Hello @audriana Thank you for sharing your experience with me. It is very comforting to read. You're very brave in having learned to adapt. I haven't wanted my husband to join the community because some of the stories I'm reading are so frightening and he already has lots of fears regarding his condition. When my husband was taking a higher dose of the neurontin he also fell (I wasn't around) but fortunately didn't hurt himself. Currently takes 900 (300 x 3/day) He got himself down to the lowest possible dose of doxepine (has it compounded) so it knocks him out at night without to terrible of a hangover the next day. When he took a higher dose of the doxipene it seemed that his pain was not as bad but his body wasn't functioning in other ways which is why I wondered if possibly there was a version of that type of drug that wasn't basically a sleeping pill. I read about the Cymbalta but I know several people who had very bad experiences with that drug in particular, specially when it came time to get off of it.
His pain is currently mostly in his feet and we found these strange kenkoh sandals and insoles that help distract from the pain. He seems to do best when absorbed in some sort of distraction that he enjoys (music and walking) and I'm hoping he will get back to swimming. Your kind message has given me comfort. Thank you so very much.