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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Newbie got screwed by bad  Neuro- HELP
(Message started by: broomhilda on Feb 5th, 2004, 2:39pm)

Title: Newbie got screwed by bad  Neuro- HELP
Post by broomhilda on Feb 5th, 2004, 2:39pm
Hi everyone, well yet an unsuccessful visit to the neuro today. He disputed my gp diagnosis of clusters, all the meds I am on(verap, topamax he says do not work), all the research I brought him care of all of you, everything... >:(. All my symptoms are all migraines, pain in my eyes, dripping nose, the pain, the pacing( don't need to go on).....He refuted everything I had with me and told me I do not have clusters they are rare and I am get this a woman >:(. I do not know what to do now, he has taken me off everything put me on auto injector(good, imitrex) and atacand?I have a very cranky call to my gp right now... HELP!!!!!!!!!!!!!!!! >:(

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by Tiannia on Feb 5th, 2004, 2:43pm

on 02/05/04 at 14:39:49, broomhilda wrote:
and told me I do not have clusters they are rare and I am get this a woman >:(. HELP!!!!!!!!!!!!!!!! >:(


I am so sorry. OMG I get tired of hearing that.  I wonder if we ripped on thier manhood they would understand the pain we are in and we could tell them "well now you are a women."  [smiley=sgrin.gif] [smiley=finger.gif] [smiley=bigguns.gif]

Talk to your GP and get into a different Neuro, I know htat is crapy advise, but it is the best that I got.

Tiannia

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by thomas on Feb 5th, 2004, 2:50pm
Bottom line, get a different nuero or let your gp treat you for now on.

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by Edski_1 on Feb 5th, 2004, 3:06pm
Agree with Thomas.

14 years ago I had a neuro first tell me "you have cluster headaches...", then "you have migraines...", then "you just are having sinus headaches.  take sudafed."

I went through almost two years of a cycle with NO TREATMENT, not knowing what the fukk was happening to me.  In retrospect I probably lost a marriage over it.  It's amazing I didn't lose my job at the time over it...

Everything I've read the last 4 months has indicated that I do have clusters...my GP and my neuro have not said otherwise, except to say that thereare some odd symptoms, but basically they are clusers  And I am responding to CH treatments.  Sinus headaches, my a$$...

Women get these things too.  Any doctor that uses that card should be fired immediately.  Get a new neuro.  >:(

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by Mark C on Feb 5th, 2004, 3:11pm
Get a new doctor....this one is a jerk.

Good Luck,
Mark

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by cakelady on Feb 5th, 2004, 3:31pm
Gee...
better check to make sure I'm still female.

Fire the jerk, go back to your GP.

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by Margi on Feb 5th, 2004, 5:15pm
Broomhilda, I see by your registration on the OUCH Canada site that you're in Richmond, BC.  Shoot an email to Tracy Lee (our Vice-President) to see if she can give you the contact information for Dr. Gordon Robinson - he's in the area.  He will see new cluster patients (one of our other folks just got her hubby in to see him). He spoke to us at the convention in Vancouver 2 years ago.  He's AWESOME and he knows women can get clusters (sorry, BobP).
And, get a prescription for oxygen!!  Your gp can write you one.  
Don't take 'no' for answer, girl!

p.s.  this neuro that you saw, he didn't tell you to stop the verap and topomax cold turkey, did he?  PLEASE confirm with the doctor who prescribed them to you before you quit like that!!  It's very dangerous to stop suddenly!!  Especially the verapamil.  Verapamil lowers blood pressure and if you're at more than one pill a day and you stop, your blood pressure could increase drastically!!  

p.p.s.  please think about mailing in this neuro's name to info@clusterheadaches.ca - we'd like to start building a mailing list of doctors to whom we can send updated and accurate cluster information.  Don't worry, we won't send him a letter bomb or anything :)  

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by broomhilda on Feb 5th, 2004, 5:32pm
Hi Margi, I just fired an e mail to Tracy who saw this neuro six years ago but who thought may be he would read every now and then updated info. He did tell me I could stop all my meds cold turkey, verap and Topamax and when I questioned that as well care of all of you, he said oh no side effect from stopping cold turkey. I am so out of my mind here, I just do not know what to do [smiley=huh.gif] >:( I know Dr Robinson is the best, or so I have heard, I guess I will see if I hear back from Tracy, thanks to all of you, this has been a harsh few hours I tell you! :'(

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by don on Feb 5th, 2004, 5:40pm
2 more words,

Later dude!

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by brad267 on Feb 5th, 2004, 5:42pm
Broomie,

Are you sure you're not just a drug-seeker?   ;;D(Just waiting for you to get that response...)

Fire the Jerk!  Ask your GP to prescribe enough meds to give you time to find and interview a competent CH doctor/neuro.  They shouldn't have a problem with that, and know that there's usually a long wait.

Hoping for the best,
Brad

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by athos on Feb 5th, 2004, 5:51pm
Is he affillilated with a local hospital, or other doctors in the area...  This guys seems to be very uncaring, missinformed and a loser... By stopping your meds cold turkey, he is potentially causing you harm...  He desperatly needs a peer review...  Goind to the local hospital that he is affiliated with and talking to their Public Relations representative would get this accomplished.  This will be more effective once you do have a diagnosis from a real neuro and not one that got his degree from a cheerios box...  Go to the PR rep and show him the sources of the research that you have obtained, and how you feel that this is potentially damaging to you as well as others.  It will get his attention, might not help your relationship with him, but it will potentially help the next CH sufferer he might deal with.


--athos

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by t_h_b on Feb 5th, 2004, 6:42pm
DON'T STOP TAKING YOUR MEDS if they're working.  Your GP prescribed them, not this "neuro".  

Since he thinks women don't get clusters, I'll bet he is fairly old, that his medical education is out-of-date and he hasn't kept up with recent research. Ditto what everyone else said--you're better off with your GP treating you.

Since all of your symptoms are migraine symptoms, according to him, I wonder what symptoms he would use to diagnose clusters?

His ignorance is even more astounding because he is a neurologist and because he had the diagnosis HANDED to him by your GP.  

I certainly hope that he doesn't hold himself out to be a headache specialist.  Too bad you can't sue him for just being ignorant.

Maybe 100 clusterheads should mail him a list of cluster symptoms to help this guy with his differential diagnosis skills.

Make sure that your GP knows that this guy is incompetent so he can find someone else to refer to.  At least you can protect others from this uninformed cretin.  And buy your GP a box of candy or something.

Title: [size=2]Re: Newbie got screwed by bad  Neuro- HELP
Post by Cerberus on Feb 5th, 2004, 7:45pm
HeHe....

Two words to tell teh neuro........


YOU'RE FIRED!

Pretty much sums it up fer me, a doc who won't listen even a smidgen to his patient (yeah, I said smidgen) should be fired directly. Doctors sometimes need to be reminded that they are not gods. He should have (at minimum) considdered the evidence and listened to your concerns.

Ramon

Ramon

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by stevegeebe on Feb 5th, 2004, 9:56pm
F-

Steve G

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by Patrick_A on Feb 5th, 2004, 10:31pm
Been exactly there and done exactly that. Walked out of my 1st Neuros office so mad i went straight back to my GP and demanded a 2nd referral. Got exactly what i wanted.
To me, A doctor is nothing but a tool, Some tools are better than others. Some tools are outdated. Use the best tool to your advantage.And remember, CRAFTSMAN replaces all worn out tools! LOL

Patrick :)

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by justasound on Feb 5th, 2004, 10:59pm
Hang in there broomie, tomorrow is another day.....  hopefully a better one..  


lee

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by Edna on Feb 6th, 2004, 12:18am
Ooooooo Patrick......LOL....Yeah Craftsman replaces their tools, that's why my husband is waiting for Craftsman to make bras for me......LOL


ANYWAY

Broom......so sorry for such a rough experience with this neuro. Much good advice here, fire the sucker.....get back to your GP and see where he leads you from there.

Keep us updated, and good luck,
EDNA

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by Thorns on Feb 6th, 2004, 12:21pm
There is an article in Headache: The Journal of Head and Face Pain. Vol 44 Issue 2 Page 186 February 2004. that is titled Migraine and Cluster Headache: Coexistence, Laterality, and Gender. This a case history submitted by Randolph W. Evans, MD with expert opinion by Amish Bahra, MBChB, MRCP.

I do not have access to the online version of the article to tell if it is of any significance for you or not. It can be purchased for a rather steep price ($29) or if you have a medical school/library close to you they should subscribe to this journal. Anyway, it may be worth checking out and then plopping it on the table in front of your neuro=[smiley=looser.gif]

http://www.blackwell-synergy.com/rd.asp?code=HED&goto=journal

Title: Re: Newbie got screwed by bad  Neuro- HELP
Post by broomhilda on Feb 6th, 2004, 1:12pm
Hi everyone, thanks for all your replies and advice, yes I am going to move on to second opinion. He is an older gent who clearly has not been keeping with the times! :)I have been in contact with a local resident who knows a Dr. Robinson who treats cluster in BC and I hope my GP will refer me there I will keep you all posted and hope my GP will stock me with current meds till I see him, thanks for the advice there! Athos, good idea I will check into it but Margi's letter bomb sounded fun-kidding! Thorns I will check on the artcle, thanks! I do agree my GP should get some chocolate next week! Most of all to you out there, thanks :-*don't know what I would do without you!!!!!!!! Andrea aka Broomie!



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