Hi! Bear with me please, I'll get to my question in a sec. Twenty odd yeard ago I was diagnosed by a neurologist as having a migraine type condition without the pain. Or minimal pain to be precise. What I had was a completely numb right side of my face, mouth, toungue etc. I would have a feeling of pressure and would feel light headed. This would come in episodes that would last for weeks or months and go away, again for usually months. Eventually they stopped in my mid forties.
Fast forward ten years and the shocks and stabs started. Oww!! I never made the connection with what happened back then but my current neuro did. The numbness now feels identical to what I had then. As I write this now I have no pain, just pressure. Yesterday I had aching. Lucky me.
Thanks for your patience, here's the question. Does anyone else have this? There is no doubting that I've had TN for 20 plus years but why did it alter to include pain? Where did it go for 10 years? Does anyone else primarily have numbness????
We are all in the same boat… But most don’t have in common
any or all of these,
Trigger
Symptoms
Remission
Meds
Side effects from meds or procedures
Probably the only common you might find with some here… Is the numbness , of your three questions.
The other 2 questions are hard....i don't think there is an answer
I would think, that 2/3 of us here....started at the dentist, car wreck, fall, genetics.... But even the why, how , still cant be proven.... We cant understand
The rest have zero answers.
We can only commiserate and get the best treatment and support we can grab on to!
That was a quick reply! I have no idea what set mine off all those years ago but I do know it was the dentist this time around. It just feels so strange to only find out now that I've had it for so damn long! I remember the first day I got the numbness way back then I thought I'd had a stroke!
I had a complete remission for eight years. I had ATN when I was 29. Eventually given Amitriptyline and was pain free. Two years later I went off that med because I wanted to get pregnant. It was completely gone until last year when I was 37. Now it has been a straight year and a half with this thing. What started in one tooth is now bilateral and much more wide spread. Thankfully Amitriptyline does work very well for me.
My mother has bilateral Type 1 TN. She suffered horribly for eight years. I left her five years ago and hasn't returned. She has MS though so her case may be a bit different.
I hope you are able to find relief soon :)
catwoman said:
That was a quick reply! I have no idea what set mine off all those years ago but I do know it was the dentist this time around. It just feels so strange to only find out now that I've had it for so damn long! I remember the first day I got the numbness way back then I thought I'd had a stroke!
My symptoms seem odd too and I am yet to come across anyone who has the same pattern that I have experienced. Makes it kinda scary going forward as no one I know has "blazed the trail". It seems many have experienced remissions and I only know of one person who has been in remission some 50 years and counting. A good person to email in our group is Red. He's has the most extensive information regarding TN and might be able to give you some insight.
You didn't mention whether or not you're taking medication?
I’m confused…you said " why did it alter to include pain"
TN= PAIN, the worst imaginable pain.
Numbness does not equal TN.
Was your preceding years of numbness related to your eventual TN? I don’t know. I’ve never seen that discussed in any research I’ve read, is it possible?
Anything is possible…
Unfortunately the field of Neurology is vast, many neurological conditions are not well understood , they overlap and many like TN still don’t have a cause/cure.
As KC mentioned my pain disappeared for years.
I had bilateral TN diagnosed in 2002, it started with an electric shock underneath my right eye out of no where…it progressed, 9 months after diagnosis after 6-8 weeks pain free on the meds we reduced /weaned off my meds and I experienced an 8 year remission on my right side and a ten year remission on my left.
We all share similarities with TN, but each of us is different with our pain, our “story” as well as how we respond to the various treatments.
So I don’t think there’s a clear answer catwoman, I hope the pain stays manageable for you, (( hugs )) Mimi
Yes I am on medication, Tegretol like so many others. My neuro is adamant that what I suffered all those years is TN and he based it on the fact that it is exactly the same area and I have almost identical numbness now. As I write this today my face has been aching and only a relatively small portion is numb compared to yesterday where it was wide spread. Maybe I am a trail blazer! I did once make the Australian Medical Journal! Although it was for something unrelated. Although maybe it wasn't..........