I have only been diagnosed for a few years myself so no the being in my 20's but I am in my early 40's. Keep working together everyone, That is the only way WE WILL BEAT THIS!!!!!
I’m 61, diagnosed 3 years ago. Started 18 months before that with tooth pulled for no reason, spent big money at Facial Pain Clinic when Dr. Thought it was TMD, then facial acupuncture that didn’t work until my Dr. Finally ordered MRI that showed nerve and artery wrapped. Been seeing Neurologist ever since and now MVD in 3 weeks.
Wow seems like most of the posters here are female? I'm male and had my first attack 2 weeks after I turned 56. Some birthday present huh? I was diagnosed with typical TN at 56 and had MVD surgery at 57. I have been mostly pain free since then and I'm now 62. I thank god everyday that I had the courage and opportunity to have the surgery.
Hi, My first symptoms were in my mid 30's. They went dormant until my mid 50's. I am now in my early 60's and am a full blown TN patient. Hang in there and find a Neurologist that will listen to you and help youl
Debbie
Debbie, it's funny that you say yours started in your 30s and then lay dormant till your 50s because that was the case with me as well. I woke up one morning at 34 with the right side of my face numb. I thought I'd had a stroke!! Eventually a neurologist diagnosed it as a form of migraine. I'd have periods of numbness over a decade or so until it just went away.
Fast forward to 53 and it came back with a vengeance as type 1. A couple of years of that and now it's settled back to numbness and aching. When I look back over the years but, there were a heap of really weird symptoms that I now know were this fun filled condition popping up to say hi!! Ahhh, the fun never ends.
I've had frequent migraines since age 14 and TN started at age 52. I'm 54 now.
Have not officially been diagnosed but my doctor thinks my problem could be TN. I am 26.
There are a few cases that start at a younger age! For example, I’m only 16 years old and going in for my MVD surgery in a couple weeks (they couldn’t see mine on a MRI either). There has been cases that start as young as 3 months old, though. I highly suggest the book everyone is recommending (Striking Back); it is very informative on medications, surgeries, and the pain itself. It will help you to ask the right questions when seeing the doctors!
Wishing you lots of luck,
LadyFace
mine started at age 24 diagnosed at 39 all i can say is your lucky to have a diagnosis you have been saved from years of being doubted treated as a drug seeker and a lot of unnecessary dental work good luck this is a path that makes you strong and have a greater appreciation of the beauty of the world and the simple pleasure of being without pain
Fun and Games isn't it!
catwoman said:
Debbie, it's funny that you say yours started in your 30s and then lay dormant till your 50s because that was the case with me as well. I woke up one morning at 34 with the right side of my face numb. I thought I'd had a stroke!! Eventually a neurologist diagnosed it as a form of migraine. I'd have periods of numbness over a decade or so until it just went away.
Fast forward to 53 and it came back with a vengeance as type 1. A couple of years of that and now it's settled back to numbness and aching. When I look back over the years but, there were a heap of really weird symptoms that I now know were this fun filled condition popping up to say hi!! Ahhh, the fun never ends.
I was 14 or 15 and got diagnosed 3 months after episodes started. Misdiagnosed with “common headaches” put on two medicines and couldn’t get a referral to a neurologist- with the referral I could get in 3 months besides 1 year. But was asked a few questions on describing the pain and he diagnosed me. Did a MRI and nothing showed so referred to a surgeon and did Gamma Knife at 15 or 16 I believe. And still had the pain so was put on a handful of seizer medicines. Then referred to Johns Hopkins Dr. Lim and Dr. Ahn( Pediactrics) and had that done a year ago. And still having pain at 18. And then was told my nerve was badly inflamed and started IV steroid treatment!
But now starting to have it on my other side but not as worse. The pain seems worse in the winter with the wind. But I have TN, TN doesn’t have me!
I was 25 when my TN started - My MRI's showed nothing. I had to have nerve testing done and that showed which nerves were sensitive and that is how I was finally diagnosed. When I was with my local neurologist its was a guessing game with medications - I was told I had nerve pain and suffer from cluster migraines. I had to go to the specialty clinic in Wisconsin before I was correctly medicated and then my options of numerous procedures were available.