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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> I Started Down A New Path (mistake?)

Message started by Granny Arizona on Aug 24th, 2011 at 8:52am

Title: I Started Down A New Path (mistake?)
Post by Granny Arizona on Aug 24th, 2011 at 8:52am
Hi Everyone... I've done what I said I'd never do.  My neurologist blew me off so I returned to my primary care doc.  She suggested my problem is probably trigeminal neuralia and I think she is closer to it than the TMJ DX'd by the neurologist. 

She started me on Tegretol with a 2 week prednisone taper.  (how awful)...  I'm also communicating with the RC seed & mushroom people.  I'm a little frightened by that idea but WHY...if I can do the Tegretol and prednisone???  Anything else should be "sweet".

Anyway.  I'm so confused and worn out I don't know what to do next.  I guess I'll see this through.  The primary doc also set me up for a contrast image MRI.  That might tell something too. 

It isn't simple or easy until you find your silver bullet! 

Be well everyone

Title: Re: I Started Down A New Path (mistake?)
Post by NotH20 on Aug 24th, 2011 at 9:05am
Stay strong Linda.  Sorry you're having such a hard time.

Wishing you lots of PF days.


Title: Re: I Started Down A New Path (mistake?)
Post by mikstudie on Aug 24th, 2011 at 11:26am
Hang in there,you found the right place here,read,read,re

Title: Re: I Started Down A New Path (mistake?)
Post by Bob Johnson on Aug 24th, 2011 at 12:49pm
Linda: I've just scanned all the messages you have posted here. Found myself a bit confused by your listing of a variety of theories of causation, different treatments you mention (but not clear that you are, or have, used them [ever?, for long?].

Basically, I'm sitting here, looking at this screen, and wondering what is your program for prevention and aborting attacks?

Years of participation here and reading medical literature has lead me to a fairly conservative position re. treatment of Cluster:  Using approaches with an established effectiveness and safety record; being patient while the dose/med changes which are routinely needed with Cluster are made; fair time trials of any program before making changes--these are the key elements in gaining control.

Trying the newest/latest/most novel is starting at the wrong end of the spectrum of treatments. This approach means you becoming the test subject vs. using treatments where we have good, estlished data. (The newest treatments are always waiting should the established stuff not work for you.)

The PDF file, below, is simply the latest evaluation of effectivness of meds which, if used, can guide you and your doc.

And you know that we have so much solid medical material, regularly posted. It does, however, require  a commitment to study & understand it, as you work with a doc who also understands.

I'd suggest, in addition to the other stuff posted here, that you print out this 50-pg outline from one of the better headache docs in the U.S. Much of it does not apply directly to Cluster--but, as a whole, you will find a systematic approach to treating headache. It's a blend of the specific and the global treatment philosopy--worth the time. (It's free.)

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

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