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?
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.
Recently, a reader in China asked an intriguing question. “Is there a diet for Burning Mouth Syndrome/Disorder?”
It was sad to tell him that there was no recommended diet that I knew about. However, there are some things that I have picked up over the years, both anecdotally and through personal experience, that I am better off avoiding.
I will share them here, but I also recommend keeping a pain diary. I have talked about this before, but when looking at potential irritants, intolerances, or allergies, it is of particular benefit!
If you are interested in learning more about pain diaries, there are resources on this blog that can help you. First, you must understand the pain scale and the ways it doesn’t really work for BMS Sufferers. Then, figure out what format works best for you and go to your next doctor visit armed with usable data, whether for diagnosis or continuing treatment.
Some basic tips for Burning Mouth Sufferers when it comes to food irritations:
Avoiding ultra-processed foods and sugars is always good, so definitely do that! In addition, here are some foods and other diet-related things that can be triggers for many people with BMS. 1. Intensely spicy foods. Go easy on the spice until you determine how much your sensitive mouth can handle. Many BMS sufferers are “super tasters” and react differently. 2. Sharp-edged snacks. Yes, I mean chips of all kinds, some nuts, and even pretzels can inflict little cuts in the mouth that aren’t very noticeable while you are eating but can give you a flare after the fact.
3. Chewing gum can help, but if it is sugared, you are bathing your drier than normal mouth with a sugar solution, and can lead to some dental challenges. I switched to Xylitol sweetened gum and perhaps you would like to try it. Xylitol makes your mouth very unfriendly to the bacteria that cause plaque, tartar, and gum recession but you do have to start small and work up to a complete change because Xylitol can cause loose stools until your body adjusts. 4. Low hydration levels. Our mouths hate being dry so consider yourself “putting out the fire” with frequent drinks, whether cold or hot, and in general, water is my go-to! 5. Suspicious that something might be problematic for you? Keep a pain log and you will begin to see a pattern of certain foods or activities that cause your pain to be more intense. Then you can not only moderate your intake or behaviors but you will also have data to share with your medical professional.
I look forward to hearing your experiences and recommendations and do check into the BMS Support Website for more coping strategies to help you in your Burning Mouth Journey.
Those of you who have been reading this blog or checking in on the “About Kalí” page know that I suspect that dental work was a major contributor to my chronic burning mouth. I can tie the syndrome to dental work in both instances it has occurred in my life and even a dental cleaning, no matter how gentle, can cause me to have a minor flare in burning intensity.
Sometimes you just have to get something major done though, and for me, it was the recent replacement of a very deteriorated crown. It was on my lower left back molar and the porcelain cladding had chipped way over the years until I was chomping on metal.
Eventually, I broke through the metal and actually had a hole that could lead to decay and abscess, and my dentist and I decided it was time to “bite the bullet” and replace that crown.
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.
The end of the year approaches and many of you are squeezing in those last yearly checkups. Don’t forget your teeth and mouth! I know that Burning Mouth can make dentist visits a bit more difficult but remember your mouth may be much drier than normal and dryness leads to more bacteria growth, which leads to decay.
Not kidding.
Saliva usually washes bacteria away as a natural process, but when there is less saliva, those bacteria can park and enjoy a picnic on your teeth. Decay, infection, abscess, gum recession, and disease can result and have you in a dentist’s chair longer and more often!
One strategy I have found to inhibit bacteria growth in my mouth is to use Xylitol (made from birch bark only) as my sweetener of choice. Click here for more information about Xylitol.
My personal strategy was to substitute Xylitol for my regular sweetener slowly. It can cause some side effects gastrically, so adding it gradually bypasses much of that reaction. I also gradually substituted Xylitol gum for my regular mouth-moistening chew.
This is an update of a post I did a couple of years ago. It seems like a good time to run it again and remind all of you that you are not alone.
We have covered a bit of this ground before, and again I urge you to communicate, take the rest (and medicines) you need, and use your coping strategies to get through the stress of the holidays.
Stress can be part of the “Holiday Package.“
You may be putting family events together for a variety of holidays, gathering to open gifts, and doing things you haven’t been able to do for a couple of years. It can be hard to get back into the swing of things.
Presents? Big dinners? Oh, don’t get me started! The logistics of getting everything to everyone with the uncertainty as to whether things will get there in time…
My point, my Burning Mouth Syndrome brothers and sisters, is that it can all be stressful. Life in general right now can be stressful and if you are experiencing more pain than usual, you may be suffering a “flare” that has been caused by it.
We are getting excessive heat warnings from the Weather Advisory and anticipating high temps ranging from 103 to 108 degrees or more over the next week. Oh yeah, and with high humidity to intensify it!
Does anyone out there struggle with the pain of Burning Mouth Syndrome when it is hot?
I do, and the only things that help me are the following:
Getting plenty of sleep.
Getting plenty of hydration. As they say down here in Texas, “If the number of times you have to go to the bathroom doesn’t annoy you, you aren’t drinking enough!”
Being prepared to add a little to my meds if they are flexible. I find a .25 mg dose of Clonazepam ODT, dissolved and swished around on my tongue, will back off the intensity until it is time to take my regular .50 mg dose around dinner time.
Avoiding overheating in general. Some of our medicines can make us more susceptible to heat and may even cause us to suffer heatstroke if we aren’t aware of it. Check your medicines and see if there are any warnings.
That’s all I’ve got! Do you have any strategies you use and would like to share?
Let us know here in the comments and stay cool out there!
We have all read about the linkages between stress and chronic pain of all kinds. Our bodies know when life is getting a bit “extra” and it reacts accordingly.
Many of you may have noticed that when big events or changes in your life and routine happen, your burning mouth pain may flare. If you are wise, you have anticipated this might happen, have your coping strategies at hand, and are up to date on any medication that may be helping you.
What are coping strategies for burning mouth syndrome or disorder?
The Burning Mouth Support website has a whole page devoted to them here.
More information and help that other sufferers have found useful are at Stuff That Works – Burning Mouth Syndrome. Have I found many things they discuss to be useful? Not personally, but if I have learned anything about this mystery disease after nearly fifteen years, it is that it is very individual, and different things work for different people. Sometimes just having people to talk with about it or feeling like you are part of a community can help.
A Burning Journey 