I have had what was diagnosed as neuropathic pain along the trigeminal nerve in October. I have had the pain since July and it has been in my cheeks, jaw as a dull achy and muscle spasm pain. Just this past Saturday I started having burning tongue after starting flexeril on Thursday. It’s not as severe as what I’ve read for burning mouth syndrome but it gets pretty bad at night when I’m trying to sleep. Has anyone had anything similar on top of atypical facial pain? Has anything been successful in alleviating it? I go to my neuro soon but I’m really concerned I might have to deal with this on top of my existing pain.
I have heard that clonazepam works for burning mouth.I would ask to try it at night.It should help to put you to sleep.It worked for my burning tooth for a time until I had more surgery and then I had some bizarre side effects and I am scared to try it again.
But for about 6 weeks I was fine.
What surgery did you have? Did it alleviate the pain?
The surgery I had was to remove a boney island that was coming up through the gum on the painful side.It stopped the pain in that part of the gum.But did nothing for the rest of the pain.Still trying to find someone,something to help.
oops, double posted!
I registered to reply as my situation is similar to yours.
I’ve had trigeminal neuropathy on the left side of mouth, probably from dental trauma, but it was only diagnosed at the beginning of November. It started with toothache-type pain, that moved around the upper left quadrant of my mouth, then progressed to burning, tightness and numbness on the left side. An MRI showed nothing abnormal. In October it got bad and I started using Percocet (other painkillers did nothing, or made it worse). Then I began to get “burning strips” primarily on the left side of the tongue, but all over my mouth. This was also very bad at night and kept me up most of the night, which made the days worse of course.
I started using a clonazepam topical solution that helped a lot–my recipe is .5mg clonazepam, mixed with 1/2 tsp water and 1/2 tsp heavy cream, swabbed with a Q-tip over the worst areas. I use oral Valium when things get unbearable, but that is not ideal on a regular basis. I also use a mouth guards at night, as well as during the day, and gum and peppermint oil toothpicks during the day to keep me sane. My diet is very good (Primal), and I also take cod liver oil, omega-3 oil, and a 100% RDA vitamin.
But recently I decided to quite ALL the painkillers, all drugs, especially Percocet (easier said than done!). After a few days, I have NO burning strips at night, and the days are improving. There is just a bit on the left side of the tongue that is tolerable. This is so much better, I can sleep through the night, I haven’t even used the clonazepam topical for the last 2 days. I’m feeling optimistic for the first time in months.
Hopefully something here will be helpful for you. It’s so hard to find good solutions for these issues. (also Sarah)
I have been living with atypical trigeminal neurolgia of the mental foramen (lower jaw), and my mouth (lower gums burn), my tongue gets sore too. In addition I my lips; upper and lower feel as if they have been burned. Blessing to you. I am at wits end after living with this since my early 50’s and now I am 65. Barbiedollstar
Yes, I have the burning mouth pain along with other atypical symptoms. Nortriptyline has helped immensely, along with stopping eating/brushing with anything peppermint, which has proven to put me in a lot of pain.
Imom, I read your post and literally stopped mid chew, took the peppermint gum out of my mouth. I’m trying to go without any peppermint for a while. It seemed to “distract” the nerves, and make things more comfortable, but if it could be irritating the nerves, I don’t want to risk that. Back to fruity gum.
I had a “Duh” moment in bed the other morning. I realized that my mouth was partly open, and the air rushing across my pallete was causing it to get irritated and burn. The last few days I have been taping my mouth. Sounds icky, but I really don’t mind at all, and I’m not getting any burning that way. I’m using a small piece of micropore tape. Of course, the other side of my mouth doesn’t even register anything!
I have been looking for answers for my burning tongue for at least an hour this morning. My Dr. told me it was from the tn and also from fibromyalgia. The combination from sore tongue, sore bumps, and the burning is why she thinks it is both. I also get the scratchy irritation in my throat and my voice becomes rough. I have had tn for years, but this pain in the mouth has been for about 8 months now. it goes away for a few days to a couple of weeks but it always comes back. Between the facial pain, sleeplessness, and deep muscle pain in thighs, I feel like screaming sometimes. But this too will pass and I just pray for grace to bear it. My cousin is fighting for his life right now. So I feel like my complaints are very minimal compared to what he and the family is going through.
I haven’t been here for awhile as I have been in too much pain and now I have an antibody in blood that is causing my thyroid to attack myself. I had three incidents of lip swelling (angioedema) so I can’t take high blood pressure med or ibuprofin. Norriptyline did nothing to help me. Now my BP is elevated and it is so difficult to eat or talk. I am losing weight and the pain is getting much worse because I am so stressed out. My son took my cat to San Diego and he is my only relative. I don’t know how much more of this I can take. I can’t even drive to get food, but I am not hungry at all. I stay in bed most of the time because I keep falling too. I am crying constantly and when I think of other people having it worse than me, I cry harder. I don’t know where to turn to. Bless you for your kindness and I never use peppermint or menthol as it does hurt. But now the lip burning is another situation that will not let up. I use Vaseline but it comes right off. More blessings, barbiedollstar
How is everyone doing with this burning tongue situation? Has anyone found relief?
barbiedollstars, I was sorry to read about what you were experiencing. I hope you have found some relief!
That was interesting to read, what must have been my first post here. Yes, at one time I did have a terrible problem with “burning strips” and sometimes allover burning. I’m glad to say that those days are gone and I can’t even recall the last time I had problems with burning (though I’m having a bad achey tightness day today). I think that is because I have quit with the opiates, and very rarely take a benzo. I’ve also pretty much quit drinking. Plain old freezing cold water always gave me a lot of relief and still does.
Hi Coreysarah. I just joined the forum a couple of days ago. The numb, sore burning tongue I can relate to. I keep shining a flashlight in my mouth to see if my gums are inflamed or red (they aren’t). I said to my husband it feels like I have hotsauce on my gums on top of the achy pain in the whole side of my face. I started flexeril a couple of weeks ago too. But reading through other responses it seems like a pretty common issue. Thankfully I can get a decent sleep most nights.
Sorry this is late but I have been so ill. I found out I now have Hashimoto’s thyroiditis, Sjogren’s disease in which I cannot salivate and must take Pilocarpine. It also dries the eyes out so I can’t cry with tears. I also have burning mouth syndrome and the atypical trigeminal neuralgia was changed to facial neuropathy. The majority of people with BMS are post menopausal women as estrogen levels decrease (I’m on HRT), it has something to do with the salivary gland production. Also, the more one takes Flexeril, the less effective it becomes. Xerostomia is dry mouth and I copied and pasted info to help you:
Dry mouth - Symptoms and causes - Mayo Clinic
Feb 1, 2018 - Dry mouth is often due to the side effect of certain medications or aging issues or as a result of radiation therapy for cancer. Less often, dry mouth may be caused by a condition that directly affects the salivary glands.
Blessings, and I hope this helps…barbiedollstars