1. < Skin Health

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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kcarson123 | @kcarson123 | Dec 11, 2022
In reply to @nestletea "It is a regular tablet that dissolves. It has improved symptoms by about 70 percent." + (show)
@nestletea

It is a regular tablet that dissolves. It has improved symptoms by about 70 percent.

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May I ask what you dissolve your Clonazepam dissolving tablet in? Is it just water, then swish and spit? And for how long do you swish?

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nestletea | @nestletea | Dec 11, 2022

I just place them in my mouth - no need to dissolve the tablets in water.

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dustycat52 | @dustycat52 | Dec 11, 2022
In reply to @kcarson123 "I am so sorry you’ve hd this for 16 years. Can I ask you how you..." + (show)
@kcarson123

I am so sorry you’ve hd this for 16 years. Can I ask you how you have been able to deal with the pain for that long? Do you remember how it started or what might have triggered it? Do you mind me asking you what age you were when it started?

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I was 56 when it started. The symptoms began after I had bronchitis and then acid reflux. If I knew then what I know now I might have been able to fix the reflux and not have it go into BMS.

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carolynmcn | @carolynmcn | Dec 14, 2022

I got my burning mouth syndrome from Abilify. It is an antipsychotic. I have never, ever been psychotic. But my psychiatrist kept increasing the dose to augment my antidepressants. I told him for over a year that I was lip smacking and my tongue was acting odd.
Now I have Tardive dyskinesia and burning mouth syndrome. My speech sounds like I have had a stroke.
I use a mixture of mycoststin, xylocaine and sodium bicarbonate from the pharmacy. It help a little, very superficially. The pain is on the inside of my tongue and on the roof of my mouth.

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Zebra | @californiazebra | Apr 2, 2023

I've had BMS off and on for 40 years. More on than off. I see comments of terrible pain and think some of you have it worse. Mine is very annoying and grabs my attention, but is not debilitating pain. It feels a lot like the aftermath of burning my tongue on overly heated hot chocolate. I have GERD (acid reflux) and believe that is a big part of it since it's often worse after eating. Chocolate makes it worse. I also am allergic to mint if I eat it my throat swells so all these minty toothpastes are not ideal although you want that minty breath. I try to find ones that are not so strong. I only drink water and one thing I've noticed over the years is some brands of bottled water can trigger it for two weeks and others don't bother me. So I think the chemicals they use to purify the water must either bother my mouth or cause reflux. Chlorine burns the heck out of my eyes in a pool so maybe chlorine in water is burning my mouth. I have a lot of allergies. I know preservatives in eye drops make my eyes red and burn so I have to use single use drops. Maybe preservatives are also a factor for my BMS. Best of luck to all.

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1 reply
marye2 | @marye2 | Apr 4, 2023

I have MCTD and periodically got geographic tongue (along with fluted tongue edges) that made it painful to eat. Miracle Mouthwash, with nystatin, did the trick. It is an RX, and I got it from the local compounding pharmacy. Worked great, but I will say it stung a little at first. I haven't had it in awhile, perhaps because MCTD has calmed down somewhat. I also use Oral B Dry Mouthwash with antibacterial xylitol.

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1 reply
deanna529 | @deanna529 | Jul 21, 2023
In reply to @kcarson123 "Thank you so much for the reply! I lost my husband December 18, 2021 and this..." + (show)
@kcarson123

Thank you so much for the reply! I lost my husband December 18, 2021 and this all started 8 months later. Every doctor I’ve seen said this is caused from the trauma of losing Chris. They have told me once I get that taken care of this will subside. I start EMDR therapy next week. I’m full of anxiety all the time, it’s been very difficult for me as the pain from BMS can be very intense at times.
The pain makes my anxiety so much worse, it’s definitely a vicious cycle. I’m going to try the walking and see if I can get into a yoga class, right now I struggle even leaving the house. I have a 17.5 year old daughter that needs her mom, we just lost her dad and it’s breaking my heart. Just 16 weeks ago I was a healthy 43 year old and now I don’t even recognize myself. wwwlegacyofchristophercarson org
Thank you for the advice and reply, it means a lot.
I feel like there’s hope.

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I just read your post today. So sorry for your loss.
I was just diagnosed with BMS. I also lost my husband on August 11, 2019, and am wondering if it has anything to do with trauma. I have had this condition for 5 months and also wondering if it is due to medication.
Hopefully, you are better now.

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deanna529 | @deanna529 | Jul 21, 2023
In reply to @californiazebra "I've had BMS off and on for 40 years. More on than off. I see comments..." + (show)
@californiazebra

I've had BMS off and on for 40 years. More on than off. I see comments of terrible pain and think some of you have it worse. Mine is very annoying and grabs my attention, but is not debilitating pain. It feels a lot like the aftermath of burning my tongue on overly heated hot chocolate. I have GERD (acid reflux) and believe that is a big part of it since it's often worse after eating. Chocolate makes it worse. I also am allergic to mint if I eat it my throat swells so all these minty toothpastes are not ideal although you want that minty breath. I try to find ones that are not so strong. I only drink water and one thing I've noticed over the years is some brands of bottled water can trigger it for two weeks and others don't bother me. So I think the chemicals they use to purify the water must either bother my mouth or cause reflux. Chlorine burns the heck out of my eyes in a pool so maybe chlorine in water is burning my mouth. I have a lot of allergies. I know preservatives in eye drops make my eyes red and burn so I have to use single use drops. Maybe preservatives are also a factor for my BMS. Best of luck to all.

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WOW! 40 years....
I just developed BMS. I do notice that it is also associated with dry mouth and can't tolerate chocolate either. I do have a lot of allergies as well. I have a feeling that it is associated with my new heart meds...even though the cardiologist says no....This is such a mystery.

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nmkblc1995 | @nmkblc1995 | Jul 22, 2023
In reply to @marye2 "I have MCTD and periodically got geographic tongue (along with fluted tongue edges) that made it..." + (show)
@marye2

I have MCTD and periodically got geographic tongue (along with fluted tongue edges) that made it painful to eat. Miracle Mouthwash, with nystatin, did the trick. It is an RX, and I got it from the local compounding pharmacy. Worked great, but I will say it stung a little at first. I haven't had it in awhile, perhaps because MCTD has calmed down somewhat. I also use Oral B Dry Mouthwash with antibacterial xylitol.

Jump to this post

I had geographic tongue most of the last 20 years. Then I was diagnosed with base of tongue cancer in 2020 and got BMS after the radiation treatments. It has been a horrible 3 years. It feels like my mouth and back of throat are scalding, and get gets worse with talking, after eating, and especially sleeping. I couldn’t believe it could get worse, but it does. I have not found any remedies for long term relief. I do take pain meds that work in very short term, and unfortunately, stronger meds make me sick. It is very hard mentally. Very hard. I have found Hall’s makes mini balls sugar free watermelon flavor. They slightly help with the extreme dry mouth and the pain. I pray every day for a solution to this. Keep your recommendations coming.

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marye2 | @marye2 | Jul 22, 2023

I also use Oral B Dry Mouthwash with xylitol. It keeps dry mouth at bay for a few hours. Biotene spray does ok too for when my mouth is dry enough for throat to be dry, also. Do you have a CPAP? Mine has a humidifier and also keeps m from breathing through my mouth. I don't have any prescriptions for it. I used to suck hard candy and chew gum to help with it. I'll think of you if I hear of anything new to try. Jelly Drops (hydration) are in new ads.

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