Tag Archives: BMS

15th Year Begins – Burning Mouth Syndrome

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Photo by Alexander Schimmeck on Unsplash

Yes, Mother’s Day is this weekend and each successive holiday is a combo pack for me.

On one side, there is the great joy we take in our wonderful daughters and the special families they are both creating. Feeling appreciated for the love, time, energy, and creativity I invest in them, and an added bonus this year of a precious grandson who is still trying to pronounce “Gigi” and who gives me gorgeous, gap-toothed smiles and amazingly strong hugs.

On the other side, there is the 14th anniversary of this go-around with Burning Mouth Syndrome. The 15th year begins the day after Mother’s Day with no end in sight.

There is nothing else like this in my life and it has had effects that I am probably not even aware of yet. Experts say that the body remembers trauma, whether mental or physical, and it may be surprising to see what outcomes await those of us who deal with chronic pain for years or even decades.

So, what did I learn this last year?

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Sleep Apnea and Burning Mouth Syndrome Update

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Photo by missyredboots

About two years ago, I wrote a post about Sleep Apnea and Burning Mouth Syndrome.

Since then, a couple of dramatic things happened. A third occurred more slowly and was less dramatic, but more long-lasting.

First: I received this notice and an accompanying notification from my sleep apnea specialist that encouraged me to enroll myself in the recall website and to add an additional filter mechanism (that I could buy on Amazon) to protect me from the particles the machine could be spewing into my lungs.

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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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To Boost or Not to Boost – Burning Mouth Syndrome

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Boosters have been approved and recommended by the CDC, the FDA, and my Doctor.

My 82-year-old Mom got her Pfizer booster as soon as they were approved and after a day of the usual side effects, now feels much safer as she joins her girlfriends for lunch out now and then. Moderna and Johnson & Johnson were next up! Moderna was a half dose, so I went with my Doctor’s recommendation and got the Moderna booster. I had more of the side effect reactions with the booster than I did the second initial dose. Fever, chills, reddening of my injection site area, and swelling of the lymph gland under the injected arm. Not fun, but it gave me a tiny glimpse into how debilitating full-blown COVID could have been for me and this is without any lung symptoms!

I have lung damage from chronic bouts of bronchitis, and that was part of what worried me about getting COVID19 personally. I was not sure my lungs would make it through the damage that the virus can cause.

Now I will not worry as much about that.

People ask, “Does this mean you won’t wear a mask anymore?”

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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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Burning Mouth In the Time of Covid 19

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If you are here, I assume you know what Burning Mouth Syndrome is, that no one knows exactly what causes it and that there is no cure. If you don’t, this blog is full of descriptions and you can also check out the BMS Support Website.

If you are here, you are probably a BMS sufferer or knows someone who is. This blog is not usually a casual stopping place out there on the Internet.

I’m going to assume that you know about Covid 19 and the global pandemic it has set off and the fact that people with pre-existing conditions are more at risk for severe cases of the illness and even for death.

Is Burning Mouth Syndrome a pre-existing condition that could put you more at risk? The short answer is that if it is primary (in other words, there is not an underlying illness that is causing it), probably not. However, we do end up in doctor’s offices more often and in a world that is avoiding as much contact as possible with other people, and particularly contact with sick people; that is causing a stressful situation for us.

Have you skipped a trip to your Neurologist or Pain Specialist yet? Continue reading →

Sleep Apnea and Burning Mouth Syndrome

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Life has decided I needed an additional challenge and so sleep apnea is joining Burning Mouth Syndrome now that I have conquered my chronic migraines with Aimovig injections once a month.

Sleep apnea affects so many people (An estimated 22 million in the U.S.) with 80% of those undiagnosed and therefore, untreated. Sleep apnea affects many systems in the human body, as laid out in a 2017 article from Science Daily, researched by John Hopkins Medicine. The harmful byproducts of this stress on our bodies are documented, but I found myself wondering if there might be any link with chronic neuropathic pain conditions like Burning Mouth. I can keep wondering since there are few studies and as usual with BMS, they are quite small.

However, here is what I found: Continue reading →