Posted by Cranpain (152.163.213.184) on January 20, 2001 at 21:07:33:
I am an avid reader, and an infrequent poster of this board. I am often amazed at the nature of the inhabitants of our litle planet. Here you see much misery and suffering, yet much compassion and hope. And then, almost as regular as clockwork, here comes someone with "The Cure". Sure enough, folks, this is it!! Guaranteed! I watched the latest fiasco with delight, especially in light of my own experience. Three years ago, I had a balloon and stent procedure to unclog three arteries leaving my heart that were 60-90% blocked. After being a chronic CH sufferer for nearly ten years at that time, I had three months pain free following the procedure. And that was after unblocking arteries! I could not understand "curing" clusters by plugging up arteries deliberately!
Another thing that amazes me is how they adapt to medication. Several times since inception my neuro has changed medication, granting me some temporary relief, only to have the ch's return after a few days. It's almost like they are sentient beings. Not only do they learn to overcome pain medications, but abortives also. In the last case, I was given a combination of Topomax, Verapamil, and Neurontin. I had 16 wonderful PFD's. On my regular Dr's visit, I went in grinning from ear to ear, bragging on him and his drugs. Sure enough, I woke up a 2 A.M. the next morning with a "screamer" that hasn't let up in the 10 days since.
Bottom line: there is no known cause, cure, or permanent relief. Just good support, family and faith. And, as always, those who would prey on the unfortunate.