I didn't want want to share with many people while I was in remission, kind of superstitious that it would disappear if I talked about it. I had GLORIOUS almost 4 months without TN! It returned about 3 days ago, and ohhh, when they say that people forget the pain level, I guess it's true, because I tried NOT to remember the pain, and now that it's back, it's indescribable. I guess I'll learn how to live with it again, but I just wanted those of you who feel hopeless to have hope. You can have remissions. In the past I have even had more than a year at a time of remission, then short time of pain, and another long period of remission. Most of the past 15 years though has been oppressive, changing who I am now compared to who I used to be. I pray that you all can experience remission or spontaneous cure!
Thanks for writing that Sheila. I think a lot of people need to hear that. I am currently doing well most of the time now since I got increased to 1200mg a day in Dec.
Congratulations Donna! So many seem so hopeless with this condition, but they need to know that it can get better, either through meds like you or spontaneously like me..
Sheila, so happy to hear of your remission! I hope you find another one just around the corner!
((( hugs ))) Mimi xx
Thanks so much Mimi. I've discovered a new pain level though, one that many of you are aware of but is not on any Dr's chart. It's not a number, it's called "OMG PLEASE MAKE IT STOP OR KNOCK ME OUT!"
Did you stay on your meds during remissions or wean off?
I wonder how often people have remissions and is it seasonal? Like warm weather?
Kg, Remissions (for me) are not predictable at all. I had pain for a few years before my recent remission, which is now gone again. The only medicine I can take is pain meds, because the anti-seizure meds made my liver react badly. But yes, I cut down my pain meds.One thing I did for 2 months before my remission, is that I read an article about eating hot peppers to dissolve the pain causing brain chemical that settles in your TN. I have pain with hot stuff, so I got the mildest hot peppers of all (banana or pepperoncini) and ate one in the morning with yogurt to coat my mouth. I don't think that's a cure for everyone, but that's the only thing I did differently.
Kg, my Neuro always said if you experience at least 3 weeks pain free on the meds then it’s time to reduce the med …after 9 months I did that and kept reducing until I was off the med and pain free. ( that remission lasted 8 yrs!)
More recently, 2 yrs ago I attempted to reduce again as the med covered the pain, I took away one dose and knew within a few hours that I needed to add it right back.
But that’s the rule my Neuro always followed …
Sheila, ugh, I’m so sorry you’re at “that” level! Are you still taking the peppers?
I hope you find relief soon…sending positive thoughts & vibes, xx