Tag Archives: Neuropathic Pain

The Latest News – Burning Mouth Syndrome/Disorder

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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!”

Clonazepam ODT and Cymbalta for Burning Mouth

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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.

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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…

Effexor XR and Burning Mouth – An Update

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I reported in a previous post that my Neurologist had suggested that I try Effexor XR (Venlafaxine) in addition to my daily dose of Clonazepam/Klonipin ODT.

He started me with the lowest dose, and it didn’t seem to do anything so as we had agreed, he doubled the dose and I started taking it once a day.

I immediately came down with a head cold that turned into bronchitis and set everything on hold for a while. Now I have had a clear month at the higher dose and I have noticed something interesting. My daily dose of Clonazepam ODT has always been subject to some fluctuations due to flares in pain after dental work, abnormally dry air, or those elusive good days when the pain level isn’t too high, so it took about a week to notice the pattern.

I was not burning so much as tingling at the beginning of my pain cycle. I had been able to get by with one dose of Clonazepam ODT a day for a week.

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Cannabis and Burning Mouth Syndrome…Continued

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Many people responded recently to my post from 2018 on Cannabis for Burning Mouth Syndrome. They all had the same question I had back then, and that I still have today! Could it possibly help with the chronic pain of BMS the way it seems to help other chronic pain?

I wondered if there was anything new on the subject in four years and the answer was, as usual, not a lot. One small study was done on seventeen patients, and you can read it here. It is also posted on the Burning Mouth Support Website under “Research and Studies.”

As you can see when you read the abstract, they are guardedly positive about the effects of cannabis on BMS pain but acknowledge that the study is too small and that placebo controls were lacking.

“In this pilot evaluation, the C. Sativa oil provided was effective and well tolerated in patients with primary BMS. Further bigger and properly defined randomized controlled trials, with different therapeutic approaches or placebo control, are needed, however.”

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Burning Mouth Syndrome and Me

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Photo by Pixabay on Pexels.com

Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?

But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.

The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.

When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.

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Remission? Not So Much-Burning Mouth Syndrome

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My pain had been decreasing, and the distraction of helping others (always a good coping strategy) seemed to be making things even better. I took less medicine and reached for the cold water less frequently as I quenched thirst, not pain.

Then I had my yearly dental checkup and teeth cleaning this week, and although my hygienist was so careful and gentle, the burning is back. As I sit typing this, mid-morning, my tongue feels as painful as ever and my cold drink is by my side as much as possible.

I probably should have known better since I experienced remission once long ago, and it was not a gradual thing at all. I simply woke one morning in London with no pain. I thought the antibiotic I started before leaving on the vacation had worked, and celebrated that it was “over,” but I didn’t really have a clue that I was in remission at the time. I thought I was cured!

So, my Burning Mouth Syndrome friends, the journey continues. I will increase my dose of Clonazepam/Klonopin ODT slightly until this flare subsides, but will go back to the lowest dose as soon as it is possible.

I plan to keep searching and talking with you. I will stay informed by the Burning Mouth Support website as possible research and studies may lead to treatments or cures over time.

Stay tuned, and hold on to hope.

Is This Remission? – Burning Mouth Syndrome

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Gigi & Miles

Last month I speculated that diving full out into caregiving for my adorable grandson Miles had distracted me from my discomfort, leading to less medication because there was less pain.

This month continues this good streak of much lower pain levels, less dryness, and the lowest dose I have ever taken of Clonazepam/Klonopin ODT.

I am beginning to suspect a level of remission is at play here, and although I know from previous experience that remissions in Burning Mouth Syndrome can be of varying time lengths and may be quite temporary, I am going to savor each and every day of this one.

It is a pity that it is occurring just as the Covid19 Delta Variant has taken our area back to social distancing and masks, even for fully vaccinated people, but I am getting lots of time with our local family (Look how Miles has grown!!) and my husband and I would be taking these precautions for our little Cystic Fibrosis Warrior, no matter what.

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Am I Getting Better? – Burning Mouth Syndrome

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In May, I began a “job” again for the first time in about thirty years. I have been working as a volunteer all this time, but it was at my convenience and although there were busy times, it was not a constant or consistent routine.

Now I care for my five-month-old grandson who was diagnosed with Cystic Fibrosis at three weeks old. I drive to my daughter’s home by 7 AM each weekday morning and leave at 3:30 PM to beat the traffic home. (She and her husband work full time, right now at home but increasingly in their offices.) I feed him, change him, bathe him, play with him, and interact except when he naps. While he naps I help around the house with laundry, dishes, and preparing bottles. Now we are beginning solid food and that will be another adventure!

What does this have to do with my Burning Mouth Syndrome pain?

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