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Topic: 9 years with pain (Read 274 times) |
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chandler
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9 years with pain
« on: Feb 12th, 2005, 5:36pm » |
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This is my first time on CH.COM. I have had CH's now for approximately 9 years. Started when I was 24 and seems to be getting worse. I was diagnosed with episodic, usually May, June, and July. The past four years I've been having my cycle not only in those three months but another cycle starting in November and ending in January. My last one in this cycle was this morning at 6:00 am., I popped a shot of IMITREX and went to bed. I'm currently on verapamil and lithium (cr). I have tried other drugs but nothing has been effective. I have noticed no difference while taking lithium and verapamil. Prednisone is usually effective for aborting the cycle but lately that has only been effective for a few days, but those few days were great. Last year I spent two weeks in a Hospital in Chicago getting a steady dose of histamine in hopes that it would the trick. I was informed that 70% of CH patients respond well with this treatment and it may keep you CH free for years. I guess I was the other 30%. Abortives for me are IMITREX and 02. I'm curious about surgery but also worried about the outcome. I see a neurologist in March. Any info about surgery would be great...
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Kris_in_SJ
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There's no place like home.
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Re: 9 years with pain
« Reply #1 on: Feb 12th, 2005, 7:48pm » |
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Hi Chandler,
Welcome - sorry you have to be here.
You might want to try a PM to Unsolved. He also went through the Histamine treatment in Chicago a few months ago. I believe he is also in your 30%.
There's been much talk on the board about various surgeries - even deep brain surgery. Frankly, just the thought of something like that makes me cringe. If nobody more informed than me comes along, you might want to do a search related to surgery to pull up old threads.
Sorry you're suffering right now. Wishing you PFDAN!
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: 9 years with pain
« Reply #2 on: Feb 13th, 2005, 3:14am » |
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Hi Chandler! 
Welcome aboard...
I am so sorry that you have CH...  But I am very glad that you found your way to this site.
I recall seeing here posts about surgeries... It has helped some and did nothing for others. But do check out the older messages for more info.
Best wishes & PFdays,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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don
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If you are episodic then you are not a candidate for surgery.
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Bob_Johnson
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Re: 9 years with pain
« Reply #4 on: Feb 14th, 2005, 7:35pm » |
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Trials with different doses of your meds is standard with cluster. If your doc has not tried this, I'd start talking about it.
Surgery has been subject of a number of medical reports but my overall impression is that the outcomes are not good and sometimes side effects are significant. I would not consider any form of surgery until I had exhausted the many meds/combinations/doses where we have good experience about outcomes.
Clearly, if you haven't found a headache specialist, this would be a good starting point.
You might print out this long article to use as a talking point with your doc:
http://www.headachedrugs.com/pdf/HA2005.pdf
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Bob Johnson
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maureen
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Re: 9 years with pain
« Reply #5 on: Feb 15th, 2005, 12:22pm » |
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Hello Chandler
Welcome
I to was considering talking to my Dr about the surgery, before I found this site. After talking to people on here and reading the posts, I kept hearing not so good things about it. Many people said after surgery the Ha's switched sides and seemed worse. It took 19 yrs but I have finally found somethings that work thanks mostly to this board. Good luck with your search lots of info here a many people very well educated on CH. Ask questions there is always someone who can answer them.
Good luck to you
Maureen
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thomas
CH.com Alumnus
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"Hit like a phillips head into my brain."
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Re: 9 years with pain
« Reply #6 on: Feb 15th, 2005, 3:37pm » |
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I'd try the shrooms before surgery, the success rate appears to be astronomically higher with the shrooms.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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