Posted by Maria (208.155.155.94) on July 31, 1999 at 06:01:25:
Has anyone had any experience with this drug? Our doctor is considering giving it to my companion after tapering off the prednisone. (Thank you for all your responses earlier - the prednisone isn't helping as much as we thought it would.) We're weighing whether to move on to triamcinolone or indomethacin.
We're in Manila (the Philippines) and CH is virtually unknown here. He suffered through classic misdiagnoses and treatments for more than 3 years - never once did he hear the term "cluster." I did intensive research on whatever I could bring up on my screen about headaches, and when I first read the definition of CH I couldn't believe how perfectly his symptoms matched the chronic CH ones. We had to bring what we found on the 'net to another doctor for him to get even 15 minutes of relief.
It's difficult getting the medications that a lot of you are familiar with - even big drugstores here don't seem to carry prednisone; we had to get our supply from a hospital pharmacy. Imitrex = Imigran around here, but it's not available in spray form, only in tablets (which aren't of much use). Once, when we went to the ER, it was quite disheartening for me to see how unsympathetic the attending resident was to the pain, as if my companion were merely playing it up.
But, we've come a long way since then, and hopefully we're on the right track to freedom from pain.
Thank you so much -