Attack of trigeminal neuralgia OMG

[essdipity]

For several days now I've had excruciating facial pain. It's all on the right side, and covers the lower cheek bone across to the ear, upper and lower teeth, and lower jaw and gums. Not all the time, and not all these places at once. There can be horrible pain in one tooth, as if a dentist hit the nerve, or it can move down the gum, etc. These are the acute parts, and can last for several  minutes. Sometimes the pain subsides to a very bad and long-lastimg ache, but that's much more manageable than the other.Then it goes away altogether, until....

I don't have a sinus or ear infection, I don't have TMJ disorder, and a few weeks ago I had a dentist appt when x-rays were done. My teeth are fine. I told all this to my neuro, and he agreed it's TN. He faxed a script for Tegretol, but the pharmacy had to order it and it won't be ready till noon today.

There have been many discussions about this over the years on the forum, though I don't remember any recently. Have I missed something? Any current posters have TN? It definitely can be caused by MS. I'm starting to wonder whether Tecfidera is effective for me. Been on it about 10 months. A month or so ago my long-term burning paresthesias spread and got worse, which may or may not be significant, but now this, the most agonizing pain imaginable.

My Tegretol prescription is for 200mg twice a day. Is this a low dose? I usually need megadoses of everything :-(

ess

[essdipity]

Thanks once more to my friends here for your caring comments. Had my infusion for today--now two more and it's wait and see.

ess

[jensequitur]

Whuf! So sorry that you're having TN.

I've had very mild problems with it, and my solution was to rub lidocaine lotion all over the area.

[HVAC]

TN is the Worst. I have never had it but have had many friends with it. I would not wish it on my first oncologist. I am so sorry you have to go through it at all. I am thinking about you.

Alex

[immisceo]

So sorry to hear it's still going at you with a vengeance. I'm glad they seem to have grasped the seriousness of what you're dealing with by making higher doses and steroids available to you. I know we don't bring in the big guns lightly, but what you've been going through more than qualifies for the biggest of guns.

Thank you for updating us. I was wondering how you were doing. Secretly hoping your absence had to do with an exotic vacation, I was pretty sure it actually meant things were still tough. Hang in there!

[Corriel]

Oh ess that sounds like a tremendous ordeal. I truly hope the worst is over and that the IV steroids do the trick this time.

Many gentle hugs,
Corrie

[essdipity]

Today makes 2 weeks of TN. I wouldn't wish it on anyone.

For me, Tegretol is a mixed blessing. My doctor increased my dosage, as 200mg twice a day wasn't doing diddly, even with various amounts of gabapentin added. But at 300, the side effects were crazy. I totally lost my balance and was staggering wildly. Had to go outside with my dog, and can just imagine what anyone looking would have concluded. In the shower I had to hold on to the walls for dear life.

So back to 200mg and on to IV steroids, which didn't start until this past Wednesday. Got in Wednesday and Thursday, but since Friday was the 4th of July holiday, that was it for the week. Now have Mon-Weds to do.

I'm glad to say that things are better. Still have some pain but it's considerably less. I don't know whether these next 3 infusions will knock it our completely (I hope I hope), or whether on the other hand, it will all come roaring back afterwards. I've had 2 previous rounds of IV steroids, 2014 and 2013, neither of which was particularly effective, but I'm hoping that this one will be different because it was started early in the flare.

Wish me luck, folks..I've been through the wringer with this.

ess