Remission periods

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 and it ends up just going away. I was wondering how many of you have gone thru this remission period and how long it has lasted. I am just so happy right now that I don't want to think about the pain ever coming back, but my doctor says there is no telling how long this will last. Your experiences with this???

Hi Terry

Glad to hear you are pain free. I have my first and only attack in June this year. My pain was triggered by eating cold fruit straight from the fridge. The attack lasted a week, getting worse as the time went on. Shooting pains into cheek and along bottom jaw. After 2 days of medication I was pain free but I stayed on it for 6 weeks tapering off from 600 mgs.

I am now left with a tingling/aching tooth which comes and goes most days. I also have fleeting aches around eye and in cheek. I had trauma to the face 2 days before eating the fruit and I think this may have traumatised the trig nerve. I do wonder if what i have now is post traumatic trauma to the nerve, I am hoping and praying if the nerve was damaged then it is managing to heal itself. My face aches and sensations are milder then they were a few months ago, so I am hopeful.

I have a neighbour who tells me she had TN attack many years ago and never had it again, another person knows someone who had an attack 18 months ago and has not had another since, this is without medication. So although they say it is unusual it is possible that it may not come back xx

I started getting quick stabing pains in my jaw/teeth in Aug 2010. By jan 2011 I was having full blown attacks, triggered by talking, brushing my teeth, eating or washing my face. this continued for 2 weeks before I sought help and my doctor put me on Tegretol ( same as you) My pain went and I was a walking zombie ( even though I was on the lowest possible dose) I came off the medication after approx 10 days.

The pain was completely gone for 8 months and to be honest I thought I was cured!

not so....... 8 weeks ago it returned, exactly the same as it started. I am now on Lyrica and finding my personality has changed again :(

I hope and pray that your remission lasts for a long time or it never returns! I would never wish this on anybody.

gods blessings :)

Hi Terry, my "best" remission lasted 39 months. The remission started three weeks after a series of acupuncture treatments and, get this, the day after I decided to stop taking Tegretol and Baclofen. It stayed gone until my sister discovered she had liver cancer (advanced) and from that time until my sister passed away, about two months time, it was the worst episode I had ever had. After my sister passed away, slowly so did the TN disappear again.....five months later, it's back, but totally different from previous episodes, this time I can touch my face anywhere without pain, but you let me take a bite of something good to eat and BAM! Enjoy your remission time, it could last years....I firmly believe stress is one of the triggers, so try to stay KOOL!

It’s been quite sometime since this post and the comments. Any recurrence? My attacks are getting milder and milder and I’m hopeful that my TN is slowly dissipating FOREVER.