It’s now just over 8 months since my mvd. I had such a great recovery with no numbness and only the very very occasional twinge, then once off mess, no pain at all. Cured, or so my neurosurgeon said. I went back to see him in august and told him that I get an occasional twinge, maybe once a week, with that creeping crawling feeling sometimes under my right eye. My tn pain had been in my mandibular branch of the nerve. My neuro had told me that the tn would remain my “Achilles heel” whenever I was stressed or tired. Well, he’s right. I am particularly stressed at work at the moment, which doesn’t look like letting up anytime soon, and my tn pain, with electric shock pains have been increasing so much over the last couple of weeks that I have had to go back on tegretol, just 50 mg in the night, and I’ve just added 50 mg in the morning. So low, and it’s taken almost all the pain away. The most confusing thing is that the pain is all in the central branch of the nerve, not where it was before. My top teeth feel like they are squeezing together and I notice that I am clenching my teeth often, both if which I used to do before my mvd. I did have a fall end of August and cracked my head on the footpath, but I was having twinge pains before that which my neuro had said was still normal and to give it time from the surgery.
Thing is, I am just so scared that this is going to get progressively worse. I know that you have to give it time, but to have been so good and now going backwards is just so scary. I go back to my neuro for what should be my las appointment in February. So until then, I will try to take it easy and not to dwell on it, but this is hard to do.
I hope all of you have a good day on TN Awareness day. I am taking it easy, spending the day with the family as it’s a public holiday with no work and no school for the kids. I will take the dog for a walk and maybe sit and read my book. De-stress…xxx
Aw Gen, I’m so sorry you’ve had to start low dose meds, but I’m glad the low dose seems to help. Stress will definitely aggravate and a knock to your head can too.
I know it’s hard but please try not to stress about the pain, really make a concerted effort to focus away from the pain. TN has a mind of its own, until we know what causes it we can’t predict it’s course…
When my TN came out of remission after 8 years the pain occurred differently then before. It is quite normal apparently for the pain to change . At initial diagnosis of TN 1, my pain affected me only under my right eye, when it came back, there was no eye involvement it was all ear, teeth, jaw, cheek.
Same with my left side. And last year as it progressed it developed type 1 shocks when it has always been only type 2.
All this to say not to be surprised if your pain is different after MVD.
You are completely right, no dwelling, take it easy, and do your best to de-stress, I’ll continue to try the same…thinking of you my friend, big (((( hugs )))), Mimi xx
Ohhhh, after MVD
my pain came back at 11 weeks…hung around a few weeks, left for a year!
Then came back small for a few months…
and now at 2 years
no face patches for pain and no meds.
I know that I will have to have a second MVD someday…it’s not a cure, ups and downs
I hope you have only ups in the near future!
Can you get lidocaine patches for face? I took less med that way. Helps for 12 hours!