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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I can't believe I'm here
        
(Message started by: CH_sis_and_dd on Nov 26^th, 2007, 11:35pm)

Title: I can't believe I'm here
Post by CH_sis_and_dd on Nov 26^th, 2007, 11:35pm

I had posted a while back about my brother who suffers greatly from CH (he is in the hospital right now) and my father who did suffer. Well, a lot has happened since then. I ended up in the ER. I went to the ER because my normally low heart rate became alarmingly low--46. While enduring the 2 hour wait to be triaged, I developed Horner's and this pain that just about did me in. I couldn't lay my head on a pillow. It was then that I realized it was clusters. Of course by the time they triaged me the pain had kicked in and my HR and BP (which was also very low) were in "normal" range.

After 6 hours in the ER they dx. me as migraine sufferer and I just wanted to get out of there. Three days later I was awakened out of sleep with such a horrid headache. All the times I had seen my brother and father endure this came back to haunt me. All I could think about was the my wonderful DH and children did not deserve this.

My dr. referred me to a neurologist and I was so ready to start the nightmare of finding someone who would believe me. If you can believe it, I got very lucky. He dx. me with CPH and although he claimed they were not clusters, my family dr. had a book and said they were in the cluster family.

As with many of you--looking back I realized I had a episode back in my 20's. Was dx. as sinus infections, but why wouldn't the Darvacet at least stop the pain at the time? I even had the bleed throughs on my face like my father (and now my brother).

I almost hate to post, that so far indomethacin has helped me. It doesn't stop the symptoms, but it does hold off the pain if I take it soon enough.

I am hoping to go to my brother's dr. in Houston, not for treatment, but to see if he would like to do some research. I am nothing like my brother in appearance,personality or habits.

Anyway, that's me. I'll be checking in. Right now I'm more worried about my brother than myself.

Sar

Title: Re: I can't believe I'm here
Post by Bob_Johnson on Nov 28^th, 2007, 8:57am

Time to start doing some coherent reading/learning.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.plainboard.com/ch/chtherapy.pdf
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http://www.medifocushealth.com/NR019/index.php

Good source of medical information on a broad range of serious medical conditions. Worth exploring.
This link direct to CH.
(Thanks to "DrBB" for directing to this site, 11/07.)