Hello swimmers43, you are a warrior, you have deep resilience, unwavering determination and a relentless desire to keep moving forward despite physical or emotional pain, I admire you, I have given up, that's ok for me, neurologists do not have enough knowledge of our rare, torturing disorder, the horrible meds are a perfect example of the lack of interest in making this disease tolerable, there's not enough of us who have it, I was fortunate to discover Dr. Michael Lim, Johns Hopkins, 2017, I was so desperate with shocking pain, could not take meds, horrible side affects, I even tried to take my life, his Microvascular Decompression operation saved my life, but, after 9 years, the trigeminal neuralgia is rearing its ugly head with this tight, vise like condition in and around my head, this monster hits us in many different ways.
@lasthurrah9 Thank you for your reply. I am so sorry for your situation and that it led you to attempting to take your life. I am glad you didn't. I recently had one week of happiness with no pain as the Baclofen combined with the Carbamazepine worked to take away the pain and make me feel like myself again. And then, it didn't. So disappointing and distressing. I can't sing, talk, smile, laugh without making the pain increase. I am tired. I'm ready to become a hermit, go into a cloistered convent...be quiet without demands from others excluding my beloved husband. Friends always say I need to get out, be with them, etc. I don't. I'm happy at home. Good luck to us my friend.