Under 50 and Idiopathic Anyone?

I am 39 (40 this week)...was 38 when this all started. Mine they say is "idiopathic" likely from a virus. But I keep reading about how under 50 is uncommon. Which is slightly funny to me because when I ask my doctors if I could have had Ramsay Hunt w/o rash...he says I'm too young for that. How old where you when pain started? And is yours idiopathic or did they find cause?

My TN2 pain started when I was 40. I did not realize at the time it was TN, as I have another condition , a Chiari Malformation, and I attributed it to that. It was eight years before the pain became constant and unbearable. I finally got a diagnosis after six months, and the NS who did my MVD attributed the TN to my original condition.
Best of luck to you!

My TN1 started when I was 31 but I wonder if I didn't have TN2 for a while before. I haven't seriously discussed my TN with a neurologist, so I don't know a cause. I'm in the process of searching for a knowledgeable Dr in the Dallas, TX area.


I was 29 when first diagnosed ( bilateral TN), I’m almost 42 now…

thank you all so much for responding :) it helps.

curious if you ever had a rash? My symptoms are almost exact of PHN from shingles but my doctor insists its unlikely due to my age and no vesicles - or at least none that were seen. I had this going on a few months before I freaked out and went to the doctor. So who knows if there were vesicles inside my ear once upon a time. At any rate, I find it ironic that I'm too young for shingles, but not too young for TN...but of which are typically seen in people over 50 according to Dr. Google :)

SimpleLife said:

Symptomatic at 34, diagnosed 4 years later, ATN, probably caused by a virus, probably the shingles virus, I'm now 54. I just read a statistical analysis somewhere on this website using website member demographic data, which indicated more folks like us symptomatic earlier than in our 50's. Mine came on out of the blue, severe right side jaw pain, upper and lower, up to my eye. Mine's relatively well managed now by my quiet lifestyle and 5 different meds. Bless all of our hearts !!!!!!! :-)

How about 21? It was preceded by what a doctor later called "active" Epstein-Barr and lasted for several years. The virus became active again when I was 34 and resulted in fibromyalgia and ATN, initially diagnosed as atypical facial pain. They also say both are women's illnesses, so I am twice strange. Finding it slightly funny is probably the right reaction.

I was 18 only !

Happy Birthday dodo! Wow 40th...This is when it starts to get good, trust me. U stop all the second guessing yourself and even with our condition, enjoy the maturity to look at a situation and say ...is it worth it? Time to sit back and choose your battles in life....so uncomplicated...and keeps getting better! God bless...Have a blast!