Lyrica?

[soshime]

Help for severe trigeminal neuralgia - I've been there!!!!!

I've dealt with facial pain for a long time (since 1996.) It's been diagnosed with Atypical Trigeminal Neuralgia...although at times it's presented as straight TN. Years ago when it was bad, I took Tegretol (then after awhile developed a rash/allergy.) Then I took Neurontin (same thing took it for awhile, then developed the allergic rash...this happens to me a lot, I seem to get allergies to meds.

Hi rdmc,

I used to suffer from bilateral trigeminal neuralgia across my entire face! For seven excruciating years - I thought i'd never find relief. I was a guinea pig for so many meds during those first few years, including nerve blocks . . . The combo that worked best for me (besides Lyrica, once I got used to it) was a combo of Trileptal and oxycarbazepine. Oxycarbazepine is different from tegretol in that it has an addition molecule of oxygen added to it, making it different -and more tolerable- than carbazepine.

BUT the real reason I am writing this to you is to urge you to ask your doctor about gamma knife surgery.

It's a totally non-invasive surgery that uses a gamma knife (basically gamma lasers) to destroy/disrupt the trigeminal nerve in your face. it's not the prettiest procedure, and you can't tell right away if the surgery "took" to you - it took about three months before I felt the results - but it was sooooo worth it. All I needed was a facility that had a gamma knife and a brain surgeon that performed such procedures. And, of course a technician skilled at calibrating the gamma knife machine.

It changed my life. I no longer pop meds all day for pain relief. I can hold down a job. I don't freak out if someone comes near my face (docs used to palpitate my face to see what was wrong with it when I'd come to them for help, and would leave crying, the pain was so bad). I'm not groggy from the amount of meds i have to take to control the pain. I hardly get any pain now, except for behind my eyes from time to time - usually when i'm tired. Then I take 25 mg of Lyrica to control that.

I urge you to at least look into it. It could change your life. I wish you the best of luck with your TN. I know what a h*ll it can make your life. If you have any questions about the procedure, feel free to ask me. I'd be happy to answer anything for you.

sincerely,
soshime

[rdmc]

BUT the real reason I am writing this to you is to urge you to ask your doctor about gamma knife surgery.

I urge you to at least look into it. It could change your life. I wish you the best of luck with your TN. I know what a h*ll it can make your life. If you have any questions about the procedure, feel free to ask me. I'd be happy to answer anything for you.

sincerely,
soshime

thanks so much for the info. I'm seeing an MS specialist in Feb....have had to wait 6 months for an appointment with him). One of his main interests is facial pain, so I'll ask him about it. That one day without the pain, even though I was feeling sick everywhere else, was so nice. and you're right, I pop meds all day long, not pain meds, but the meds I mentioned, just to try to keep the "sensations" manageable. Talking too much, chewing anything too crunchy or tough, going to get my teeth clean ( ugh ) can really set it off. Luckily I only have it on one side.

Once again, thanks for sharing your experience.

[soshime]

my pleasure. i hope you find relief.

and I wanted to say, that what I meant by "it's not a pretty procedure" is that while they DO attach a special headpiece to your noggin via titanium screws (two in front, two in back), they don't leave any permanent marks. They give me a nice anesthetic/"forgetfulness"/anti-anxiety med called "Versed" through the whole procedure. Because with that thing on your head, you have to lie down, get your head screwed to a special board, go for a brain MRI, then come out, get unscrewed, rest (and get more meds pumped in via IV) while they locate the nerves and determine how much gamma knife you need, then the docs come back, give you more meds, lie you back down, and screw your head back to the board (so it's in the EXACT same place as before, so their calibrations are dead-on), and place you in the gamma knife machine, which is dead-silent. eerie. More meds (because I'm claustrophobic). I had about an hour of gamma knife - they only did one side of my face. The wounds from the screws heal up quickly without any lasting scarring or damage. They're basically in your hair, anyways. Bangs are good to have!

So all in all, I was there from 6AM til about 1 or 2 PM - I don't fully remember. I had my boyfriend and my younger sis with me. There was NO way I could drive. And I was STARVING by the time they were done! But the screws leave no marks or damage to your face or head. You can do a lot of research online about it. And if you have to travel for it, seriously, it's worth it. I can't stress that enough. I was at my wit's end. So, best of luck to you.

[rdmc]

and I wanted to say, that what I meant by "it's not a pretty procedure" is that while they DO attach a special headpiece to your noggin via titanium screws (two in front, two in back), they don't leave any permanent marks. They give me a nice anesthetic/"forgetfulness"/anti-anxiety med called "Versed" through the whole procedure. Because with that thing on your head, you have to lie down, get your head screwed to a special board, go for a brain MRI, then come out, get unscrewed, rest (and get more meds pumped in via IV) while they locate the nerves and determine how much gamma knife you need, then the docs come back, give you more meds, lie you back down, and screw your head back to the board (so it's in the EXACT same place as before, so their calibrations are dead-on), and place you in the gamma knife machine, which is dead-silent. eerie. More meds (because I'm claustrophobic). I had about an hour of gamma knife - they only did one side of my face. The wounds from the screws heal up quickly without any lasting scarring or damage. They're basically in your hair, anyways. Bangs are good to have!

So all in all, I was there from 6AM til about 1 or 2 PM - I don't fully remember. I had my boyfriend and my younger sis with me. There was NO way I could drive. And I was STARVING by the time they were done! But the screws leave no marks or damage to your face or head. You can do a lot of research online about it. And if you have to travel for it, seriously, it's worth it. I can't stress that enough. I was at my wit's end. So, best of luck to you.

So is the area numb afterwards, or do you still have feeling?

[Hawkgirl]

Shout out to my Lyrica buddies! How's it going?

I am still battling some pain. I am grateful that it's not the super-bad pain it was for some time, and I wonder sometimes if it's unreasonable for me to want to be pain-free. Does everyone have pain? DH seems to always be sick with something: a cold, a migraine, RLS. My mother is old-school stoic; she would keep a stiff upper lip if her legs were broken. I've been wondering if I should just "suck it up" and quit whining about my pain.

But then I think, it wasn't always like this. I had other problems that would come and go, but I didn't always have this ever-present pain. Maybe it's like the apostle Paul and the thorn in his flesh that he always had to deal with. I always thought he was referring to his sinful nature and how he had to fight against his sinful instincts all the time. But maybe it was meant literally and he had an actual thorn in his flesh--something painful, burning, squeezing, that just never lets up.

Anyway, I continue to find that Lyrica gives me lots of energy in the morning (possibly because of coffee), while my afternoon and evening doses make me a little drowsy. I'm wondering if I could take a little higher dosage ... discussed upping it with my neuro last visit, but in the end we decided to increase the nortriptyline ... which has not helped.

October 2013 = generic Lyrica! Yay!

[Dawnrnuk72]

Starting lyrica soon!

Hi guys,

I'm on gabapentin currently (1800mg a day) and its just not working anymore. Ive only been on it since the summer too. So my neuro is swapping me to lyrica. Hes had to write to my GP to instruct him how to prescrib it. I'll hopefully be starting it next week.

I've been reading all your posts and I am hopeful it's going to work! My pain is all on my right side. My ear, head, arm, shoulder, chest and leg. My ear pain never goes away. I don't know if it's the trigeminal neuralgia but it is like someone sticking a pick in my ear. I really hope lyrica works as its driving me crazy

This pain started with a relapse and I had steroids. The pain of course went away but as soon as the steroids finished the pain crept back day by day.

I guess I can't expect to be totally pain free but I need some relief!!

[Hawkgirl]

Expect some hassle. Insurance hates Lyrica; it is expensive and if you only have to pay $15, that means they are getting stuck with the remainder. When I had to pay out-of-pocket a couple of times, it was $100 for two days of pills. But if gabapentin isn't working, Lyrica might help. I didn't respond to gabapentin, but Lyrica is helping. Good luck!

[Dawnrnuk72]

Thank you

I hope it helps! I can't wait to start it. A lot of people say that gabapentin didnt help but Lyrica did.

I'm very lucky, I'm in the UK and my prescriptions are free. Free healthcare too. I have no insurance hassles, which is a major blessing. I feel so bad for you all who have insurance problems and bills. MS is an expensive disease!!

Will keep you posted Hawkgirl xx

[soshime]

So is the area numb afterwards, or do you still have feeling?

i still have feeling, but no pain. which is a w e s o m e !

[soshime]

Hawkgirl, I do so enjoy hearing from you. I have been on Lyrica for about 2 years now. I stopped and tried some generic brands, due to insurance and cost issues. I not only had issues with the nerve pain but also noticed a major increase in migraines.

maybe try topamax for your migraines; just keep a healthy appetite as one of the common SFXs of topamax is a little bit of weight loss. it worked wonders for mine. but talk to your doc about it first, as it's an off-label use, i think. or only recently approved for use in migraines.
- soshime

[Hawkgirl]

Lyrica is letting me down! I'm having the same horrible hug pain, and of course it feels worse having had a lesser pain for a while now. But yesterday I had a terrible attack, and if I didn't know it was hug, I'd have gone to the ER and told them I was having a heart attack.

Lyrica, why? I loved you and pampered you and praised you, and now you've abandoned me.

Calling the neuro Monday to find out if there are any other options for me. Pain is unbearable.

[sneakypuss]

maybe try topamax for your migraines; just keep a healthy appetite as one of the common SFXs of topamax is a little bit of weight loss. it worked wonders for mine. but talk to your doc about it first, as it's an off-label use, i think. or only recently approved for use in migraines.
- soshime

Topamax is used not only to treat migraines, but neuropathic pain as well. Ive used for neuropathic pain with some success, after Epilim stopped working for me.

[Hawkgirl]

Ho-dee-ho. I am almost completely off the Lyrica now. When it was certain that it wasn't helping me anymore, I decided I needed to find out if it's helping any at all. So I started tapering down. I'm almost off. And I don't think it was helping any at all.

Yet another medication that worked for a while. Score another one for MS hug.

Interestingly, I think Lyrica had been boosting my mood quite a bit. As I've tapered down, I've been feeling much more depressed. I miss feeling happy.

[Hawkgirl]

OK, new update. Lyrica was helping quite a lot. I was completely off for a few days, and the pain was unbearable. So I'm back on. Lyrica isn't masking 100% of the pain, but it is helping A LOT. I didn't know how much until I went off.

Other observations: Lyrica makes me feel more optimistic and happy. I don't know if that's because my pain is less, making me able to think about things other than: "Oh God, please let this pain stop." Also Lyrica is the cause of my blurred vision. Lyrica stimulates my appetite.

So even though Lyrica is expensive for me, I am going to stay with it, unless my neuro wants me to do something different.

[dmcmtk]

Hawkgirl, I've been keeping an eye on this thread, did you ever look into or try taking alpha lipoic acid in conjunction with lyrica? I've posted this before, and I repeat it only on the hopefull chance that it may help. My heart goes out to you. Constant pain...yes I know. Godspeed, Dave