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.

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.)