Oh God if I write it down that makes it true, right?
 

Hello everyone. I think I need you.

4 years teeth extractions, root canals, apectomony(spelling?) and flare ups.

I'm now into my 4th flare up in 3 years. The last one lasted 7 months. This one is going on 4 months.

2 months ago a maxillo-facial surgeon finally figured out that there was nothing wrong with my teeth (sound familiar?).

Within the week I was back at my neurosurgeon (acoustic neuroma removed 15 years ago on the right side of my brain - this time it's the left). MRI done and confirmed no regrowth or AN on the other side.

I've been referred to his colleage who specializes in TN. Mine has been diagnosed as atypical. Take a vise from your workbench and clamp it onto my left upper jaw. Tighten it as far as you can, then some more. Then give me a pair of pliers because I'm *sure* if I could just yank my teeth out that would make it better.

I'm being taken off Tegratol and moved over to Lyrica. (At 800mg of Tegratol the side effects were problematic and it wasn't working aymore anyways). For the past 4 days (since we dropped back 200mg of the Tegratol), my pain has increased twofold. I now have an ice pick being shoved up into my teeth (those would be the ones I'd like to yank out please)....

Current meds are 600mg tetragol, 75mg Lyrica. Tomorrow I'm supposed to cut back to 400mg Tegratol but am just thrilled at the thought of more icepicks.

Please pardon the jumble but I'm ready to scream.:icon_sad:

Thanks for listening.

Cat

Welcome Nana :hug: please know you are not alone in this. I too suffer from Atypical TN.

The only drug I have been able to tolerate and which gives me any degree of relief that I've found is Clonazepam (Klonopin in the USA). This was after failing through a series of anti convulsants (I could not tolerate the side effects).

I'm sure some of the veterans here can give you better advise. I'm still a newbie to all of this myself! :grouphug:

Cat...
so sorry to hear you've gone thru so much and that suffering continues, worse now with med changes.

Hope the Lyrica helps.... i couldn't tolerate it nor most of the other meds tried.
does DR--TN specialist--know how much your pain has increased since Tegretol has been decreased??

have u read thru the stickies, Links above for more info about TN?
Many have shared tips, what helps them.

My heart & prayers go out to You--
do understand --I've wanted to do more than scream....

Pray you get some relief soon

Quote:

Originally Posted by pono (Post 430782) Cat... so sorry to hear you've gone thru so much and that suffering continues, worse now with med changes. Hope the Lyrica helps.... i couldn't tolerate it nor most of the other meds tried. does DR--TN specialist--know how much your pain has increased since Tegretol has been decreased?? have u read thru the stickies, Links above for more info about TN? Many have shared tips, what helps them. My heart & prayers go out to You-- do understand --I've wanted to do more than scream.... Pray you get some relief soon

Thank you. I just know I'm getting to sound pessimistic and negative to my husband.

Yes, have read through all the stickys, ordered the book, and am online researching regularly.

I guess my problem is that every time I see the doctor the news is even more negative than what I'm expecting. I'm hoping that some day this will 'even out' and I come to some acceptance. I'm not there yet: still want someone to [B]FIX IT!!![/B]

Thank you for listening. I think this may be the start of a long relationship with all of you.

Cat.

Cat, We all struggle with meds and its really tough trying to find the ones that work. Coming to grips with this condition also takes a lot of time so don't be too hard on yourself. It took me a long time to get diagnosed so my situation involved a lot of suffering without any answers or help from meds. Even now, it is still difficult to find doctors who really listen and try to work with me. Find a doctor who will listen and get your meds to a level that you get some relief. Feel free to sound off here too. We all need to. Take care, Ellena

I am SO sorry you are suffering like this and have been there with my teeth. I use heat in the form of a Mother Earth Pillow on my cheek and it helped some. Have you considered adding Percocet? I don't like taking drugs at all, but am doing what I have to for this. I take Percocet 3X a day and once it got into my system, it controls the pain a bit more. I know some folks say it doesn't help them, but it might be worth a try. And know, it took a few days until it built up to "catch up" to the pain and take the edge off. Also some people have talked about going to the ER and getting a Nerve Block, but I don't know anything about it. I believe I saw it on this forum. That might be worth a try, as well.

Take care

Thank you for your kindness and suggestions.

Today the ice pick has gone, and I'm just left with the usual monster.

I guess I find this all so unnerving in that it seems so hopeless: pain or drugs, and rarely a successful "fix" from what I am seeing here. Or maybe I just haven't found the "successful outcome" thread yet.:rolleyes:

Cat

Deb:
I'm going to try the heating pad instead of an icepack tonight. Thank you for the tip.

Percocet? hmmm.....I tried OxyContin and it did absolutely nothing except make me sick as a dog the next day.

I need to be able to function at work (at least I'm off the stupid-pills, a.k.a. Tegratol). With the Lyrica I don't feel nearly so stupid but no improvement in the pain relief, yet.


Cat

Cat...

wondering how you're doing ?? good to hear some pains --'ice pick' --better.
did suggestions, heat help??
for me COLD is trigger & exacerbator. as is Stress...

Lidocaine may 'calm' some pains. it's often in nerve blocks & other injections that can help.
also, Lidoderm --RX transdermal gel patches--can be cut into smaller pieces and placed over [some] painful areas.

i 've also used compounded topicals w/ Lidocaine & other meds for 'nerve' pain included in preparation, but now no DRs that know how or willing to RX
some compounding pharmecy's online have info. (will try to find & share ....) they can put various meds into alternative forms-- like topicals, or make special prepartions customized for you...

pain meds, like percocet may help. seems most DR prefer to RX other meds for nerve pain. it may take a combo... and most of the 'nerve' meds like lyrica & other AED's can take awhile to get used to and/or be effective.


Hope u find things that help
let us know...
pray you & others find relief...

Yes, it is very unnerving and often seems hopeless...
with all the pain, trial & error finding something that helps...
unfortunately meds for nerve pain are 'limited' and too often have more adverse effects than pain relief-- but there may be somethings that will help.
I've been looking into more alternative treatmts...

but even "breathing" exercises, which can calm, often cause PAIN...
as do other activities of daily living...
it can all get to be too much... i was recently reminded why TN is referred to as "suicide sickness " ..

as for "successful outcomes" ???.....
some have said their pain is "managed" with meds. many can't tolerate or weren't helped by meds.
others have sought more drastic interventions like nerve blocks, surgerys (i may be getting confused--about these Tx for TN??-- since i have both ON & TN often don't know where one stops & the other begins.... my whole head and everything in it--teeth, eyes, bones, nerves, etc--and beyond down thru neck, cervical spine...hurt constantly. the only thing that seems to change is severity, duration, location, manifestation..) sorry for ramble
don't want to say things that aren't so, used specifically for TN. so will go back & do some more research.... and hopefully find info so not confuse...

my neuro has been pushing Botox. (will share more about this later)
a friend highly recommended it--said it was the only thing that helped his TN.

perhaps someone may come on and share their big 'success' story... but in meantime i'm sure others here will continue to share -- whether its a med or some smaller 'success' like finding pillow that's comfortable and other little tips
these 'little' things can improve quality of life...
which does seem elusive when dealing w/ pain, problems

Main thing is NOT to lose HOPE...
while family, friends, employers, etc may not understand or be very compassionate, those here do Know and care...
sometimes that is a LOT...

Blessings


have u checked out TN site? www.endthepain.org

Yes, do try the heat pad
 

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

You can be thankful for a sense of humor
 

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

For a success story .......
 

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. :hug:

Surgery Date for MVD: Monday January 19th :eek:

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. :hug:

I'm curious too, as I have ATN specifically (although I have had attacks on my left side from type 1 TN).

Wishing you well with the surgery, that is fast, but it's excellent they're moving you along quickly. :hug:

Thanks everyone.

I almost puked when they called to say the surgery was on the 19th. I wasn't quite expecting it so fast....

Maybe I got fast tracked because I'm a repeat customer :rolleyes:

CAT

Hi everybody

So I thought I'd post an update at the bottom of this thread. There are so many new people who are terrified at the diagnosis. AS WAS I. But I am now 9 weeks post op (MVD) and am pain free. Just some residual numbness which is from all of the dental/oral surgeries, but as far as the MONSTER AX HANDLE IN MY CHEEK it is GONE.

Maybe this will help someone out there who is scared, confused, anxious or just worried sick about what might be down the road.

Wishing you all health and happiness.

CAT