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Topic: Interview Your Neuro/Doc BEFORE....... (Read 291 times) |
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BarbaraD
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Interview Your Neuro/Doc BEFORE.......
« on: Jan 31st, 2005, 7:00am » |
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This has been said in a lot of posts but seems to be one of the biggest problems we all face.... Finding a neuro who actually knows what a cluster is.....
When you go to a new doc - INTERVIEW him/her. Ask questions about his/her credentials - How many cluster patients have you treated? What is your "standard" treatment? (if they don't say O2, trex, and the other treatments listed on this board, and a lot don't, get out and look for the next one). Where did you go to school? Do you know about the research Dr. Goalsby is doing? Etc. Get your list of questions ready before you go in.
If they get uptight and start acting like they are gods - get out - you're not going to get any help there.
We are paying these guys to "treat" us, but it's our lives on the line (our pain) and we have the RIGHT to be a part of our treatment. If they're not willing to LISTEN to us - then find someone else. Sometimes your primary doc can be trained (if he/she is still willing to LEARN) and you can get help there.
We go to these docs for HELP, but we need to remember that just because they have a MD after their name - they don't know everything. Most of us who live with CH probably know more about them than 99% of the doctors we go to. Don't let them intimidate you.
If you're lucky you'll find a doctor YOU can work with and get some help. But you may have to go thru a lot of interviews to get there.
My neurologist treats about (the last time I asked him) 35 cluster patients and keeps up with the latest stuff on headaches. I've been his problem child for years and a challenge (his words) for him. We always discuss what's working for his other CH patients. He and my primary doc work together with my problems. But they both listen to me. I don't mind paying either one of them because I get my money's worth.
I'm really serious about this kids. Just because you go to a neuro doesn't mean you're getting the help you need. Interview them BEFORE you let them treat you or you're liable to have bigger problems than you had when you went in.
Hugs BD
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E-Double
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Re: Interview Your Neuro/Doc BEFORE.......
« Reply #1 on: Jan 31st, 2005, 2:58pm » |
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very good advice
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Tiannia
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Re: Interview Your Neuro/Doc BEFORE.......
« Reply #2 on: Jan 31st, 2005, 3:22pm » |
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on Jan 31st, 2005, 7:00am, BarbaraD wrote:This has been said in a lot of posts but seems to be one of the biggest problems we all face.... Finding a neuro who actually knows what a cluster is.....
When you go to a new doc - INTERVIEW him/her. Ask questions about his/her credentials - How many cluster patients have you treated? What is your "standard" treatment? (if they don't say O2, trex, and the other treatments listed on this board, and a lot don't, get out and look for the next one). Hugs BD
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This is a good idea, but not always possible. When it takes 6-8 months to get the referal to one neuro through some insurances, you dont always have the luzury to just walking out and finding the next one.
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AussieBrian
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Re: Interview Your Neuro/Doc BEFORE.......
« Reply #3 on: Jan 31st, 2005, 7:45pm » |
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I'll admit to having remarkably little faith in the medical proffession since the neuro tried to kill me, but interviewing the doc I reckon is essential.
I ask them simply, "Are you familiar with cluster headache," and their answer tells not just of their knowlege, but of their attitude.
One told me she hadn't come across it since medical school, but would I come back later in the day. Turned out to be the best doc I ever had and I miss her terribly.
Brian.
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BarbaraD
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Re: Interview Your Neuro/Doc BEFORE.......
« Reply #4 on: Feb 1st, 2005, 7:03am » |
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on Jan 31st, 2005, 3:22pm, Tiannia wrote:
This is a good idea, but not always possible. When it takes 6-8 months to get the referal to one neuro through some insurances, you dont always have the luzury to just walking out and finding the next one. |
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Better to walk out than to be misdiagnosed or mistreated.
I had gotten to the point of refusing to go to another neuro and told my primary doc that he and I would treat me - I was tired of "experts". I got really bad and he put me in the hospital and "snuck" in my current neuro for a consult. Turned out that "this" one was very knowledgable about CH and broke that cycle. That was the fastest way to get a neuro - a hospital consult. You might try that.
It's not easy to find the "right" doctor or the "right" neuro. But if you keep looking, you'll find one who will treat you properly. I went thru about 20 non-knowledgable neuros before I found (or my primary doc found) the current one. I've been with him about 10 years now.
Hugs BD
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Re: Interview Your Neuro/Doc BEFORE.......
« Reply #5 on: Feb 1st, 2005, 7:16am » |
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EXCELLENT ADVICE BARB...
One thing u said, which i know can be very true is that....we can know more about our own clusters than docs.....
my neuro once prescribed some depakote for me, 500 mg a day, along with my 240 mg a day of verapamil.
it didnt prevent my headaches...and at the time, i didnt have any abortive, other than O2 from the ambulance......
so i didnt have an abortive ready at my disposal, and my preventive wasnt working.....
I was getting hit HARD, i mean constant k8's all throughout the day....AND that DULL ass aggravating pain that you get while it leaves, WOULD NOT LEAVE ALL THE WAY...IT LURKED, OR SHADOWED at around a good k3....not enough to have me pacing, but enough just enough to drive me crazy.....
I WAS DESPERATE, SO DESPERATE, I stopped taking the DEPAKOTE AND DOUBLED MY VERAPAMIL, on my own, without doctors consent.......i do not advise this by any means.....but at the time i was so desperate for anything to work.....
doubled the dosage and the clusters went away.....for a few weeks.....when they came back, it was mostly just a shadow.......i was eternally grateful.
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