I was diagnosed with TN on April 2011 and started using a low dose Tegretol at this time. It was later increased since the pain was not getting any better, in fact it was unbearable and eventhough I was on every pain killer imaginable, would not go away. However, since July 2011 my pain went away from one day to the next and I am off all my medications. It has been 4 months since then and I am still pain free. I feel some pressure on the left side of my jaw occasionally but nothing major. I am just so happy right now that I don't even want to think about the pain ever coming back. My doctor says there is no telling how long this will last and I just don't want to think about the future. Has any of you gone through this kind of remission period and how long has it lasted???
Yes Terry, I have had several and I am having one right now, Isn't it bliss! My latest has lasted 14+ months, previous ones were anything from a few days to weeks/months. I have no idea if I am in remission or just well pain managed and I dare not find out.
During these pain free periods, did you stop taking your medication?? I completely stopped since while on Tegretol I always felt run down and tired when I am usually a very energetic person. I never consulted with my doctor, it just felt wonderful to be pain free and medication free. Always did hate pills.
Jackie said:
Yes Terry, I have had several and I am having one right now, Isn't it bliss! My latest has lasted 14+ months, previous ones were anything from a few days to weeks/months. I have no idea if I am in remission or just well pain managed and I dare not find out.
Hi terry
I m 67 years old male with bi lateral TN for last 50 years. I m having long period of remission lasting from 1 to 3 years.
I m at present without pain. This disease is known to go away spontaneously.
When I was 17 I was told by surgeon that it may not come back at all.
I wish this was true. Unfortunately it does come back, but let us make the best use of the pain-free period. By the way r u on medication when pain-free?
Wish the pain never comes back to you.
Yakub
Hi Yakub
Yes, when I realized after several days that I had not felt any pain, I started taking Tegretol only once a day until I just stopped taking it. Now I have been pain free for almost 5 months and I am not taking any medication. I just hated taking Tegretol since I felt it made me feel tired and run down, not to mention, I would forget things (more than usual) . So, I did stop the medication without consulting my Neurologist. In fact , I haven't been back to see my neurologist in almost 5 months. I didn't know you could suffer from TN at such an early age. I thought it only happened to people around their 50's. But yours started when you were 17, I cannot even imagine having to live with this pain for so many years and relying on medication everyday. I'm just happy that there are these remission periods so we can get a little break and have a normal life for a while. I wish you luck and let's hope we both can live pain free for as long as possible.
thanks for your input.
Yakub said:
Hi terry
I m 67 years old male with bi lateral TN for last 50 years. I m having long period of remission lasting from 1 to 3 years.
I m at present without pain. This disease is known to go away spontaneously.
When I was 17 I was told by surgeon that it may not come back at all.
I wish this was true. Unfortunately it does come back, but let us make the best use of the pain-free period. By the way r u on medication when pain-free?
Wish the pain never comes back to you.
Yakub
My neuro does not recommend for ME that I do not take my meds at any point. I cannot recommend a medical treatment for anyone, sorry. I hate teg too, but I hate the pain more!
terry1015 said:
During these pain free periods, did you stop taking your medication?? I completely stopped since while on Tegretol I always felt run down and tired when I am usually a very energetic person. I never consulted with my doctor, it just felt wonderful to be pain free and medication free. Always did hate pills.
Jackie said:Yes Terry, I have had several and I am having one right now, Isn't it bliss! My latest has lasted 14+ months, previous ones were anything from a few days to weeks/months. I have no idea if I am in remission or just well pain managed and I dare not find out.