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Living With Facial Pain

Resistant to all meds

#1

Hi all, My story was posted under “AO for past 12 years” in New Member introductions. Here is a summary: bad tooth pain back around 2005, so had root canal (pain got worse), had perfectly healthy tooth pulled (pain got worse and spread to other teeth); years went by and still had pain; diagnosed self with AO; saw neurologist (tried anticonvulsants with no luck, so requested imipramine and after a few months was pain free for 6 years); last year, imipramine stopped working, so tried nortriptyline, then desipramine, then desipramine with clonzazepam (had a few weeks of no pain, but then it came back); also tried nerve block which made pain worse. Also tried CBD oil and TENS, but no help. Now I am on duloxetine and clonazepam and have pain every day. Has anyone had success with a medication and then it stopped working and NO OTHER drug worked??? I was reading about treatment resistant depression (I don’t have depression, but antidepressants are used for AO, so thought it might be applicable) and there have been some positive results with addition of L-methylfolate which could help the efficacy of antidepressants. Anyone familiar with that? thanks!

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#2

I have GN, I never found a med that worked that good for so long ! My meds always stopped with in 6 months . Anyways I don’t know your sitch but something has been a miracle for me is hard working out. I take a class 3 days a week and run on a 4th day . For whatever reason it works , I stopped my meds back in November and have been almost pain free as long as I work out!
It’s a miracle, I wish someone else would try it lol . It took 2 weeks before the pain was gone . And if I slack off it comes right back. But the side effects of feeling amazing and looking amazing are Way Way better than how I felt on the meds . I eventually became really depressed and was thinking about killing myself all the time . Be carfull I didn’t realize the way I was feeling and thinking wasn’t normal . Until one day I woke up.

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#3

Please excuse my ignorance, but what is “GN”? That is great that working out is working for you!!! I have worked out for many years and it never helped me with the pain unfortunately. I have worked out with weights and did a lot of cardio, but no help at all. I WISH that working out would get rid of my pain because working out is much better than trying out all these horrible meds! I understand the depression. I am quite depressed now and I almost feel that the fact that I was pain free for 6 years made having pain now much worse (before I was on meds that made me pain free, I was frustrated about the pain, but not depressed…I guess I still was hopeful; now not so much).

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#4

how about trying a lidocaine patch?

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#5

Hi azurelle, I don’t know if they make lidocaine patches that you can put on the gums inside your mouth(???) My neurologist prescribed me lidocaine viscous and it doesn’t help at all. In fact, it seems to even make the pain worse. None of the different topicals I was prescribed did anything at all.

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#6

It’s geniculate neuralgia. I wish it would work for you. Sorry

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#7

kr138 – you can’t put lidocaine in your mouth but it is considered an anesthetic so it might help to run it along the branch along your face that’s firing off the gum in question.

I know that I use it when my jaw joint aches or there’s pain deep in my ear from ATN. I put a slice of patch along the nerve branch that feeds those areas and it helps.

Since you can get SalonPas OTC in USA and Canada for not much money, you might even find a single patch pouch for sale, it might be worth trying.

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#8

The lidocaine viscous I was prescribed is specifically for inside the mouth (it is a lidocaine mouth rinse). I will have to try a patch on my cheek. I did have a nerve block down through my cheek and even when totally numbed, I still had the pain. Thanks!

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#9

Hi, I know what your saying about the root canal. For some reason thats the first thing they push off on us. I had that too but not the rooting. My wife is a professor of nursing and told me that is NOT the problem it’s TN. I had an MRI and it’s TN. If not for her I would of had that useless procedure too. I’ve had PSR PNR and MVD but none of them seem to work for a long time. I had the MVD about a year ago an dthe pain is coming back.
Best of luck to you I really hope you can get some relief form this stuff. Hang tough you’ll need it. Love to you.
Wheel 4 lags said it.

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#10

thanks wheels4legs! best of luck to you too!

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#11

Click Me!

Hay Girl., Keep me informed as to what is going on ok? We have to stick together. If I get any good info I will sure share it. Have a good one.

Wheels4legs said that.

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#12

I will. Just an update…called neurologist yesterday because pain was excruciating (seems like it is getting worse) and I asked her how long I should give duloxetine to work for the pain. I have been on it since February 25th (at 30mg a day) and then on 03/17 went up to 30mg 2x day, but I am not seeing any decrease in pain. She told me to start tapering off. I then asked what could we try next and she said she would have to do some research to see what else could be done (not actually sure she will find anything else, so not very hopeful). I am almost considering trying medical marijuana, but I really don’t know if it will help at all (I think I posted before that legal CBD oil from hemp (OTC) did nothing). Pain is excruciating again today, so trying to get through my work day. I will post if I hear back from my neurologist. take care!!!

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#13

Click Me!

Hi, I’m so sorry to hear that you are again hurting. This stuff just doesn’t want to stop. The last time I had a bad hit I had 2 shots of Demerol and a Fentanyl Patch and that only eased it. I’m not sure if Doctors and med people know how really bad this can get. Well best to you hope you get to feeling a little comfort. Wheel4legs said it. LOve ya hang on tight.

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#14

I have ATN from dental work 5 years ago. I have tried Lyrica, Trileptal, And gabapentin. I could not tolerate the side effects. I use compound cream with gabapentin, Ketamine and Ketaprofen for year. Now I am using Doxepin 25 mg. 3 times a day and a new compound cream without ketamine. It is gabapentin 6% and Ketaprofen 10%. However, instead of using on my face, I am applying it directly on the tooth that hurts using a Q-tip or a brush type flosser once a day. I had gotten excellent pain relief.
However, I will have to increase since I alway build a tolerant to anti seizure drugs. Maybe I should not be doing this, but it has worked the best. I like the compound cream I used before. I had very few mild side effects that went away in a few days.

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#15

Hi Linda99, I tried a few different oromucosal compounded creams meant to go directly on my gums, but none helped at all. They contained anticonvulsants/carbamazepine, ketamine, ketoprofen, lidocaine in various combinations and they seemed to make the pain worse. Glad you are being helped with your cream though!

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#16

Hi All,
Just wanted to post an update. A quick review of my situation: have AO and was pain free on imipramine for 6 years and then pain came back and no other tricyclics or SNRI’s worked no matter what dosage. The last med (duloxetine) my neurologist put me on did not work, so now I am completely off all meds and my neurologist gave up (said she would let me know if she hears of anything else we could try, but I am sure I will never hear from her again). Anyway, I decided to try kratom since it worked really well for my sister who has fibromyalgia (yes, I know fibromyalgia is a different type of “monster”, but it is still a chronic pain disorder). After tons of research and talking to some people who have experience with kratom, I ordered a few strains (Red Maeng Da, Red Bali, Green MD, Bentuangie, Green Malay, Red Borneo, and Elephant). I tried Maeng Da first (this one I bought at a local tea house) and although it made me very relaxed, it didn’t seem to do a lot for the pain (low dose of ~1-2 grams). I then tried Bentuangie from a supplier who is a friend of my sisters (trusted) and that seemed to aggravate the pain. Now I am trying Red Bali (~2g) and that one seems to help with the deep pain, but not as much with the burning/pressure-type pain. I will continue to experiment with dosage and strains and see what (if anything) ends up helping. I know the issues and possible downsides to taking kratom, but since my doctor has given up and I am now on my own, I have to at least try. I also wanted to note that opiates do nothing for my pain (tried oxycontin and vicodin once or twice years ago and no help). I also wanted to ask if anyone has tried Kava Kava for Atypical Odontalgia? I may order that too and give it a whirl.

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