Burning Mouth Syndrome: Anyone had success with compounded mouth rinse

Yes,I took only 1/4 pill yesterday and none today, so far. As long as there are no hives, I'm happy!!! I am off benadryl also and on Alegra, but only take one a day. They threw so many meds. at me, my nerves were bad. Slowly getting back to normal now. Thank you for your help!!

I was diagnosed withBMS in 1999 and have learned to “deal” with it as it comes and goes.
If I have an episode in the evening I take doxepin.
If I feel an episode coming on during the day I take 5 mg of klonopin.
For me it is usually brought on by stress, excessive talking, lack of sleep.

Thank you for commenting. Any information is extremely useful at this point. I had a follow-up yesterday with Mayo and will trial Clonazepam Tablets instead of the compounded liquid. I am unable to tolerate any SSRI’s (we talked about Doxepin, but it is a big no for me). I am also being scheduled for Patch Testing. My case is a bit tricky, as I have multiple drug allergies , however the Mayo dermatologist I saw yesterday was extremely thorough, so hopefully we will find something that gives me relief.

Mayo Dermatology prescribed a 1mg tablet of clonazepam swish and spit 2-3 times per day and alpha lipoic acid supplement (200 mg) 3x per day. The combination has made a world of difference with BMS symptoms! I have about 70% relief within 2 months of starting this regimen.

Hi I know this was posted about a year ago, but I’m hoping you might see this.
I’m struggling, going on 16 weeks of BMS and I was wondering if you ever figured out what caused your BMS or how it cleared up on it’s own? I’m 43 years old, my husband passed away on December 18, 2021 and then 8 months later the burning started. I’ve had so many tests, all normal and I’ve seen a lot of doctors and specialist and they all say it’s caused from the trauma of him passing away. I’m struggling to believe that trauma can cause such a condition, I feel like it’s more hormonal which is hard it really know because hormonal blood panels fluctuate so much. I’m just trying to see what others were going through at the time of their symptoms starting and what they did to get rid of it or help with symptoms. I’m hoping this also just goes away, the pain can be horrible sometimes. I also struggle with taking medication so it’s been very tough.

I know it’s been almost a year since this was posted so hopefully you’ll see this comment. I was wondering if the Klonopin they prescribed was just a regular tablet or is it something special that dissolves?

I was never prescribed anything nor did I take anything other than ordinary dental care and mouthwash. I'm convinced that burning mouth syndrome, as real as it may be, is all caused by anxiety. Try yoga, Tai chi, or any really demanding exercise and/or meditation. The burning mouth will go away. I practiced yoga frequently ... every day or at least every other day. Now I teach yoga Monday, Wednesday, and Friday and attend another class Monday morning. Other days I walk a mile or two. You can do it ... and you'll grow to love the yoga. Please stay in touch here and let me know when you find relief ... you can control this !!!

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

Hi @kcarson123 and welcome to Mayo Connect. Oh my gosh, I’m so sorry for your loss. I can’t even imagine losing your husband at such an early age. What huge adjustments you’re having to face. The stress and emotions can have a profound impact mentally and physically.

Burning mouth syndrome is not a welcome situation. I just went through a couple of episodes of that myself. I do have a pre-existing medical condition that has spawned this but it still stems from an autoimmune response so I’m wondering if the med my doctor prescribed might also benefit you.

It is a steroid RINSE called dexamethasone .05 mg/ml.
For burning mouth it used off label as it’s NOT swallowed. So you won’t have the side effects of oral steroids.
I had to rinse for only 30 seconds and then spit it out. Then no eating or drinking for a half hour. 12 hours apart.
It was a game changer for me! Within a couple of days my mouth was 99% improved. Only one little patch of irritation remained and for that I have a topical gel that has been working like a miracle. But for the general burning mouth, the Dexamethasone rinse works like a champ. If I feel it returning I can use it as needed. It’s worth asking your doctor.

Also, if you haven’t already, stop using any product with mint such as toothpaste or mouth rinses and use non-mint dental floss. I had to switch to children’s toothpaste and found that Bert’s Bees Children’s paste works really well with no burning tongue! I also use a small children’s toothbrush now too.

There seem to be trigger foods for me such as anything salty, crunchy, acidic or super cold!
So no pickles, mustard, hot sauce, chips, salsa…you get the picture. But lately I’ve been able to reintroduce a little ketchup! Yay.

Over the counter mouth rinses such as Orajel or simple lukewarm saltwater rinses can help sooth the mouth.
Have you tried Orajel or salt water rinses?

Thank you so much for the reply, I was prescribed regular Klonopin tablets not the dissolving kind, so I wasn’t sure if they were the same thing, I know they make dissolving tabs as well. I read a study that had the patient place a Klonopin tablet on their tongue for 3 mins and then spit the remainder out, but it didn’t say if it was the dissolvable form or just a regular tablet. I wanted to try it, but I wasn’t sure if a regular tablet would work?