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maryo
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Hi there,
The doctor I had for 29 years retired and so I have had to find a new doc, and right in the middle of my worst cluster ever. I guess she's helpful in a general sense but I don''t think she knows much about clusters.
Does anyone know of a doc knowledgeable about ch in the state of Maine?
I'm curious to know from those who have a good working relationship with their doc, what kinds of things seem most helpful?
I researched some info on Verapamil today and faxed my doc about it because she has me on long-acting verapamil. I figured that would set the stage for a productive conversation by phone. But I missed her call, and though she told my son she would call back she never did. So I'm left hanging with a regimen that isn't working. I am so frickin desperate at this point from the intensity and frequency of headaches that the failure to connect with her really upset me. Of course the office is closed tomorrow. I guess I have to keep shopping for a doc, but that will take time, and in the meantime I seem to be spinning my wheels.
Really, I have the knowledge, and certainly the motivation, to slowly figure out a regimen that works. I can monitor my BP at home to make sure I'm not taking too much verapamil. But they write the scrips.
Any suggestions?
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Rosybabe
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Re: doctors
« Reply #1 on: Dec 31st, 2007, 5:16pm » |
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Hi!
You can check the Ouch site for recommended Doctors, here is the link:
http://www.ouch-us.org/chgeneral/doctors.htm
Hope that helps...
Pain free wishes for you.
Rosy.
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maryo
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Re: doctors
« Reply #2 on: Dec 31st, 2007, 5:20pm » |
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Yeah I checked that earlier. THere's one name for the entire state of Maine, Ann Hurd, but I cannot find anyone by that name.
I'm hoping someone from Maine will respond. Actually, now that I think of it, I can probably send emails to Maine members on this site . . .
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Linda_Howell
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Re: doctors
« Reply #3 on: Dec 31st, 2007, 5:31pm » |
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You might try calling several GP's if you don't have a Neuro near you, and asking to speak to the nurse in charge and ask them if the Dr. has/had any CH patients now or in the past. That would save a lot of time and money.
Print out from here and on the OUCH website any and all pertinent information to take with you. Don't make it TOO much info. because they haven't got the time or patience to read everything. But if you give them a working knowledge of CH you will come off sounding like you know what you're talking about and they will respect you more.
That is what I did with the Dr. I've been seeing for the last 20 yrs. Now when I go in to see him he asks ME what is new in the field of CH and do I want to try anything that we haven't already. Getting hit right in front of him in his office didn't hurt either. 
Linda
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Annette
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Re: doctors
« Reply #4 on: Dec 31st, 2007, 5:48pm » |
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Please do not increase the dosage of Verapamil unless advised its safe to do so by your doctor. Its not just about blood pressure. One needs to have a cardiogram to make sure the heart has not been affected with each increase in meds.
Verapamil is a calcium channel blocker and too much of it can also cause problems with the smooth muscles in the walls of your bowels, especially given the fact that you have had small bowel obstruction before and it appeared the cause had not been established.
I totally understand your need to have CH quickly under control because of the pain but given your age and other medical conditions/complications that you have please be extra careful.
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maryo
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Re: doctors
« Reply #5 on: Dec 31st, 2007, 6:35pm » |
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Small bowel obstruction? You must be thinking of someone else. I have no other health problems other than ch.
I did confer with the on-call doc and he was fine with a change in regimen to short-acting verapamil. As far as an EKG, I guess I'll have to call back Wednesday and request one because none of the docs I've talked to so far has mentioned this.
I got a little bit smarter this evening and started the conversation with the doc by asking, "Do you know about cluster headaches?" He seemed more open-minded than the others.
Thanks for all the help.
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Annette
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Re: doctors
« Reply #6 on: Dec 31st, 2007, 8:46pm » |
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on Dec 31st, 2007, 6:35pm, maryo wrote:Small bowel obstruction? You must be thinking of someone else. I have no other health problems other than ch.
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Sorry, my bad !
Please double check with your doctors about a cardiogram with increasing dose of Verapamil. It can cause abnormality in heart beats and conduction rate so most of the time, change in dosage is preceded by a cardiogram to make sure.
Good luck and painfree wishes to you.
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chewy
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Great response from a Doctor.
Thats what I'd want to hear!
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Bob_Johnson
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Re: doctors
« Reply #8 on: Dec 31st, 2007, 9:20pm » |
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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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vietvet2tours
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Re: doctors
« Reply #9 on: Dec 31st, 2007, 9:23pm » |
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on Dec 31st, 2007, 8:52pm, chewy wrote:
Great response from a Doctor.
Thats what I'd want to hear! |
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maryo
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Re: doctors
« Reply #10 on: Dec 31st, 2007, 10:58pm » |
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Great suggestions, Bob. "Female hysteria syndrome" hits the nail on the head. I work in the medical system where I am a patient. So I know there's no resource there. I'll check out the ones you mention.
I'm passing on festivities this evening and staying home with my supportive husband and my kids who grew up seeing me suffer and possibly understand it best. It's a GREAT feeling getting support from you folks and my family.
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samborambo
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Re: doctors
« Reply #11 on: Jan 1st, 2008, 12:03pm » |
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on Dec 31st, 2007, 5:31pm, Linda_Howell wrote:
You might try calling several GP's if you don't have a Neuro near you, and asking to speak to the nurse in charge and ask them if the Dr. has/had any CH patients now or in the past. That would save a lot of time and money.
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I know in Canada it may be different because we don't pay for each doctor's visit.. that being said, whenever I've asked a doctor or neurologist if he has treated cluster sufferers before, they immediately become extremely defensive and act as if I've insulted them. It really sets the stage for an unpleasant experience. I was wondering what exactly you say so that they don't get their guard up...The response I get from the secretary or nurse is almost always, "why do you ask" and then my response is simply that i'd like to have someone treating me with experience in this field...that hasn't seemed to be the right response
Thanks
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DennisM1045
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Re: doctors
« Reply #12 on: Jan 1st, 2008, 12:11pm » |
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Hi Mary,
How far up state are you? If you can get to Massachusetts there are several good Doctors around here.
-Dennis-
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maryo
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Re: doctors
« Reply #13 on: Jan 1st, 2008, 12:50pm » |
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I'd love to hear who the docs are in Mass.
A good question for the medical people might be, "How many patients with cluster headache syndrome have you treated?" If this is responded to defensively, that's a sign they're not the one for us.
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DennisM1045
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Re: doctors
« Reply #14 on: Jan 1st, 2008, 1:17pm » |
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Check you PMs 
-Dennis-
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deltadarlin
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Re: doctors
« Reply #15 on: Jan 1st, 2008, 1:29pm » |
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Maryo
Ann Hurd is listed as Physicians Assistant- her snail mail addy is 117 Auburn St. Portland ME. Her phone # is (207) 797-4445 (thank-you anywho.com).
'darlin
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maryo
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Re: doctors
« Reply #16 on: Jan 3rd, 2008, 8:44pm » |
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Update:
I phoned my physician's office Wednesday and got a different medical assistant who LISTENED, took notes, and didn't rush me. I said I was despondont, that I'd spent two days in the past week crying. I came very close to enlightening them that cluster headaches are also known as suicide headaches but didn't because I didn't want some crisis worker on my doorstep. I did sniffle and cry. I didn't go dramatic on purpose, it just happened, and all of the sudden I started getting prompt and respectful responses. I think word got around the office that I was maybe depressed and possibly suicidal? Works for me. In addition to giving me more than a handful of verapamil, doc prescribed Ambien, Ativan and clonopin. So I have a whole arsenal of meds to help me sleep, cope, and win this f..ing battle. But at the same time I am interviewing a couple of other doctors. I want one with the right attitude. I think I'll know it when I see it.
Everyone, thanks for your help.
Was pain free last night. Woke up with a shadow, popped a couple cafergot, slept through till morning, actually got out of bed with a wag in my tail.
Good thing about ch is getting to know you all.
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