Well, we knew it could happen. The combination of Clonazepam ODT and Cymbalta gave me a good long run, but the tingling has gradually morphed back into my usual burning cycle, and it is time for me to discuss next steps with my Neurologist. Luckily, I have our annual checkup coming up soon.
A higher dosage of Cymbalta?
My magic eight ball says “Doubtful.” I have started getting some minor muscle tremors similar to what I experienced on Effexor XR, and I think a higher dose of Cymbalta would probably make that worse.
Ramp off of Cymbalta?
This sounds like what he may suggest, but I will wait and see.
Is there anything else we can try?
Not that I have heard about, but this is why I go to a Neurologist. He keeps an eye out for me and others who suffer from Burning Mouth, and I am blessed to have such an open-minded and professional advocate.
I will let you all know what I find out at my checkup in early November.
Take care out there, and keep using your coping strategies as holidays approach and stress can increase. Remember, one of the best things you can do for your body and your pain is hydration. Keep that water or other drink handy and stay as comfortable as possible.
(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.
UPDATENOTE: 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.
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!”
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.
The good news: I don’t need a root canal…yet. The endodontist recommended that we wait until after the first of the year and if it is still sensitive to cold and heat or gets infected, we will address it.
The bad news: No flare of pain to deal with. I haven’t had a big flare while on Cymbalta and Clonazepam ODT, so I can’t tell you how well that treatment works for me when the burning gets turned up to 11.
I must say that this combination has given me a combination of pain-free days (I still sometimes tingle) and sleep-filled nights.
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.
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.
If you are here, you probably either have Burning Mouth Syndrome (Disorder) or know someone who does. It is not known widely enough to attract the occasional reader.
What do you know about BMS? What have you read about it that comes from a trusted and/or scientific source?
Are you prepared to educate your physician, specialist, or neurologist about this mystery disease?
If you haven’t seen it, or haven’t stopped by for a while, don’t miss the latest research on burning mouth. Feel free to share it with your medical professionals and the good ones will appreciate it. Their days are long and their time is short, but they often really want to help you understand what might be happening with your body.
As for me, as I launch into my 16th year with BMS, I am grateful for a good neurologist who listens and is open to learning. I am grateful for a supportive husband, and I am grateful for you readers who share your struggles and triumphs with all of us. One day, hopefully soon, I will get to write an article with concrete steps to help all of us, and God willing, news of a cure. Wouldn’t that be wonderful?
We are on your side in the journey, so don’t give up hope.
A Burning Journey 