Hi all. I have been gone for awhile - my 2 year old was going through some therapies and has been diagnosed as autistic. It’s been a bumpy road and I wish I could have been here more. His therapy trumps my condition though.
Yesterday my TN started acting back up. I actually got the shocks and since then, I have had the burning pain and my teeth feel tingling and like glass. I upped my dose of Carbamazepine up to 8oomg a day and am considering doing the same with the Gabapentin (from 900 to 1200). My doc gave me free reign to adjust my dose as necessary as long as I don’t cut off without stepping down (if I can ever go back down). Anyway. This is constant. I am about to pull my hair out. I know the constant burning means the attacks are right around the corner. This is how it started for me last fall. The toothache, abcess feeling and then the multiple sharp attacks.
If any of you have adjusted your doses of meds, how long did it take for the higher dose to quiet the nerve?
Hi Misty. Sorry to hear about your TN pain returning. REALLY sorry. Anyway, when I adjust dosages, dependign on what it is, it can take from 1 week to 3 weeks. Mostly it’s 1 to 1-1/2 for me. I have atypical TN which for me is the constant pain, burning, with attacks of the sharp pain too. lately, since my GKRS, i have had left-sided pain as well as the right-sided, though not at the same time, thank God. Sorry to hear about your son as wel. I will pray for you and your family.
Misty, it sounds like MVD will help you, I hope! Also, best of luck to you and your child. Early identification and intervention is the key to improving his development. I hope your mvd surgery gives you relief so you can get your life back as I have mine. I am a speech therapist, currently staying home with my young children, and had mvd in April. Warm wishes!
Oh, also about the higher doses of meds, none really truly worked for me. Then I refused adding more meds and went straight for surgery. The surgery treated typical TN very well. I’ve had two sharp attacks lasting for 10-15 minutes in nearly four months. 300 mg. neurotin calmed that. However, my atypical TN pain is constant. Right now I’m taking 300 mg. neurotin every other day to help with that. It sure is a huge improvement from 1200 mg. and tegretol and muscle relaxers previous to MVD. Also I know it’s structurual and real, but it feels like a mind game, an emotional roller coaster at times. I’ve started yoga to help with the stress.