Hi, has anyone tried Botox for TN? I am currently on Neurontin which was working ok but last Thursday I woke up with one side of my face on fire. I called my neurologist who told me to double the dosage. I have been taking double the dosage plus Vicodin for breakthrough pain all weekend. It has been tolerable but I absolutely cannot work while taking this much medication.
My neurologist had mentioned trying Botox so I was wondering if anyone had any experience with it (including comments or suggestions from moderators). Thanks for the help!
We were desperate about a year ago with breakthrough pain for my daughter (she was 15 at the time). I called everyone I could, sobbing on the phone until I found a doc willing to see her and try Botox. But after a quick exam in the office, he told us he would just be taking our money because Botox affects the MUSCLE and her pain was clearly NERVE. What he did do was inject her (from inside her mouth) with lidocaine and then marcaine (sp?) directly into the third branch of the Trigeminal nerve. It gave her instantaneous, albeit temporary relief. He said sometimes that is enough to “reset” the nerve. Hope you find relief!
There is a fair amount of discussion of Botox on this site. Please run the term in our search window at top right. From 18 years of working with patients, my impression is that there is no consistent body of evidence for the effectiveness of Botox in trigeminal pain. Some patients report getting relief for periods of a few days. I cannot recall having seen a report of pain relief for longer than a month.
Stacie & Red,
Thank you for the quick responses. I’m still fairly new to the site so hadn’t done a search for old discussions (my bad). Botox affecting muscles instead of nerves makes sense.
I talked to my neuro today and she said Botox is not approved for TN so insurance won’t cover it and I definitely cannot afford it. Guess I’ll keep looking for a non surgical answer.
Thank you both for your input.