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What to ask the Neurologists for CH (Read 820 times)
stevenator
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What to ask the Neurologists for CH
Mar 27th, 2015 at 3:16am
 
Hello,
This is my first time on here and am happy to see what such a great site it is! I have been dealing with cluster headaches for more then 5 years now. They seem to come along during the end of winter or the beginning of spring. They last for about 1-3 months.  I have seen a neurologist before and she put me on  240 mg of verapamil and 10 mill melatonin a day.  Lately the headaches have been coming anytime between 11pm and 11am.  Ive had to up my dose on the verapamil to 320 mg- 400mg because the 240 doesnt seem to be enough.  Even with the increase of dose I dont feel like its helping all that much.  Well i guess what I am asking is what kind of questions should I ask my neurologist during my next visit? btw this will not be the same neurologist as the previous visit for I have had to change due to insurance issues.  Thanks for reading this and I hope we all could end this stupid pain one day.
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Bob Johnson
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Re: What to ask the Neurologists for CH
Reply #1 - Mar 27th, 2015 at 4:20pm
 
Your experience with a general neurologist illustrates why we recommend a headache specialist, if at all possilbe. Neuros have meager education around complex headache disorders.

But, if you don't want to consider a change, print the PDF file, below and use as a discussion tool.

Your Verap dose is rather low.
=====

LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.


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Bob Johnson
 
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Mike NZ
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Re: What to ask the Neurologists for CH
Reply #2 - Mar 27th, 2015 at 4:34pm
 
Hi and welcome

I agree with Bob that your dose of 240mg a day was pretty low. Most people need 360-480mg a day but some go to 1000mg a day to get relief. It can also take 7-10 days for a dose change to take effect.

Have you got an abortive for when you get a CH? Something like oxygen (via a non-rebreather mask at a high flow rate) or imitrex (imigran / sumatriptan) injections will both kill off a CH in minutes, so you don't need to ride out the CH.

Make sure the new person you see has experience in complex headaches like CH, which isn't always common in most neurologists.

And read up all you can here, there is so much to learn.
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