Does anyone else have Trigeminal neuralgia?

[Violet_Crumble]

I got it around 8 years ago, and it took ping-ponging between my doctor and dentist several times before it was diagnosed and I was put on medication that took care of it. It never came back so I thought it was a one-off, but last week it came back and worse than before. It affects the left hand side of my face on my jaw and teeth, and during an attack the spasms go right up through my ear. I've tried to describe the pain to friends, but even though I've got a high tolerance level with pain, there's no way I can describe this pain that gets across just how bad it is.

Because the doctor knew what it was this time, he put me straight on Lyrica, so I only suffered two sleepless nights. I've been a bit depressed this week because I can't work until it's cleared up, and my doctor told me the attacks will get more frequent and intense as I get older. Plus I made the mistake of looking at an online support forum, and it was full of people where TN has totally debilitated them, and I don't want to be like that.

[Warpy]

1. I have friends with it

and was once accused of having it until I pointed to an enlarged parotid gland and goo coming out of Stensen's duct as the culprit for the excruciating pain.

One friend swears by capsaicin cream to decrease the severity and the narcotic dosage, but that does take time to accomplish plus faithful application and reapplication. Short term, your doctor and strong pain meds will be your best bet.

What you want to avoid is the long term surgical fix if you can avoid it, since severing the trigeminal nerve leads to facial paralysis on one side. Temporary nerve blocks can offer some relief, again with temporary paralysis.

At some point, the attacks might be frequent enough for you to consider it, but not now.

Good luck and I hope something works for you and works well. This is one thing I'm glad I don't have!

[libodem]

2. That sounds awful, Violet

Sorry that happens to you. I take Lyrica for my chronic low back and left leg, sciatica. I've gotten used to the sleepy feeling it used to cause on my day dosage. I take the larger dose at night. It does help.

Mouth, jaw, and ear pain are in such sensitive areas. Hope you get well soon.

[Violet_Crumble]

3. Thanks, libodem. I'm having some side effects from the Lyrica this morning...

I got put on a low dose of it, and this is the third day I've been on it, and this morning I'm light-headed and dizzy whenever I stand up. Which is fine, coz it's working and masking the pain and dizziness is far preferable to the agony I've been in, but being unsteady on my feet's going to be a problem when I go back to work next week. Have you gotten dizzy when yr on it? I'm hoping this is just something that will pass and I'll be able to continue on it...

That sucks about yr sciatica. It sounds similar to trigeminal neuralgia in that it's a nerve thing as well, and when I just googled it, it says it is a form of neuralgia, so no wonder it sounded similar to me...

http://shinglessupport.com/2011/06/what-do-neuralgia-and-sciatica-have-in-common/

Did yr sciatica appear out of the blue or did something set it off? With trigeminal neuralgia, my doctor told me they don't know what causes it, but I've pretty much got a strong suspicion that it was a tooth extraction that went wrong and ruptured my sinus that kicked off my first attack a few months later...

take care of yrself

[libodem]

4. I'm used to it

By now. I don't remember feeling dizzy but I think it is on the list of side effects. I take two at bedtime and it really makes me sleepy. I had a work related injury lifting a patient in 2002. I damaged my L5- S1 disc. I had a surgery to remove the material irritating the nerve in my leg and it lasted about one year. Standing on concrete floors really created unbearable neuropathy in my legs. The second surgery helped the pain in my spine, but I had a dural tear as I stood up from the bedside. It caused a huge reaction. I couldn't straighten my leg, my neck went stiff and I endured a migraine-like headache for 3 days. Even the Fentynal patch couldn't touch the discomfort. Those types of narcs, don't set well with my body chemistry. It left me worse off in the long run.

I've been disabled ever since. I finally got my SSD about a year ago after a terrific fight. Nerve pain really is it's own special Hell,

I hope you have the very best of luck managing your symptoms if you can't be cured.

[otohara]

5. Transdermal Magnesium Therapy

get yourself some Magnesium Oil - if it works, get the flakes and make your own. I make lotion because it's less messy and easier to apply. They say it takes a few months to get your mag levels up -

It got rid of my migraines completely.
It helps with nerve and muscle pain - we are all mag deficit due to over farming.

PM me if you need help making the stuff.

TMT is part of my daily routine.