Lyrica for facial pain?
 

I've been on trileptal (see post below) for atypical facial pain, but my pain is still coming back. I have fibromyalgia, too. I'm thinking about asking my doctor about being put on Lyrica. Does anyone know if it could probably help with my facial pain, too? I'd like to think so....

Hi, they do prescribe lyric for facial pain. Some have good success, some do not. I think that is the case for all the drugs they use for TN. it is a very individual disease.

Hope your pain gets better,
easygoing

I have atypical TN and just switched from Neurontin to Lyrica. I can't tell if it works any better yet because the heat and humidity dropped the same day I switched and my worse pain is with a/c so now my pain level is way down, thankfully. The test will come either if it gets hot again this month or I won't know until the weather gets cold.

Let's keep each other posted! I'm on 150 mg twice a day, which I sure like better than having to take the other stuff I was on 4 times a day.
Mary

I see my primary-care physician tomorrow--and I'm going to put in a call to my neurologist, who was prescribing the trileptal. Then I see my psychiatrist on Wednesday. I also have bipolar disorder, so my last psychiatrist steered me away from anti-depressants. I know Lyrica isn't one, so that's particularly why I am interested in that. I was on Neurontin years ago for bipolar....

Yes, I'll try to update later. I'm hoping one of them might be willing to let me try Lyrica. I know it is supposed to help with fibromyalgia, which I also have been diagnosed as having.

(Do any of you folks with TN also have fibromyalgia? I know it can cause facial pain.)

Update: My primary-care physician said she thought it was fine for me to go on Lyrica, but warned me about weight gain and fluid buildup. She said, then, that she would start me out on a lose dose, if she were to prescribe it (50 m.g.?) But I called my neurologist and he wasn't willing to work with the Lyrica since he "didn't treat fibromyalgia." He wants me to stay on the Trileptal awhile longer, to see if it finally totally kicks in. So, I'm waiting to see...Thanks!

I have TN, as well, and have also been RX'd Lyrica, yet for off-label use. Mine was prescribed for systemic nerve pain (and I don't have Fibro.M.) I take 500 MGs presently. My PM doc prescribed for longer lasting relief from pain than from short lasting, fast acting meds I have been RX'd in conjunction.

And, still, the "bouts" with TN - deep tongue pain, jaw pain, pain in my ears.

I think the efficacy of the medication is also person-specific. Like, what may help one person might not help another; it all depends on a person's body and the totality of the person's individual medical condition(s) and meds. prescribed.

I know this, about myself: Lyrica has helped. Though its dosage has had to be adjusted (I was falling asleep at times that were inconvenient and unwanted), I am no longer feeling totally sleep deprived and dreams have resumed. (Didn't even realize I wasn't dreaming until I started dreaming again.)

I hope your doc is willing to work with you on finding the med. that is right for you and willing or receptive to adjusting - when things just don't feel right (like, falling asleep in public is just not a "norm" for me; I started on 200 MGs per day and was tirated to 600 MGs, but 500 seems to work well and not put me to sleep with food in my mouth, which happened).

If it seems as if you're on an uphill battle with the doc, I'd say: Second and maybe a third opinion.

You deserve, as do all, to be treated with dignity and with respect, which entails a doctor understanding and hearing and, THEN, treating.

No one should feel dismissed or their health concerns discounted.

Just my thoughts... and thinking positively for you. :hug:

I can't believe it! I have tried Tregretol, Trileptal with no success and have been taking 3200 mg of Neurontin a day. I have come within a hair of losing my job this year because of I've been so out of it -- and still in horrible pain even with taking vicodin every day in addition to the Neurontin. Last month I asked my pain doctor if I could try Lyrica and she said it wouldn't hurt but it was very much like Neurontin. I still had a half bottle of Neurontin left so I finished those first, not expecting much from the Lyrica anyway. I started taking the Lyrica last weekend 150 mg twice a day. I noticed nothing different until today -- I woke up with the usual pain but by the time I drove to work, I noticed I didn't have any pain when I got out of my car to walk into work and it was a bit chilly outside and then the a/c was on at work and I had none of the usual deep stabbing pain - only some light surface burning -- ALL DAY LONG!!! It was the first day that I did not have to take a Vicodin at work in MONTHS!!! I could not believe it! I'm keeping my fingers crossed that this isn't some kind of fluke -- I'm scared to get my hopes up after all the false hopes I've put in nerve blocks, radiofrequency procedures (that made it worse) - to think there is actually an anti-seizure that would actually work for me!
Mary

Glad to hear the good news, Bulliemom! My doctors are insisting that I stick with the Trileptal for awhile longer...but I'm glad to hear that I can put Lyrica in my mind as a possibility if it never does "kick in" sufficiently!

Well, my success was short lived. The pain came back with a vengence today. All day I've had stabbing and jabbing in my left eye :(. But the good news is that it's no worse than what I feel on Neurontin and I am still much more with it than being in that neurontin fog. I fought off some pretty bad depression all day as well -- it's so disheartening.

Lyrica works for my facial pain, which I don't think is TN. Really tamps it down. It doesn't work so well for the hands and the feet, but it's been working great for the face. Whew. I don't have a diagnosis. Just wondering if anyone else has neuro pain in face plus hands and feet. (Sudden onset, hands then feet then face, worse on left side.)

So sorry, Bulliemom, to hear that the Lyrica success is possibly short-lived. I am still hanging in here with the Trileptal. I am now having some significant pain-free moments. My primary-care physician agrees that I need to give the higher dosage (150 mg 3X daily) more time.

Now, I don't know about the hand and feet problem. Aren't these neurological problems frustrating?! Even neurologists have trouble teasing out the cause.....I also have fibromyalgia. Did I already mention that in this post? (Gee, I've got too many posts in too many places.) My orthopedist was attributing the tingling, etc, in my back, hands, and feet partly to that. So, I'm not sure how or if it's all related. Okay?

PAYNE1, I see you're in Goldboro! I am originally from Charlotte but went to college at East Carolina. I loved eastern NC! I live in Ohio now but DH and I plan to retire in a few years to somewhere in eastern NC!

The Lyrica is definitely giving me some pain free moments that the neurontin didn't. I'm still battling a/c at work -- and when I do get a pain attack, it feels like it's been cranked down a notch. I am having a lot more burning on the surface and out one nostril of my nose though. I feel like a dragon breathing fire with hot lava running down my cheek. i Just wish I could find something that handled both the deep stabbing and the burning.. sigh.

I LOVE feeling CONSCIOUS again on the Lyrica! I was so drugged up on the 3200mg of neurontin! It's a wonder I was functional at all!
Mary

I have tried Lyrica and it helped in the beginning. I think this pain is so aggressive and jumps over the initial level easily.

The worst part of this medicine is that it makes you bloat in your waist as if you are 4-5 months preggo. I have really fought weight gain hard and I still put on an extra 10 pounds. It also causes constipation! YIKES!!

I can't stand the side effects of this drug!

I so hope it works for you and you don't have any bad side effects!!

Kimberly

Has ANYONE not gained weight on Lyrica?
 

I am only hearing worse case scenarios....has it been good for many? Anyone without significant weight gain?:confused:

Rae, how long did the Lyrica help your pain? I hope it doesn't fizzle out on me. It really has knocked out most of the deep stabs but the trade off is horrible burning. At least I can talk through the burning and not have to wince every few seconds like I did with the stabbing. I'm due for a couple of steriod shots and I'm hoping the combination of those with the Lyrica will lessen the burning. They've helped it before. THEN I will be VERY happy even if I am fatter than h*ll! I already gained 25 lbs. from the Neurontin! I can't afford to gain any more!

Ashley, don't let others' experiences stop you from trying something that may help you. Every person is different.
Mary

Hi Bulliemom,

It helped for about 4 months and then the pain was jumping over the dosage of 375mg. I didn't go up bc I was having spells of blurred vision, nausea, sickness in my head, and headaches. My neurologist thought it was the Carbatrol but she wasn't sure. I was only on Lyrica and Carbatrol at the time. My neurologist said it was time to see a neurosurgeon. It seems though the pain always jumps the first intial dose that I get to in about 4 months . . . as if I am taking nothing . . . and then I have to up the dose to get in control of the pain again. I have had no luck with these anticonvulsants (my body doesn't like them all of a sudden) and the pain when it is there is super aggressive.

If it worked, I would buy bigger jeans and continue to eat dried apricots for the constipation (works awesome). Unfortunaltely, weight gain is a common side effect for this drug. Many people also see the bloating around the waist as well. Therefore, I don't see this as a worst case senario but something to think about if you want to try this drug. Certainly, everyone is different and responds differently to medication. It is absolutely worth a try!!

Bulliemom, I hope it doesn't fizzle out either!! I wish the very best for you!!

Kimberly

I'm still on the Trileptal--doing better over all. Except I think I'm having the tiredness side effect.

A friend on mine is on Lyrica. If this thread stays open for while, then I'll try to report on her results over time. She doesn't have facial pain, though.

My husband and now my older son are East Carolina University people....

My brother takes Lyrica. I don't see him often as we live 700 miles apart. When I saw him this past summer, I was surprised at how much weight he has gained. Other than that he has not experienced any adverse side effects. His dosage is only 50mg per day though.

How has the weight gain been with you on Lyrica?
 

:confused:

Update: The neruologist upped my dosage of Trilpetal, and it now seems to be helping--fewer incidences of pain.

Nobody is willing to prescibe me Lyrica. Even my primary-care doctor. She seems to think that it could interfere with the Trileptal, and she wants me to try that longer. I see my neurologist again in about a month.

My friend with the fibro is still singing the praises of Lyrica. She says, as far as she is now concerned, weight gain won't deter her.

BTW, I'm also seeing a PT, and she is using some sort of laser along my trigeminal nerve. Maybe that is helping, too?

have fibro and tn
 

hi . you asked if anyone out there has tn and fibro. i was diagnosed with fibro and sjogren's with arthritis around 2 yrs ago. then in feb. i was wrongly diagnosed with tmj which later was found to be tn. i have had the mvd surgery 8 weeks ago. so far the surgery has given me around 50 to 70% relief on most days. it has been a real struggle, but the Lord has been my refuge and strength. the fibro got better when the dr put me on cymbalta. i have been on neurontin for yrs for other health problems. i am on 8oomg of it 3 times a day. my drs think it good for lots of my problems, i could not take the tegretal. i itch horribly. am allergic to most pain meds. i take the talwin or ibuprofen when the tn is at its worst. unfortunately i began having some hoarsness in my voice following the mvd and it turns out after seeing ent dr that the intubation left my vocal cords damaged. dr put me on voice rest for a week and now i have to go to speech therapy. its complicated. dr says my soprano voice is gone and i am an alto permantly. i am a soloist at our church. seems like if its not one thing its another. i'm 53.

Wow, Lola, you have really been through the mill! I hope you do get your soloist voice back. I've always admired people who can sing - what a wonderful gift you have shared with your church.

I have been on Lyrica for 3 weeks and am happy to report that I have LOST 5 lbs! :) I've been so afraid of gaining weight that I've cut out all in-between meal snacks and been eating healthy. :D

It turned cold and windy here this weekend - which put me in a major flare up. My doctor fit me in for a steriod trigger point shot today. He hit right where the worst pain is so hopefully, I'll have some relief soon. It felt sooooo good for a couple of hours when the numbing agent was still working but boy, was it ever a bummer when it wore off. I'm going to bed now so I can just be asleep and not feel it.
Mary

I'm finally getting back to this site. I'm still toughing it out with the trilpetal. I am actually having long periods without pain, but I did ask to try to up my dosage again a bit. Maybe I'm hoping for too much, but the dosage I'm on does poop out some parts of the day. I did ask my neurologist about the Lyrica again and he agreed that it is sometimes used for nerve pain, but he still thinks trileptal is the better bet. My friend who was on Lyrica started getting a lot of fibro pain again, so she has elected to ask her doc about going off of it. Obviously, there is no perfect medication, alas. I am 55, by the way--wish I could have waited until later in life to have all the health problems.....I was diagnosed with fibro about maybe 10 years ago or so.

I too have stabbing/burning pains in my hands & feet. I've been diagnosed with TN (March of this year) & in the last couple of months started getting the pains in my hands & feet. The Dr. tested me for B12 deficiancy, but since I didn't hear back from her, I'm assuming the blood work came out ok. I'm wondering if it isn't MS or Fibromyalgia. The Gabapentin doesn't seem to work for the pain in my extremities.

Hi achy
I have ace pain. I have nerve pain in my entire body. Evey inch. Buzzes vibrated iceprick pinches tingling burning stabb. Twitch and spasms too.
I get this all over at the same time all day. Just changin in how bad it it is

I tried lyrica and it didn't work for me.
I get the intense deep throbbing ache with it too.
It's wierd how face can hurt like this. But no fun all over

All my test have been normal.

Lyrica seems to be the new Neurontin. It should help. My insurance will not cover Lyrica unless I am on Neurontin for 90 days and it is not helpful. Neurontin seems to cause weight gain and it makes my head feel the pain with numbness when it is happening. They asked me to try topamax again and I am scared because I don't like the side effects of it. I have numb fingers and toes. I have chiari 1 malformation, fibromyalgia and trigeminal neuralgia. When I get a good day I really appreciate it. I am thankful. Seems to be more bad days than good. :rolleyes:

<<...Do any of you folks with TN also have fibromyalgia? I know it can cause facial pain...>>

I have Fibromyalgia & TN, and was on Lyrica for a long time. At one point, I was taking 300mg three times a day! :eek: Ultimately it just quit working for me.

But while it was working, it was Heaven!!

I was taking Lyrica and I experienced weight gain with it along with several other side effects. I didn't get any weight gain with neurontin. And, I also have Fibro but I was diagnosed with that long after I'd been diagnosed with TN.

hi there
 

I have done all the drugs under the sun :)
They offer relief but thats it, the only drugs that work for me are
tegratol, neuronton, and liorasal all at once three times a day.
I have had TGN now since I was 30 kinda used to living with it at this stage