Is it possible to have a "remission" of sorts? I was having daily pain. Up and down all day long. Have been on Tegretol since diagnosis, had the dose increased twice and then all of a sudden I missed a dose...probably because I wasn't having the constant reminders of break through pain and then I decided to just skip the next day cause there was no pain and now I have gone almost a week with out meds and without much pain. I have had little tiny slivers of pain here and there, but NOTHING compared to what it was.
Is this normal? I am expecting the pain to come back eventually, like I said I am still have little tiny shocks and things but they are barely noticeable.
Joanna
OH and I have a neurologist appointment on the 18th of November and don't want to go in there saying, "I WAS having this pain....now its gone...." Not that I ever want to feel it again, I don't want to waste the appointment or have to reschedule. I want answers and a plan of attack for the future.
Spontaneous remissions are fairly common, Joanna. Sometimes they last for days, and occasionally even for years. It's almost never clear why they occur (or don't). However, I think you would be well advised to discuss both remission and your medications with your neurologist. Over the years that I've been talking with chronic face pain patients, one of the recurring patterns has been that people who go off medication even during a remission very frequently relapse into pain. And it can be harder to regain control of pain when this happens.
As for having answers and a plan of attack for the future... that can be a very tough nut to crack, Joanna. There are many different inter-woven patterns of pain and relief of pain among chronic facial neuropathy patients. There really isn't a one-size-fits-all solution at the present state of medical knowledge. So again, I'd suggest talking with your neurologist about expectations and self-management in this disorder.
Go in Peace and Power
Red