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Cluster Headache Help and Support >> Getting to Know Ya >> Headache by any other name....
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Message started by Granny Arizona on Jan 30th, 2011 at 8:02pm

Title: Headache by any other name....
Post by Granny Arizona on Jan 30th, 2011 at 8:02pm
Last winter, I started having headaches like you describe here.  I thought they were migraine and went to Arizona Pain Specialists.  They started treatment and by May, my headaches quit.  I had a pain free summer but in October, the pain returned.  Always at night between 2 and 4 am.  Once awake, i cannot return to sleep.  Sometimes the pain is just screaming... but sometimes not as bad.  My question is:  Do your cluster symptoms include headaches with  a varying degree of pain?  I am convinced that I do have cluster headaches but my chiropractor says he won't "name" my pain.  I really don't care what you call it... when it is really ripping, it is like having my scalp separating from my skull.  I live in fear and dread of the middle of the night.  I'm glad to find people who are able to live with this debilitating condition.  It is ruining my life.

Granny Arizona...

Title: Re: Headache by any other name....
Post by Bob Johnson on Jan 30th, 2011 at 8:14pm
Yes, cluster pain can vary to a surprising degree and move to different parts of your head.

But that's not my immediate concern. If you are truly are "granny"i.e., 50+ I would suggest you work with a headache specialist. The appearance of clusters from middle age on can be a sign of another condition which mimics Cluster but may be more serious.

PAIN clinics are not necessarily the best source of knowledge for headaches. Actually most docs, even neurologists, have low levels of education and useful experience with complex headache disorders.

So, if you have the option:

LOCATING HEADACHE SPECIALIST

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE 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.
===

Cluster isn't a simple disorder easily diagnosed or treated. Get with an expert from the start, if you can.

Title: Re: Headache by any other name....
Post by Guiseppi on Jan 30th, 2011 at 9:57pm
Bob's spot on. If it is CH, your chiropractor is the LAST person on the planet who will help you. Many have tried chiropractic treatment for CH, none have had any success. Get to a headache specialist, get a work up done to eliminate any of the mnore sinister issues, get a firm diagnosis, and get started fighting back!

Good luck on your diagnostic journey.

Joe

Title: Re: Headache by any other name....
Post by bejeeber on Jan 30th, 2011 at 10:19pm
+ 1 here about the headache specialist.

Most rank and file neurologists are actually horribly ignorant about CH.  An actual headache specialist on the other hand can be pretty much trusted for an accurate diagnosis.

Title: Re: Headache by any other name....
Post by Granny Arizona on Jan 31st, 2011 at 8:59am
I can't thank you enough!  All who have responded.  I will certainly look into finding a doctor that specializes in headaches.  You certainly know the "ins and outs" and I really glad I found you.  Thanks again for helping... if you don't mind, I'd like to hang around until Cluster can be definitely ruled out. 
Granny Arizona  ( and the "granny" tag is legit!) 

Title: Re: Headache by any other name....
Post by Bob Johnson on Jan 31st, 2011 at 9:42am
Granny, hang around as long as you wish! We have some 8,000 members, most of whom are silent but still, we trust, able to draw some helpful information.

Title: Re: Headache by any other name....
Post by Guiseppi on Jan 31st, 2011 at 5:07pm
Absolutely stick around, please keep us updated as you go through the apointment/diagnosis process! :)

Joe

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