Just wondering, do your neurologists see you on an urgent basis when you are in a cluster period and need to be seen?  It takes me 1-2 months to get in with mine.  I am considering switching, but I think I am running out of options around here, as she is the 3rd one I've gone through.  The 1st said I was having migraines and would not listen to me when I told her Topamax did nothing for me and wanted to keep trying me on abortives that never even worked once before, offering nothing else.  The 2nd retired on me, and he instantly knew I was having cluster headaches when I described them to him; so, he won points with me, but now I'm seeing one from the same office.  I thought about calling around and asking different neurologists' offices to see how knowledgeable they are about clusters, but I have a feeling each office is going to tell me that, of course, they do.  I just don't see them saying they don't. 

I went to the Mayo clinic and now I can call them each time I go in cycle and they work with my GP to help. My doctor there always calls me back within the day. The mayo is over 1500 miles away so this is working good.

Reality is--no doctor can know about every disorder he will see. Training is directed towards the most frequently seen disorders and so studies of Neuro training reveal how very few hours of education they get on Cluster. (Recently read a news story about ER docs who didn't recognize a case of whooping cough, once the scourge of children, now virtually non-existent, and so they had never seen a case.)

Anyway, go to "them what's got training":
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. 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.

I got lucky and found a headache specialist neuro here in San Diego who is very sympathetic to a CH'ers ill timed needs. When a cycle starts, I call him, he renews any prescription I need, 02, lithium etc., over the phone. Zip by his office, pick up my prescriptions, then make an appointment. Once I have my lithium and oxygen, there isn't any urgency to see him, just need to get poked to get levels checked. If you like this neuro, I'd suggest a sit down with him, explain how critical the timing is, see if he's agreeable to doing somehting similar with you.

Joe

Welcome Billie...glad you're here...sorry you have to be....

I'm with Joeseppi...this classy man just KNOWS stuff! Though I find it hard to combine lucky with clusterhead...gonna have to admit I'm one too. After at least 8 physicians with no clue beyond an all too dated textbook...I finally found one who "knew". Changed my life.

My first call to their center...when I said the magic word..."clusterheadache"...got me in within 48 hrs. She tells me...do NOT accept any delay....if you need to.... call ME. Never needed to, the whole staff "gets it", but it sure is an incredible comfort.

One of the main precepts of ch.com is that you gotta find an advocate/partner/professional caregiver in your physician. It AINT easy...they are few and far between...for this condition. Be your own advocate...RELENTLESSLY...no one else is gonna.

I'm with you....most providers are gonna say...of course, I can treat that. ....it aint necessarily so......

Make an appointment for "gettin' to know each other". Check the ouch website...listen to other clusterhead recommends ....

I'm not into Doc bashing...it is IMPOSSIBLE for them to know all the possible conditions...especially an orphan one.....they get little training in headache. BUT, I hold no truck in a caregiver unwilling/arrogant/dispassionate
enough to dismiss a patient with ch because" I know more than you do". Find one of those....run!!!!

Stick around...my advice is weak....there are other folks here who will steer you right....luck is so serendipitous......

Best wishes,

Jon

edited...cuz I'm lame

Stick around...my advice is weak....

One of the few things you and I will disagree on Jon ;)

Joe

I've actually been a member of this forum for about 2 years, just kind of lurking around in the shadows.  When I first found this site, I was truly amazed to be able to talk to other people who deal with these things.  At times, like right now, I get so down and nervous because my mind is wondering if I will ever find something that works or how long before the next one or when will this cycle be over and what if it never ends.  So, it helps to talk to people who understand.   :)

Billie wrote on Feb 19^th, 2012 at 5:47am:

At times, like right now, I get so down and nervous because my mind is wondering if I will ever find something that works or how long before the next one or when will this cycle be over and what if it never ends.  So, it helps to talk to people who understand.   :)

We all feel like that from time to time. Pain is a great depressant. It does help to talk with others, however what each of us is looking for is quite simple: no more pain! By sharing our successes and our failures, we are able to accumulate a personal log of what has or has not worked for us. This means we still have options, and options keep us away from the edge of desperation. Hang in there. Keep searching, trying and fighting. You'll find a way. Blessings. lance