anyone with TN

[LATW]

Does any one have TN that hit them like lightening at with the first one or two episode and then callmed down to a dull roar?
I AM PRETTY SURE IT IS TN IN MY FACE RIGHT NOW. IT IS FOLLOWING THE SAME PATH AS BEFORE. I ACHE AND HAVE PAIN ON MOVMENT BUT NOT THE AWFUL JABS. BUT I AM WORRIED IT WILL GET WORSE.

DOES TN HIT HARD EVERY TIME? OR ARE THERE TIMES IT IS THERE BUT NOT DISABLING?  ALSO, WHEN YOU HAVE TN DOES THAT SIDE OF YOUR FACE FEEL PUFFY EVEN THOUGH IT DOES NOT LOOK PUFFY?  

I THINK I MAY BE CALLING MY DOCTOR TOMORROW. I WANTED TO WAIT FOR THE MS CLINIC ON WEDNESDAY BUT DON'T WANT THIS TO GET WORSE. IF IT DOES GET WORSE I WILL NOT BE ABLE TO GO TO THE MS CLINIC!!

LA

[ELT]

   Hi, it's actually equal on both sides.  When it's not in it's constant state, starting to eat, or drink anything, even water, sets a wave effect in motion.  It starts at my mandible and expands, like you see recorded sound waves.  It radiates out from my mandible.  

   I have all sorts of odd sensations in my face, and yes, at times I could have gleefully ripped my teeth out.  Luckily, it passed, each time it happened.  It took a while, but, it got better.  

   Lyrica proved to be effective for me, but it took almost three weeks to have an effect.  I know it was working, because i weaned myself off it too early last time.  The pain was still there, lurking under it.  I increased the dose again, and waited a few more weeks, and it subsided.  To a tolerable level.  


   Sometimes pressure actually helped, trust me, roll a chilled beer bottle on your cheeks, across your jaw bone, it works, and drink the contents. lol

   Erica

[LATW]

I AM SORRY TO HEAR YOU ARE DEALING WITH THIS TOO. SEEMS MANY OF US ARE.  

WHEN IT IS REALLY BAD DO YOU FEEL LIKE PULLING YOUR TEETH OUT ON YOUR OWN?!  I THINK I COULD HAVE HAD A ROOT CANAL DONE WITHOUT BEING NUMBED AND NOT HAVE EVEN NOTICED! THAT IS HOW BAD THE PAIN WAS.  I REALLY THOUGHT EVERY ONE OF MY TEETH ON MY RIGHT SIDE NEEDED TO COME OUT AND I WAS VERY WILLING TO DO IT MYSELF!  

DO YOU HAVE A DIFFICULT TIME SLEEPING ON THE AFFECTED SIDE?  I CANNOT PUT PRESSURE ON THE RIGHT SIDE OF MY FACE WHEN I AM HAVING TROUBLE.  MAKES IT HARD TO SLEEP.

YOU DO SOUND LIKE YOU HAVE TN TO ME.  AWFUL!!  

[ELT]

   Although I've not been diagnosed with TN, the neuro hasn't mentionned a name, just told me it's likely nerve pain, and prescribed anti-seizure meds, I'm certain that's what it is.  

   It comes in stages, starts out light, and works it's way to ferocious over a few weeks.  Stays bad for weeks, then slowly subsides.  I always have weird sensations in my face now, but I have calm periods where  the pain is either tolerable, or, sometimes, nicely enough, not noticeable.  

   When at it's worst, my lips and tongue feel like they have shingles, my gums feel infected, my teeth all think they need a root canal, ALL of them, and my jaw feels like it has been pummeled w someones fists or something, at the mandible, spreading towards my chin.  There are also transient unpleasant sensations in my ears.

   The tinnitus used to only be in my left ear, it is now in my right, equally.  Or close.  

   At the moment, my face is more numb than painful, so that's good.  I still feel pain, but not constantly, and compared to what it can be, pfffft, this is nothing, lol.

   I was switched from keppra, a seizure med I was on for an idiopathic seizure disorder, because the first time it happened, they thought it was an allergic reaction.  The neuro put me on gabapentin (neurontin), I was having, after a while, to take too much, to see results, so, my gp put me on lyrica.

   Sometimes I put ice packs on my face, and in my mouth, it alters the sensations, somehow, which relieves the pain.  The best thing though, is to roll a nicely chilled beer bottle on the sides of your face, trust me, this works, lol lol.


   My face feels all sorts of sensations, puffy, hot, wet, achy, etc, etc.  

   Hope if nothing else, you enjoy the fact that you're not alone with this, lol, you have sister/brother sufferers.


   Erica

[humming4u]

i'm pretty sure I have tn, atipical, bilateral,going to go after a dx soon as i have all my ducks in a row, thanks to quixs help!
i too, at first thought it was sinuses, then a tooth, almost had surgery, but dentist was good enough to tell me her thought he'd do more harm then good.
its a terrible, unrelenting pain.at first it literally had me on my knees and my head on the floor begging for mercy from any one. ive come to deal with it better, but do cry often!
i hope for you its a minor thing, and if its not you get releif soon

[LATW]

WHEN I FIRST HAD TN IT COVERED THE ENTIRE SIDE OF MY FACE DOWN INTO MY NECK.  THE SECOND REALLY AWFUL ATTACK I HAD WAS IN THE SAME AREA AND STILL INCLUDED MY NECK.  

I READ ON ANOTHER BOARD THAT YOU CAN ACTUALLY HAVE TN ON BOTH SIDES. :(

I AM PRETTY SURE THAT IS WHAT IS GOING ON WITH ME THIS TIME.  IT IS NOT JOLTING LIKE I HAVE EXPERENCED IN THE PAST BUT THERE IS SORENESS.  

WHEN THIS FIRST HAPPENED I THOUGHT IT MIGHT HAVE BEEN A TOOTH I NEEDED WORKED ON. I HAD THAT TOOTH PULLED OUT ABOUT 2 YEARS AGO.  BUT I STILL HAVE THE PAIN.

THE FIRST TIME I HAD TN MY TEETH HURT. IT WAS ODD BUT THE PAIN WAS ONLY ON ONE SIDE OF MY FACE.  IT WAS LIKE A LINE HAD BEEN DRAWN DOWN THE CENTER OF MY FACE. ONLY ONE SIDE HURT.

THE DOCTOR SAID THAT WAS ONE WAY HE KNEW IT WAS NERVE PAIN.  

LA

[Jenn0030]

Anyway...make sure you talk to your MD.  They do have medications that make it more bearable.  I personally am on seizure meds that help keep it in check, so the less meds the better.

jenn

[Jenn0030]

You do bring up a good point that I hadn't thought about.  I was in the ER this week for pain in the neck below the jaw, ( I actually thought it was my heart I had a MI when I was younger).  It was on the opposite side that my TN occurs on so I didn't make the connection.  It was a different pain that I have not had, not burning like I always have.  It was a throbbing pain up to my ear.  I guess that now I have something else to bug my neuro about.

Jenn

[LATW]

RIGHT NOW MINE IS LIKE A PULLING OR SWOLLEN PAINFUL FEELING.  IT IS NOTHING LIKE I HAVE HAD IN THE PAST, THANKGOODNESS!

SORRY FOR STARTING ANOTHER THREAD ON THIS ISSUE. I DID SEE THE OTHER POSTS ON TN BUT DIDN'T EVEN THING BEFORE I POSTED THIS ONE.

LA

[Jenn0030]

I don't know if this helps...
I was just dx with TN a couple weeks ago.  Mine feels like I have a small brush fire(painfully annoying) on the side of jaw that alternates with tingling around my chin, jaw, lip and up to my ear.  It is not constant for me, comes and goes during the day.

I am so sorry that this is going on for you.  This is not a fun thing

Jenn

[AMERS389]

I just posted on TN last night and have been doing alot of reading since I was diagnosed with TN three weeks ago by my neuro. There are different types, mine started off with actually bilateral numbness,tingling in chin, lips and nose..but then over next month or so it moved only to right side. It is a dull, deep aching, tingling pain. sometimes it does this fun burning routine from cheek and running overt scalp. My face feels swollen sometimes and hot but it never is..so yes to that question.

I do not have the lighting jabs that you see in typical TN, I have the atypical one that is constant..I have had it now 3 months and I pray every day for  God to take it away soon.
Even though pain is not intolerable it is affecting my life, my work(use to be fun, loud, and positive but lately trying to deal with pain at work without complaining is tough, sometimes just go to br for a short cry..then pull myself together..

I hope you catch it soon, and it goes away quickly...It is not a great diagnosis..It is one of the top 5 as most debilitating pain problem in people..Sorry to be such a downer but it is not an easy thing to deal with.

May God Bless you and I will pray you don't have it, but if so then strength to deal with it.  Amers