Posted by Rich S. on February 01, 1999 at 18:36:59:
Been chronic now 2.5+years. Using ergotamine mostly. Started a prednisone regime a few months, with the understanding that it could not be constant. WELLL - It worked, but as soon as I went off the tapered dosages, CH came back with a vengeance. I'd wait a couple weeks, and start over with the Prednisone. Some ugly side effects, but.....I've been on constant prednisone for over 8 weeks now, and my neurologist (Kaiser medical)finally called me in for a consultation. He is a sufferer also.
He basically stated that we had to get serious (why not sooner, I don't know). He insists that I've got to get off (and stay off) the prednisone, and has started me on an Indocin treatment, along with the ergotamine. Also scheduled a new MRI (with dye).
I don't really know what difference this going to make; if indocin will help; or what. Its been great for the last 4 weeks (maybe 10 episodes of varying severity). My point is that this guy is actually sympathetic, and wants to accomplish some treatment, and sometimes that's all we've got. I've lost all hope before; forgot what painfree was, and was a basket case. For this brief period I'm just thankful for relief.
Rich S.