I read one of your former entries in which you mentioned using carbamazepine, I think 200 mg. once daily. I was wondering if it provided Pain relief for your Burning Mouth? Are you still using it, same dose? Or anyone else who has had tried it for Burning Mouth Syndrome. I will have BMS for 8 years in a few months. Currently, taking gabapentin 100 mg once a day (higher doses blew out my white blood cell count) and Diazepam every 12 hours. I tried Klonopin swish & spit initially, then was switched to swallowing Klonopin but due to side effects I had to discontinue it. When I was 13-14 I developed trigeminal neuralgia and was prescribed Dilantin by Neurologist. After several years the trigeminal neuralgia went away. What a gift from God. Then many decades later, 8 years ago I developed this Primary BMS which had sudden onset and it has been with me 24/7 ever since. My diet is nothing but 1 coffee in morning and ICE Water remainder of day. I steam fresh veggies and eat fresh fruit, plain yogurt, avoid tomatoes for dinner. I make healthy salads but without any dressing as they cause pain - I spritz them with olive oil instead. I sleep 3-4 hours a night due to pain. I live in a state in USA where dentists and doctors refuse to write for any medication that is 'controlled'. If Tylenol or Advil doesn't fix your pain, you're out of luck, no need to return to their office. Too many days I am feeling I cannot or do not wish to keep on going in this pain. Neither do I feel friends or family understand. I guess because I look normal, can walk, drive, pay bills, and talk, people are incapable of understanding how painful this is and how is destroys your quality of life. I digress. Anyone with positive experience long term with carbamazepine (Tegretol) for BMS? Thanks so much... K2Z
Has carbamazepine (Tegretol) helped people's pain from Burning Mouth Syndrome? If yes, please share.
Question posted by K2Z on 4 Dec 2021
Last updated on 23 June 2022
4 Answers
I developed BMS in September 2018. I am still suffering daily from this pain. I went to multiple doctors, dentists, neurologists, etc. to get answers. At first they prescribed gabapentin, but I had a very difficult time taking it and would get extremely emotional on it. At one point the neurologist added Tegretol (carbamezepine) to my regimen. When they added that in, I immediately noticed a difference to the pain I was experiencing. After a few months, I requested to be taken off the gabapentin due to the side effects. They then increased my Tegretol dose to 200 mg pills 4x daily. Once in the morning, one in the afternoon, and two before bedtime. This and the Amitriptyline 20 mg they put me on cut way back on the pain, headaches, and sensitivity to light and sound I had. The pain is not gone, just muted enough that I can function. I find that talking a lot during the day aggravates the pain. Several days off in a row from work helps to alleviate the discomfort.
That and Wendy's Frosties which are great when it gets bad at night. Chewing bubble gum is helpful and I never go anywhere without iced water. RTIC has reasonably priced insulated cups. Black tea is something I love, but it takes away the effectiveness of Tegretol. I'm sad that doctors in your state are not responding to your issue. Perhaps you need to ask them to review the medical journals online and talk to other neurologists at conferences they attend. They are obviously ignorant about this condition. Officially, I've been diagnosed with Atypical Facial Pain. I hope you and others with this condition find relief. I keep hoping I will someday too.
Thanks so much for sharing your experience with Tegretol (and gabapentin). I developed BMS April 26, 2014. I've been curious about Tegretol for the BMS pain. Some suggest trying Trileptal. My only concern is my white blood cell count dropping below normal range with this class of medications. Even with gabapentin if I take more than 200 mg (not 2,000 mg), my WBC drops below normal which is why I'm taking this silly low dose. I know many who take 600-2,000 mg gabapentin daily without any issues. I am so glad you have a Neurologist that will treat you for BMS. I guess south FL is not the place to live if you have BMS. I've been to multiple neurologists & dentists here and both refuse to treat, stating it isn't a neurologic problem & Dentists claim it is a neurologic problem. No one wants to be bothered with it since it isn't an easy fix (as you know). I think you are lucky to at least have a doctor who is willing to treat the BMS.
You must live in a large city and/or a state that is NOT FLA, LOL. I have family members who have taken Amitriptyline for other things. I've wondered often if that might be an option for reducing the pain. Like you I find 'Talking' a lot seems to aggravate the BMS but people who don't have this, do not understand. I turn my phone Off from 7pm to 8 am because my pain is at its worst by evening and talking to people only makes it worse. But you are the first person I've come across to mention this. I chew gum some and 24/7 keep a tall, insulated cup of ICE cubes and cold water to sip on. I never leave home without it (and I don't mean American Express, lol).
Yeah, the docs and dentists here are a total waste of time and money for BMS. Even going down to Miami, Ft. Lauderdale, West Palm, no one will take me on. That is why I had to travel to LSU to get a diagnosis from Oral Facial Pain Specialist at Dental School there and some help-though he cannot prescribe for me since not in FL. For what it's worth, I have even TAKEN to Neurologists articles published on BMS in Medical Journals and they claim its never been mentioned at any of their Conferences or Meetings, hence not a neurologic problem. This is not the state to live in with BMS. I have stopped trying to find anyone, dentist or neurologist, as it goes nowhere and expensive for nothing. Maybe one day, someone will let me try Tegretol or Elavil. I've just kind of given up to be honest. But I do want to tell you how much I appreciate your response. I just got notified of it! I had Covid this Christmas and early January 2022 - was pretty sick and still battling bad fatigue. Today I checked email and there was a notice to me you had posted. So please accept my apologies for this being 5 months late. I'm embarrassed. Thank you so much for all the good information on the meds you take. I really appreciate it!! You've helped me. Take Care.
I just recently responded to your post when I was searching again regarding BMS, so you weren't late in responding. While on Tegretol, I have not had any issues with my WBC count. They check my levels periodically. Even the Mayo clinic understands what this is. I didn't go there due to insurance, but I did see a U of M neurologist. Almost every dentist and doctor I went to in MI had an idea of what I had and did research online before even meeting with me. I carry around the ice water with me every where I go too. Talking does aggravate it and my husband was the first to notice. When I had meetings all day, I complained more at night after work, when it hurts the worst and would semi-slur my words. I would say the pain most noticeably shows up between 11 AM and 2 PM for me and then gets worse as the day progresses. I do find that short naps help with the headache pain. My brain basically turns me off to get some respite.
To have this show up one day out of the blue was devastating, as it changed my life. On the Tegretol, I really feel like I can live life. I still have some bouts of self pity and frustration, but then I think of those that have it worse off than I do and talk myself back into being positive. I live in hope that this will one day resolve. Right now at 8:25 PM, my teeth ache and my tongue burns, so I'm off to play a game to take my mind off of it.
My purrogative. Someone else asked but not answered. What is your dosage of carbamazepin? I am visiting the PCP tomorrow and hoped to ask her.
Hi Retired Guy, I take 200 mg. of Carbamazepine about 3 x a day
K2Z, Yes, I use carbamazepine, using it 3 times a day as needed. It is the only pill that works for me. My neurologist prescribed it and it's a godsend.
Thanks Mypurrogative so much! If you don't mind me asking, what dose your pill is it? And to be clear, you only take it if you 'need' it? You are not taking it on a daily, regular basis? Only asking so I can search for someone who would allow be to try exactly what you are taking. I am highly sensitive to medications. Currently only take 1 Gabapentin that is 100 mg. per 24 hours and then diazepam tablet every 12 hours. That's it. As you know well, the pain and even depression of constant pain for years is demoralizing. I'm not the happy, energetic, person I was 8 years ago since bms. The 24 hr pain and drs blowing me off, I am alone in trying to cope. I realize there is NO cure for bms, and there are several dozen possible causes. When I found your post your medication gave me hope. Happy you are getting relief or some relief. Dose of pill if you don't mind sharing. Thank you very much. K2Z
K2Z, hi, I am happy to help you find relief. I take 200 mg of carbamazepine about 3 times a day, it depends on how severe my burning mouth gets. I, too was using Gabapentin, it didn't do anything for me, just make me feel whacky. I am so happy with Carbamazepine, I have searched for doctors all over the country, and in Aug. of 2021, I had a mini-stroke. I didn't know I had one but people were telling me my left leg was dragging a little. I saw a neurologist and mentioned burning mouth to him and he knew just what to give me. He was a Godsend!! I tried Carbamazepine taking one, 200 mg pill for 7 days and it relieved the burning for a few weeks, then I started taking 2, and now after months I take 3 pills, every day, some days only 2. I wish you the best in getting relief from this nightmare. This has caused me so much anxiety. Best of luck to you.
I have been in this nightmare for 8 years, 7 months and have been thru hell, just like you. When I moved, I found a new Dr who put me on 200mg carbamazepine 3 times a day, Nucynta 100mg 4 times a day, Gabapentin 300 mg 3 times a day, clonazepam and Zolpidem at bedtime, just to get a few hours sleep, but I wake up burning. My pain has come down a lot, at least enough to stop me from ending my life. Tegretol (carbamazepine) alone would definitely help but the Nucynta is the most effective. It is an opioid but for nerve pain only, so maybe your Dr will prescribe it. I know exactly how you feel. Make sure to chew gum at all times! Even at night. I use Orbit Sweet Mint, and it helps too. It’s like fighting a monster
Thanks mwiggins1009 for sharing the meds that have helped somewhat with the BMS pain. Please do not feel obligated to answer this question, but the Dr who is prescribing these meds for you, are they a pain specialist? Or a GP? Every dentist and neurologist I've been to see in my state (FL) refuses to treat this disorder/syndrome. They claim to have 'heard' of BMS but rapidly, and with nasty attitude directly inform me they do not treat it and if that is the reason for my visit, do not scheduled a follow up appt. Dentists of all dental specialties tell me to see neurology and then every neurologist I've been to has told me "This is a dental problem, find yourself a dentist and do not make any future appts here". I've traveled within my state to Specialists to the south and north but no one, not even the universities in this state will treat BMS. So as I read your medications, I am puzzled.
No one in the state of FL would ever prescribe any opiate or pain med for BMS, seriously. I've tried to locate a doctor for almost 8 years now and finally gave UP. It's too expensive to keep going to new drs only to hear the same refrain "Get Lost". Anyway, just wondering what state you're in and also if a pain specialist is prescribing for you. If you feel like sharing. If not, no worries. You are welcome to email me privately if you prefer. MINT anything sets me on FIRE, but I do chew watermelon or bubble gum for years after getting BMS. However, my jaws get sore after several hours. I've been so desperate I went to a highly credentialed hypnotist several years ago hoping she could at least put a dent in the pain intensity. She was good but never able to help with BMS pain. Now I only take 1, 100 mg gabapentin at bedtime and 1 diazepam (Valium) every 12 hours. I am stunned but thrilled also for you that your dr will write for these medications. He or She must be truly compassionate and knowledgable, WOW! At least you have found a professional unafraid of and interested in helping you. I do not find any here at all! Thanks again for sharing.
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tegretol, pain, carbamazepine, burning mouth syndrome, burning, mouth, pain relief, syndrome, burning mouth
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