Posted by Trudy (184.108.40.206) on December 28, 2000 at 09:19:28:
I posted on the cluster forum and have received no responses, so I'll try here. I've been 98% pain-free since May, when my neuro. started me on a combination of Neurontin and Indomethacin (the ones that do "break through" are only pain levels of about a 1-2, just a little reminder that these are happening). I've had ice-picks for over 20 yrs., but finally got to the point where I couldn't go on so my family doc sent me to IU Med Center. Wonderful neuro. - says I'm very rare (oh gee - thanks), she's read about people who suffer from true ice pick headaches (also known as idiopathic stabbing headaches), but I was the first actual person to come see her for them. We first tried just the Neurontin but it quit working after about a year or so. The combo of the two meds have worked wonderfully until this past Sunday when out of the blue, the stabs wake me up and happen every 5-10 minutes throughout the day - and they are at levels of 9-10. After two phone calls to the neuro. on call, we finally doubled up on the Indomethacin (after trying doubling up on the Neurontin which didn't work) and that seemed to take care of them after an hour or so. You all have been there, the panic I was feeling, the loss of control, the feeling of wanting to just "end it all"...but can any of you give me an insight to why these came back? Since May, the Indomethacin (which is, of course, an anti-inflammatory) has lessened the spot on my head where the ice picks ALWAYS occur, to where even if I get a slight twinge or jab - they didn't hurt. My neuro. is at a loss as to why they came back and why at levels of 9-10 right away. Help - anybody... Her suggestion now is for me to immediately double up on my Indomethacin at the first sign of them coming back...but I'm so afraid of overdoing this and then being forced to suffer rebounds - which I don't think I've ever had - but will this start it? Will the Indomethacin stop working at some point in my life, and if so, - what then...it's the only known med that works on ice picks. Sorry this is long - this latest bout caught us all totally off guard. Can anybody relate to this?
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