Jean,

How are you feeling? How's the dizziness? I decreased my neurontin on Sunday by one 300mg capsule per day. So far, so good. I haven't felt any twinges or anything yet. Although they say it takes several days for it to get out of your system. I'm trying to be positive though. Hope you're feeling good today.

Laureen

Hi Laureen,

My dizziness has gotten better since Friday. I didn't feel well yesterday for other reasons, lots of indigestion mainly and very tired, today is somewhat better. Last night I had a small twinge in my mouth that made a small area around my lower left wisdom tooth sting. But again, it was mild and wasn't where the TN was bothering me these last few years.

Tomorrow is 5 weeks since the surgery and I saw my surgeon today. He says I can shower and shampoo without covering the incision now, and I can drive when I'm not feeling dizzy. Progress! I wasn't driving for quite awhile before the surgery due to the meds, by my own choice, so now I'm back to being able to decide for myself if I can.

I have a new symptom - pounding in my left ear. It seems to come and go, so now I have to try to figure out when I get it. I'm wondering if coffee brings it on. I'm not too worried about it.

I plan to go off Topamax on Thursday. I considered asking if I should wait and decrease Tegretol for a week or two instead, but if I'm going to have any more trouble with extra dizziness, I want to have it now, rather than during the holiday season. I've tapered off Tegretol before without problems. I'll get back to cutting that next week.

I hope you continue to do well with the lower Neurontin dose. Do you notice you feel better as the medications are lowered?

Jean,

Congratulations on making the 5 week mark! Sounds like your making great progress. It sounds like you're not too afraid of feeling a twinge here or there. I'm still afraid of feeling any little thing. It scares me that it will come back full force. I've had pounding in my ears before too but not recently. It would mostly happen when I would first lay down at night to go to sleep. I've always had ringing in my ears ever since I started the tegretol. It bothers me mostly at night also, when it's quiet. I've never decreased tegretol since I started taking it a year ago. That will be the hard one for me because I know they say that one works the best for tn. I haven't noticed yet if I've started to feel better from decreasing the neurontin as far as side effects go. I still get tired really easily and my short term memory is not the greatest. Hopefully once I'm off of everything this will change.

Keep me updated,

Laureen

Hi Laureen,

I hope it is going OK for you. I didn't take any Topamax yesterday (YAY) and so far I don't feel any more dizzy. I have noticed parts of my face that are sore now, as I've decreased my meds. The eye that hurt after the balloon procedure is more sensitive now and around the far left side of my teeth there are places that hurt a little, particularly if I've been using my mouth a lot. But it isn't like TN pain, not in the same place, either. I think it's just from surgery. Since it was already noticeably with 25 mg Topamax, it might get worse with no Topamax. If it's too bad, I might need to increase the Tegretol for awhile or wait to decrease. But I hope not. I'm still very tired and still have a lot of dizziness yet I am getting stronger. The ear thumping went away last night, now it's back this morning.

You've come a long way reducing meds. If the pain comes back at all, I don't think you'll end up back where you were after all this time. If you get some pain, you'll increase your meds just a bit till the pain's gone. Then maybe try reducing in a week or so (depending on what your doctor says, of course).

When going off meds, as far as tiredness and short term memory problems, I start to feel pretty good around 300 mg of Tegretol, but it takes a few weeks after I stop taking any till it really gets out of my system.

I figure I'm about halfway through reducing my meds, maybe a little more. But I haven't felt the full effect of that yet--it will take a week or so.

Hi Jean,

I'm glad your dizziness went away after stopping the topamax. Hopefully you'll be able to stay off of it. I'm not sure why you would be having the ear thumping going on now. If it was from the tegretol you probably would have had that symptom a while ago. Thanks for all of the encouragement for me as far as decreasing my medications. I'm trying to stay positive too. I don't see my neurologist until January 12th unless I run into some problems. So far, so good. Trying to enjoy this nice weather before the snow starts flying!

Laureen

Laureen,

The dizziness didn't go away, I just thought it hadn't gotten worse when I went off Topamax, but as the day went on Friday, it did seem worse than Thursday (but maybe not as bad as the week before). Last night I did have another twinge. Still don't think it was a TN pain, but it worried me a bit. The ear thumping is gone, for the most part. Today I'm tired, and it's dreary weather which doesn't help! But I am getting stronger. My friends say I'm looking good.

I hope you continue to do well!

Hi Jean,

Sorry to hear that the dizziness didn't go away. Is it a lot during the day or just when you get up to walk? The only time I get dizzy is when I get up to go to the bathroom in the middle of the night or first thing in the morning. Sometimes I practically run right into the wall. During the day I'm fine though. Glad to hear that you're feeling stronger other than that. It's been one week since I made my last decrease. I'll give it one more week and then take away another 300mg pill. It's amazing how fast the weeks fly by. Hoping not to get too stressed out with the holiday season approaching. Hope you had a good day today.

Laureen

Hi Jean,

Sorry to hear that the dizziness didn't go away. Is it a lot during the day or just when you get up to walk? The only time I get dizzy is when I get up to go to the bathroom in the middle of the night or first thing in the morning. Sometimes I practically run right into the wall. During the day I'm fine though. Glad to hear that you're feeling stronger other than that. It's been one week since I made my last decrease. I'll give it one more week and then take away another 300mg pill. It's amazing how fast the weeks fly by. Hoping not to get too stressed out with the holiday season approaching. Take care.

Laureen

Laureen,

Yesterday I had a really good day and feel like I've turned a corner in my recovery (at 5-1/2 weeks). The sunshine helped! I was still dizzy but it seemed much milder, I delayed taking my Tegretol till after church since sometimes that seems to make it worse. I didn't even take a nap before going to a class in the evening. I began to feel like I was more myself, like there's an end to this.

I'm not sure how today will go (sometimes after a really good day I'm really tired), but I don't have to go anywhere or do anything. I feel quite dizzy right now as I sit and type, but this morning I had to take my once a week osteoporosis medication and then after a half hour, I took my daily thyroid medication. They all can cause dizziness. I'm usually better in the evening or as the day goes on. And when I'm sitting and busy thinking about something, I don't notice it much. Sometimes like today the dizziness feels like sinus pressure. I feel pressure like I have my head in a vise.

Yes, it is easy to get stressed out during the holiday season, isn't it! My husband and I do a lot of musical performances then AND he is having a herna repaired December 2. And there is a family wedding that involves travel on New Year's Eve. But I'm hoping to do as little as possible - just essentials.

It's great that the Neurontin decrease is going well!

Hi Jean,

How's it going today? So far pretty good for me. In fact, I was awake for a few hours this morning when I realized I had forgotten to take my meds. I thought when I decreased my medication some of this tiredness would go away but so far it hasn't. I'll sort of be happy when this week and next week are over. My daughter is in a band concert tonight and a play for drama on Thursday, Friday and Saturday. All fun stuff but a lot of running around and preparation. Next week I have all of the family coming over for Thanksgiving. Again fun, but stressful. Have any of your symptoms subsided as far as the dizziness and ear noise? I'm looking forward to decreasing my medication on Sunday again. Take care.

Laureen