Category Archives: Burning Mouth Syndrome

The Honeymoon is Over – Burning Mouth Syndrome

Posted on by
3

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.

I Keep Rolling Along – Burning Mouth Syndrome

Posted on by
2

I haven’t posted for a while since there has been no change in my Burning Mouth or the meds I use to control it. The combination of Clonazepam and Cymbalta is still keeping my pain at bay almost all of the time, and I have been focusing on other projects and my overall health.

On another topic…

Weight has been a challenge for me since my teens, and I have yo-yo dieted like many of us with the same disappointing results. Nothing I did, whether exercise, fad diets, cleansing fasts, or anything else, worked long-term. None ever got me precisely where I wanted to be, and the outcome over time was always the same…the weight came back, and I felt like a failure once again.

Over the last year or two, I started hearing about the GLP-1 weight loss drugs. I was over 200 pounds, pre-diabetic, and teetering on the precipice of Type 2 diabetes that eventually destroyed my mother’s kidneys and caused her death last year. It was time to take action, and with the help of my doctor and nurse practitioner, we researched the new options and what would be the safest and most effective for me. I am very blessed. My husband’s insurance is good, and I was not automatically priced out of the market.

Continue reading →

Another Mother’s Day – Another Year of Burning Mouth

Posted on by
4

Every year at this time, I look back over the year behind me and forward to the future. This is the conclusion of my 17th year of continuous Burning Mouth and the beginning of what I hope will not be the 18th. I always have hope, and this past year has fulfilled at least some of them regarding this chronic pain we deal with daily.

As I have indicated in previous posts, the combination of 1 mg of Clonazepam ODT and 40 mg of Cymbalta has given me a new lease on life. I still tingle at times, and yes, dental work continues to be a challenge, but daily life is pretty awesome.

Would this work for you?

I honestly don’t know. This disorder is highly individual, and I have lost count of all of the meds, testing, and coping strategies I have tried over the last 17 years. Clonazepam has always been the most effective, and when I switched to the ODT (orally dissolving tablet), it was even more so. However, it did not completely control the burning, no matter how often I took it.

By the way, I swish until it is completely dissolved and then swallow it. I have read on other sites that people are spitting it out, and I wonder if they are getting the full benefit.

Continue reading →

The Journey Continues – Life With Burning Mouth

Posted on by
5

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?

Continue reading →

The Latest News – Burning Mouth Syndrome/Disorder

Posted on by
Reply
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.

Posted on by
4
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.

Continue reading →

Using Clonazepam for Burning Mouth? You Should Know This.

Posted on by
3

Clonazepam is also called by the brand name Klonopin and the form I use is the Orally Dissolving Tablets (ODT). A sharp-eyed reader named Susan O’Brien called this alert to my attention. Even though I read the New York Times fairly regularly, I missed this one and received no other alert about it. I hope the same is not true for you!

The NYT article is at F.D.A: Some Clonazepam Pills Recalled Over Incorrect Dosages on the Label.

The article came out just a few days ago, and once I was alerted, I immediately checked my current stock of Clonazepam ODT for any disagreement between what the box said and what the multi-tablet packs inside said.

No problem here. They match perfectly, but as you read through the article, you will see how dangerous it could be if you were taking multiple tablets and it turned out they were larger doses than you thought.

So, please take a moment and do what I did. Check your box against your multi-tablet or blister pack and make sure those dosages match up.

Wishing you all a very Happy Harvest Holiday Season and some wonderful get-togethers with those you love.

Cymbalta and Clonazepam for the Win – Burning Mouth

Posted on by
2

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.

Continue reading →

Clonazepam ODT and Cymbalta for Burning Mouth

Posted on by
10
Photo by Karolina Grabowska of Pexels

Another month began and I am still getting the best symptom relief I have ever had without annoying side effects.

Clonazepam ODT at 1 mg and Cymbalta at 40 mg once a day is doing the trick for me. I try not to get too excited about it because I have been fighting this dragon for almost seventeen years, and I know things can change, flares can happen, and medicines can simply stop working.

Meanwhile, I am going to enjoy this respite. I am traveling with my family to Maine for a couple of weeks and then to Amsterdam with my husband. He will be working, but I will take long walks, look at beautiful old things, and enjoy the coolness that is sadly lacking in Texas right now.

Continue reading →