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.

Oh dear.  The worst kind--the kind that thinks they know everything when everything they know is wrong.  I'm so sorry.

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

Our neuro sux.

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

bejeeber wrote on Sep 17^th, 2010 at 2:50am:

Jewelz wrote on Sep 17th, 2010 at 12:44am: Our neuro sux. That is unfortunately very common, but my god your neuro is an astoundingly idiotic and dangerous a-hole!! >:( :( >:( :(

At least you are knowledgeable enough about CH to know that he hasn't really got a clue about how to treat CHs. Pity those who don't have this knowledge and go along with the advice of this neurologist.

Now find one who knows or will listen to how this should be treated correctly.

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

That is so so frustrating...after everythng you had to go thru just to get in. The pompous, rude know it alls are just the worse. I'm so sorry for the both of you.

Means you'll have to do it alone for now, let us know what we can do to help.

JOe

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. 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.

Order an O2ptimask from the CH.com store (on the left), buy a welding O2 tank, buy a regulator from a supplier online or from Ebay, then go to swansonvitamins.com and order some Kudzu (I prefer Natures Way) and leave the neurotic Neuro in the dust.  That will hold you for a while until you can find a real Dr.

I've found the Kudzu to be as or more effective than Verp and without the side effects.  Of course not anything works for all of us, but it is well worth the try and doesn't require a script.

PM me if you have any questions about its use, or do a search on here.  There are a couple of pretty good threads about Kudzu use, but they are a few years old.

Jerry

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.

Arguing about oxygen is so last year.   

I believe that an hour of reading on this website will make any sufferer more competent than 98% of doctors on our condition.  Usually I hold my opinions on these types of threads, but couldn't this time.  Another disappointing neuro visit?  hmmmm, who would have thought. 

Seek self help and get what you need.  Oxygen as suggested above will get you going, caffeine, melatonin, kudzu will do just as well as most other stuff.  If you are set on using pharmaceuticals then keep trying to find a doc that will prescribe them.  If pain free is your goal go to clusterbusters.com and find out how to use the seeds to get relief combined with the other stuff listed above.

I have never consulted a doctor about ch after my allergy doc said he thought my headaches were ch and I am glad I didn't.  At this time I don't belive the docs have as much information about our condition as we have here collectively. ;)

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 :)

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

Guiseppi wrote on Sep 18^th, 2010 at 9:26am:

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

Amen, Joe.
And, I do really like your doc.  He sounds like a good guy.

I agree - for a doc, it's not a matter of knowing everything, but acknowledging that fact and working to learn what you need to learn for the betterment of the patient. 

Docs are not superheros or somesuch - they just know a bunch of stuff...

I'll never contemn a doc for not knowing something - I would contemn a doc for not caring enough to learn more...

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.

Joe and Lettucehead,

You said it!

It may sound at times as if I bash all Drs.  That is not the case.  I have had three wonderful, caring doctors who did what they could and would work with me to get what I needed.  Unfortunately, one was a Neuro, another a GP, but the best (because he knew that he didn't know) was a resident.  He learned and will be a great Dr.  He went into Gastroinetology, and went to St Louis, so I can't see him any more.  The ones that get my goat, and they have been more common than those who are willing to learn, are the ones who firmly believe M.D. confers Godhood.  I had one Neuro INSIST on prescribing a medication I'm allergic to.  She said if I wasn't willing to take her prescriptions I didn't need her.  She was RIGHT!  I don't need her.  I actually got better advice from an OB/GYN (and I'm MALE) than I did from my last three Neuros.

Jerry