Hello everyone. I’m new here but not new to TN. I’m looking for support and to share tips/ideas to deal with this. I’ve just had ATN come back after 14 years. The first time I got ATN was from an accident in my home where my head got struck hard. After a visit to the ER and stitched up I thought everything was fine. Not so, a few weeks later it started with a pain in my ear. During the next month or so it spread to my throat, jaw and across my face. I went to so many doctors and didn’t get diagnosed for almost a year. Some doctors in one group insinuated that I had marital problems and would smile as I told them I was in pain.
Anyways I was d/x’d with atypical facial pain/glossopharyngeal neuralgia. I had if for 7 years. I had an MVD eventually that did not work, but three years later it went away on it’s own. At the time I believe I was on Keppra and used capsaisin all the time. I now have it on my upper right teeth, mainly one tooth, after dental work. I have the burning, boring type pain.
I went to my GP and asked if he ever treated trigeminal neuralgia. He says that he has patients with it. and seemed knowledgeable when we spoke about it. He prescribed gabapentin 300 twice a day. I also take a small dose of mirtazapine at night for insomnia. I now take only 500 gabapentin since I found that was enough. The pain now is controlled, mostly a 2, sometimes a 3, and sometimes a 1. I don’t like the gaba. It makes me dizzy and once in a while it gives me vertigo.
Anyone have feedback on what meds work and don’t make you dizzy? Thanks. Lori
HI Jazmin, welcome to Living with Facial Pain. I’m sorry you are afflicted with this again! I don’t have much input on systemic drugs that might help, but I would encourage you to investigate topical treatments. For instance, if gabapentin has helped, you could look into a topical gabapentin that you apply to the area. Perhaps a topical combined with a smaller oral dose would work better for you?
I’m really fascinated with remission, and the idea that it might represent actual healing of the nerve. If only we had some idea of why people go into remission! Do you have any feelings about that? Do you think remission was related to the medication you were on?
Hi ziggy. I’ve thought about this a lot. Sometimes I think it was just time to heal the nerve. Other times I felt it was the Keppra and the capsaisin. I really used a lot of capsaisin back then so I would suggest to always use it. I would like to try a topical but my GP won’t prescribe it. I wonder if I could make my own gabapentin topical?
Hi Jazmin, so sorry you have this stuff but welcome to our world. I used Gaba at600 3 time day and yes it made me dizzy so I started using MONTELUKAST for the dizzy. Good wishes and don’t give up.
Stupid doctors, arrggh, I think you could make your own topical. I was given 100 mg. capsules for oral dosing, and I also tried mixing them into a topical. Unfortunately for me, either way seemed to make the pain worse rather than better (it was obviously doing something!). Topical amitryptiline and carbamazepine were also a bust for me.
I mix my own topical with OTC 1% capsaicin, 4% lidocaine, and 5 mg. of valium (in a teaspoonful). It seems to work okay, but it is a pain to keep applying it all day. I wish I knew if it was helping to heal the nerve, or not.
Currently I’m back to using a bite guard and peppermint chewing gum all day.
Hey, Jazmin. If you find that gaba works well for you, but you don’t like the side effects, you might try the extended release version which is Gralise. It worked well for me while I was on it and I didn’t experience side effects like I did on the regular gaba.
mentos mints are pretty good.
I do not know how you do it.You are my heroine
Brave soul ,you.
I thought of you when my pain got brutal at 7 PM and my night meds are at 8PM.
I thought "what would Ziggy do?"
And I have eaten so many mints - but YAY med time
G’night
I don’t feel like a heroine! Just another soldier here!
I was channeling you also last night, thinking of the topical peppermint etc… I took out a tube of “extreme cryo gel” with capsicum and rubbed it above my upper lip. It burned like crazy at first, but eventually my mouth settled down and did quite well all night (without a bite guard!).
Thinking of trying to find Tiger Balm–is that still made?
Hi Ziggy
Tiger Balm is still made.Did not work quite as well as I hoped-but the
peppermint essential oil has made up for that.
Hoping it works for you.
Not sure how long I can do it for before it burns the skin or
something,but for now-it is my breakthrough pain med.(I am not getting a
skin reaction so I am assuming things are good for now)
It would be nice if there was a long lasting minty thing for the mouth.
Hi!! I am sorry you are having all of this pain. Gabapentin and all other antiepileptics cause dizziness to one extent or another. If you just started on it, it may take a few weeks, but some of the dizziness will go away, not all though. Using essential oils such as peppermint, lavender, copaiba, etc mixed with a good oil base such as coconut oil can help relieve the pain.
I am somewhat puzzled, though. You say you have ATN/TN type 2 and that it went into remission. I have not known of a case of remission for it. This sounds more like classical TN to me. Either way, I hope that you continue to have good pain control. I might also suggest joining some Facebook support groups in addition to this one.
I did have ATN2 and it went into remission. It took 7 years to do so though. I did not have stabbing pains. I had the constant burning type really badly. Ear, throat, jaw, etc. I got it from trauma to the head. Now I just have it in my teeth, one quadrant. Not nearly as bad as last time. Thanks for the tip about essential oils. I did not realize those oils would help the pain. Maybe I’ll experiment and smash up a bit of gabapentin and put it in it.
I was taking gaba also and yes it made me dizzy , no fun . Now I’m taking carbamazapine , i only took half the recommended dose for about 40 days and it worked So Well!! I’ve been pain free for most of the 40days . But now it’s coming back soon taking 100 my am and 100 pm. This med is better I think than most I’ve tried . It doesnt make me dizzy or weird . Maybe it will work for you too
If I remember correctly from last time I became allergic to carbamazapine and tryleptal. I broke out it rashes after a while. I think I’m getting more used to the gaba and having less dizziness.
I have been thinking about future dental visits. I’m very nervous about that. I have not had a cleaning or checkup since this started. I also would use a new dentist/hygenist. What does everyone do about going to the dentist and getting cleanings? I have what I can best describe at atypical odontalgia in one tooth on my right side. Same side as last time. Thinking back I don’t think I ever went to a dentist during the seven years I had TN previously.
First thing I suggest is switching to 100mg gabapentin and getting enough pills to equal the dose you’re on now, then you can start playing with the dose to find the lowest amount that works for you. I, personally, am holding steady at 300mg — 200mg at night, 100mg. It hasn’t stopped everything completely but it’s under control and I can go days without pain. I also use strips of lidocaine patch along the nerve branch when it flares, I can’t say enough good things about it!
Yes azurelle I have 100 mg pills. I take 500, 200 in AM and 300 in afternoon. At the beginning doc told me to take at night. After a month or so of doing that (I was sleeping well from the gaba) I started to get insomnia. That’s why I take them during the day.
A week ago I missed my afternoon dose. I guess I was feeling good ATN wise and by the time I realized it, it was the evening. I decided to skip the dose. It was a bad move. Pain came back the next day and it’s been a week to try and get it back to where it was. It’s more achy now. Previously it was at a 1, 2, or 3. Could also be the weather front that’s come in.
I don’t want to go up if I don’t need to. I’ll give it a couple more weeks. Although the idea of completely nuking the nerve with meds sounds good, I don’t like the s/e’s. On the other hand, maybe the nerve needs more meds to go into submission/remission. Not sure what the right answer is.
Oh yeah, I learned the hard way about skipping a dose of gabapentin several months ago. The exact same thing happened to me in basically the same way and it took about a week to settle back down. It certainly proves the medication works! May I suggest trying a lidcaine patch as well? (As I write this I have a strip of patch on my jaw bone because I was getting that funny achey-almost-burning feeling). For me, there’s something about it that really helps stop the flares. It may still ache but the patch seems to stop the fire.
My pain is inside the mouth mostly on one tooth and surrounding gums/teeth. Would the lido patch work if I used in on my face outside, when the pain is inside? thank you azurelle.
I would say it won’t hurt to try. I use it to calm the nerve branch and nerves are definitely inside! And since it’s not a controlled med really it’s no harm/no foul in my opinion. Really you never know what’s going to work for you so I day try everything non invasive once.
Jasmin, I also have pain around one tooth and the surrounding gums. The pain used to move around all over the upper quadrant, but it has settled in one area over the last few months.
Currently I use a mix of lidocaine gel (4% OTC pain gel marketed for arthritis) and a capsaicin lotion (Capzasin). I put this on a pick (green and white GUM brand rubber tooth picks) and put it in between the teeth. This is very effective for a short while. In the past I also used Q-tips on the gums. The OTC tooth pain gels with benzocaine also work fairly well, but I like lidocaine better.
I have had a lot of diagnostic work lately, and I am VERY hopeful that I will have a final answer after the dental appointment tomorrow. It does appear to be primarily a sneaky dental problem. Of course I will post on the forum if it is the case!
Yes ziggy please let us know what you find out from your appointment.
I went out and got the salonpas and peppermint oil. cut it into strips and put in along horizontally like a half mustache. I figured it would cover the nerve that runs thru the upper quadrant of my teeth. It helped. I also used the capsaisin rubbed on the gums along with peppermint oil. That helped too to calm the nerve.
It was a weather front moving in and that must have disturbed the nerve more. It has been a over a week since I missed my 300 mg dose of gaba (my total dose is 500, so that’s a big miss). I want to see what happens next time a weather front moves in to see if it’s definitely a trigger. Btw, I don’t like the s/e of gabapentin. It makes me slower and sleepier of course, but I get some depression from it and that’s what I really don’t like. It’s calmer today on this nice sunny day.
