Tag Archives: Stuff That Works

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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What’s New for Burning Mouth?

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Another year is coming to an end with Burning Mouth Syndrome (Disorder) and I want to share a bit of the research that has been done for us.

As usual, there isn’t a lot and many of the studies are small, but I read everything I can get my hands on and the Burning Mouth Support website publishes links or PDFs!

BMS sufferers have no foundation or national presence so between Facebook Groups (You can find links to them on the BMS Support website!), the Stuff That Works – Burning Mouth Syndrome site, and general Google searches, we make do.

Watch out for those Google searches, though. Often someone is trying to sell you something and often, it works for no one.

Take a look at the research on the BMS Support website. We find the most applicable and well-cited abstracts and reports, and although the scientific language can get a little wordy or even a lot confusing, you can zero in on the conclusion.

You may find a coping strategy or a medicine that may help you deal with this chronic pain. Knowledge is a good thing and the difference between the anecdotal comments on Stuff That Works and Facebook Groups and the conclusions of scientific studies can be dramatic.

Do we need more research?

Darn right, we do!

When will we get it?

When scientists get around to it. There is a hope that as more Americans age and experience this particular chronic pain the numbers will force or validate the need for more research, but it is only a hope.

Meanwhile, we support each other and look for coping strategies and medicines that are helpful.

Happy Holidays to you all, and here’s to making 2024 a better year for all of us.

Effexor XR is a Qualified Success

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I have written before about Effexor XR/Venlafaxine HCI, a medicine my Neurologist recommended since it is one of the few meds out there that I haven’t tried!

Up to now, the only thing that truly lessened my escalating burning neuralgia was Clonazepam ODT, and the side effect of that, as those of you who have tried it know well, is drowsiness.

I found over time that I could control the timing of my doses and coordinate caffeinated drinks (coffee in the morning, iced green tea until noon) to ward off daytime drowsiness. It was working okay and I was able to function. When flares arose (mostly after dental work of any kind) I could increase the dosage and the caffeine. Life was continuing to be workable.

Effexor XR/Venlafaxine HCI is an antidepressant, and my neurologist started me out with a minimal dose of 37.5 mg once a day. I had no discernible relief from it at that level, so we doubled the dosage to 75 mg once a day. At that level, I was experiencing some relief (The burning became more of a tingle that would intensify through the day until I took the minimum dose of Clonazepam ODT around dinner time.) but it wasn’t knocking the BMS out.

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The Current Covid Variant and Burning Mouth

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Stuff That Works – Burning Mouth – Read about it below!

If you have been following the news, you know that most current cases of Covid, including reinfections, are the Omicron BA-5 variant, which has two faces for us. The good face is that it is not as virulent and fatal for most people. Note I do not say all. The bad face is that it is even more infectious than measles and doctors note correlations between accumulated injury to the body and long Covid symptoms with reinfections. For those of us with the chronic pain of Burning Mouth, the prospect of adding another layer of symptoms or exacerbating the ones we have with hacking coughs and congestion is daunting.

Interested in learning more? NPR explains it here very well.

Our immediate family has remained relatively unscathed from Covid. Our younger daughter and her husband who live in another state got it, but our daughter is a front-line healthcare professional and they are both somewhat frequent travelers, so that was probably unavoidable. They are young, healthy, and did okay since they were fully vaccinated and boosted, but it wasn’t a pleasant experience.

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