I consider myself lucky... my state has 3 listed. Some have less.... or none. I posted in the "getting to know you section" a few days back (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) and heading to an OUCH approved doc seemed to be at the top of the list of advice from all you wonderful folks. My rant/question combo is...

Do these doctors KNOW they're on "the list"? The closest dr. to me is at a clinic approx. 4 hours from me. I so NOT mind investing that time into try out a potentially amazing new neurologist however, the clinic had NO clue what I was talking about, insisted I get established w/ a primary physician in their clinic before seeing their neurologist. Despite my tears and pleading they would NOT allow these to be done on the same day. Sooo now my husband misses 2 days of work instead of one (I am legally blind, don't drive) kids miss preschool and swimming to go to Grandma's house or possible w/ use, 4 hours driving twice, meals, and now a hotel stay... banking on the prayer she really does know what she is doing.

Oh, and since this is basically a scam (obviously the 1st doctor I see cannot and will not be my new primary. I wouldn't travel 4 hours for a sinus infection or a blood pressure check) I am faced w/ the terror that my insurance might notice this craziness and refuse to pay.

Finding this website was a blessing but finding a proper doctor to treat this beat is turning into a nightmare.

What can I do? Am I missing a puzzle piece here??????

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

Try this approach:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.  Call 1-800-643-5552; 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.

6. 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.

Umm I did that :)   I am stuck up on #1 there. Hit a frustrating snag :P

jen in mn wrote on Feb 22^nd, 2010 at 8:15pm:

Umm I did that :)   I am stuck up on #1 there. Hit a frustrating snag :P

Hi Jen,

You don't have to follow Bob's list in any order - if the docs recommended on the OUCH site are proving to be difficult because of distance and rules, you can go to #2, or 4, or any of the other suggestions.  Don't have to stay stuck on #1!   ;)  The doctors may not be aware they are on the OUCH site because they are simply doctors that OUCH members/ cluster headache sufferers have had awesome experiences with, and they wanted to make sure people had the opportunity to find a good doctor if they were in the area. 
As to the issue you are having with the neuro - I have seen neuros that require recommendations and some that haven't.  There are some good ones out there that don't require you to see "their primary", there are some which require no prior visit with any GP.  Just questionnaires and a detailed first visit.  I sure hope you find a closer neurologist using one of Bob's other options if the 4-hr drive during business hours will become an issue for you, as it would for me and I drive!!  Look for that neuro who specializes in headaches as he suggests!!  I have gone back to the neurologist many times; it isn't a one-time visit treating these HAs...

Best of luck and wishing you PF soon!   8-)

Val

I want to stress again what VAL said.  The OUCH recomended drs. are just sufferers doctors that have been recomended by a sufferer as a great dr for them.  This does not mean that you couldn't find just as great a dr closer to you.  If this ouch recomended neuro is making you jump through hoops to be seen I would try to find a closer dr and risk it.  Thats me tho.  Good luck. 

I'm going to throw in something else... If you have a primary doc where you live TALK to him/her about your condition and seeing a good neuro who KNOWS about CH. He/she can do the referring.

You may have to do your own research into WHO you want to see (and the first one you see may NOT be the right one -- sometimes it takes going thru several to find one YOU can be comfortable with and who will work with YOU).

Call the neuro's office and ASK if they know about CH and how many CH patients they treat. If they're snotty with you write them off. Or have your Primary Doc call them and inquire about their experience (that's what mine did and found me a "wonderful neuro" when I had given up on them).

But in my opinion (and some will disagree) your Primary Doc is your first line of defense (or offense) in finding the right neuro. Finding the right Primary Doc (one who will "listen" to you and work with you) is VERY important.

I wish I could get you to my neuro (I've gotten everyone in our area here to him) - he's super terrific at treating CH. But one thing -- do your homework before you go to the neuro... remember YOU are your best advocate in your treatment.

Let us know how it's going... :-*

You won't get better advice than Bob, Val, Karla, and Barb gave you.  The only thing I would add is to be SURE you are comfortable with the doc and that you don't get one with a God complex.  Make sure you have one that will work WITH you and not just prescribe whatever he/she thinks best without discussing pros/cons with you.

Jerry