Burning Mouth Syndrome: Anyone had success with compounded mouth rinse

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.

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.

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.

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.

@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

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.

I was diagnosed with BMS 2 1/2 years ago. It came on very suddently for no apparent reason. Daytime only, never at night. And triggered by acidic or spicy foods. Now after seeing 2 oral surgeons and a neurologist, I'm convinced there is no cure.... it's just one of life's great mysteries.
One oral surgeon gave gave me a rx for a compounded mouth rinse which numbed my mouth for a few hours. I am having best luck managing the burning symptoms with Lyrica (pregabalin) prescribed by my neurologist, along with a strict diet of nothing acidic or spicy. I also get temporary relief from dry mouth lozenges (ThereBreath).

Yes I have suffered w burning mouth, tongue, and tooth for almost 4 years and spent a fortune trying many things. What finally helped me was getting an esophagus scope of esophagus and stomach. Diagnosed with gastritis with hyperplasia, acid and bile reflux, and Barrett’s. Treatment started with Prilosec OTC 40 mg twice daily and drinking 10 ml sucralfate liquid 3 times a day and at bedtime. When treatment began I was also taking pain pills, pregabalin and baclofen for the burning mouth. Follow all on line suggestions for treating reflux in regard to eating, drinking, and sleeping. I only drink water. I don’t sleep on my right side. Eat light meals and don’t eat after 6 pm. I also elevate my upper body when resting or sleeping. Saw a little improvement of the mouth burning after 30 days of treatment. After 60 days the burning was so much better I could stop pregabalin, pain pills, and the baclofen. I am vastly improved! If burning comes thru during the day I also take Pepsid complete OTC no more than twice daily. The pepsid stops the break thru mouth burning pretty quickly. I did have to change PPI because Prilosec made me cough and I put up with the coughing because the burning mouth was mostly gone. Finally switched to another PPI Nexium. I am 7 months into treatment from when I got the esophagus scope. The burning mouth flares when I take less than two 20 mg Nexium OTC twice daily so I have to maintain the higher dosage of Nexium and continue to take the sucralfate liquid 10 ml 3 times a day and at bedtime. It is amazing now if burning breaks through and I reach for a Pepsid Complete OTC instead of a pain pill. Took a lot of patience to get where I am. I did start taking the baclofen again because I read where baclofen could help reflux. My burning mouth also flares if I have to take a steroid as I was given to help stop the coughing Prilosec was causing and when I had to take an antibiotic for a UTI. I read where baclofen causes burning mouth so this week have stopped the baclofen 5mg to see if that improves tge break through burning mouth I sometimes get. My body can now relax because I can actually have so many hours of my day without any burning mouth. Life is good again.

I understand exactly what you are talking about. I searched for answers for over 4 years and tried many things. My best move, recommended by emergency room doctor, was getting the esophagus scope. I was diagnosed with silent acid reflux and Barrett’s. It took 2 months of acid reflux treatments (high dose ppi and sucralfate liquid) to finally start getting relief from the hot burning. I still take the original treatment but when burning breaks thru I dissolve a Pepsid complete OTC tablet in my mouth and it’s not long before the burning stops. I sure did suffer. There is help! There is relief. When asked if I had reflux I always said no. I never knew reflux could be silent. You could be having acid and or bile reflux. Not an overnight fix. I am very thankful!

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.