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Trigeminal Neuralgia

I have TN and I was wondering if anyone could tell me how long it lasts. I'm currently on meds to control it, but I would like to know if I have to stay on these meds forever or when I could eventially get off them.

  1. Hi Nancy, these are good questions to ask your treating physician. People experience TN in different ways and use various treatments to find which ones work best for them. If you haven't already, call your neurologist's office and discuss your concerns with the nurse or make an appt. to talk to the doc. I haven't suffered from TN myself. I hope one of our readers with TN will respond.

    --Kim, moderator

    1. hello I have it too and I have to get a nerve cut I'm my cheek. Some meds help it but I'm sure they won't much longer. Otherwise I'm going to need double the dosage soon. My body eats meds very quickly. I also need more then the average person. It's some weird family trait that I'm trying to get figured out. However trying to get someone to do the testing for a missing or extra gene or chomazone. I have a paradoxical reaction to most meds, they don't work, or we get the 1 in a million side effect. We all are like that. Plus need a lot more meds then they will give me for my height and weight. They need to throw those charts away. Good luck. Hope you can get some help. I believe there are 3 options. Meds, a balloon or cutting it out. I need it cut out. I've been dealing with this for years. Hope you get relief faster then I have been able to.

      1. , I know your comment was meant for another community member, but I had to chime in, as I find your story fascinating! Do doctors have any idea why your body responds so differently to medications? Is it due to how your body metabolizes medications? I wish you were able to get some testing done on you and your family, as this sounds like a frustrating issue for you, but also one that could teach researchers more about how bodies process medications and how to account for that.

        That said, I am so sorry your deal with Trigeminal Neuralgia. I know it can be a very unpleasant problem.

        Best, Erin, Team Member.

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