Quote:
Originally Posted by Bayley
Hi, thanks so much for your post. I was decreasing by 200mg/weekly also, I could cry for the country but am over that hopefully. I was having trouble sleeping also, and am over that (again, hopefully!). I am down to just the 200mg daily, but feel reluctant now to go all the way, its like I feel the need to keep it within my system, just in case. Its the fear of the TN monster. I hope that you are doing ok after your decrease ?
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I had my MVD Oct 7 and I don't think I even was allowed to start decreasing the meds for awhile. Then I did so mostly 100 mg a week. I was very scared to decrease, afraid the pain would come back - my fear was that I would be devastated and without hope if the pain came back. I had to keep repeating to myself that I could handle whatever happened. A previous surgery (balloon procedure) had not worked and the pain had come back after I was off the meds for 3 weeks and 3 days. However this time all went well and I have been pain- and TN medication-free since Decenber 17, 2009.
I guess there are no guarantees but I'm hopeful that I will have many good years, if not a permanent cure, and that if it comes back I will be healthy enough to have another MVD.
So, it's entirely understandable that you are afraid and reluctant to go entirely off the meds. I hope you find you can do it and are OK without the meds! Let us know how it goes!