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Old 02-19-2008, 09:48 PM #11
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I started with what seemed like a sensitive tooth, but have never had dental issues EVER, other than the usual occasional fillings. Then it disappeared on its own.

The next event, about two years later in May 2006, occurred while eating. It felt like my jaw had unhinged, a lightning bolt was zapping me, and I had some swelling. Off to the ER, they diagnosed a parotid gland obstruction, but nothing showed on MRI. So, they shot me full of IV Dilaudid and sent me home with Vicodin and orders to suck sour hard candy.

After some bouts over this past year, but no swelling whatsoever, I had an excruciating episode on December 23rd, 2007. Back to the ER (oh joy!), where I was given IM Dilaudid, diagnosed with TN, prescribed Lyrica and Vicodin.

For me, Lyrica is a wonder drug! But, alas, it isn't covered by my insurance. My GP put me on Neurontin instead. Didn't work and the side effects were hideous.

So....the final upshot is that I have been represcribed the Lyrica, which we are paying for out of pocket (ouch!), but I feel great!

Good luck and painfree wishes!
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Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.
-- Voltaire


dx'ed w/Young Onset Parkinson's Disease May 2006 at age 43. Symptomatic since 1997 or earlier. DBS June 22, 2010

dx'ed w/TN on right side 2007. GK x4, last GK 02/2013
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Old 03-09-2008, 05:48 PM #12
stewart-tn stewart-tn is offline
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Cool Tried Lyrica briefly

Quote:
Originally Posted by Kathy0620 View Post
Has anyone tried Lyrica for TN?
I tried Lyrica for TN briefly. I'd been on tegretol for a year and the pains were coming back bad. I was only on 400mgs per day, but the doctor switched me to Lyrica - 200mgs per day I think. Within three days I was screaming up the wall with multiple, incredibly ferocious spasms repeatedly throughout the day. I virtually begged the doctor to put my back on tegretol. I went onto 800mgs of tegretol per day and that seemed to calm things - but only for about a week. Now I am on 1200 mgs of tegretol per day and feel pretty good.

peace

stewart-tn

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Old 04-03-2008, 04:37 PM #13
mjacobs22 mjacobs22 is offline
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Default Glossopharygneal Neurlgia

Hi, I have Neuralgia but mine affected the ear and back of the throat. This is what I took and my 'HORRIBLE' pain Is GONE----The Lyrica didn't work for me.-------------------------------------------------------------
the SERENITY AND ANTI_FLAM was $1999 each bottle.
ENT Doctor "AMAZED" (Glossopharygneal Neuralgia)PAIN FREE IN 4 days
The name of the Herbs I took I got at the "HEALTH FOOD STORE" in OKC One is: "SERENITY" BY GAIA HERBS . The herbs included are:Skullcap herb 60 mgt--Passionflower vine 60 mgt--Kava Kava rhizome 60 mgt--Chalomile flowers 45 mgt--Wild Oats milky seed 27 mgt--Hops Strobile 24 mgt--Mugwart herb 15 mgt--Peppermint leaf 9 mgt. (1 PILL 3 TIMES A DAY with a small amount of warm water)

The other one is: "ANTI-FLAM" BY Crystal Star
Break the pain-spasm cycle with a releiving blend of 18 whole herbs. GOTUKOLA HERB for nerve pain---WHITE WILLOW BARK for releif--GINGER as a catakyst--JAMAICAN DOGWOOD for pain control---------------------------WHITE WILLOW Bk-------JAMAICAN DOGWOOD Bk-------ST.JOHNS WORT Lf-------WHITE PINE Bk------ECHINACEA a. Rt-------GOTU KOLA Hrb----DEVILS CLAW Rt------RED CLOVER Blsm----TURMERIC Rt. ext.------LICORICE Rt.----- BURDOCK Rt----MEADOWSWEET Hrb.----- ALFALFA lf.-----CHAMOMILE Blsm.----- DANDELINE Rt.----GINGER Rt.---- UVA URIS Lf.----BROMELAIN (2 PILLS 3 TIMES A DAY)
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Old 07-02-2008, 08:40 PM #14
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Quote:
Originally Posted by Kathy0620 View Post
Has anyone tried Lyrica for TN?
I tried it. It caused severe, severe urinary retention. I could barely urinate. I was ready to head to the emergency department for a catheter.
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Old 03-05-2009, 11:27 PM #15
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I had my first bout with TN about three years ago. Like many people, I first thought it was a dental problem - went to my dentist about six times who finally diagnosed it as TN and sent me to my regular doctor. He put me on Zoloft and tons of Motrin and the TN eventually disappeared (thank God).

A month ago it flared up again. BAD. Horrible electric shock pains in my face and the sensation that someone was jabbing a needle into the back of my jaw. Sometimes it was as if someone had touched my face with a frickin' cattle prod. Those of us who have this affliction know how bad this can be. Well, my regular doctor put me back on Zoloft, an anti-viral drug, steroids to decrease inflamation, and Valium to keep me calm and to try and relax the muscle around the afflicted nerve. None of this seemed to help much.

Five days ago, my doctor referred me to a pain management specialist who deals with lots of TN patients. This MD immediately put me on 150 mg of Lyrica - wants me to take it for a week, and if I can handle the side effects then he wants to DOUBLE the dose to 300 mg of Lyrica daily. He also has me eating nothing but soft foods and doing anything and everything possible to avoid stress on my jaw area.

The good news is that I have generally been pain-free for the last two days while taking the Lyrica several times a day and Valium at night. So far my only problem with Lyrica is a bit of dizziness, but I can deal with that instead of the pain.

Anyhow, I just found this forum and it has been comforting to realize that I am not alone. It is so scary to find yourself in such extreme agony (especially in the middle of the night) with this God awful pain that simply can't be grasped by someone who (mercifully) has never experienced it themselves.

My heart goes out to everyone who has dealt with TN.
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Old 03-06-2009, 12:06 PM #16
JamieE1982 JamieE1982 is offline
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Angry

I am currently on Lyrica as well. I am taking 150mg 3x a day. It works 'so-so' and I'm not that happy with it. I have 3 young children and I don't like how sleepy Lyrica makes me feel. On the + though, I haven't gained any weight on this one. YAY!!! I gained about 50+ pounds on gabapentin... I have in fact, lost 26pounds since new years. (I got a part time job!) Anyways, I have been diagnosed for 2 years now, and getting very frustrated with it all. At least my friends and family don't think 'it's all in my head' anymore... It's like if people can't physically see that something is wrong, they don't want to believe it's true. Wow, I'm rambling. lol
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Old 03-09-2009, 08:13 PM #17
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Lyrica has been nothing short of a miracle for me. Good luck!
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Kimberly M. Fowler

Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.
-- Voltaire


dx'ed w/Young Onset Parkinson's Disease May 2006 at age 43. Symptomatic since 1997 or earlier. DBS June 22, 2010

dx'ed w/TN on right side 2007. GK x4, last GK 02/2013
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Old 04-23-2009, 12:20 PM #18
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Quote:
Originally Posted by Kathy0620 View Post
Has anyone tried Lyrica for TN?
I have been on Lyrica, 75mg 3 times a day for the last 18 months for Trigeninal Neuralgia and it controls the pain very good. The only exception is when I suffer a flareup, then I up the dosage to 4 a day and that seems to do it. I have not noticed any side effects and I work full time installing Security Systems over parts of 3 states which require a lot of driving. I have read of a lot of other people that have suffered a lot of side effects but not me so far. My main worry is what is Lyricas effect on the kidneys with long term use. I have not been able to find anything out about this.
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