New and scary TN

[ms382012]

I've had two very brief episodes of trigeminal neuralgia, lasting a few minutes. Felt like getting dental work done when the anesthetic hasn't worked.

For the past 3 days, it started in my jaw near the gums, and I thought it was a toothache. However, it spread up to me entire gum, my jaw, and all the way up to my cheeks. Both sides, but the left was worse.

I also had an episode of severe tongue burning with no ingestion of anything hot. It lasted a few hours and then it was gone.

I've also been mildly ill, with an upper respiratory infection. If this is trigeminal neuralgia, would it be considered a pseudo-exacerbation or a possible relapse? The TN pain is mostly gone.

[22cyclist]

Hi ms382012: I also have TN, bilateral TN. It is hard to say if your pain is from a pseudo exacerbation or an everyday TN zap or series of zaps. I would initially say pseudo because it makes sense, URI-pseudo exacerbation. However, TN has a mind of its own and can come on at any time without an exacerbation for just a few seconds, then its done...only to come back later.

What kind of medication do you take for your TN?

Take care
Lisa
Moderation Team

[ms382012]

RE TN

It is weird and somewhat random, isn't it? Other than the respiratory crud, I have no other trigger. The first time I had it, it was excruciating but rather brief, only a few minutes. I had facial twitches and stuff first, and a light breeze hit my face as I was putting away the trash cans. Then it happened. This was pre-CIS dx. What was so scary this last time, is the length of time. I can understand now what would drive a person to begging a neurosurgeon to cut or abalate the nerve. I've had all kinds of pain in my life. Nerve pain is by far the worst. I'd rather deal with waking from my hysterectomy in recovery before the morphine drip started than TN. At least the pain from my surgery went away... for good.

I'm taking Neurontin for nerve pain. It has helped with my everyday nerve pain.

[22cyclist]

If the neurontin stops working, ask your neuro about Trileptal (oxcarbazapine). It was the best medicine I ever took for it.
TN often gets worse and the lesions can be very small. Do not let them do a surgery on you until they are sure you have no lesion on your fifth cranial nerve, or that your blood vessel is resting on the nerve.

Take care
Lisa
Moderation Team

[ms382012]

re: TN

I really need to go get copies of my last MRI, my neuro diagnosed me with CIS because I only had 2 large lesions and multiple, very small, lesions. Not disseminated throughout different areas and not separated by time (I can only think of one obvious neurological event. My thigh muscles locked up for several days. My primary dismissed it saying I must have had a bad dream and had tensed my muscles.. wt?). I think I've just been scared to look at damage to my own brain.