Yesterday was 9 weeks since surgery. And today I decrease to 100 mgs of Tegretol. Yes, Tegretol is all I'm on and only for one more week! It's a bit scary. The neurologist told me to take it at night for the least side effects. Breakfast is usually when the TN comes back, so having breakfast with no Tegretol makes me feel unprotected. Still I think I'll do it that way.

Last year following the balloon procedure I got off the meds for a few weeks and then the TN came back. So I know the meds stay in the system awhile after we stop taking them. I won't feel totally safe till maybe another month or 6 weeks.

My husband is doing really well. Already driving and getting back to normal activities, except lifting over 10 pounds. I don't have restrictions anymore on lifting (not that I can lift everything he used to but I can do more now than I could).

How are YOU doing??

Hi Jean,

That's wonderful that it has been 9 weeks since your surgery. I just realized that it has been 6 months since mine. I can't remember if they say that if it doesn't come back after the first year or the second year then it's likely to never come back. I'm decreasing another neurontin 300mg pill tomorrow.
So far, so good. I know what you mean about worrying about eating breakfast and just eating in general. Hopefully everything is going to work out just fine for both of us. That's wonderful that your husband is doing so well. Keep me posted.

Laureen

Hi Laureen,

As of today I am OFF Tegretol (off all meds for TN)! I've had a little soreness today, just some passing aches in the face, seems to happen when I'm in a cold room. I don't think it's anything to be concerned about. Hope not!

I looked back at my journal last year. After the balloon procedure, I delayed going off the meds because of some pain from the surgery. When I did taper off, after 3 weeks and 3 days, the pain came back. So I'm thinking that it takes that long for the Tegretol to get totally out of my system.

I'm definitely feeling clearer headed and starting to get some energy. Colors seem brighter and music is better and food - well, I will have to be really careful not to put on a lot of weight, because I am hungrier.

I've read some places something about 6 months or a year or 2 being a time after which you probably won't have a reoccurence of pain. But I think there are lots of different experiences. I'd always heard that the MVD usually lasted around 10 years. But my surgeon said it could work for a lifetime. Then I read that people who had a prior procedure (like I did), are less likely to have a complete success. I think it all varies so from person to person. I asked my nerologist if the pad they put in to shield the nerve can move and he said "no." And I asked if I could develop other compressions - and he said that was very unlikely. So why would there be a limit to how long the MVD lasts? Seems like a lot of unknowns. (If anyone reading this has any info, please join in the conversation!)

How are you doing, Laureen?

Hi Jean,

Wow, you're off all of your meds! That is so wonderful. It definitely gives me hope that I may be able to do that also. So far I'm doing great with this last reduction. I get a little achy in cold temperatures and I still worry about a cold wind. I see my neurologist next month just for a check up. Like you said, there are a lot of unknowns with this condition. As far as how long until you know if the surgery was a success and how long it might last. I hate to think we will have to worry about this for the rest of our lives. That's great that you are feeling better now that you're off the meds. I hope your dizziness went away too. It will be nice to relax once Christmas is over.

Take care, Laureen

So you are getting achy in the cold, too. It's reassuring that it isn't just me. Yesterday I didn't feel well at all--headache and stomach ache and dizziness. Not TN related, just discouraging as I'm ready to start feeling good. Today is better. We have 3 hours of musical performances in the next 36 hours and a snowstorm about to hit us. That will probably wipe me out but then I'll be finished with the Christmas performances.

I'm so glad you are still doing well and I think that is a good sign. If you have come this far, probably you will be able to go all the way.

HI Jean,

How are you doing? Are you still feeling good after being off all of your medication? I sure hope so. I haven't been feeling any pains lately. I'm just wiped out from all of the preparations for Christmas. It's all been very stressful. I hope you have a very merry Christmas and that you continue to do well off of your meds.

Take care,

Laureen

I'm doing well so far! Have been off the meds for a week! So glad you are painfree despite a lot of stress, Laureen. That's a very good sign!

Merry Christmas!

Hi Jean

Hope you had a very nice Christmas. Ours was very nice, but I'm glad all of that stress is over with. I started getting a cold yesterday. You're right about the stress not causing any pains. That used to be a huge trigger for me. I just set up my pill container for the upcoming week and I took another dose away. We'll see how it goes. Last night my sister-in-law called me and told me that she's been having electric shock-like pains in her lower left jaw area (same area as mine). She said about a year ago she had some pains there but she didn't think too much about it. But lately it's been getting worse and happening more frequently. I'm worried about her and I hope it's not tn. I told her to please go to a doctor before it gets any worse. I hope she doesn't wait too long.

Take care,

Laureen

Sorry to hear about your sister-in-law! Oh, I hate it when people I know have symptoms of TN! They have no idea what they may have to deal with! At least you will be able to be helpful and have been by telling her to see her doctor right away. The pain can escalate fast. Best to get ahead of it, then it is more manageable.

Hope your reduction of meds goes well. When will you be off that medication? Then you will still have Tegretol to get off, right?

Hi Jean,

I just reduced a 300mg neurontin yesterday. I've been nervous about it all day today, wondering if and when I will feel a pain. I know that sounds crazy and that's just me being paranoid. So now I'm taking one 300mg neurontin in the morning and one 300mg pill in the evening along with my tegretol. After this I will probably take away the evening one and then the morning one last. After that I will start on the tegretol reduction. It's hard for me to believe I've gotten down this far actually. How are you doing so far? No pains or twinges I hope?

We are getting an awful lot of snow today. The kids and I went shopping today. So it was in and out of the van in the blowing snow all day. Another good test for me though.

Talk to you soon.

Laureen