day work up. I had all major nerve roots blocked yesterday in Hope that I will get a little relief prior to leaving. I look a bit like Frankenstein today after eight injections. I did have only one ha today.  ::)

Good luck Star, and let us know how you make out. God bless. lance

This is just some info that i picked up it is not meant to discourage anyone but it is the brutal honesty of our plight.....  A fellow CHer told me her Neuro was from the Mayo Clinic and she was his first patient that had Clusters and he in school had only studied CH for 2 hours after thousands of hours in 8 years of school!!!....THATS IT! 2 HOURS?????
The true facts about CH is that the Doctors out of med school don't know shit about CH and the only way these guys are learning it is to treat us. So make sure you find a neuro that has EXPERIENCE in treating CH and not in the dark.....Johnny :-?

That's scary :(

It is truly scary but unfortunately it's true. My doctor is the head of family medicine at UCSD in San Diego and I am going to try to have him bring this issue up at a board meeting to try to get this incredible injustice remedied and hopefully i can make a difference by doing this??? Anyway i am going to try so our disorder is treated as it should be as the most painful disorder of ANY DISORDER and get the curriculum changed at UCSD cause 2 hours of study on Cluster Headaches in 8 years of school is a travesty!!.....Johnny >:(