I totally understand your jumping at the chance to do the MVD. When I made up my mind that it was really the only option left, it seemed to take forever to get scheduled. Then I worried that I would get sick and wouldn't be able to have the surgery when planned (and the surgeon was planning to have knee surgery shortly after doing my surgery and would be out for awhile). For weeks I didn't go out in public unless I had to for fear of getting a cold.

I don't have anything that feels like weakness. I do have soreness in areas where I had the radiofrequency rhizotomy in 1998 and the soreness around my eye from the balloon procedure in 2008 is coming back (which no one understands because I never had TN pain up there).

Yesterday I reduced to 500 mg of Tegretol, after a week on 600. Does that seem fast? It seemed like forever before my neurosurgeon let me start reducing it at all (it was several weeks). Only had twinges that one day - and it was a day my band performed at a lunch, so I was singing and being more active than I really felt ready for. I was also tense before we started performing. I've been fine since then except that I have a sinus allergy problem. Felt awful yesterday. Today I'm somewhat better.

I'm glad you aren't having twinges now that you have slowed down the reduction. I hope I don't have to slow down - at least until I get a bit lower when the side effects will be less noticeable.

Jean,

It sounds like your doing really well with your medication reduction. I thought I was starting to feel some slight pain on the front left side under my teeth yesterday. Seems to have gone away today but I was starting to get a little worried yesterday. I have been tired and stressed out lately. But a good test for me happened today when I sat outside at my son's soccer game. It was super windy and cold but it didn't cause any nerve pain for me.

Hope your having a pain free day!

Laureen

Laureen,

So far so good. I have some sore gums, sometimes aching, but not bad at all. And it isn't where the TN was striking. I think some of it is from the rhizotomy--it was covered by numbness for a long time. As my neurologist said, Tegretol will cover all nerve pain, not just Trigeminal pain. So it has also been covered by the medication.

How great that you were able to sit outside on a windy, cold day with no pain!!!

It's been 4 weeks today since I had my surgery, so I thought I'd post an update for those who might be following me.

Yesterday was the first day I began to feel like normal life was returning. It was an important turning point for me. I had been feeling very discouraged, not understanding the headaches and the kind of tiredness I was experiencing. I was experiencing an ongoing sinus problem and sore throat (which was all the more a problem because I do a lot of performing at this time of year and need to start practicing, and I wasn't able to sing).

Monday I felt awful, with a really bad headache. I figured I'd overdone it by going out twice on Sunday. But I started treating the sinuses by inhaling steam, using an saline inhaler, and running a humidifier at night in the bedroom. Tuesday morning I felt much better. And checking something online I discovered that the Topamax (which I wasn't going to start decreasing for another 4-6 weeks) can cause sinus problems!! That was a revelation! I also realized it could be causing other things that were bothering me (feeling weak, low energy, nausea, mood changes, anxiety). I emailed my neurologist and got permission to reduce the Topamax this week, instead of the Tegretol. I haven't even done it yet, but I am already feeling much better because of the sinus treatment and because now I realize that a lot of what has been bothering me is caused by the Topamax, not by the surgery. I feel like I'm starting to get my life back again. Things are looking up.

It is still scary, decreasing these meds. I have soreness in my face at times, and I'm sensitive to moving air sometimes. But those twinges really are not like TN zaps. They aren't lightning bolts, they aren't more than 1-2 on the pain scale. I think they are just a result of the surgery or maybe all three surgeries I have had (2 outpatient ones before the MVD). So I still hope for a complete cure. Time will tell.

Jean,

I am so happy for you that you made it to the 4 week mark and that you are feeling good. It is good that you found out about the topamax and it's side effects. I've never been on that drug. I had a scary thing happen to me 3 days ago and I'm still not sure why it happened. I was getting ready to brush my teeth and I started to feel pain and soreness in my bottom jaw area and up under my bottom left front teeth(all the usual trigger areas I had before). So I brushed my teeth carefully anyway and it was still hurting and then every time I opened my mouth my jaw area was so sore. So I decided to take an extra neurontin and 2 advil, and within 15 minutes the pain was gone. It just brings back all of those old feelings again and I've been very cautious since then about what I'm eating and with brushing my teeth. Maybe once in a while I'll still have pains and twinges happen. It's been 5 months this week for me since my surgery and I'm still very happy I did it. Hope your having a great day.

Laureen

Hi Laureen,

Sorry to hear about the recent scare with the pain. Your TN area is similar to mine (lower branch on left side) although this year it was some place on the roof of my mouth that was triggering a "zap" when I brushed my teeth (my trigger points used to be lower). I have stopped using my electric toothbrush for awhile. There are still sore nerves behind the upper teeth, and I just don't want to feel them!

My neurologist told me when I had eye pain after the balloon compression that the meds for TN work on all nerves, not just the Trigeminal. So he had me stay on the meds for maybe 4-5 months because of the eye pain. Maybe your decreases have uncovered some other pain. My gums ache sometimes, and sometimes the side of my tongue, but it's mild.

Tuesday and Wednesday till evening were great days for me. I felt like I was getting my life back. Today I was much more tired. The weather really seems to effect me--The good days were sunny, today wasn't.

This morning I decreased the Topamax. I'd only been on that for the last month before the surgery and wasn't realizing that it was then that I stopped driving and started feeling even worse than I'd been feeling on the Tegretol alone. I'm hoping this decrease makes a big difference in how I feel. I'm sure I'm still recovering from the surgery at 4+ weeks, but even more so I'm still having all these side effects from the meds. Of course each decrease is scary. I have been having some twinges, but they still do not act like TN zaps. I just hope they don't start to get worse.

So after that recent epidosde, are you staying at a higher level of Neurontin or did you just take that one extra one?

It's really nice having you to "talk" to!

Hi Jean,

Hope you are doing well today. So far a great day for me. I only took that one extra neurontin on Tuesday and then I went back to my usual dose. I will be decreasing my dosage starting on Sunday though. I'll take one of my 300mg pills away per day so I'm going from 1800 to 1500mg a day. I'm excited but scared at the same time. I haven't had any other problems since Tuesday. Yes my pain has always been in the lower left jaw area. At the end when it was so bad before my surgery it would trigger the pain when I touched my toothbrush to my teeth on the upper left side though. Actually, before my surgery it got so bad that I couldn't even touch any of my teeth to brush them without setting off excrutiating pain. I really enjoy talking to you also. It's really nice to be able to relate to someone who's going through the same experiences. No matter how much I talk to my friends or family about it, it's just not the same as talking to someone who's actually been through it. Take care, Laureen

I'm glad you didn't have to stay on the increased Neurontin. Decreasing Neurontin 300mgs a day? Sounds like a fast decrease to me (since I've been only decreasing Tegretol by 100 mgs per week and once I did 50 mg per week). But I don't know anything about Neurontin. Be careful!

I decreased Topamax 25mg yesterday morning. Was really surprised when I got up today and took my morning 100 mg of Tegretol and I got really dizzy. So I did some searching on the Internet, and it seems that there are folks who have withdrawal symptoms when they cut back on Topamax, dizziness being one of them. I haven't felt that dizzy since I started taking Topamax. It got better through the day. I have some early morning things to do Sunday and Monday, so I really don't want to be that dizzy every morning. (But all in all there are far worse things to feel than dizziness!) We'll see.

Well, the journey goes on.... I hope it goes well for you!

Jean,

You're right. 300mgs a day of neurontin decrease does seem like a lot to me. I'm wondering if that's what got me in trouble the last time. My neurologist didn't seem to think I would have a problem with it. I hope he's right. I'm on those 300mg capsules right now. I guess if I have a problem maybe I could ask him to prescribe some 100mg capsules so I can decrease more slowly. Hopefully it will go well this week--I'm nervous about it though.

Hope your dizziness gets better.

Laureen

Laureen,

If your doctor thinks that's the way to go, then I'd give it a try. You can always take longer between decreases if it seems like too much. Good luck and keep me posted.

I'm getting used to the dizziness, just don't understand it and why it's worse in the morning. It's not bad by late afternoon and evening. I'll probably talk with my neurologist this week. Need to know what to decrease later this week.