Lyrica
 

Has anyone tried Lyrica for TN?

I have not but I do know of others that it works for to controll the pains of T.N. ... the headaches and such.
low pain wishes for you kathy
Peace Peace
BMW...Tina

P.S. welcome to neuro talk and the t.n. room and too sorry for your pain.:hug:

Yes, I was on lyrica for over a year. 200 mg a day. It has some had side effects, memeory loss, dizziness, sleepiness, loss of words, disorientation, etc. It did work in the beginning for pain, but I needed a higher dosage and that meant higher side effects. I also went thru a weeks withdrawl of nausea, stomach problems, and sleep problems to get off of it. Try it see if it helps, if not get of of it . Jen

I have tried Lyrica in combo with Trileptol for TN with MS. At first it helped alot but after a few weeks the effectiveness has reduced. I am afraid to just bump the dosage up. No major side efects yet.

Hi Kathy,

My PCP placed me on Lyrica 2 weeks ago. The first dosage of 75mg twice daily did not not work. He has now doubled the dosage to 150mg twice daily and I'm in my 3rd day without any change. I am having some side effects of dizziness, confusion, and sleepyness. I'll give it a couple more days then check back with him. I hope Lyrica helps you kathy...........Marilyn

I'm supposed to take lyrica, but I feel dizzy and "off" in just one day of use. I don't take it unless I'm having a bad flare that my other meds aren't giving me enough relief with.

It's very triggering for me to feel that I'm not in complete control of my surroundings/actions/sleep, etc., as I have a young boy to care for and now help with my grandson.

I swore that I'd use what I needed for better pain control when my daughters "grew up", but I then became guardian of my nephew so I really have put off doing what I need to do for me. It's taking it's toll as well...dealing with some level of discomfort at all times.

I wish you well and hope you let us know how it goes.

KD

I took Lyrica twice and both times had trouble with side effects. It causes weight gain and can cause increased anxiety. I'm now off of it and won't go back on it. I had to keep increasing the dose to get so-so pain relief.

Take care, Ellena

I have thoracic outlet syndrome which includes (for me) the type of pain you are discussing, plus neck, shoulder, arm, hand and some other neuro symptoms.

The reason I am writing is about Lyrica.

Within three months of taking Lyrica I developed high blood sugar of 500 (normal is 100 or less) and after 6 months I gained 50 lbs. out of eating almost nothing. I stopped it, lost 60 lbs. immediately, but I am now diabetic, as I believe, a direct result of Lyrica.

I have to test twice a day, take meds, eat differently, etc. For 47 years I had perfect blood sugar, and then within 3 months, the side effect listed by Lyrica happened to me. I now find that I am far from alone in those that have developed diabetes, but the doctors won't admit it, for obvious reasons.

Also, Lyrica did nothing for my nerve condition.

So be careful, take your blood sugar faithfully via blood work, as well as liver, which also went with raised enzymes - and watch to see if you have any weight gain.

God bless you in your search for a cure for TN.

Don't rule out Lyrica.
 

Hi, I'm new here but not new to TN. I have had TN for 4yrs now and have been through the gambit of meds and procedures like eveyone else. An MVD that didn't work an RF that turned into anesthesia delorosa, It's been a long haul but I'm doing better. I now am the TNA support group leader for Southern IL. After dealing with Neuro's for a while and finding little compassion and even less help I decided to make the jump into Pain Management. I stopped trying to treat the disorder, let's be real what else can they do?? Now I just treat the pain.
I'm on 4800mg of neurontin, 400 mg of Lyrica and 15mg of methadone. I also use a 4% oral lydocaine solution for breakthrough pain inside my mouth. It sounds like an overwhelming amount of meds but I am functioning and functioning well (except for a back injury now!!). I've been very lucky to have watched a great number of tapes from the TNA conventions and one Dr's advice has stayed with me, always try every med, even if you didn't do well with one that's similar, because it might work for you. Second, you need to control what you take and when you take it. Try breaking up your doseages so that you're taking them more frequently, same amount for the whole day, just take it more often. Less highs and lows and better pain coverage. If you're doctor doesn't like it, he doesn't have to live with the pain!! This is you're disorder you need to manage it.
As for me, after a few months and a few difficult side effects, I've adapted well and am getting decent pain control for my atypical pain. I know its different for everyone but don't give up. Remember that every med has some kind of side effect it's just giving it enough time to see if the side effects lessen. Good Luck to Everyone.

Hi....i Started With Lyrica But Stopped Taking It After A Month (too Expensive) And Started Taking "gababentin" (a Neurontin) I've Been Taking It For About 1 1/2 Years...it Calms My Nerve Some...my Biggest Complant Is Weight Gain...i've Gain About 30 Pounds...i'm Going To Go To A New Neurologist To See If Theres Something Else I Can Take...i Keep Hoping All Of This Will Just Go Away...the Things I've Read About Tn, It Sounds Like It Can Last Years And Someday It Just Might Go Away...i Keep Praying And Hoping For That...

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!
__________________

Tried Lyrica briefly
 

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
:grouphug:

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) :Good-Luck:

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.

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.

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

Lyrica has been nothing short of a miracle for me. Good luck!

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.