Hi tacocat,
When I was initially diagnosed, I felt immediate relief with Tegretol within 48hrs. Then the dance started…slight increases every few weeks and then a change to Tegretol XR ( slow release) after a few months I had bilateral TN. I found complete relief within 6-7 months. After 9 months with TN, we slowly started weaning off the Tegretol and I went into remission!!
I had an 8 year remission for my right side and a 10 year remission on my left.
My right side is controlled with Tegretol XR for the last 3 years.
My left side became resistant to meds and gradually worsened when it came out of remission a little over a year ago. I recently had an mvd on April 9th and am pain free, still recovering …
I still take Tegretol XR for my right side.
One thing I’ve learned is we all share similarities but our individual TN journeys are unique to us, rare to find someone with the exact same course of TN.
Glad you’ve found relief! Stay positive!
(( hugs )) Mimi
Just be ready in case you start having breakthrough pains. You may have to increase a few times. I had toincrease steadily for 3.5 months until I got my working dose. But you may do fine! Just be aware that it CAN happen so you won't be disappointed. If it happens, just go back and get your meds increased until you get to YOUR specific working dose. Good luck!
When i was first diagnosed, the initial low dose of Tegretol (100mg) gave me immediate relief...but unfortunately, i soon had to increase it more and more. I'm up to 1200mg per day..plus 2400mg of Neurotin..and 3 Baclofens (not sure of dose).
So i DO not want to discourage you...but just answering your question. I really hope the low dose of tegretol keeps working for you.
However, i have found that the baclofen has been the thing that works the best for me. As soon as my dr added that...everything changed. I've been pain free for a couple months now!!
I've been lucky with the tegretol for the pain as well but it took a few weeks...I'm up to 600mgs and the pain is pretty much gone, although I can still feel when the jolt comes but it's like it's under many layers of cotton (if that makes any sense). The pain level is very, very, low, just enough to let me know it hasn't gone completely away. My problem now is the side effects of the tegretol...headaches and nausea. So I take a couple of pain-killers (Tylenol 3's) and gravol. My doctor caught it very early (on my second visit) so I'm only two months into my diagnosis and treatment. I saw the doctor today and we are going to try another month at 600mgs and then try to wean me down...hopefully with fewer side effects. Good luck!
Thanks Sandy! So far so good on 200 mg. --it has only been three weeks. I imagine some people have pretty good success on the meds for quite a long time. I understand the doctors try to wean you off and see if you are in remission. Then when the next bout hits you can still use a fairly low dose. Even on the 200 I had some side effects initially-- very sleepy and some nausea-- but that has cleared up for the most part. Glad you have relief, too. Enjoying this painfree time and trying not to worry about what may come-- I am just so thankful for the meds!! Imagine in the old days...
My pain started to become a little more bearable as soon as I started Tegretol as in...staying out of the ER. Slowly increasing kept helping my pain but not as fast as I and the Neurologist hoped. Up to 900 mg a day and I can't metabolize anymore. This is found out through blood tests every so often. Any more and it would be toxic for me. Also 900 mg gabapentin added which still slowly decreased my pain. I wanted to go back to work and I couldn't with such a foggy brain which I felt was mostly from the Gabapentin so It was reduced to 300 mg at bedtime. Added Lyrica 75 mg 3 times a day. I'm very happy to say that I have not had any significant pain on my right side in many days and completely tolerable pain on my left. It's been 6 months since my diagnoses. It was not caught early. I had severe pain in my left jaw on and off for 6 years which led to a dental nightmare. I'm used to the medication now and can work and enjoy my life. I'm so happy you found relief quickly tacocat. :)
I'm so happy I found this site. Thank you everyone for sharing your stories. It's helped me so much. When I was having unbearable pain day after day and thought my life was over as I knew it I desperately wanted to hear stories of people coming through the other side. I needed it. So I hope I can help someone else or provide encouragement in some way. I may not have a remission but for right now I'm living.