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Burning Mouth Syndrome: Anyone had success with compounded mouth rinse
I am a Mayo patient in Jacksonville, FL and have been suffering from BMS since January 2021. I have tried every natural remedy and food modification that the Mayo dermatologist recommended, with no success. The capsaicin rinse was not tolerable and caused mouth ulcers. My Mayo doctor just prescribed a compounded Clonazepam mouth rinse (.1mg/1ml) to "swish and spit" up to 3 times daily (5 ml at a times). Has anyone found success with this regimen? If so, how long did it take for symptom relief and at what dosage?
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Yes it is. Medication is another thing that can cause burning. I started dosing down and eliminating meds one by one to see if any of those were causing burning.
I'm writing 4 years later, just locating this. It's good for me to know that I'm bot walking this path alone.
I have been dealing with BMS for over 7 years and hope this is not a lifelong sentence. I have tried so many options that have not provided permanent resolution. Does anyone have a white coating on their tongue? The burning coordinates with heart palpitations, has this occurred with anyone else?
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1 ReactionDo you take clonazepam pills or mouthwash?
@rae1112, I am so sorry I did not answer this a long time ago. I have a bad habit of leaving too many emails "for later" and forget them and delete many at a time. I take Clonazepam pills. I recently tried to cut down to 1 per day and that did not work. My mouth was one of several things burning at night so I started my 2 per day again. I hope you are doing better now. With all good wishes, @joybringer1
@cgent oh wow! It just went away? That leaves me a little hopeful. I see this was written in 2021 and it’s now 2025. Are you still BMS free? I just suddenly came down with it this past July out of the blue and so far it’s been 3 months. One day I’m fine and the next morning I wake up and I’m not. So crazy! I’m glad yours went away and hoping mine will just suddenly disappear as it came.
@joybringer are you still taking the Clonazrpan? My dentist was suggesting the topical. Do you have any side effects? Is it working? My burning mostly happens when I’m eating. This whole crazy thing started this past July out of the blue! I was fine one day and the next day not. So far I’ve gone to my PCP, dentist, oral surgeon, oral medical specialist and now just started with a maxilofacial pain specialist. So far I haven’t started any drugs yet. It’s only been 4 months since I came down with it. The latter doctor told me to go to a GI to get my gut health checked. I’m living in hell and feel so alone as nobody can truly understand what I’m going through. I’d love to start a BMS support group as there is none. It’s good to be able to communicate with others inflicted and share experiences and remedies for relief. Wishing you well.
@babycat, I am still taking Clonazepam 0.5 mg twice a day. My burning mouth started just like yours. One day I was OK, but then it started and has never ceased. I wonder why one of your doctors has not suggested this med. I was certainly miserable before I started Clonazepam. I have no side effects and could not live without this med. Every once in a while I try to cut back on the med, but I always go back to two per day. I take one with lunch and one with dinner. The head of oral pathology at our local dental school prescribed this to me and said he did not think I could take three per day because I am little. He was right and two work very well for me. My PCP understands this and he now prescribes it for me. I hope one of your doctors will prescribe this for you. It has changed my life and with no side effects, so why not take it? It is certainly better than living in hell. I have been there and now I can enjoy life a bit more. With all good wishes, @joybringer1
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1 ReactionThank you for responding and I will definitely talk to my doctor! And it’s good to know that you’ve got no side effects. I’m glad your life’s changed for the better since you’ve been taking this drug! I heard Alpha Lipoic Acid may help. Works with the nerves/neuralgia. When do you get your burning and where in your mouth? Only at night? Do you have difficulty tolerating food? I’m having so much difficulty finding food that doesn’t burn me. About 95% of my diet is knocked out. Everything I eat has to have 0 seasoning or else I get a reaction. I can’t even eat plain vegetables which is so crazy! Trying to be strong. Thanks again!
@babycat
Two other potential causes of “burning mouth syndrome” that are not discussed frequently and are not typically associated with burning mouth are:
1) Certain mouth washes such as Listerine can cause significant burning.
2) If someone consumes a lot of pine nuts, especially those from China, they may experience Pine Nut Mouth Syndrome which can result in a metallic taste lasting days to weeks.
For both of the above, the easy solution is stop thise products.
@kolshansky thanks! Everything I eat is just bare/plain food mostly breads, salmon, plain turkey and chicken so no pine nuts. All nuts make me burn. I don’t use mouthwash and changed my toothpaste as there could be an ingredient, I was told, that can trigger BMS. I also checked for vitamin deficiencies and food allergies. All negative. Thanks again for your kind and thoughtful advice! Much appreciated!