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-   -   New Here - Just had MVD, tapering off Tegretol (https://www.neurotalk.org/trigeminal-neuralgia/106544-mvd-tapering-tegretol.html)

jjlsongbird 12-29-2009 07:27 AM

Quote:

Originally Posted by mean laureen (Post 604504)
I know that sounds crazy and that's just me being paranoid. ... How are you doing so far? No pains or twinges I hope?

Laureen

Doesn't sound at all crazy to me! Not after the pain you have experienced!

So far so good for me. When I went off the meds after the rhizotomy years ago I had a lot of numbness which I didn't like except that it made me feel safe. When that numbness worn off over the years, I started to worry. And I worry a little now. Fortunately I've been too busy to do too much of it.

mean laureen 01-05-2010 11:21 AM

Hi Jean, Happy New Year! Let's hope it's a good one. So far I've been doing great this week with my latest decrease. After about 3 days I started having this weird sort of pain in my ear/cheek area. So I just took the evening neurontin a couple hours early and it went away as soon as I took it. All of this cold and snowy weather has been a great test for me, as that used to be a trigger also. I hope everything is going great with you. Still pain free? I hope so. Take care, Laureen

jjlsongbird 01-08-2010 08:56 AM

Hi, Laureen,

I'm glad you are doing well! As of yesterday I have been off the meds for 3 weeks! Another week and I'll have passed the point where the pain came back after the balloon procedure. That's the point when I'll feel I can say the MVD really worked. The cold brings on a mild ache sometimes but it doesn't last. Last night I started having some pain around my eye - the eye that hurt after the balloon procedure. Not sure what that is about but I don't expect it to be a problem. I'm having sinus problems and heartburn problems, too. So I don't feel great but certainly better than when I was on the meds and still having breakthrough pain!!

I hope you continue to do well!

mean laureen 01-08-2010 12:47 PM

Hi Jean,
Wow, 3 weeks of being of all meds. That's awesome and very encouraging to me. I will make another decrease on Sunday and then I'll be down to 6 pills per day. That's a long way from the 30 I was taking at one point. As far as being achey once in a while from the cold and such, I think we might have that for the rest of our lives. The nerve will probably always be a little more sensitive. But I can live with that. We're getting a lot of snow here. I measured on our back deck and there's 24 inches total from this whole week! I've had enough of that already. Take care.
Laureen

jjlsongbird 01-14-2010 09:56 AM

Today it is FOUR weeks without TN meds! I'm pretty confident that they must be out of my system by now. It looks like the operation was a complete success!!! What a relief! It's still hard to be too excited, since the future is unknown and there are no guarantees. And you don't forget the fear of the pain. But hopefully in time I won't think about it much.

Yes, I think there will always be some sensitive places. I still have some numbness from years ago but that's almost all gone and doesn't bother me.

Wow, 24 inches of snow! That's a lot. We have had plenty, though not that much. The cold has really bothered me this year, but each year I learn to dress better for it. This year I've added a lap robe/afghan in the car, which helps.

You are down to 6 pills now (plus Tegretol)? I hope it is going well! Keep me posted.

jjlsongbird 01-28-2010 08:31 AM

SIX weeks off the meds and all is well! What a relief! Laureen, how are you doing?

mean laureen 01-28-2010 09:10 AM

Hi Jean,
Wow six weeks without medications. That is so wonderful, I'm so happy for you. Everything is going well with me also. This Sunday I should take away my last neurontin pill and then after 2 weeks I will start reducing my tegretol! I can't believe I've gotten this far.
Take care,
Laureen

jjlsongbird 01-29-2010 10:10 AM

Laureen, that is wonderful. I look forward to celebrating each step down, so keep me posted and I hope everything continues to go well!


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