My BF finally got to see his neurologist today.  The guy was an ass.  First he scolded him like a little boy for not using his meds properly.  He thinks that prednisone/verapamil is the be all and end all of CH treatment.  The way he talked, you'd think he invented the stuff.  He actually said, "When I stumbled upon this combination, my patients thought I was God."  He refused to give us O2, saying that it didn't work and that my BF "would probably use it wrong and blow up [his] house."  We came equipped with printouts of the O2 info on the left, and threads from the message board; he refused to look at any of it.  He also refused to consider triptans.  I tried to tell him 3 different times that my BF needed an abortive as well as a prevent.  He dismissed me every time and just kept talking about the pred/verap.  It didn't matter to him that it doesn't appear to work anymore.  He actually told us that if it isn't happening everyday, it isn't a cluster, and that he should just ignore those ones.  The only other advice he offered was for us to call paramedics or go to the hospital if he's in pain.

If anyone out there knows of a good neuro in Edmonton, Alberta, please PM me.

Jewelz wrote on Sep 17^th, 2010 at 12:44am:


That is unfortunately very common, but my god your neuro is an astoundingly idiotic and dangerous a-hole!!

And after the long path you two had to walk just to get there. Sucks, big time. Ditch this guy, in a hurry. Even a sympathetic GP would be better. And don't forget to look into the welding O2 if you're stuck for a Rx. Some here can help with the proper hookups needed to turn it into a mask breather. Good luck, and God bless. lance

While this was written for the U.S., some elements may give you some ideas for your searching....

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

oh my....

How incredibly disappointing. 

Please hang in there and keep your spirits up!  Take all your info to you family doc and see if she'd be willing to listen and try some things out.

Don't throw rotten tomaters at me for dissing the medical community on this subject, it is nothing personal they just don't see many of us.  And we are the ones in the pain, so WE are the ones who should know about the condition anyways.

--Shaggy 

Oh I'm with you Shaggy, a lack of knowledge on a topic doesn't make a bad doctor. My doctor had a computer on while he talked with me and would literally google my symptons for suggestions to make sure he wasn't missing something, then he'd open his big books to confirm what he found. He'd say "Joe, no one can possibly know everything in these books, it's stupid to try and pretend you do."

Not knowing this stuff is not the probelm, pretending you know everything about everything.....that's a recipe for disaster!

Joe

So sorry for your frustrations. It is very hard finding a CH specialist in Canada.

I have a semi specialist on Ontario, but I still have to fight and argue to get the meds/treatment I need.

A  good GP could do just as good a job writing Rxs. Hope he has one of those at least.