Tag Archives: Burning Mouth Disorder

The Journey Continues – Life With Burning Mouth

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The great news? The combination of 1 mg of Clonazepam ODT and 40mg of Duloxetine is still working. I am still experiencing a tingle of the tongue rather than burning, and it has been liberating.

The not-so-great news? I still have Burning Mouth Disorder, and there is no cure or even a definitive diagnostic test on the horizon. In nearly seventeen years of burning, the best we can hope for is remission. Still, the second best is a combination of medicines and coping strategies (Stay hydrated, my friends!) that allow us to function and avoid descending into depression.

We have talked about depression before and what a sneaky and destructive beast it can be. Please stay aware, and if you have people around you who care for you, ask them to be aware if your sleeping, eating, moods, or general behavior change dramatically. Sometimes those around us notice before we do because we are already in the woods.

If you haven’t seen a Neurologist, I encourage it. I find that of all the specialties out there, Neurologists are a bit more likely to have heard of or seen BMS/BMD and also seem more open to trying different therapies. Mine has had my migraines under control for over six years, and the current BMS/BMD therapy has been working for nearly a year now. Fingers crossed, right?

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The Latest News – Burning Mouth Syndrome/Disorder

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Photo by cottonbro studio on Pexels.com

(UPDATED 2-6-25) I rarely post twice a month, but things are popping up in the world of pain medicines, and you should probably know about them!

First, The New York Times Daily Podcast ran a cast about #chronicpain and some new developments in dealing with it. It was eye-opening and informative, so I bought a copy to share here. If you find it useful, consider subscribing to the NYT Daily. I learn something new nearly every day!

Click image to read the article in full

In addition, my friend and co-worker Dennis Sharpe (BMS Support Website) shared information about a new medicine coming out from Vertex. It is called Journavx and it sounds like it may be a game changer for moderate to acute pain. Will it work for Burning Mouth? Only time will tell, but if you don’t know about it, you can’t ask, right? Click on the link below to learn more about it.

I will ask my Neurologist what he thinks of it concerning the relief of burning mouth pain and I will share that with you soon.

UPDATE NOTE: I spoke with my Neurologist yesterday and this is what he said: “I actually had another patient ask about the new medication, Journavx. The problem is that it is only approved for acute pain treatment. I wish I knew why. Unfortunately, that means it is not an option for you at this point as we are not likely to get it approved, at least not in any reasonable amount of time. Thank you for contacting me about it.”

Maybe at some point they can get it approved for lower levels of pain, particularly chronic pain, but most of us with BMS would not qualify at this point.

https://news.vrtx.com/news-releases/news-release-details/vertex-announces-fda-approval-journavxtm-suzetrigine-first-class

Do I sound a little excited? I am. I am eager to see where science and pain relief will take all of us in the coming years. My prayer is “Relief for everyone!”

Is Burning Mouth Over? No.

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Image by Tumisu from Pixabay

I have been keeping all of you in the loop as I have been combining a dosage of Clonazepam ODT with a dose of Cymbalta each day. The good news is that it is continuing to work for my primary BMS/BMD (Burning Mouth Syndrome/Burning Mouth Disorder)

I consistently have some tingling in my tongue, particularly in the front third, but it is just that—a tingle. This combination of medicines has greatly lessened the fierce burning I have dealt with over the past seventeen years (yes, May 2025 will be the 17th anniversary!).

Some may say, “Doesn’t that mean you are cured?”

No. It means I have found a combination of medicines and coping strategies that are allowing me to live a nearly normal life. That is a fabulous thing, but it is not a cure.

If you have read some of this blog, you know what a slog it was to get here and that I do not take it for granted. There have been other medications that helped until they didn’t, and I just hope this is not one of those. However, for us, there is no guarantee.

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Cannabis, Virtual Reality, and Another Option – Burning Mouth Syndrome

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(c) Can Stock Photo / Ankbala

I had my yearly sit down with my Neurologist yesterday and after discussing my migraine treatment with Aimovig (100% effective, BTW, but getting very pricey with my husband’s new insurance.), we moved on to Burning Mouth Syndrome.

He asked how my pain was, and I said, “The same as usual. I achieve tolerable levels with 1 mg of Clonazepam/Klonopin ODT spread between two doses, and if I have a flare, I take an extra .50 mg to deal with that and try to get a nap.” He shook his head and said, “I have reviewed your file and you have tried just about everything out there, but there is one that I noted you haven’t tried and I think it might help. It went generic in 2006 so it isn’t outrageously expensive and you can safely try a low dose with your present meds and see if it has a good effect. I would like to get you out of pain if it is at all possible.”

Well, to be frank, this is what you want to hear from your specialist. I said I had some questions about other treatments before I jumped into another drug tryout and he sat back and listened intently.

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Burning Mouth Syndrome and Me

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Photo by Pixabay on Pexels.com

Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?

But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.

The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.

When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.

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