Hi, I was diagnosed with TN 9 years ago and 5 years ago had a MVD. I was one of the lucky ones that it worked for. For the last four years I've come off the medications that I was on. Trileptal, gabapentin, effexor. and am tapering klonopi* and still have lamictal to go. I have learned a lot when it comes to coming off these meds. I wanted to come here to warn anyone who is on a benzodiazepine like klonopi* that you cannot take any kind of fluroquinolone antibiotics. Like cipro. They will instantly block the benzodiazepine and throw you into withdrawals. You absolutely do not want that.

I also learned that for both benzodiazepines and gabapentin you have to very slowly taper. When I mean slowly, I mean a year or more. Withdrawals of these medications are very serious and can be horrible if not done very very slowly. No one mentioned this when I went on the medications and I'm learning now that doctors don't seem to know how to get people off these two medications properly. They try and do it in a few weeks or months. It takes about a year. Please listen to me on this.

So if you ever have to come off either a benzo or gabapentin or lyrica please join a facebook group on how to do this.

Back to my story. I like many of you, started at the dentist's office. After having 7 root canals in 9 teeth I had done my research and went to the neurologist. They actually listened. OMG all the medications and it still only worked fairly well. After four years I asked for MVD. It changed my life. I had both a MRI and CT scan that showed nothing but when they went in they found an artery wrapped around the base of the nerve which is why they couldn't see it on the scans.

Every once in a while I get a whisper of the pain and it scares me of course. But even MVD isn't 100%. The rest of the time I have the luxury of forgetting about it.

I come across statistics on the likelyhood of it returning but I get conflicting numbers. If anyone have found websites that have these statistics please let me know.