Singing, Talking, and Burning Mouth

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I am getting older, and although singing has always been a big part of my life, COVID put a hold on performing, and I am just now getting comfortable with the circumstances that surrounded me when it was at its peak.

I attempted to get back to singing a couple of years ago, but groups were not requiring COVID vaccination, and my precious grandson, who has Cystic Fibrosis, was not old enough to be protected. I had to pass.

Now, he is vaccinated regularly along with me, my family, and close friends, and I feel safer in crowds in general. My husband and I have resumed most of our social activities, and I am going to try singing in a group once again.

People have asked, “Doesn’t singing bother your burning mouth?”

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Wildfires, Air Quality, and Burning Mouth

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Let’s talk about air pollution.

Not climate change, because I have beliefs about that, but I understand that we don’t all agree about it. I’m not here to talk politics with you. I am here to talk about science and the many studies that prove that air pollution of all kinds is bad for our lungs, our health, and, of course, for our burning neuralgia.

If you are in a part of the world that is affected by wildfires, Saharan dust, or other environmental factors that trigger air quality warnings, please heed them. Stay inside if you can. If you have an air purifier, please use it regularly. Take this seriously for your health and your comfort if you suffer from Burning Mouth Disorder.

I was just in Northwest Washington State for a 50th High School Reunion and planned to fly over to Eastern Washington to spend a few days with my best friend from Austin who bought a condo there a few years ago. She called me and said, “Don’t come.”

The wildfires in Idaho had recently intensified, and the winds were carrying smoke and particulates into her area. She told me the alerts warned that even if the air looked clear enough, it wasn’t, and they advised everyone to stay inside if at all possible. I listened, and we are rescheduling our visit. If you are traveling this summer, check out the air quality as well as the temperatures. Your chronic pain will thank you!

So, what can you do if you have to go out?

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Your Burning Mouth Check Up

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After nearly eighteen years of this round of Burning Mouth, I usually know what is going on. Mastering the BMS Support Website helps, as well. However, no one should skip checking in regularly with their doctor or neurologist to let them know how they are doing, and, more importantly, to see if there is any new information, medications, or coping strategies they should know about.

Please keep in mind that many images, graphics, etc. on the Internet that show you gnarly-looking tongues with cracks and lesions are NOT Burning Mouth. If you have Burning Mouth, there are no visible symptoms. It is one of the things that makes it a challenge to diagnose!

My checkups have gone to an annual schedule since I have had this for so long, and it was great to get a chance to share the physical therapy coping strategy and ask if there was anything new I should try. Unfortunately, it looks like I have tried most meds available, and the ones that worked the best had that pesky head twitch side effect, so I could not continue them.

Have you tried anything lately that worked for you?

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Physical Therapy and Burning Mouth

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I am a cynical person when I am perusing possible treatments for Burning Mouth.

After all, through nearly eighteen years of burning neuralgia, I have tried just about everything that has a reasonable likelihood of helping.

When this YouTube video was brought to my attention, I applied that same questioning attitude, and I must admit, between the somewhat monotone delivery of the doctor and the fact that I didn’t agree with everything he said, it was a bit of a slog. But I am glad that I stayed with it and heard about the connection between the cervical vertebrae and the multitude of major nerves that are affected by them.

I have tried chiropractic care in the past, and although it was pleasant and my Chiropractor was excellent, it did not relieve my pain to any large or lasting way. We did discover that I had a slight reversal in my cervical vertebrae, most likely caused by a minor case of whiplash in my 20s after being rear-ended.

This video highlighted the situation as a potential cause for irritation of multiple nerves, and the doctor recommended a series of exercises to both relax and minimize strain while strengthening the muscles in the neck area to better support proper posture and alignment.

I thought, “What do I have to lose?”

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Keeping Warm and Burning Mouth Syndrome

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Winter is here, and the furnace is on, the fireplace is lit, and maybe even a fire pit is burning outside at your house. Sounds so cozy, doesn’t it?

But the truth for Burning Mouth sufferers is that furnaces, fireplaces, and fire pits are no friends to us. They dry out the air, and some release particulates that can be irritating to our tissues and lungs. Dryness makes our Burning Mouth pain more intense, and even adding large amounts of water to our daily intake doesn’t make it “all better.’

So, what can we do?

Humidify!

Ensure you are using a clean humidifier with no mold or other residue; distilled water is always a good choice. Humidify your sleeping area, if nowhere else.

The New York Times ran an excellent article on how to make humidifiers work for you. It can be accessed at this gift article link: Click Here

Boiling a pot of water on the stove will put additional moisture in the air, but you must keep a close eye on it to avoid a burned pot.

Interested in learning more about Burning Mouth, the studies that have been done, and the science so far? Go to the Burning Mouth Support website at https://www.bms-support.org/ and check out the Research page for links to the latest research we can find.

If you know of a study or research that has been done by a reputable source that is not listed there, just let me know in the comments, and I will forward that information to them.

Stay warm, stay hydrated, and take good care of yourself this winter.

The Honeymoon is Over – Burning Mouth Syndrome

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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

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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.

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Another Mother’s Day – Another Year of Burning Mouth

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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.

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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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