Sorry for the bombardment of questions I keep firing on here but you are all so helpful I get more help from you guys than my own dr !! Was wondering how long do you go in between attacks when your mainly pain free and feel normal again , when I ask the dr this they just say everyone is different ! Can you go days or weeks when your well ? I just need something to hold out hope for xxxx
Sometimes it will be days, sometimes it will be weeks........and some people actually go into remission for YEARS. Me, I was just diagnosed in August and I have only been lucky to have 4-6 weeks with almost no pain....just a few twinges. Then it starts back up pretty bad again and I have to up my meds. I have upped my meds 3 times from August -December and the last few days I can tell it is starting up again. We are more helpful because we FEEL the pain, not just study it. Good luck to you!
Remission = hours/days/weeks/months
there is no "average" "normal" etc.
TN does never go away - it only goes into remission with time / meds / surgery etc.
Your normal may vary - ask as many questions as needed - we never get tired of them - we sometimes don't have the answers - or good answers - or less painful answers- but somebody always on here with a hope and a prayer
We are like snowflakes -- as individual as can be - we are all cold and tiny but the shape of an individual's pain is different
We are soooo unique that we are only 12 in 100,000 souls!!!
So in this case a doctor gave you correct info!
I just re-posted to top of forums about grieving over this TN crap - I hope it helps you and others : )
After my first ever TN pains started 3.5 years ago, it took a couple of months before pain was relieved completely by meds. After this, as long as I took my meds I was pain free completely except for one or two attacks every year, each time needing me to increase my dosage. Unfortunately it is very common for each attack to be worse than the previous, and unable to reduce the dosage back down following the attack. Last year I had 3 attacks, ending in me making the urgent decision to have an MVD, which I had 3 weeks ago. Best decision I could have made for me. Ask as many questions as you want…I just wish I had found this group when I was first diagnosed. It is good for your peace of mind to know as much as you can about what “could” happen to you. Always remember, everyone is different when it comes to TN.
20 months for me and I am still pain free, Mini on here went many years before it came back. What causes this relief ? I dont know, can anyone explain? xx
I was like Gen, once I got the right dose with my Tegretol (for me that was 800mg slow release) I was pain free, as long as I took my meds. After 2 months of no pain on the meds, my Neuro weaned me off the meds slowly and I experienced a remission of 8 years!
Who knows why??
It came back in 2010 and again at 800mg Tegretol I was pain free on the meds…two years later my left side ( I have bilateral TN) stopped responding to that dose and since April of last year I’ve been increasing the dose as well as adding new meds to try and achieve relief from the pain. I am still in pain to varying degrees each day and awaiting mvd surgery.
Meds CAN manage your pain, and you CAN live “normally” whatever that is LoL
It’s just different for all of us as we all respond differently to the med(s).
It takes an enormous amount of patience and trial and error to find what works for you.
My current situation (continuous pain not responding to meds) “usually” only occurs when you’ve had TN a long time. According to my Neurologist, in his practice he has found that when TN goes into remission and then comes back, it’s harder to treat, doesn’t respond well to meds. I was a glass half full kinda gal and didn’t believe it, but in my case it rang true.
When mine came back after 8 yrs remission, I managed almost 2 yrs on just one med pain free before it stopped responding to the med.
We all share similarities with TN but our journey with it is unique to us individually.
Have HOPE, because there are many success stories!
(( hugs )) Mimi xx