The Burning Mouth Diet?

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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.

Chronic Pain Scale and Burning Mouth

Breaking in a New Doctor

Additional Links:

Using a Pain Diary – Courtesy of News Medical Life Sciences

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.

Hormones, Menopause, and Burning Mouth

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As usual, when you look for research on Burning Mouth Syndrome or Disorder, you don’t find a great deal. When you do, it is often limited to very tiny numbers and scope and can be conflated with Trigeminal Neuralgia, Sjogren’s, and other syndromes that may have some symptoms in common with BMS.

But they are not BMS. There is no diagnostic tool, a blockable nerve, or specific medicines for BMS. There just isn’t.

We know statistically that the most affected group of BMS sufferers are older women. That is a fact.

We know statistically that many women who are affected are peri, pre-, or postmenopausal. That is a fact.

We know, too, that this correlation (Note that I do not say causation because that has never been proven.) has not served older women well. Often older women are shunted off into the “change of life” box in medicine and their complaints are not taken seriously.

I got curious.

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CPAP Issues – Weight Loss Drugs – Burning Mouth

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I have brought you up to date on what happened to me and millions of other Phillips CPAP equipment users in previous posts (Sleep Apnea and Burning Mouth – 2020, Sleep Apnea and Burning Mouth Update – 2022, and A CPAP Update – 2023), and here is the latest.

This morning I read that Phillips Respironics will no longer make and sell these machines that caused so much concern. You can see the most recent and updated story at ProPublica.

What does this mean for people with sleep apnea? Less competition in the market, for certain. Phillips Respironics was the leader by far.

What does this mean for people with Burning Mouth Syndrome/Disorder?

First, I hope you know about this and have stopped using your defective machines. Second, I hope you have seen your apnea specialist and found alternative therapies to help you. And third, and most importantly, if your apnea was caused by being overweight like mine was, I hope you will take that seriously and find something that helps you.

So, let’s talk about the elephant in the room these days. Weight loss meds that have big results but may have big side effects in the long term and definitely have big price tags in the short term.

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Dental Work, Flares, and Burning Mouth

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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.

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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.

Dental Care and Burning Mouth

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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.

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Burning Mouth Syndrome and the Holidays

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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.

What can you do?

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Learning More About Burning Mouth

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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?

Most people aren’t. and that is why we created the Burning Mouth Syndrome Support Website just for you.

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 CPAP Update – Burning Mouth

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Back in February 2020, I wrote about having a sleep apnea diagnosis and using the Philips Respironics Dream Station. This was supposedly the top-of-the-line machine. It had the advantage of offering humidified air that would help your mouth and throat be more moist. Since dryness is not a friend of Burning Mouth, I, of course, chose that option. You can read the details at Sleep Apnea and Burning Mouth.

Time went by and I persevered with the machine although it was not always the most comfortable thing and the travel-size version I got with a humidifier disc was a total bust. It was just painfully dry for my throat and I couldn’t tolerate it.

Covid19 hit us all, and travel wasn’t that much of an issue.

In September of last year, I wrote a follow-up post about the nationwide recall that Philips did of their CPAP machines. You can read the details at Sleep Apnea and Burning Mouth Update.

Now a new piece of information has come out based on ProPublica’s investigation and excellent reporting. It is chilling and makes me very happy that I lost weight (Stuck at 35 lbs. down, but I will take it!) and no longer need the CPAP machine. The machine I used nightly is right there in the picture.

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