Hello, everyone. Read a lot yesterday and thought I'd introduce myself today.

Brief history. Diagnosed with TN in 1992. Pain controlled with Tegretol till 1998. Had a radiofrequency rhizotomy in 1998 which made me very numb but gave me almost 6 years pain and medication free. Back on Tegretol in 2003 or 4. At first, a low dose (300 mg daily) was enough. When it got to 600 mg, in Jan 2008, I had a balloon procedure which only lowered dose needed to 300 mg a day. The TN escalated this year (2009), I got up to 800 mg Tegretol plus 50 mg Topamax with break through pain. So dizzy I couldn't even drive anymore.

I decided to have the MVD and had it on October 7. Now I'm recovering and starting to decrease the Tegretol. I have very little pain from the surgery - some mild headaches - and I'm starting to go out occasionally. I have no TN pain (so far). What surprises me is that I'm not happier!

What kind of emotions have others felt post surgery? And what kinds of emotions have people felt when tapering off the meds?

I guess it makes sense not to be too elated yet. I have 2 months before I can tell it this is a total cure. (And if this isn't, then nothing is.) Also, I am still on a lot of Tegretol and some Topamax with all the side effects. I sometimes thought that Tegretol had an uplifting effect on my moods and that withdrawing it might have the opposite effect? But maybe it was just the effect of feeling covered from pain that seemed uplifting. Has anyone experienced that?

I'd welcome any comments.

Jean

Welcome to NeuroTalk Jean. This is a great community with lots of nice people as you'll soon see. I hope you'll get good results from your treatment and feel better soon. Take care.

Thanks, Wiz. I've been reading around and kinda getting to know some people and their experiences. Nice to have a place like this.

Jean

I just wanted to reply to your message. I am 19 weeks post mvd. I didn't realize that until I just looked at the calendar. At first I counted every week that went by. I've been able to wean myself off of dilantin and now I'm slowly weaning myself off of neurontin. When I'm off of that totally then I will start to wean myself off of the tegretol but I have to admit that I'm scared to death to be off of tegretol and to be completely medication free. I know I will take it very slowly but it is still very scary for me. How do I know if I don't try though? I'm also scared because winter is coming and just the thought of the cold wind is very scary. Hopefully everything will be okay though. But I just wanted to let you know that I also have very mixed feelings about coming off of my medications.

Well, congratulations on getting off one medication!

Though it isn't well documented, I've seen references to people feeling anxiety, having emotional ups and downs and having trouble sleeping as they decrease Tegretol. I think that is part of what's going on for me. I frequently feel like I could cry. This past week I decreased it 200 mg. Now it will be 100 a week. I hope I adjust and don't feel more of those things!

Still over and above any effects from decreasing the meds, it is scary to decrease. I hope it continues to go well for both of us. Thanks for responding!

Jean, How much tegretol were you on before you had the mvd? Also have you felt any twinges or pains at all since decreasing your medication? Just wondering. Laureen

Laureen, I was on 800 mg of Tegretol and 50 mg of Topamax - and I was still having breakthrough pain. I didn't want to increase the meds because I was already so tired and dizzy that I was no longer driving and felt like an invalid most of the time. [I'd been on 1200 mg of Tegretol back in 1998. I was still driving, but I felt like my personality changed on the higher doses on Tegretol.]

A week ago, my neurologist told me I could decrease the Tegretol to 600 mg. Tomorrow and every week after that I am to decrease by 100 mg till I'm off the Tegretol.

Twinges. Yes, I have felt some twinges. In fact yesterday was a fairly strong one--but not really that painful. I don't think it's the trigeminal nerve, but of course it worries me. I think I read here somewhere that someone else had twinges that went away.

I don't think it's the trigeminal nerve that is firing because it isn't triggered the same way, it isn't quite in the same place, and it isn't the fast, stabbing sensation I associate with TN. It actually seemed to move down rather than shoot up.

Jan 08 I had the balloon procedure which didn't do much for the TN but gave me pain around my eye (though that wasn't a pain that moved and this twinge is). I had to stay on Tegretol for 6 months for that pain. My neurologist explained that Tegretol blocks nerve pain, not just Trigeminal nerve pain. So I am thinking that there must be some pain nerves that are irritated from the surgery (it's only 3 weeks today) and hopefully that is what I'm starting to feel.

My husband, who talked in detail with my surgeon after the surgery, is pretty confident that this surgery will be a success. I had 2 clear compressions, visible even on the imaging before the surgery. And they had enough monitoring of what was going on in my head that the surgeon could tell my husband that there was a nerve that was still reactive but it was a motor nerve, not a pain nerve, so they didn't need to do anything with that. (I can feel that flutter at times - never bothers me cause it has never had any pain with it!). I figure if they can monitor the nerves in my head that closely, then they would have been able to tell if there were any other pain nerves reacting to stimuli before they closed me up.

So I try to remind myself of all that when I get anxious. But still sometimes the anxiety gets to me. Mostly at night.

I figure that if the twinges continue or get worse with another decrease in Tegretol, I will need to report it to my neurologist, and he'll probably slow down my schedule for decreasing the Tegretol. I'd like to get a little lower before doing that, if I can, so I can have fewer side effects. I am so tired of feeling like an invalid on meds (I have other conditions I am on meds for, and I hate being on so many medications).

A long answer, but hopefully of some help if not to you than to someone else.

Have you felt any twinges or pain?

Jean,
Yes I started to feel some twinges and slight pain at exactly 8 weeks after my surgery. Before that everything was going great. I was eating all of the things that I had to give up due to the sharp shooting pains of tn. I guess I should back up my story. On May 23 I had the gamma knife procedure done after I had been admitted to the hospital for the 3rd time. I opted to try this procedure first because the best surgeon for the mvd procedure was of course on vacation for the whole week. So I had the gamma knife done and I felt great for 2 weeks. It may have been because I had also started on neurontin at that time. After the 2 weeks the pains started to come back. I had always had the sharp shooting pains in the lower left jaw area. Now in addition to this I started experiencing a sharp burning sensation in my face (cheek area). I was not able to eat or drink without a horrible burning sensation. The last 5 days before I was admitted into the hospital for the 4th time I became dehydrated and scared to eat or drink anything. I had lost quite a bit of weight and I'm pretty thin to begin with. So I was admitted for the last time and my surgeon was there and I was able to have the mvd. I was very scared and didn't know if it was the right decision but I felt like I was out of options. I had read the book "Striking Back" so many times I felt I was prepared with a lot of information. So like I said everything was great until week 8 when at first I felt a few twinges and then some pains but nothing like what it was before the surgery. So I went back to my surgeon and he said that he thought that I was reducing my medication too quickly and to take it much slowly as my nerve was so damaged. Mine was not a blood vessel compression like they thought from my mri. I had several large veins that were growing next to and pushing on my nerve. Anyway before my surgery I was taking 1000mg tegretol, 3600mg neurontin, 20mg baclofen, and 200mg dilantin. In the hospital they took me off the baclofen immediately and reduced the neurontin to 2100mg before my surgery. Currently I'm still on 1000mg tegretol and I just reduced my neurontin to 1800mg a day. I weaned myself off the dilantin a few weeks ago. Once I'm off of the neurontin then the tegretol will be last. My neurosurgeon did say that a small amount of his patients do have to stay on a small dose of medication for life. Anyway so far I think that my surgery was a complete success and I'm very happy that I did it. Hope you are doing well today.

Hi, Laureen,

I was interested in hearing more about your experiences.

I thought the gamma knife often took several months to take effect (I know that is true of some of that kind of cyber-knife treatment). It sounded like you and your doctor expected to to work right away. But with all the trouble you were having the MVD was probably a better way to go, particularly with several veins growing right next to the nerve.

I am reducing my Tegretol from 600 to 500 today. And I'm not feeling all that well but I am just getting started and haven't even had breakfast yet. Hopefully I'll perk up.

No twinges at all yesterday. It was a quieter day at home. Maybe that helped. I'm not as worried as I was.

I guess my medication level wasn't all that high compared to yours and others here, but I was having a lot of trouble with the side effects. I was so dizzy, I was no longer driving. I was always so tired and "stupid." My memory was terrible. I just didn't want to drag through life like that anymore if I could help it.

My husband and I are retired, and we like to travel. He had surgery for cancer earlier this year. At our ages you just don't know how much more time you have. So when my pain started to escalate, and I had to keep increasing my dose of medicine, I felt like I needed to do something to get my life back, and the MVD was really my only option left.

Since you slowed down your decreasing have your twinges gone away?

Jean,

You're right about the gamma knife possibly taking between 3-6 months to take effect. I was told that when I was in the hospital that 3rd time. But the neurosurgeon who was on call came to my room and explained the procedure to me and said that he had an opening the very next day. It was all very rushed. He told me for some people it seemed to work right away. I felt desperate and I didn't want them to send me home again without some kind of resolution so I agreed to do it. Looking back on it now I wish that I never would have done the gamma knife. Like I said earlier I felt great for about 2 weeks but that may have been the neurontin that they started me on. I should have just waited to have the mvd done. I'm worried about repercussions from the gamma knife later in life. Anyway, since I've slowed done on reducing the medications I haven't really felt any twinges but sometimes it feels just like I have a weakness there. (if that makes any sense). And I haven't even begun to reduce my tegretol yet. I am also tired of feeling out of it all the time and constantly forgetting things. It seems like your reducing your tegretol pretty quickly. How do you feel today?
Laureen