I read TN is a progressive disease and as time passes you get more frequent attacks. Has anyone had remissions at constant periods of time? Did anyone get any better? (sry about my english)
Yes, everything I have read says it is progressive. I have to say when I first felt the symptoms of TN they did progress while I was trying to get a diagnosis, but I was finally controlled by meds. Unfortunately, the meds kept going up in dosage to get the same pain relief so I opted for surgery.
After my MVD, I was mostly pain free with very low levels of medication for five years. I did have one or two short periods of pain during that five years where I had to increase my meds, but was able to go back down after the periods of bad pain were over.
For me the periods of remission are as strange as this condition! I am currently out of remission after over two years of no pain on extremely low levels of meds. I have had to add Tegretol back to the mix of my Neurontin, and Cymbalta. Still waiting for complete relief, but that usually takes some playing with the Tegretol dosage.
There are people that get better for long periods of time, but I have not heard of anyone in permanent remission. Maybe some others on the site that have suffered longer have some different insights.
Hoping for pain free days for all!
so you are still hoping for another remission? How many months have passed with pain?
Yes, There will be another remission (thinking positive here). I have been in pain for about three and a half weeks at this point. It would not have been so long if I had not waited to get back on the Tegretol. I just got new insurance so I had to switch doctors etc… so it took a couple of weeks to get the Tegretol going again. Already feeling better!
In my case the attacks got more severe..lasted longer..and were more frequent as time went by. That seems to be the trend with TN. Had MVD surgery and been pain free ever since....Seek out a professional with years of experience on treating TN patients for all of your options. Good luck and God bless.
Please buy the book
by dr. Ken casey
Ask your regular doctor for lidocaine cream for the face.
Keep reading , learning, and asking questions!
Ask neurologist if MVD surgery is option for you
With your shocks
And a really experienced surgeon in or near your country
You can have years of remission… 90% chance!