Question regarding medicine and

Hi, my doctor added Lyrica and Topimax to my meds. On the next visit she said Lyrica and Topamax replaces Oxcarbamezapine (Trileptal) and Gabapentin (but she only told me Gabapentin at the previous visit). I was actually doing better. Why would she switch me? I’ve noticed some people take These meds combined. So no Gabapentin or Trileptal if you take Lyrica and Topimax? I have ATN and having non stop attack day 6. :frowning: pain management wants to do a nerve block or start with neck epidural? I really like my pain management doc but he has never done on a TN patient. He really wants to help but I can’t risk being worse. When u hurt so bad hard to think straight. Thoughts ? Anyone? Nerve block , should I do it?
Thank you.

I am on Topamax neurontin and was just started on lyrica… I am beginning to think that some of these docs don’t know what they are doing personally… I am thinking about having Botox injections… I so feel your pain!!! Get to feeling better soon!!

UM, can you get a TN doctor? a neuro within 2 hours of your house? Have you seen doctor tab above here?

Ask for Lidocaine face patches or cream if you haven't tried --- just have them call it in -- can help instant.

I would not get a needle in any neck area - period - your neck isn't where they operate on TN!!

Keep posting!

YOUR pain, YOUR body, YOUR medication. Your doctor should not switch or alter your medication without your say-so, ESPECIALLY if you're doing okay with what you have, and certainly NEVER without explaining why. Anything other than medication prescription needs an experienced TN Neuro, and even then, they can only do a procedure if you agree to it. Sorry I can't advise about the nerve block, I have never had it done. My first action would be to increase the dosage of the anti-seizure med. You can always reduce the dosage later when the pain is manageable. Best of luck.

As with any medical condition you need to be your own adovocate!! If you are doing better you need to stick to what is working for you. If you DR does not like that idea go to someone who will listen to you. I don't know anything about the nerve block but agree KC dancer - doesn't even make sense to me. Get second opinion from a Neurologist with experience with TN before you change anything. If they say they can't see you for a month tell them it is an emergency or get a friend to help you make the appointment. Good luck!!

You're right to realize how hard it is to think straight. In the early weeks of my onset of ATN, I

was barreling into procedures as fast as I could. My wife didn't "get it" and we had some problems.

If we had a better relationship at the time, like we do now, I would have made better decisions.

Line up your questions to your provider, and get straight answers. Do not make decisions out

of desperation. For a long time desperation held me together. It's confusing. The doctor that wanted

to do radio frequency treatment on me also had zero experience with TN patients. Among the MOST

dangerous doctors are those that "really want to help" while at the same time fail to reveal an understanding of the

uncertainties and risk involved. This is a lack of respect; angers me as much as anything. When I'm

in their presence, not very often these days, I image a .45 in a shoulder holster. Sets the confidence bar much

higher. Over the top? For sure, but it's my way of accepting responsibility for decisions I make. The downside to

this mind set is stress. The upside is that it leaves more space for emphasizing what I do know will help: sleep,

meditation, exercise, and distraction. I've come to a point of submission. The next worthy medical treatment is going

to be a true medical break through with dramatic and consistent positive outcomes.

Amen to what Maur said! My GP (actually a PA subbing for my GP) prescribed gabapentin for me and told me to increase to 3600 mg/day (spread out) if I needed to. I went up to 2400 for a few days to outpace the pain attacks that came when I was taking the 900 he told me to start with. I'm back down now to 1200. The gabapentin works perfectly for me and you would have to knock me out with a sledge hammer and force-feed me any other medication.

I have taken all four meds in several combinations and have the best results with the two generic older meds gabapentin and trileptal than the two newer name brand drugs. Make sure your doctor knows what works for you. If that is not their main concern, find a new doctor… Just my suggestion as I have had to do that on more than one occasion to find one that would work and listen to me…

I take Cymbalta plus Topamax + Lyrica after developing problems (leukopenia) with Tegretol. This combo works great for me after a severe attack of TN

After having cyber knife procedure over 3 years ago I remain pain free by taking 150mg of oxcarbazepine every other day. Before procedure I found that gabapentin did very little for me! Big side effect of cyber knife is numbness to the face afterwards!

nerve blocksdid nothing for MY atypcial but did help with my bulging disc in neck. my neuro always says if its not broke dont fix it. so you will have to tell THEM what works for you. i started botox a year ago and with my meds it helps a lot! does your pain med dr do botox treatments?

you get to call the shots. this is the one thing i wish i would of known when i first got sick. you are your own best advocate, you are in charge. so do what you think will help you with the least bit of damage to your body.

blessings for pain free days!

Demand the pill combination that works the best for you….even if the Dr. thinks otherwise. It is your health and well being being discussed and also get a referral to a Neurologist who has dealt with TN. As for the neck epidural? It won't be a long term solution.

Good luck Daryla…hang in there!

The very 1st procedure I had done for my TN1 was a Nerve Block & it did not work. But, everyone is different. I have been on a combo of Tegretol &Lyrica until the MVD seems to have worked.

I am on lyrica and topamax. Lyrica is a neuropathic pain medicine. Topamax is used to prevent migraines. I also take Imatrex when I have break through migraines. I know also there have been dosage adjustments for me to help. I am at the max for Lyrica. I also take amitriptyline that helps. i have atypical TN. I am debating what to do next. The medicine helps but I am still in pain every second of every day. Good luck to you.

I take Lyrica twice daily, if I need three I will take it ( some time weather can effect the ATNfor me) also this TIP I put Vitam E oil on face six times a day and receive two shots B 12 shots

I too am surviving with Lyrica that I take for my MS anyway + Tegratol that I instinctively added; I used to take the Teg for my MS before I got the Lyrica. Lately my pain is 24/7, usually a dull pain and feeling of swelling in my rt lower jaw and stretching to and into my ear. The electrial, laser shocks only attack a few times a day (5-10) when I eat/drink something acidic, very hot or very cold. So what else is new?

Wishes for pain-free moments,


My neuro does botox for my neck and flare ups of ON but does not know how to do ATN or TN. Where are some of you going to get botox for ATN?

I have been getting nerve blocks for my neck and rhizotomy too but it did not affect my ATN. My pain doc is not treating my ATN other than prescribing some narcotic, percocet has been helpful. Over the past year my neck pain has improved, I am fused at 3 levels and now at 58 have arthritic changes and more scarring. PT helped my neck and ON, some hands on to release some of the muscle spasms at their trigger points stopped the ON but nothing helped the ATN. My pain doc thought treating the neck would help the ATN but it did not affect it.

My neuro is prescribing a combination of gabapentin, baclofen and amitryptiline for the ATN. I am only getting some partial relief. I progressed from ATN to atypical GN and the meds are helping the GN. I am looking into PNS, peripheral nerve stimulation, to treat my ATN. Surgery was not offered to me from a neurosurgeon at a teaching hospital recommended from this site, he only does true TN, the stabbing, electric shock like pain. All of the other procedures, even RF that my neuro thought I might benefit from I was told by this surgeon he would not do for ATN because he said directly to me, "I don't want to make you worse."

You need a second opinion from another neuro to get back on the meds you know you were benefiting from. I never tolerated tegretol or lyrica. Everyone is different, what works for some does not work for another.

Epidural injections for the neck only treat the nerves at the level that you are getting the injection, spinal nerves, not ATN or even TN. I have had many of these injections for herniated discs and they have not been helpful for me, some do benefit. And from my experience of two years of doing nerve blocks for my neck pain at the levels that are bothering me are C2 to C6 plus rhizotomy 2 times at these levels only my neck pain and spasms were reduced to mild to moderate.

Unless you are having neck pain I would not go through these epidural injections. Watch out for docs that offer only the treatments they do as sometimes they are not being up front and truthful about treating your pain with something that will help it. They sometimes simply do not know how to treat TN. I have yet to find a pain doc that does, however, I am looking into PNS and pain docs do offer this but also neurosurgeons do too.

The only info I have come across about treating the neck was chiropractic treatments that help ATN and TN. I am not a candidate for chiropractic as I am fused and have not researched it very much.

I think you definitely need a second opinion from a new neuro and do not do these epidurals. Sharon

Hi there! The nerve block they did to me was in the face, trying to get to a certain branch of the t-nerves. It didn't help at all then after I found out I have geniculate neuralgia not T neuralgia. I have had an unsuccessful Gamma Knife surgery and now I am trying P-Stim treatments. Kinda like a TENS unit for your brain. If this proves unsuccessful then a combination of meds will be worked out. Currently on oxycontin, Gabapentin, amitriptyline, Cymbalta, flexeril, requip, norco, and the only switching around that was done was at my request and she took me of Tegretol and put me on amitriptyline because of the balance issues I was having. Now I have more breakthrough pain but am not as big of a fall risk. I took topamax for my migraines for a long time but eventually the side effects became too much for me...I was still working.

My neurosurgeon has amazing success with Gamma Knife and T Neuralgia. We assume the procedure didn't work on me because I have geniculate neuralgia,a very rare neuralgia in the nerve behind the T-nerve and much more difficult to get to even when they can see the damage on the nerve with MRI.

I ALWAYS take my daughter with me to appointments because she is so smart and doesn't have FIBRO FOG like me. She stands her ground with my doctor...I am very grateful that she takes me to these appointments. Do you have someone that can accompany you to your appointments? It really helps!

I don't know if I've been of any help but I sure hope you get on the right track and quickly get things straightened out your way. If I can be of any further help please let me know. I would love to!

PeacenLove Always~Laurel aka Shinglesdidit

I completely understand your situation as I am ATN and atypical GN. True GN is the stabbing pain in your ears, they do a decompression for this but it looks scary to me...they even cut the intermediate nerve, decompress 5, 9, and 10, unsure, but some get successful results if all the right nerves are decompressed plus this cutting. There is a video on YouTube of this surgery, google it. I am going to try the PNS, discussed on another page, peripheral nerve stimulation.

And I do sometimes have my daughter come with me to my appointments. In '08 after many failed back surgeries I was being over medicated by a pain doc, my daughter told him I needed to be ti trated down as I was falling asleep and falling all the time. He took her out of the room and told her no, you don't know what your mother has been through, however, he did not get his at 58, I am living alone, widowed, but my cognitive functions are restored! Plus in Florida they have really cracked down on narcotics. I am back on some, but not very much, a low dose of percocet. Do bring someone with you if you are not able to drive or are a little loopy even on some of these meds like tegretol. Non-narcotic meds combined can sometimes cause a loss of your cognitive functions. As I get older I do need my daughter to join me at some visits. You have made a very good suggestion. Thanks, Sharon

My Geniculate Neuralgia is from scarring from having a bad case of the shingles. Post Herpetic Neuralgia is what it's called and my neurosurgeon has only had one other Geniculate nerve patient and it wasn't from PHN. She has turned me down for MVD but will consider trying Gamma Knife again after my year anniversary in April. The only thing different they would do this time is up the radiation but are very leary about all that.

I haven't driven since 2005 because of all the side effects from my meds. My GN is constant ice pick jabs to the ear and I've had this since the shingles in 2011. My case of shingles actually started with the intense earache before I got a rash and the rash was on my leg, no where near my ear.

Good luck with everything!