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Burning Mouth Syndrome: Anyone had success with compounded mouth rinse

Posted by nestletea @nestletea, Aug 16, 2021

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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diannesmcneill | @diannesmcneill | Apr 21 12:29pm
In reply to @bgadams "Is esophagus scope the same as an endoscopy? If so i had that recently as well..." + (show)
Profile picture for bgadams @bgadams

Is esophagus scope the same as an endoscopy? If so i had that recently as well as a colonoscopy and a camera pill that I swallowed. No issues found.

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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.

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hocmgirl | @hocmgirl | May 17 8:09pm

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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rae1112 | @rae1112 | Jun 1 9:14pm
In reply to @joybringer1 "The head of oral pathology at our local dental school prescribed 0.5 mg of clonazepam 2-3..." + (show)
Profile picture for joybringer1 @joybringer1

The head of oral pathology at our local dental school prescribed 0.5 mg of clonazepam 2-3 times a day. I find twice a day is enough for me and have been taking this for years. This is the only thing that has worked for me. Every once in a while I will take just one and I know it is time to go back to two when my mouth begins to burn. This can be a miserable condition without help so I hope you can try it. Before I found this answer, a rheumatologist prescribed a compounded swish and spit. It did not work. I am thankful for the clonazepam. @joybringer1

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Do you take clonazepam pills or mouthwash?

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joybringer1 | @joybringer1 | Sep 24 5:04pm

@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

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