I'm on 300mg Trileptal twice a day as well as Baclofen 10 mg twice a day and Nortriptyline 75mg at night with Cymbalta 60 mg.
I know I haven't been on it a really long time (Aug or Sept) but when has anyone really seen a significant difference? It seems like I have 4-5 bad days and then 2-3 good days and then back in it again.
I know their is no "usual", but come on...I feel like I should be getting more relief.
Any words of wisdom are greatly appreciated
Thx
Beth
Sorry to her this but my husband as tried so many meds nothing asent worked for him we r going to see a specialist on Tuesday again . To see if he can do radio surgery to damage the nerve hope u get better soon also most of the time meds made my husband worse because off the side effects
Hi Beth,
You might want to consider tilter up on your dosage. It may help you get some better control of the tn. Talk with your doctor about it, and let him know how the medications are working for you. Your doctor should be able to help you get to a dose that helps control the pan better. I’m sorry your still having pain right now. Take care and have a pain free day.
Try titrating up the trileptal…I didn’t notice any difference until I took 600mg 2x day, now I take 900mg/2x a day along with baclofen 40mg, cymbalta 60mg, and amytripyline 20mg at bedtime. I have the best pain control I have ever had. You are on a gold standard meds…I think u will notice a significant difference on a higher dose of trileptal…build up slowly!! I also have a peripheral nerve stimulator that has made my life as close to “normal” as it has been in 5 years!! Hang in there isn’t always the easiest thing to hear, but truthfully you have a great med combo already…u just need to adjust doses a bit.
Beth, you’re right there is no usual, but that being said this site can give you a peek into other’s journeys with TN.
I managed for two years on just 800mg Tegretol, I worked, socialized, exercised, volunteered, took care of two teen daughters, led a “normal” life. My TN worsened this past spring, and it has become difficult to find relief ever since. I am currently on 1600mg Tegretol and 60mg Baclofen.
I also experienced an 8 year remission. ( from 2002-2010)
My philosophy has always been pain control first and foremost, if I were you, like Kari advised, I would most definately be calling your doctor to discuss your current meds and dosage.
We’re all different and tolerate certain med combos and doses differently, unfortunately this takes time, which sucks when we’re in such pain.
Dont give up, there’s hope.
(( hugs )) Mimi
Make sure to consult with doctor before raising or lowering anything : )