So this is my second “go around with TN”. Right side was 6 years ago and I had a successful ablation of the nerve. Side effects left me with numbness to my face but I got used to it and it is so much more pleasant than the pain.
My left side started about 1 year ago and came on STRONG. I am scheduled for MVD surgery on 11/30/16 but am having second thoughts.
My neurologist says that TN comes in waves and when it peaks, we attempt to control the rapid nerve impulses (Pain) by different kinds of meds. Once the pain is controlled, we should back off the meds. (slowly) because there is a belief the nerve has settled down (Remission). I am at that point.
The past month I have backed off the max dose of Lyrical, 60mg of Elavil and 600mg
Trileptal. Today should be my last doses of Lyrical. The devil certainly lives beneath the surface of my face but SO MUCH better. Really nothing to talk about. So…I would guess Im in remission.
What was the time frame for the remission phase of others??
thank you in advance
Wow, what a frustrating and complicated case. I hope you will be like me, I have remissions of up to a year (or more). In Sept, it returned, strangely enough just 2 weeks before I was to have oral surgery on the opposite side, so I was dreading TN on the left and surgery pain on the right at the same time. It turned out to be a nightmare. The oral surgery caused TN on my right side much worse than my left side. I was screaming into my pillow for weeks and in the ER 3 times. TN on both sides at once was unbearable. But…thanking God and heaven above…both sides are almost fine again now! I have a close friend with TN and she gets remissions that are months long, and she said her recurrences are only a few weeks long. I have had recurrences last for up to 10 years straight. I’ve had this since 1996. I don’t blame you for REALLY reconsidering MVD. I have seen so many failures and life long effects afterward, I would have to be in screaming bad pain almost 24/7 to consider the side effects I have heard of.
After hearing all you have been through I feel the ashame to complain. I have been suffering with this TN for the last nine years. Of course my problems stem from a meningenoma on my brain stem. the last two years have been miserable. I had 2 rhizotomies this year, July '16. I now have AD. Still I will take that any day over the lighting shocks. I am told the problems with it will get better. So I really can’t say how long these problems will last. Lets pray they will come up with a cure for TN soon enough to do us some good. Good luck on 11/30.
I went into remission around 2005. Had one or two small breakthroughs but nothing else in all this time. I weaned myself, albeit very slowly, off Tegretol, Gabapentin and Baclofen. Still in total remission but, IMHO, help it with a large dose (5000mcg) of V-B12 which I take sublingually (under the tongue). V-B12 is helpful to the nerves rebuilding myelin. No proof but I believe it. I had an MVD years ago (1995) which was perfect for 4 years then it came back and I was on meds for all those years. Good luck for you.
I’ve been in remission for over a year now. Like Allan, I owe my remission to Vit B12. Mine’s was almost a miraculous recovery, happening within weeks of getting B12 shots (I got an immediate improvement within days). I get a shot once every 4 weeks now and other than the odd tingle, or a feeling of heightened sensitivity, I’ve been shock free. I would certainly recommend B12 therapy (preferably shots) for anyone who hasn’t tried it.
I had nine years of remission prior to it returning in March of this year. I am waiting on the date for scheduling radiation treatment of my left side for relief. I am praying that it works since I am unable to work and financially my finances suck. I am glad you’ve achieved remission. I am unaware of any set time frame for remission but know that it varies with individuals. God bless and good luck!
Thank you…to all. I appreciate all of your feedback and your experiences.
I went out and purchased Vit B12, SL. I’m hoping for a long remission.
I think I have convinced myself that this year, there will be NO surgery. Good luck to all of you and I wish you a pain-free life!
Another option to consider before MVD is scrambler therapy with a GOOD doctor (read: not a chiropractor). My wife recently went with Dr D’Amato in RI, one of the pioneers. What we liked about this therapy is that there are no side effects. For her, it unquestionably reduces the pain, from a ten to a one or two, but so far only short term. We will continue working with him for a bit more to see if we can get the positive effects to extend for a longer duration.
It can be costly, especially when travel is concerned, but if you have the finances and want to pursue every possible option that does not include medication or surgery, I would recommend at least a consultation with him. For many neuropathic pain sufferers the treatment has been outstanding. For TN sufferers it is a mixed result; for some it is wonderful, for others (like my wife) there is relief but we have not yet figured out how to make it ‘stick’ long term, and for other the positive effects are very minimal.
I hope the B12 works, give it a week. Sean had a good idea with the scrambler therapy and I also want to try ultrasound pain therapy before I consider anything invasive. You can research those. I think Sean is speaking of TENS unit, it stops the pain signal from getting to the brain. Sean if you read this, is that what you’re referring to?