Hi everyone, still waiting to see oral surgeon next week for official diagnosis. I am just wondering how this is for other people with TN 1. I have been getting the sharp electric shock pains in my lower right jaw for about a month now. I started keeping a dairy to see if i could figure out what triggers it but to no avail, it seems completely random. One day i counted 26 zaps in a couple hour period, then i will go 2 or 3 days with nothing, thinking ok, its over just to have them start again. Is this pretty common? And do the remissions get less frequent over time? Thanks Kelly
Im sorry you are here…BUT the best thing is that you have lots of info and friends here!
TN is progressive, yes remissions can get less over time.
Get the book… STRIKING BACK BY DR KEN CASEY
learn as much as you can… Learn TN :
read, post, ask, repeat
You can ask for lidocaine face patches from any doctor or dentist in your life…it made my life more bearable
There are articles, videos, success stories, and heartache here.
You have to grab the wheel and steer your own treatment
Only find a neurologist with TN patients… Even if you have to drive further, get an expert! Look at the doctors tab above.
We will be here after your appointments with guidance for you. Or sometimes we only can commiserate.
Many health professionals are on autopilot with their TN patients, because they are not much educated about our rare disease. They cant cure us.
But by educating ourselves, and reaching out , we can have better outcomes , and we can have hope.
: )
Waxes and wanes but is never totally gone. Still, I was doing pretty well until the drive to get my final papers in for grad school....lack of sleep. I will have to do better next semester.
I've never had a remission. Mine was all day every day, zap zap zap, until I got on meds. Now I have tried to taper down sometimes just to see, but within a week or so of me just taking 1 less pill a day and it comes back so I have to go back up. I have been seeing a chiropractor for the last 6-7 weeks and I am probably going to try to taper down again next weekend so I'll know if it's been helping or not.
I've had 3 periods of owwie with periods of remission in between.
I recently had MVD Surgery and all the pain is gone !!! Yay !!!! Im three weeks post op now. I am having a bout of bells palsy but that will go away.
Mine would go away as long as 8 to 10 months.About when i would think it was over,it would slam me for another bout lasting 6 to 8 weeks.It got more frequent over the years.I think the last episode would have never gone away on it's own.I had Gammaknife last year and still pain med free.My situation isn't typical because a AVM caused the problem. http://www.avmsurvivors.org/