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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Something that helps me in the evenings is to pour a bit of vodka into a medicine cup and put the tip of my tongue in it. I don’t drink and I hate the taste but it burns and then numbs my tongue a bit.

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I have had this with global tongue for 6 years now. It began when I had an abscessed tooth. I have gotten relief from a rinse made with kenalog (a steroid). I use it 4 times a day rinses for about 5 mins before spitting. I also like the oral b dry mouth rinse.

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@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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I need to make a rinse with Clonazepam 0.5 mg ODT. How do I dissolve it to swish it in my mouth without swallowing it? I have been on Diazepam (Valium since 1998 and am not switching to Clonazepam - it is only for the BMS I developed that is out of control and my mouth a mess with burning, severe dryness, cuts, splits, fissures, etc., with severe pain. My teeth feel like razor blades cutting my tongue, lips, and mouth. It started with dryness and acid when my doctor let my esophagus be narrowed by anterior osteophytes growing and putting mass effect on my esophagus. I do not want to swallow any of the mix, swish around, but my RX does not say how to dissolve. It says to let it dissolve in my tongue, but I feel that might let me swallow some. Thank you for any help.

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@joyce35

I need to make a rinse with Clonazepam 0.5 mg ODT. How do I dissolve it to swish it in my mouth without swallowing it? I have been on Diazepam (Valium since 1998 and am not switching to Clonazepam - it is only for the BMS I developed that is out of control and my mouth a mess with burning, severe dryness, cuts, splits, fissures, etc., with severe pain. My teeth feel like razor blades cutting my tongue, lips, and mouth. It started with dryness and acid when my doctor let my esophagus be narrowed by anterior osteophytes growing and putting mass effect on my esophagus. I do not want to swallow any of the mix, swish around, but my RX does not say how to dissolve. It says to let it dissolve in my tongue, but I feel that might let me swallow some. Thank you for any help.

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Also, I am eating 400 - 500 tabs of Xyliments a week, and it's not helping at all. I had severe problems with Cevimeline, and now my doctor wants me to try Pilcocarpine HCL 5 mg. I have severe allergic reactions and bad sensitivities, so I am nervous about trying it. They are mostly identical in side effects. Why would they give me something that is nearly the same when I had severe problems with the Cevimeline? I cannot afford to get so dehydrated and sick again. I have been suffering for over a year and feel I am going insane. I can't talk to people, and even if I don't speak as soon as I wake, my tongue starts to move and my mouth starts splitting and becoming a mess with severe pain all over again. The Clonazepam is not a substitute for my Diazepam. I have been on that way too long to rinse my mouth for my tongue and expect it to act like swallowing a whole pill of diazepam. Instructions are not clear. Any help is appreciated. I need relief. My teeth are so dry that they are rough and chipping. My throat is so dry, I am choking. With my night mouth guard, I sleep with four stick-on thick Xyliments on my gums at night. The flimsy plastic mouth guard I cannot wear, as it damages my teeth more and makes everything worse with the dryness.

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@joyce35

I need to make a rinse with Clonazepam 0.5 mg ODT. How do I dissolve it to swish it in my mouth without swallowing it? I have been on Diazepam (Valium since 1998 and am not switching to Clonazepam - it is only for the BMS I developed that is out of control and my mouth a mess with burning, severe dryness, cuts, splits, fissures, etc., with severe pain. My teeth feel like razor blades cutting my tongue, lips, and mouth. It started with dryness and acid when my doctor let my esophagus be narrowed by anterior osteophytes growing and putting mass effect on my esophagus. I do not want to swallow any of the mix, swish around, but my RX does not say how to dissolve. It says to let it dissolve in my tongue, but I feel that might let me swallow some. Thank you for any help.

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@joyce35, I do not know how you would do this since I take two of the Clonazepam (0.5 mg), one with lunch and one with dinner. Perhaps it would be a good idea if you asked your doctor how to do this since he/she prescribed the Clonazepam. I only know taking the Clonazepam has solved my problem. With all good wishes, @joybringer1

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@joybringer1

@joyce35, I do not know how you would do this since I take two of the Clonazepam (0.5 mg), one with lunch and one with dinner. Perhaps it would be a good idea if you asked your doctor how to do this since he/she prescribed the Clonazepam. I only know taking the Clonazepam has solved my problem. With all good wishes, @joybringer1

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The research doctor cannot be reached by phone or portal. She is part of VCU, but the school, not the hospital, and I am getting no help from my terrible PCP. I have sent an email to the only email I have for the entire clinic, but it's up in the air if she gets it. I finally got brave and just put it on my tongue and tried hard not to let any go down my throat. I am on diazepam and thought it was helping a bit, but it wasn't. I tried to talk to a friend last night, and today I am in agony. My mouth is torn to pieces, and my tongue. Nothing is helping. I do not know how bad everyone's BMS is, but this is the most indescribable pain, and I live with severe nerve pain with 2 different types that blanket my body, plus necrosis, vein disease, and a lot more. The mouth has the most nerve endings, so I suspect that is why it is so bad. I am going through 400-599 Xylitol tabs in less than a week now. I feel like I am losing my mind. Thanks for answering anyway. So far, the 1 Clonazepam didn't do anything. I have never had anything so unnerving and wickedly painful in all the years I have been ill. I am tough, but this is knocking me flat, plus I am sick of being unable to talk and be social.

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