Sorry to find myself here, as I'm usually mingling on the Multiple Sclerosis forums, but I do believe I'm a 'combo' deal.

A year ago my dentist (treating TMJ) marked me as suspect for Trigeminal Neuralgia. I had dull pain on my left side of my face, right below my eye in the cheekbone area that was consistently there for months. Two to three years earlier, I had the lightning bolts of sharp shooting pain into my left side of my face, on a number of occasions, where I was crippled in a ball on the floor clutching my head.

Well, the facial pain has returned since my MS diagnosis in March 08, when they did extensive testing including a mountain of blood work, MRI, EVP, spinal tap.. you get the idea.

The facial pain this time however is different. Shortly after I wake up, it's there again. It can intensify throughout the day. It doesn't leave. It's a constant burning searing pain in my cheeks, temples and from the top of my skull to the back of it. It's also on both sides!

I always thought that TN presented as the lightning bolt stabs of pain and then faded away. This has been constant for 2 weeks now. It not the curl in a ball felling like I had previously, but it's definitely agonizing. Putting cold compresses on it does ease the pain for me.

Has anyone else had their pain from TN present in such a fashion? I see my neurologist on Monday, and this will be my main focal point of discussion with him. I'm just praying he doesn't toss me back in the hospital on steroids again for the MS.

dmplaura... I too am sorry you find yourself here in the T.N. room
I am guessing you can get why I use BURNT marshmallow as a screen name . T.n. usualy dose not always present as bolts of stabing pain that fade .Some have a tight tugging feeling some a pinching or a creepy crawly , also numb or cold icey or a tingling .a stinging, or a heavy feeling. sometimes I swear my lip and chin are bigger then a freaking cruise ship.lol . and yes burning firey feeling too. everyone is diffrent and there is diffrent triggers that set t.n. off to flare up with more sever pain. most times it starts out a little pain then it grows and diffrent pains present as it progresses.
You have been around the m.s. forum then like that room at the top here are some great sites to check out with good info. I am sorry I didnt notice your post till now but I hope you see it before you go to your apt. tomorrow.
I will have you in my thoughts and be wishing the best for you.
let us know how it goes if you can. yup cool compress helps, others like warmth, and yet others need to cover area from moving air and breeze. with a scarf or bandanaPlease remember that if you want to chat I am here anytine for anything...even to give ya a hug and just listen.
PEACE
BMW

Heya Burnt! I'm back from my neuro appointment and he believes what I'm having is migraine and not TN. But he does believe I have had 'attacks' of TN in the past (I explained the stabbing blinding pain that hit me years back).

So for now I'm trying Advil to see if this helps the pain (instead of Tylenol). I don't honestly think it will lol. I don't believe he realizes how much pain I'm feeling from this.

He upped my amitriptyline as well from 10mg to 20mg at night. I've been on 10mg nightly for 3 months with the hope of preventing migraines. We'll see how it goes from here on out.

I am still of the belief that this is beyond migraine pain. I guess it's difficult for the 'outsiders' (this case, neuro) to understand the degree of pain you're experiencing. If the Advil doesn't do the trick, I'll be calling back his office and telling them something else needs to be done or investigated.

How is that advil doing to help the pain? I bravely can guess and say it probly isnt much help but i pray you are finding something to help ease the way you feel. I have you in my thoughts there is pleanty of medications that do good in controlling T.N. so dont give up just keep conversing with your neuro get all the info you can and let him know..that you know... knowlege is power and power is controll and controll is pleasent many Blessings to you!
keep us posted on how things are going. thanks
PEACE
BMW

Stopping in again. I haven't forgot you folks

I do feel that TN is part of my course of MS. That my initial 'symptom' was TN.

I've never been 'officially' diagnosed with TN, but I certainly experienced what could only be explained as TN attacks with headache/pain a few years ago.

The facial pain, thankfully, is now being controlled with Clonazepam. A benefit, because I began taking Clonazepam for burning mouth syndrome (aren't I full of fun?). I fully ditched Amitriptyline, because I experienced a bunch of side effects on it, and now it's only Clonazepam I take. I can't take anti convulsants I don't believe... I reacted horribly to Carbamazepine and Neurontin so far.

Seems my MS is 100% sensory/vision. That's a GOOD thing, as the outlook for purely sensory/vision is seen to be 'milder' than those who experience other symptoms (motor and cognitive, for example).

I do hope all you folks are doing well here!