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need help (Read 1080 times)
nightlywolf
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need help
Dec 28th, 2014 at 8:47pm
 
Hi. I have been suffering from cluster headaches for months now and no medications seems to help. Well they help for a bit then stop working. I go to college and hold a job. I have 2 kids and one on the way. I find myself getting angry for no reason and overreacting to the simplest things through frustration. I need some help on how I can cope and how I can help my family as I feel awful for having to put them through this. Any help would be great thanks.
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: need help
Reply #1 - Dec 28th, 2014 at 11:29pm
 
Hi and welcome. You've found somewhere where everyone knows what CH is like either as we have it ourselves or we support someone with it.

Are you working with a headache specialist? GPs and even most neurologists just don't have the skills and experience to work with CH or even diagnose it.

What medications have you got and what dose?

You should have a preventive, something like verapamil, lithium or topomax. This should cut down how many CHs you get. Then you need some abortives for when you get a CH, imitrex injections or nasal spray will kill a CH in a few minutes, as can oxygen using a non-rebreather mask and a high flow rate (read more at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register).

Once you get an effective preventive plus abortives it makes a huge difference to the quality of your life.

Where are you in the world? Someone might be able to direct you to some good local resources.

Keep reading too, you'll learn a whole lot about CH.
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: need help
Reply #2 - Dec 29th, 2014 at 10:04am
 
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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I agree with all o f Mike's coments. IF--you have Cluster, it's a disorder which is not a self-diagnosis, self-treatment problem. Really need a skilled doc.
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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.
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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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There are a number of disorders which MIMIC Cluster but which are not a headache disorder. This why a solid diagnostic work-up is essential.

Without a clear diagnosis it's not wise for us to offer specific treatment suggestions or FOR YOU to start using them. Just confuses the picture.

The emotional strain is not unusual and doesn'ts make you a bad mother. Would it be possible to line up a friend to provide emergency cover for you when you're having an attack? Having the children's care covered will relieve much of your worry/distresss.

AND do let us know what meds, dosing, duration of use, you have been using. ASSUMING you have Cluster, the meds in the PDF file, below, are the most commonly used onces which a good doc should be trying.

IF it becomes too difficult to find a doc, get control of the attacks, etc. at least consider asking for a MEDICAL LEAVE from school so that you don't end up with poor grades blemishing your record.
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Bob Johnson
 
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