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.

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.

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

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?