Hi Cat, sorry to have to meet you like this - but welcome to the most compassionite and caring forum on the web. These folks are so awesome. There may be few success stories, but still helps to connect with others who can relate to the pain.

My TN is very mild compared to the others here, so my opinion may not count for much, but my doc prescribed tegretol for me only to take when I have an episode - so far mine are still very sporadic. My pain is only centered in my ear ( constant hot, boring pain with intermittent ice picks). But as for the tegretol - I'm not sure if taken in this manner could even make any difference, but I do not want to take it if I can do without it. The meds have not offered a noticeble decrease in the pain, so I too get much relief from a heat pad held to my ear and side of face. I have one of those crescent shaped therapy bags that you heat in the microwave and it sort of curls around my head and really helps the pain - again mine is a minor nuisance compared to the rest of you here.

I hope you can get some help for your pain and I will continue to pray for all of us to find pain relief and sanity.

Hope you have a wonderful and peaceful Christmas in spite of this demon you are dealing with .

Rhonda

So I made it through another day at work. By 5 p.m. my face was screaming.

Then I went to the hairdresser. How come they are the ones we cry with? (like a bartender I guess, we spill out all of our troubles). So I sat there in a high-end salon surrounded by babelicious blonds, bawling my eyes out with my hairdresser (the owner) just hugging me and trying to cut my hair through his own tears.


Because we are still investigating the possibility of another neuroma in my brain, things are still a bit up in the air as to what pain modalities will be considered. So in the meantime, I'm on the Lyrica (75mg now, bumping to 150mg on the 25th).

And I'm scared. Have already had brain surgery. I know what it's like. What scares me though, is the possibility that a brain surgery may not fix this: like: this is what your'e STUCK WITH FOR THE REST OF YOUR LIFE. Nice. Let me check out then.

JUST.FIX.IT.

Tried the heat instead of ice: it just ticked my face off so I guess I'll go back to ice. Thanks for the suggestions though.

I saw BassetCase's (love the name!) post and upon first scan, I thought: oh, Basset's recommendation I shove my head into the microwave...funny, on first thought that almost made sense. So I must be losing my mind.

OK so my big task today has been to try and find something GOOD about this. Here's what I came up with: I come from a huge family. So does my husband. Usually XMAS is at my house. Last year I did 2 dinners back to back, 3 x 30+ lb turkeys, and 46 people at the first dinner, 34 at the second. So what's the good thing? I DON'T HAVE TO DO ANY OF THAT THIS YEAR! My family has decided to cut me a break and I get to just show up at my sister's house. My previous "dream XMAS" would have been to be told to bring the buns and butter. This year I don't have to bring anything. woo hoo

That, for sure, will get lots of people on the list wanting a little TN to avoid the duties of the holiday season.

I guess what I need right now is a black+white success story. Not one where someone manages their pain...but an out-and-out FIX to this Monster. I could hang on to that for dear life...just one story would be fab.....

Oh and just one other thing, Santa: can you take the axe out of my cheek?

Cat

Hey Cat, so sorry the heat did not work was hoping it would help.

It helps to have a sense of humor, and you have a good dose of it.

Enjoy your "free" Christmas.

Merry Christmas and comfort and peace to all.

Rhonda

I've done the percocets myself folks. There's NO way I would be able to work while on them.

Clonazepam (Klonopin) on the other hand, I can break in half, or into quarters, and take a smaller amount for relief. It's a different type of medication, and I have found it's been a tremendous help for the burning type pain that I experience.

As for the stab stab, I haven't had that in a while now, so I can't speak for this medication and what effect it has on that type of pain, however it has anti convulsant properties, so I'd imagine it may help some.

It was actually on the burning mouth syndrome forums I learned that Clonazepam may help burning searing pain where other drugs failed... and wouldn't you know it? It does for me!

Happy New Year

A quiet holiday for me: it seems that this Monster now determines my family and social activities more than I would have imagined.

The Lyrica isn't doing a very good job. Neurologist's appt is on the 6th so only a few more days.

I've started to notice the affects of hot/cold foods and drinks on this pain. Cold things definitely flare things up, and I believe hot does as well, but maybe not so severely.

I see the neurosurgeon on Jan 14th for a review of Radiology's findings of the examination of my MRI.....and am hoping that there can be some sort of "fix" to this thing. The concept of being medicated for the rest of my life is not something I want to consider.
Just want it over. My world is shrinking....no one really wants to be around someone with this thing, do they?

Cat

http://neurotalk.psychcentral.com/thread68330.html

I hope I did that right - if you have not already please read the post from Judy M posted yesterday in the above thread. Maybe it will give you some hope.

BLESSINGS,
RHONDA

UPDATE:

I saw the neurosurgeon yesterday and he's booking an MVD for within the next month.

The extreme 'atypical' nature of my TN has him a bit concerned, and he says that if I were a classic TN1 he could give me some better odds of success. Right now he's saying about a 60-65% chance of a positive outcome (ie: no more pain).

The big issue is my hearing, as I am deaf on the RH side due to the previous acoustic neuroma. Chances of damage to the nerve during the MVD ranges from 2.5 to 5%. That includes everything from slight damage to complete hearing loss. He is optimistic they can be extremely careful with the acoustic nerve and I am comfortable with those odds.

Thanks for listening. I don't have too much energy right now, yesterday took it all....but I'll post more later.

cat

NanaCat, I do hope it works out for you.

Surgery Date for MVD: Monday January 19th

Boy, you are on the express train with this. I hope you have a great outcome although I commend your surgeon for being upfront about the atypical stuff not responding as well. Please post when you can. I'll be wondering and hoping that all goes well for you.