NeuroTalk Support Groups - Lyrica for facial pain?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/)

- - Lyrica for facial pain? (https://www.neurotalk.org/trigeminal-neuralgia/132416-lyrica-facial-pain.html)

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:

Quote:

Originally Posted by Bobbi (Post 695150)

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:

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?