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crumpy
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Chronic Cluster Headaches since 13
« on: Sep 6th, 2007, 9:59am »
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Hi.
 
I have been lurking for awhile.  I have had cluster headaches since I was 13.  I am 31 now.  I did have a brief period where they went away 16-17, but they came back with vengeance.  
 
I am a rare case since they are chronic and I started with them so young.   I have been to multiple doctors, GTU, John Hopkins, NIH, and many others.   I have run the gambit of treatments.  
 
They are ruining my life.  I am trying to find some off the wall treatment.   Any ideas would be great.  I went as far as a shock treatment study.
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Re: Chronic Cluster Headaches since 13
« Reply #1 on: Sep 6th, 2007, 11:22am »
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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...."Wink
 
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Re: Chronic Cluster Headaches since 13
« Reply #2 on: Sep 6th, 2007, 8:27pm »
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Hi Crumpy!!
 
Welcome aboard!!
 
Sorry to hear you are chronic. Other chronic will come later to talk to you.
 
There are several treatments out there. Traditional medicine and alternative medicine. You just have to find what works for you.
 
you can check information at:
 
http://www.ouch-us.org/index.shtml
 
and:
 
http://www.clusterbusters.com/
 
but for a lot of us, Oxygen is the best abortive .
 
Wishing you pain free days and nights!
 
          Rosy.
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Re: Chronic Cluster Headaches since 13
« Reply #3 on: Sep 8th, 2007, 1:10am »
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Hey Crumpy,
 
 
    Been chronic since I was 14 and I now now 43(hey today is my b-day)it is a bitch being chronic,however twice I did get relief from histamine desensitization.The first time 8 years and the second time 2 years actually I'm still on the second round of desensitization rite now it's more like 2 1/2 years now.What I mean by relief is getting hit between 4 and say 10 times a month (something like that)I consider that a success considering I was getting hit 2 to 3 times a day for about 15 years til I finally got treatment.If I stay true to my meds(not forget to take them)I will get hit very few times.The key is not to miss my meds (Verapmil 480 mg a day)   When you find what works for you(and you probably )you learn how to manage them to a point that they don't as you say"ruin your life".Just don't give up when or if your doc tries some meds and they don't work.Then try something else and keep tying til you find what works for you.Asking questions and reading on this site is a start so when you go to your doc you will know what to ask him or her.
 
 
 
Good luck bud and welcome to your new family.
 
 
 
 
 
 
Dave
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