Burning Mouth Syndrome: Anyone had success with compounded mouth rinse

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.

It makes me feel so good to hear back from you. Btw ... I'm a 77 year old father of three and grandfather of nine. My wife, Dixie, and I finally retired from our own business just three years ago. I've always been plagued by anxiety and associated illnesses, just my nature.

Please, please, please ... Start walking right away. If the weather is an issue, find a mall or Y where you can walk every day. Walk fairly fast, not so fast that you mess up your knees or hips, but fast enough to feel pleasantly exhausted when you're finished. Now at 77 I walk only two miles at three miles per hour. In my 60's I'd walk four miles in one hour. Start out at a gentle pace and work up to it. And your daughter is 17 ??? She might make a great companion for walking and yoga .

For anxiety, one of the most important parts of yoga is breathing. Don't breath only in the top of your lungs with your shoulders ... use your diaphragm to pull the air clear to the bottom of your lungs. Always reach, twist, and bend in yoga gently, yet to your best. Always go slowly and breathe with each motion.

... and don't postpone ... get right to it !!! 😄

Thank you so much for the reply and all the helpful information. I haven’t tried much except chewing gum and at the beginning they thought it was Thrush so the doctors prescribed Nystatin which didn’t do anything but burn more because I didn’t have Thrush. Yes, it’s been a very difficult process losing Chris. I’ve had every test there really is to be done and the doctors believe this is all caused by trauma and anxiety. I start EMDR therapy on Tuesday and I’m hoping that helps me. I have had a hard time accepting this is from trauma but I know things like this can be triggered from traumatic life events. BMS seems to be a very complicated Syndrome as there are so many different causes for a burning mouth. Thank you so much again for all the helpful information! Let’s keep in touch!

My heart goes out to you because stress/anxiety can cause all kinds of issues within our bodies, including auto-immune responses. It’s like a double whammy…as if the original trauma wasn’t enough. Losing a spouse is one of the most emotionally devastating events in a person’s life so it’s not a far reach to consider some of these physical ailments could be stemming from your loss.

It’s reassuring to hear you’re getting some therapy started because sometimes we can use a little help and guidance. EMDR (Eye Movement Desensitization and Reprocessing) was really beneficial for my adult daughter when she was facing an emotional period in her life. It helped her immensely. So I hope you find some relief with this technique too.

If I may toss this out for you, chewing gum will most likely make the burning mouth worse. The sugar and flavoring can irritate the oral tissue, just as the toothpaste and other products I’d mentioned. I know it might feel good initially but the coating on the gum can leave residue on the tongue and tissues, keeping the mouth feeling as though it’s been scalded by hot coffee or tea. At least that’s what it did to me. Basic salt water rinses helped a little to sooth the tissue. I used to put a small glob of honey on my tongue to let that melt over it. That felt good for a little while.
But try the Orajel rinse. You can find that in a drug store. It’s not minty and can help calm things down. Talk to your doctor about the Dexamethasone mouth-rinse for use as ONLY an oral rinse and spit. Not to ingest (at least at this time). It is also an oral form of steroids but for the burning mouth it only needs to be swished for 30 seconds and the spit out. Twice daily.

Here’s a fairly comprehensive website with some ideas for BMS and remedies for soothing. A recent traumatic life event is listed as a triggering mechanism for Burning Mouth Syndrome.
https://draxe.com/health/burning-mouth-syndrome/
Since you’ve joined Connect, that means you’ve picked up a huge support network of new “Family” members. We have so many groups with members just like you who share their experiences and band together in support. There’s one group in particular I think would be good for you.
It’s our Loss~Grief group. You don’t have to go through this process alone. 🙂
https://connect.mayoclinic.org/group/loss-grief/
Therapy can take time, so let me know how your session with EMDR feels for you. I’ll be here anytime, ok?

Yes - a regular tablet works fine.

I’m pretty sure my BMS was caused by extensive dental work and trauma to my nerves in my mouth. I joined a BMS forum and saw pulling was recommended that had helped many so I tried it with coconut oil and it worked for me. It had been months of trying mouth washes, toothpastes etc but thank heavens this worked and I haven’t had it since, also have not been to the dentist either! I’d say it took about 2 to 3 days to notice it was helping me. Good luck, BMS was not fun 😩

I’ve had it for over 16 years. Over time I’ve learned to deal with it. The burning mouth grouos in Facebook have helped me a lot.

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?

I’m sorry I know I asked a couple questions before, but I ended up getting the dissolving .5mg tablets of Clonazepam, do you just mix it with water swish and spit it and for how long do you swish? Did it work immediately or did it take some time to start working?
I was given the Clonazepam compounding swish and spit, but whatever they mixed it with flares up my mouth. I was going to try dissolving the tablets in a little water, swish and spit, but I didn’t know if it would work, how long to swish and if it’s immediate relief or if it takes time to work. Sorry for all the questions, I’ve been in so much pain 😥

I just place the tablet in my mouth - do not dilute. I swish for between 3-5 minutes. I felt better within a couple weeks, but full effects took longer.