Category Archives: Burning Mouth Syndrome

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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Is COVID Over? – Burning Mouth Updated

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The last time we spoke, I was sharing my decision to ramp off the EffexorXR that seemed to be helping the burning mouth pain, but causing other side effects that cumulatively overwhelmed that benefit.

I ramped down under my Neurologist’s instructions – I can’t stress how important it is that you don’t just “stop taking a prescription!” Your body isn’t built to do that and you can cause yourself so much damage and pain that is not necessary at all! Even with ramping off gently, there can be a few side effects so please do this only under a doctor’s supervision.

I had just finished the last week of minimal doses and had discontinued the medicine when…(insert dramatic music here) COVID hit me like a ton of bricks!

Now those of you out there who have had it one or multiple times, or had mild cases of it are probably wondering, “What’s she making a fuss about?”

It was my first time. End of 2019-2020-2021-2022- and most of 2023 and I had dodged the dang bullet. I masked, I vaccinated, I distanced…and now at the end of 2023 I must have lowered my guard a tad too much, or even more likely, this variant is a sneaky one! We still can’t figure out where I may have picked it up because it was a pretty constrained weekend with family and no one else got it! Thank God for Paxlovid, because it had my symptoms under control in a matter of days.

Here’s what you came for:

What did going off Effexor XR do to my Burning Mouth pain?

What did having COVID do to my Burning Mouth pain?

What did taking Paxlovid do to my Burning Mouth pain?

Are we done with COVID???

I am so sorry to say that the answer to the first question is “Not a lot.” My burning is at a fairly moderate level right now and discontinuing the medicine did not change that much at all. I am still taking one dose of Clonazepam ODT around dinner time and that seems to be keeping me stable.

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Another Med Bites the Dust – Burning Mouth Disorder

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In recent posts, I have shared with you that Effexor XR has been helping my burning become tingling most of the time. Unfortunately, the dose that was most effective had too many side effects including a very noticeable muscular tic that made it look like I was shaking my head “No.” I had no idea I was even doing that until my husband showed me a video. So weird!

My Neurologist was on top of it, reduced my dosage by half and most of that went away. But not all of it.

Over time, I realized I was having excessive sweating after taking my dose each day, the muscular tic was still there, but with less movement and it became intermittent. I was also starting to develop muscular spasms in my feet, ankles, and quads. Some were quite uncomfortable and there didn’t seem to be any action on my part that brought them on.

At first, I thought it was a shoe issue. Inserts, new shoes, and a couple of different styles of shoes made no difference, and I had to look elsewhere. Effexor XR seemed to be a likely suspect, and I discussed it with my Neurologist. I told him the side effects were outweighing the partial relief I was getting and that I thought it was time to discontinue.

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Could Your Blood Pressure Med Affect Your Burning Mouth Pain?

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© Can Stock Photo / sCukrov

As you may know from reading some of my previous posts, I have been contributing to and following the Burning Mouth Support website for years.

I have learned much from it, and have helped to make it a resource for anyone suffering or caring for a sufferer of this disorder. There isn’t a lot of research out there, but what there is will show up on the Research & Studies page of the site for your use and to help you to educate your caregivers and medical professionals.

One of the latest things we found was a Clinical Case Report (Only 1 person!) on Burning Mouth pain as a side effect of a blood pressure drug called Lisinopril. Many people are on blood pressure medicines and it may be worth asking this question of your doctors.

“Are there any of my medicines that may affect my burning mouth pain?”

Even if it is an additive side effect (i.e. just makes your burning worse but didn’t cause it) you may find some relief by changing to another similar medicine. Some medicines can have dry mouth as a side effect and that if just adding kindling to the fire for those of us with Burning Mouth.

It is worth asking about, and the Burning Mouth Support website is worth checking into. You will find links to Support Groups on Facebook from around the world, Coping Strategies worth trying, and even a guide to the kinds of Specialists that can be helpful to you if you are searching for a diagnosis or help.

It’s a free resource thanks to Dennis Sharpe, and if you get a moment, thank him for his generosity!

Wishing you the best.

Who Can I Ask About Burning Mouth?

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I have been contributing to the BMS Support website for many years now, and I am seeing the beginning of a pattern in the research, studies, and conclusions of the scientific community over time. Does it definitively identify a cause or diagnostic tool for BMS?

No.

What it does do, however, is to suggest that our chronic pain may not be unique in where it originates.

We know there are structural physical changes that are detectable in the taste buds of BMS sufferers. We know that our saliva shows some changes, as well. We know that the hallmark of primary BMS is the lack of lesions, sores, geographic tongue, or any other visible features and that’s where it gets very frustrating. How do we tell our doctors that we are in pain when they see no evidence of it? How do we ask for medicines or treatments that may ease our symptoms? How do we explain to them in their language (medicalese?) that this is not an unknown malady and that no matter how limited, there are researchers out there who are looking at the linkages between unseeable inflammation of nerves and its effects on chronic pain?

It’s tough, but the BMS Support website is there to help you educate your health professionals. Links to the latest studies, abstracts, and reviews are there for them to peruse and we all can learn together.

Take a minute and click around on a site that volunteers have made and paid for to help you. If you know of studies or research that is not listed there (Please check!) just let us know! Dennis Sharpe puts in his own funds and many hours to make this resource for all of us and he can always use your help to find new information to share.

Burning Mouth doesn’t have a foundation to help fund research and no celebrity spokespeople to raise awareness. We have to make our own resources and be of support to each other on this burning journey.

Wishing you luck, and see you down the road…

Summer Heat and Your Burning Mouth

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© Can Stock Photo Inc. / AntonPrado

Summer has begun in Central Texas. Yay?

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:

  1. Getting plenty of sleep.
  2. 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!”
  3. 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.
  4. 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!

Why You Should Do Yearly Checkups – Burning Mouth

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Photo by CanstockPhoto-Ankabala

Yesterday, I spent some quality time with my Neurologist at my yearly checkup. We discussed my medicines (Effexor XR and Clonazepam ODT) and discussed how the mix had changed and whether I should continue on them now that I have begun my sixteenth year with this disorder.

Our consensus together was yes. Effexor XR has lessened my need for the Clonazepam ODT with minimal side effects at the dose I am taking. I start tingling within an hour after breakfast and that sensation increases in the normal cycle of primary BMS until late afternoon/evening when I take one low dose of Clonazepam ODT.

This serves two purposes. It interrupts the cycle of intense tingling so I get through my evening when it would usually be the worst, and it allows me to fall asleep easily and quickly. Sleep is painless for primary BMS sufferers and my body gets the rest it needs. The more rested and hydrated I am, the less pain and tingle I experience.

All of this routine can be completely upended during a flare (You folks with BMS know what I am talking about!), and I have the go-ahead from my Neurologist to increase my Clonazepam ODT dosage up to 2 milligrams if necessary. Even my worst flares have not required that much Clonazepam, but it is nice to know it would be okay if it did.

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Year Sixteen Approaches – Burning Mouth

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(c) Can Stock Photo / ragsac

May is Mother’s Day.

May is Cystic Fibrosis Awareness Month

And May will mark my fifteenth anniversary with Burning Mouth Syndrome this time around and the beginning of a sixteenth year.

I will celebrate the first with an ever-expanding family (Two more grandbabies this summer!) and commemorate the second by fundraising and supporting our little CF champion, Miles, but that third one is a bit more problematic.

Meanwhile, the stresses of life go on, as they always do, and as we juggle living in a small apartment while our condo undergoes flood remediation (A sprinkler pipe burst at the top of the tower in July!), two babies coming this summer and wanting to be there for both our new mom and dad and the existing family who is adding a second child, and knowing now that my 83-year-old mom is in her final year of life, stress has gotten to a new level. Care, hospice, and all the complications you can imagine are looming.

It’s a lot, but we will get through everything with as much grace and generosity as we can muster.

I am grateful for Effexor XR and Clonazepam ODT because without them my life would be a bit hellish. Effexor XR is still keeping my pain level to a tingle most of the day, and a small dose of Clonazepam ODT knocks out the pain as it escalates to its peak late in the day and helps me drift off to sleep where I experience no tingle and no pain. It is working for me and I will see my Neurologist next month to discuss any next steps we could or should take.

Is anything new with you guys on the burning mouth front? Let me know, and keep checking the BMS Support website. A dedicated volunteer is paying for that site and I just help him keep it up to date. If it has helped you at all, please let him know you appreciate it!

Best wishes to all of you, and to all of the Mothers, Grandmothers, Mothers-in-Law, and Mothers-in-Love out there, have a wonderful Mother’s Day.