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Topic: New to CH, doc is weird and i'm not sure (Read 563 times) |
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fiddlehead
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New to CH, doc is weird and i'm not sure
« on: Jan 22nd, 2008, 11:18pm » |
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Hi. After a week of constant headaches and lots of researching I have come to the conclusion that I have CH. I have almost everything I see on this site (except a droopy eye) and the pain is profoundly wrong. The problem is my neurologist says that it is not possible since I am a woman. She then said that when a woman patient insists she has CH that she suspects drug abuse. (That really put me back, I really was speechless after that)
OK.......I don't even like to take motrin.
So, now I have been able to get out of the last 2 CH with the nasal Zomig. This works so far. Does it matter that she says I don't have CH? Sounds like so many others have more experience/insight with this. I'm tempted to just let her say whatever she wants as long as I can get help with the pain. Any thoughts?
Thanks in advance....
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ski2k
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Re: New to CH, doc is weird and i'm not sure
« Reply #1 on: Jan 22nd, 2008, 11:28pm » |
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Here's my advice in a nutshell.... FIND A NEW NEURO!!
A good thing to try in the meantime, is get yourself some Red Bull, or other energy drink with Taurine and Caffeine in it. When you get the first signs a headache is coming, drink it down FAST. A lot of us with CH have found this simple trick to be just wonderful in aborting a hit very quickly. Caffeine is a vasoconstrictor (shrinks blood vessels), and the Taurine gives it a boost, making it work faster/better. This trick won't diagnose you, but might give you something else to discuss with your NEW neuro.
Hope this helps some!
Adam
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nani
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Re: New to CH, doc is weird and i'm not sure
« Reply #2 on: Jan 22nd, 2008, 11:34pm » |
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Hi fiddlehead, it took me 27 years to get the right diagnosis (from a twenty-something Urgent Care doc, no less!) and my first neuro said the same thing. Women don't get clusters. 
Find a new neuro.
pain free wishes, nani
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fiddlehead
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Re: New to CH, doc is weird and i'm not sure
« Reply #3 on: Jan 22nd, 2008, 11:41pm » |
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Thank you.....just trying to get a good plan in case that Zomig stops working.
That's two for a new neuro.....
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Ray
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Re: New to CH, doc is weird and i'm not sure
« Reply #4 on: Jan 23rd, 2008, 12:11am » |
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Make that 3 for a new neuro...
Take the time to read through here and the links on the left.
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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fiddlehead
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Re: New to CH, doc is weird and i'm not sure
« Reply #5 on: Jan 23rd, 2008, 12:26am » |
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Hi....thanks for the vote. I'm reading every bit of this website and I KNOW I have CH's. It's hard for people, even doc's I guess, to really understand what this is. I can't believe how many years some people have been suffering, it's a long road ahead as I'm 36. This website surely can help one feel supported and armed with sufficient 'amo' to tackle well meaning (and uninformed)physicians.
The zomig's making me loopy, but thank you for the support.
Three for a new neuro..... 
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Lebowski
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Re: New to CH, doc is weird and i'm not sure
« Reply #6 on: Jan 23rd, 2008, 5:30am » |
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I take Zomig as well when these come on and they make me a bit loopy too. I am able to cut the tablets down to 1/4 of a 5mg and if I take them soon enough I will not get a CH. Hope the Zomig works for you.
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thebbz
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Re: New to CH, doc is weird and i'm not sure
« Reply #7 on: Jan 23rd, 2008, 9:12pm » |
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Get a second opinion. Anything a drug user likes wouldn't work for CH anyhow.
 Wimmenz dont get CH
thebb
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Charlotte
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Re: New to CH, doc is weird and i'm not sure
« Reply #8 on: Jan 23rd, 2008, 9:34pm » |
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Count me as another vote to get a new neuro. She may help you by accident but, in a pinch, you need a real person who is listening to you and helping you, on purpose.
Charlotte
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Brew
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Re: New to CH, doc is weird and i'm not sure
« Reply #9 on: Jan 23rd, 2008, 9:44pm » |
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Fiddlehead to Neuro: You're FIRED!
Don't even waste your time trying to explain. Simply ask for a copy of your chart before you leave.
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Always remember that you're unique, just like everyone else.
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Bob_Johnson
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Re: New to CH, doc is weird and i'm not sure
« Reply #10 on: Jan 24th, 2008, 6:51am » |
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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. http://www.achenet.org On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; 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.
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Bob Johnson
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Ghost
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Re: New to CH, doc is weird and i'm not sure
« Reply #11 on: Jan 24th, 2008, 1:52pm » |
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Quote:| The problem is my neurologist says that it is not possible since I am a woman. She then said that when a woman patient insists she has CH that she suspects drug abuse. (That really put me back, I really was speechless after that) |
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Ok 1 doc fired! if anyone else says that you know at that point they are clueless and move on. We seen to have a bunch of addicts here if they are right. we even have a broom riding brit that gets beat up by this and she is all powerful! You know you hurt and that they cant change. dont give up and you will be alright.
Mike
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PollyPocket
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Re: New to CH, doc is weird and i'm not sure
« Reply #12 on: Jan 24th, 2008, 3:27pm » |
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Tell your doc that you know a woman (me) who's had CH for 23 years... right before you fire her ass.
http://www.ouch-us.org/chgeneral/doctors.htm
This should help ya find a new one in your area.
Hugs,
Jen
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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RichardN
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Re: New to CH, doc is weird and i'm not sure
« Reply #13 on: Jan 24th, 2008, 5:29pm » |
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Do you consume alcohol? If so, is it a trigger (as it is for most of us . . . major one for me)? If so, before you next see (and fire) this "specialist", down a couple of beers or shots of brandy just before your appointment . . . I'd bet you'll at least go ahead of everyone else in the waiting room if you get hit.
The "recognized" medical info is here and available if you think it's worth copying and taking to her.
Very often, we see women come having gotten the same response from medical personnel . . . to the patients detriment. I think I may be one of the very few who, upon my first visit to a specialist (oncologist) who, after reading my info stated, "You have cluster headaches? . . . . it's very rare for men to have those" . . .  and for a minute I considered walking out of his office. Reconsidered, as he came very highly recomended and I rationalized that after all, CH was outside his specialty . . . a good decision on my part as I'm still around to tell the story.
Further, his head nurse's husband was the surgeon who put in my last port-o-cath about four months ago. On my initial visit to him (pre-surgery), his statement on seeing CH listed was, "I see you have cluster headaches . . . I understand they can be pretty bad". I looked him dead in the eyes and replied, "They are horrible . . . and I will require 02 and a non-rebreather mask at 12-15 lpm available at all times to abort an attack if I get hit . . . if it's not available, I'll bring my own" He assured me it would be. Morning of surgery was pf. Post surgery, woke up (dazed and confused), and shortly thereafter, before I was really coherent, I felt the beast coming . . . as soon as I reached up and started rubbing the side of my head/face, the nurse was there and strapped a non-rebreather mask on me (I unstrapped the mask . . . habit) at 15 lpm . . . killed him at Kip 4 in about 5 minutes.
The point of this diatribe is that you have to be proactive in your treatment of YOUR condition/pain . . . and you're in the right place to help in that endeavor.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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fiddlehead
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Re: New to CH, doc is weird and i'm not sure
« Reply #14 on: Jan 24th, 2008, 5:42pm » |
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Hi there.....THANK you everybody for confirming my position about the weird doc. Ok, that last suggestion about the alcohol is too funny. Well, not so much.
Just got off the phone with the neuro's nurse, who is PISSED that she has to have a job, and I'm more convinced than ever that they need to go.
I'm wondering if I'm at the end of the cycle now, weird pressure and shadows. Maybe this is the 'big one'. Either way, I know I've got support here.
Thank you.
Helen
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GrandPotentate
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Re: New to CH, doc is weird and i'm not sure
« Reply #15 on: Jan 24th, 2008, 9:42pm » |
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We've got a pretty rare thing, and the stats say it is rarer for women. But they are certainly very present on this site! It can be so hard to find a good doc. I fit the classic CH profile, but had to deal with a doc who thought it weird that a man got migranes and how my migranes had entirely different symptoms than everyone else's. If felt so good to get off his dope after getting a new doc and a better diagnosis!
I hope you can find a better doc soon and fire the sexist bitch. The list of good docs on the Ouch site is oh so short. We could easily get together and make up a really long list of uninformed an unrecommended docs!
I hope your cycle is wrapping up. Give it week, then take the beer test and chinese food test and let us know how it works out!
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Jon
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