Author Topic: A new drug, and less pain!!  (Read 6838 times)

MAlegant

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A new drug, and less pain!!
« on: April 28, 2009, 05:40:41 pm »
Hi all,
I was on Cymbalta for nerve pain (face, mouth, gums, teeth, tongue) but it really didn't work.  I went on Lyrica and lo and behold, two days of less pain!  And I mean lots less.  I imagine as the dosage increases (in increments) and builds in my system, I may actually have NO pain. If that happens, I might just cry.  I'm hoping I don't have many side effects because this is the best I've felt in 9 months.  Anyone else on Lyrica????
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Adrienne

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Re: A new drug, and less pain!!
« Reply #1 on: April 28, 2009, 06:42:55 pm »
How wonderful that you found something that works for you!  Must feel sooooo good!

I'm not up on all the posts.....is it normal to have nerve pain after surgery?  I haven't read this before........

Sorry for the ignorant question.  Still learning.....

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

MAlegant

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Re: A new drug, and less pain!!
« Reply #2 on: April 28, 2009, 08:46:34 pm »
Hi Adrienne,
No, I don't think it's normal, unless your trigeminal nerve is involved, which mine was.  I'm unique, what can I say?  Hope you are doing better and getting some attention from the docs.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: A new drug, and less pain!!
« Reply #3 on: April 28, 2009, 08:52:27 pm »
Marci -

I don't have nerve pain, therefore no meds for me and no feedback for you.  Sorry!

Just wanted to say I'm glad you're getting relief and lots of it  ;D

Here's hoping the relief continues!

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: A new drug, and less pain!!
« Reply #4 on: April 28, 2009, 10:17:48 pm »
I think Nancy Drew was starting Lyrica for her possible fibromyalgia, maybe she will spot your post. I think it was starting to work for her at last report.

More importantly, I am glad to hear that you are getting somewhere! The prospect of no pain is really exciting news. I am happy for you. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

moe

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Re: A new drug, and less pain!!
« Reply #5 on: April 28, 2009, 10:48:27 pm »
wow, Congratulations Marci!
Here's hoping they LYRICA works and keeps on working.
Positive thoughts,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Debbi

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Re: A new drug, and less pain!!
« Reply #6 on: April 29, 2009, 11:22:22 am »
Hey Marci-

I took Lyrica for a short while when I was having an abnormal amount of pain on the side of my face and it made me a little too "woozy" - however, it did work for the pain.  Fortuntately, my pain was only temporary.

A friend of mine who is in late stage cancer is taking Lyrica (she has severe nerve damage caused by tumors) and she says it has been terrific.  I also have a friend who takes it for fibromyalgia.  I think it works very well on nerve related pain, so hopefully it will be your miracle drug. 

I know Anne Marie (Yardtick) has major nerve pain issues; not sure if she has tried lyrica - I talk to her on Facebook, so will ask her.  Or maybe she'll read this.

Anyway. Marci, I am keeping my fingers crossed that this is goign to work for you.  I only had a small sample of what you must be going through, and I must say that I really feel for you.  Fingers and toes crossed.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Migoi

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Re: A new drug, and less pain!!
« Reply #7 on: April 29, 2009, 11:48:02 am »
Congratulations, Marci, on finding some relief...less pain is good, extremely less pain is extremely good. Hopefully whatever side effects there are will be easier to live with than the pain. Here's to a painless or at least a less pain future.

Adrienne, like so many aspects of the whole AN journey, it's in the individual details. One value I found in this forum post-diagnosis and pre-surgery was to get an idea of the realm of possible solutions for things that could come up. After being told on the phone while at work that I had a "growth on the acoustic nerve and would be contacted by a surgeon that deals with those", I stopped at Barnes and Noble and picke up a small moleskin notebook. As I moved through the research, I wrote info in that. I found I needed to limit miyself to 30 minutes a day of research and if I thought of something at another time I would take a note in my PDA.

When I ran across a discussion like this on on this forum I would make a note: nerve pain - possible medication: Lyrica, Cymbalta Then if that thing did occur, I had a base to start the research on that aspect. I was very fortunate in that most of the possible complications I noted down..I ended up not having to deal with in my case.

It might not work for everyone but it certainly helped this very left oriented brain get through it.

Oh yeah, there are no ignorant questions. Not a single person on here was born with any knowledge about AN's. We were all thrown into the deep end of the knowledge pool by that phone call or MRI results appointment. It's a deep pool and just like trying to get off the bottom of a real pool, we had to claw our way back to sanity one question, one internet search, one support group meeting at a time.

..take care.. tim b
Arkansas Support Group Leader
The wild places are where we began. When they are gone, so are we. - D.B.
AN's only affect the smartest, most interesting people in a population.
On a hill in Onda, AR
http://www.facebook.com/migoi

Jim Scott

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Re: A new drug, and less pain!!
« Reply #8 on: April 29, 2009, 03:29:38 pm »
Marci ~

My wife's Rheumatologist prescribed Lyrica for her fibromyalgia (last year) but it didn't work as well as the Neurontin she has taken for years, to good effect. She is back on Neurontin and doing O.K. 

However, I'm very pleased to learn that you're almost pain-free at this juncture.  I trust the Lyrica will continue to be effective for you. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

yardtick

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Re: A new drug, and less pain!!
« Reply #9 on: April 30, 2009, 04:09:57 pm »
Hi Marci,

I take Neurontin and I believe Lyrica are from the same drug family.  At this point in time I couldn't live with out the drug. 

Wishing you the best Marci,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

MAlegant

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Re: A new drug, and less pain!!
« Reply #10 on: April 30, 2009, 07:44:18 pm »
My doctor said I "failed" neurontin.  She put that right on the prescription! I felt so bad....
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Vivian B.

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Re: A new drug, and less pain!!
« Reply #11 on: April 30, 2009, 07:51:58 pm »
Hi Marci,

I am glad you posted this information and more glad that it is working for you. I was actually questioning myself these past couple of days what to do if pain persists. I am however, on W & W but can always ask the Dr. to try this medication if symptoms get worse. Hope your pain free journey continues. Thank you for sharing.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

EJTampa

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Re: A new drug, and less pain!!
« Reply #12 on: May 01, 2009, 06:13:32 am »
Hi Marci,
 
I know I'm late to the party, but just wanted to echo everyone else in saying I'm really happy that you are finally able to keep the pain at a managable level!  It's funny how different medications help different people.  Maybe someday they will find a magic pill that will work the same for all pains and all people :).
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Kate B

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Re: A new drug, and less pain!!
« Reply #13 on: May 01, 2009, 07:49:51 am »
Awesome news!  I had a headache yesterday with the flu (good old-fashioned, not swine)  and was completely immobilized.  I can't even fathom chronic pain, so the fact that you have found something helps others!!  Again, awesome news.
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

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wendysig

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Re: A new drug, and less pain!!
« Reply #14 on: May 01, 2009, 08:12:50 am »
Hi Marci,

I just wanted to say how glad I am that you finally found relief from your chronic pain.  I hope you are not troubled by side effects, or if you are that they are slight and very tolerable.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!