Trigeminal Neuropathic Pain Diagnosis

Hi Everyone-

I have posted on here before sharing that my facial pain began 2 weeks after receiving a dermal filler injection in my right cheek and has continued in a pattern of burning, aching pain for 4 months now. I had one terrible neuro appointment who said it was all in my head (I fired him immediately) and now have been able to see one who has been truly understanding and helpful. He diagnosed me with trigeminal neuropathy secondary to filler injection. He prescribed 600 mg of gabapentin daily which i just started taking. When should I start seeing improvement in pain and also has anyone had a diagnosis of trigeminal neuropathy that manifests mainly in burning and numb patches sensations that come and go and spread out over entire cheek? Doctor thinks this will resolve over time and doesn’t think it is permanent nerve damage (he did the testing protocol in his office) but couldn’t really give me a specific timeline. I do have an MRI next week to cover all bases but this unlikely to show anything according to him. I am terrified i am stuck with this pain.

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Hi Anka
I do have trigeminal pain which is like a constant burning in my cheek around my eye, my eye, pain in my teeth and jaw. It was attributed to Eagle’s syndrome and I had surgery to remove the elongated styloid process from my temporal bone. I still have the same pain and am on 600 mg Gabapentin. They said it can take 6-9 months for the nerves to heal if in fact that was the root cause. I am seeing a neurosurgeon this coming week to look further as I still have this pain and the Gabapentin just slightly takes the severe pain edge off, but not much else… I originally had an MRI ordered by a neurologist, but the neurosurgeon said I should have had a Fiesta MRI so taht he can see much more detail.
Hopefully your pain does subside over time!

Dear Anka,

I am so very sorry to hear of your pain! Thank you for sharing. I had no idea that filler injections were so dangerous!

My diagnosis is trigeminal neuralgia, which is of course different from trigeminal neuropathy. For me, the gabapentin caused too many side effects; I hope that it will be a good fit for you.

I’ve been on this board for a while, and have mentioned NUCCA several times, so please forgive me if you already saw my posts about it. I am enthusiastic about NUCCA, which is a very gentle, no-cracking chiropractic specialty. There are very few trained NUCCA specialists in the US, but mine helped me so much that I moved to be close enough to his practice so that I could be seen weekly. It’s been life-changing! No Rx, no pain, and no surgery, thanks to NUCCA.

For more information, please see:

I wish you all the best!

Have a Tesla 3 MRI with contrast. The only mri that showed my 5th cranial nerve was beginning to atrophy from compression. I always felt my neurologist had doubts about my pain until he read that report. I think he was overly impressed that Peter Janetta had done my vascular decompression surgery which caused damage in the V1 nerve whereas before I only had it in the 2nd and 3rd.

I empathize with your pain. Ask your doctor what he/ she thinks about a short treatment of steroids, usually a week in duration. Maybe a short blast of this anti inflammatory will help subside the pain since the dermal filler was recent. I don’t know your medical history but it’s worth asking your doctor.

What the heck is wrong with these doctors that do not believe us??? It’s downright cruel.

Best to you

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Dear Sleepless, I have only read great reports about Dr. Janetta. I know he is gone now but I have been considering surgery with one of his prior students. I’m sorry, but did your surgery make things forever worse for you?

I actually think his assistant Dr Lovely did my surgery because he came out to talk with my family and even drew a picture of procedure, but it was suppose to be Janetta. That was in 1994 and yes it worsened my pain to the point I was too afraid to have another procedure. Also, Janetta didn’t want to hear about my problems and try to resolve them. I am 72 with some serious health issues but none as bad as this pain.

Hi, I was diagnosed with Atypical Neuropathy some 18 years ago and my symptoms are similar to yours, ie numbness/tingling over right side of my face and toothache type pain all my waking hours made worse by cool air or an open window. I also now suffer from burning mouth syndrome. This began suddenly and for no apparent reason. My neurologist prescribed Gabapentin but this made me too drowsy, so for the last ten years at least I have been taking Pregabalin 600mgs a day. I do hope you can get some relief and that your pain doesn’t last too long.

Anka, I’m sorry this happened. I’ve not had the dermal filler injection. I have had facial pain (trigeminal neuralgia) off and on since 1998, 23 years. First of all, you were right to fire that neuro for what he told you. 2nd, I’ve not heard the term trigeminal “neuropathy” but ( I think ) neuropathy means nerve damage. The gabapentin works good for some people. If for some reason it doesn’t subside in a week or two there are a host of other drugs neuros can prescribe. The number 1 drug is Tegretol. Its really important that you have a neurologist and/or neurosurgeon that has had ample experience with trigeminal neuralgia and/or trigeminal neuropathy. I can’t stress that enough ! They understand way more than those with little experience. Tegretol worked great for me. Much of the time though, the dosage has to be increased over time, and it was that way with me. Well, it does often with trigeminal neuralgia…I don’t know about with trigeminal neuropathy. Eventually, I chose to do a Gamma Knife treatment in hopes of getting off the Tegretol. It worked super great for 9 years, but doesn’t always work for some. But it (TN) came back after 9 years of being totally pain free. So, my neurosurgeon said I had to get treated again, this time with the Cyber Knife ( a newer version ). That was 11 years ago. Both are non-cutting, non-surgical treatments lasting about 50 mins or so. You go home afterwards. No surgery, no hospital recovery. My neurologist had me on 4 different kinds of medicine afterwards – 4/day of Tegritol,1 Elavil, 3/day of Lyrica and one other drug because I was still having pain and real bad numbness. They said I would have a lot of numbness after the treatment, but anything was better than the 10 PLUS PAIN. The Lyrica I had to ask about myself – the neuro didn’t suggest it. I was in such a shape pain-wise and emotional-wise I drove from Alabama to Erie, Pa to talk to a doctor specializing in MVD surgery. I thought maybe that would help. Locally, I was told no, not an option. I chose this dr. in Erie because of his training under the Janetta environment in Pa. That dr. also told me No to the MVD because I had been previously treated with the Gamma Knife. So I returned to Alabama, fired my neurologist and sought another one. She listened to my long story intently. This new neurologist got me off every single drug except for the Lyrica (the one I asked about from the first neuro – how about that?) No more Tegretol, Elavil, or the other drug. Just 2/day of Lyrica. So, I have a very reasonable healthy life now. Some occasional discomforts, yes. It passes and I go on. I do have the tingling, crawling feeling still (like novacaine wearing off after dental work) sometimes moreso than others, but always there to some degree. There’s occasional hits from the TN but nothing, nothing, nothing like before. But those huge lightning strikes like I use to have are gone. I’m sure part of my current issue is neuropathy from the Cyber Knife treatment. The Lyrica makes that manageable and its improved over time. I’m no doctor, but perhaps you could ask your dr about Lyrica. Also, I would look for a neurosurgeon that’s not out on his first rodeo and has been around a while. I don’t know where you are but the ones that have ample experience with this are often in the bigger cities. If the drugs are not making you live life better consider seeking a neurosurgeon like I’ve described above. I found mine in Birmingham, AL (close to me). Am I 100% like I was before this started 23 years ago? No. Am I better than I was before with those 10+ lightning bolt hits in my face??? Yes! It is really a matter of getting a really good neurologist and/or neurosurgeon…… for sure, not all are the same. One that has experience, and lots of it, in this field of neurology is of utmost importance.

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@Atypical_dentist Had a course of steroids 6 weeks after injection (standard procedure after filler complications) and it took the pain away somewhat but it was right back after I finished the course. Steroids have nasty side effects esp for someone like me with high anxiety so not doing that again given minor benefit. Gabapentin has zero side effects for me but also is doing absolutely nothing 5 days in - I think that might be too short of a timeframe to evaluate?

@Jimmy_W thank you for a comprehensive reply. Yes although neuropathy is nerve damage he said mine is more in category of irritation vs full blown severing of a nerve (i had a completely painless injection and symptoms started 2 weeks after most likely when filler started situating itself and then impinging on one of the peripheral nerves of the trigeminal one - most likely infraorbital). He thinks pain will resolve as filler disintegrates or i can dissolve it but that means more needles in my face which is why i am going conservative route first. He said he absolutely would not recommend heavy hitter drug like Tegretol given the localized trauma to the nerve as side effects likely will outweigh the benefits. I know it helps many but since my paid never goes above 4-5 I don’t want to try it. I will see how Gabapentin does and then he said second one to try is Armiprytyline (i know i spelled it wrong). My issue is also that I hyper focus on pain which then brings more pain and round and round we go. I need a stretch of pain free days to relax my mind from thinking about it. So far I get one a week which also is hard to explain.

Glad you received the proper standard of care. Gabapentin would have worked already if it was going to work. Call your md and ask questions I.e. if they can change the dosage or give you another medication. Ask about carbamazepine, it is meant for ten pain among other issues.
The Best to you

I have been using carbamazepine for several years now and it has seen me through some really painful years. My latest doctor added gabapentin and I must admit my pain level has dropped greatly, but the two drugs leave my really tired and listless.