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]

Darn, this new computer is a bear.

Anyway, by front effects I mean what the drug, any drug, is supposed to do, that is, fight off whatever. I doubt my neuro would go the MRI route again so soon, and I can understand why, really. As to IV steroids, I've had 2 courses in the past, and they didn't help much, but if this med for TN isn't effective I'll start asking for another round

Corrie, yes I think this is a flare. It meets the definition precisely. I also think what you describe is a flare for you. You don't need new or enhancing lesions for a flare.

Immi, I'm in the eastern US time zone, so 5 hours behind you, I believe. Thanks for the good vibes.

ess

[essdipity]

Thank you all for your kind words. I picked up the Carbamezapine  (generic Tegretol) and took the first dose over an hour ago, and so far, so bad. Don't know how long it takes to work or whether it has to build up to be effective. Here's a good one--these are to be chewed. Great idea for people with face pain, especially those for whom eating and drinking anything seems to be a trigger. What's wrong with this picture?

This morning after I ate some cereal I was in pain but thirsty, so I thought some ice water might help, cold being good for dulling pain and all. Wrong! Yikes. I think I'll need to buy some straws to keep from getting dehydrated.

I had MRIs in March of this year and last. Both said there was nothing new, but I really don't know how they can tell. On both sides of the ventricles, extending the whole way and beyond, there's nothing but non-enhancing lesions, totally overlapping and 'confluent,' as the saying goes. Last year I had a big relapse that lasted from January through about April or maybe May, so they didn't want to start me on Tec till it was really over, and that was in late July. I had bad gastro effects from the drug when I got to the full dosage, so I was stopped and restarted in September (at a much slower rate). That worked fine and without side effects.

Now I'm wondering about 'front effects,' as I like to call them, meaning

[doublevision1]

Sounds just awful, Ess. I was also thinking a MRI might be a good idea. In the meantime, have you considered a round of IVSM?

[Corriel]

Oh you poor thing! I have heard the horror stories abou TN pain. I hope the Tegretol does the trick and does it FAST!!

No personal experience with TN but having been on Tec for 14 months I get why you are starting to question its effectiveness.

I had a potential MS flare earlier this year. Neuro is on the fence as to whether or not it was MS or something else. I have since developed paresthesia and after a month of being in a large area it has settled into a smaller area where it has remained pretty much constant after 3 months.

Interestingly my MRI in Feb showed no new lesions so who knows?

Between your paresthesia and now TN, do you think you are experiencing a flare?

Best wishes for speedy pain relief,

Corrie

[immisceo]

I've heard that TN could be used to extract state secrets, it's that bad. I'm so, so sorry you're experiencing this. I've not had it myself, but I've looked into it enough to know I never want it.

I'm afraid I'm a wash-out as far as Tegretol doses go.

As for Tecfedira, you know yourself the goal is fewer relapses than would have been experienced without the DMD. Did you have an MRI right before you started? It might be the only way to really judge efficacy. I just mention it in the sense that it's always difficult to gauge what we're experiencing compared to what we *might* have experienced otherwise. Put bluntly, this could be the version of this disease that IS better than what you might have otherwise experienced.

But don't think for a moment I'm recommending a grin and bare it approach if you truly feel you've done your time with this drug. We all have to stay flexible when it comes to so many things, meds included.

I don't know your time zone, so I can't do the maths, but I'm still watching that clock for you and willing noon to hurry up. Hugs to you, Ess.