Hide No Longer – Burning Mouth Syndrome

BMS-Support-Website-Home

Yesterday, an old friend reached out to me through Facebook and said she had a friend who was having a “burning tongue,” and she remembered that I had said something about that at some point.

Yes, my friends, this is how awareness often happens.

Lacking a celebrity spokesperson or fatalities directly related to BMS, this is the grassroots, person to person, story by story way that we raise the profile of this life changing syndrome and accomplish two goals.

We make people who suffer from it aware that there is a resource out there for them and we make it a bit more attractive to researchers who may see increased benefits in studying it.

Drop by drop, we add our experiences and pain into the stream of information about BMS, and gradually that flow increases until the river of our experiences becomes something that cannot be ignored and we will encounter fewer and fewer medical professionals who have never heard of Burning Mouth Syndrome and had no idea it was “a thing.”

What did I do when my friend reached out to me regarding another friend?

I reached right back, reassured her I would be happy to speak with her friend and pointed her to the Burning Mouth Syndrome Support website where her friend will find information, encouragement, and even coping strategies to help her deal with her pain until she gets a diagnosis and medicines that may help.

If you are a BMS sufferer, don’t hide.

You never know what fellow traveler through this burning mouth journey may need you and the hard-won knowledge you have collected.

 

 

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A Little Progress…But Not With BMS

Migraine Headache PainIn a recent post, I talked about my upcoming visit with my neurologist.  You can read that post at Burning Mouth & Neurologists.

The meeting went fine, and as I expected, there was nothing new for Burning Mouth Syndrome. He refilled my prescription for Klonopin ODT and I will continue my present therapy, which has helped better than anything else I have tried.

I mentioned in that post that I was going to ask about the migraines that I have been having at a rate of 8-17 per month for about sixteen years. He told me that the Botox therapy has improved, and offered to check into insurance pre-approval for that procedure, but also said there was something new that I could consider.

Pharmaceutical companies have seen the handwriting on the wall for a long time now, as America’s baby boomer generation ages. They have been researching medicines to address the aging brain, and over time, have come up with meds that help with Alzheimer’s symptoms and senile dementia.

One of these (Memantine – also known as brand name Namenda) has an interesting effect of reducing the actions of chemicals in the brain that may contribute to the symptoms of Alzheimer’s disease.

“Memantine is an N-methyl-D-aspartate (NMDA)-receptor antagonist. It works by blocking an excess activity of a substance in the brain called glutamate, which may reduce the symptoms associated with Alzheimer disease. Memantine is not a cure for Alzheimer disease.” –Drugs.com

It can also be used for other purposes, and one of these may be migraine prevention.  Continue reading

Weighty Decisions – Life with Burning Mouth Syndrome

img_4278Our younger daughter just got engaged.

It was a dream proposal (at the highest lookout of Kauai’s Waimea Canyon) and it will be a dream wedding next fall. They are wonderful young people who have loved each other for nearly seven years, and the next stage of their lives together is right around the corner!

I, like many of my fellow Burning Mouth Syndrome (BMS) sufferers, have put on weight from the stress of chronic pain and the transient relief of eating. I have resolved to change that trend, both for my health and to feel better about myself.

It will not be easy.

I have been a yo-yo dieter since puberty, and my weight has gone up and down the scale over the years, but since this bout of BMS that started May 2008, it has only gone up slowly, surely, and with consequences to my blood sugar and blood pressure. I have kept exercise in the picture, but this last year or so I have ramped it up to three one-hour sessions a week with a personal trainer to combat my natural inertia.

The results?

I am in better shape, but still too heavy. It takes more than just exercise, my friends. It takes a better diet and quite frankly, for me it takes less food. Because food feels so good to me as a BMS sufferer (pain stops and eating is satisfying), I eat too much of it.

What do you do instead? Continue reading

The Selfish Side of Pain?

Woman Journaling in Pain DiaryI have been writing about Burning Mouth Syndrome (BMS) for years now, and recently a reader reached out to me and said she had been dealing with this chronic pain for over fifteen years. She had read one of my blog posts and has been keeping a pain diary for the first time ever.

“Hallelujah, sister!” I wrote.

“I hope that you find a pattern or a clue to better coping strategies and that you share your data with your doctors so they can help you find alternative therapies or medicines. Your pain diary may reveal that some work a bit better for you than others.”

She responded that she was happy to have “something concrete to do about BMS,” but was dealing with an unexpected side effect. She was accused of being selfish by her children and is not being supported by her husband in this effort.

Her family was perceiving the time she spent journaling her pain as “selfish,” and time that they deserved her attention.

Has this ever happened to you? Continue reading

Burning Mouth & Neurologists

Doctor Appointment for Burning Mouth SyndromeIt’s just about time for my yearly check-up with my Neurologist. I refer to him as #3, since that is how many I have gone through in over 8 years of dealing with Burning Mouth Syndrome (BMS).

Yes, you read me correctly…I am now at yearly check-ups.

You see, after 8 years I have tried just about everything there was to try, both mainstream and alternative, targeted and tested, and experimental or off-label. It is daunting to look back over my medical records and see that huge pile of things that have not worked.

In the end, the Klonopin/Clonazepam ODT has been the only thing that has reliably helped to control my pain.  I dissolve 100 mg on my tongue and swish it around before swallowing at mid-morning and unless it is just a bad burning day, I am at a minimal to tolerable level all day and evening long. A nap in the afternoon seals the deal, and I can even get a day without much pain at all and a pain-free evening!

Does this mean I am out of pain? Continue reading

Coping With Stress and BMS

09a9aa5c07898aca806cc27863f79d20As you know, I have been dealing with Burning Mouth Syndrome for far longer than I ever thought possible.

I know there are those of you who are entering or have passed your second decade with this chronic pain and my heart goes out to you.

All of us who have dealt with BMS know that stress just makes it worse. We have seen the pattern again and again, and yet, life goes on.

I have decided to run for a local, elected office.

No stress there, right?

The urge to make a difference and be of value has trumped my hesitation to put myself out there and add stress to my life…so how will I handle it? Continue reading

BMS-Your Invisible Companion

2016-6 Tulsa 40 Reunion 4I ran into an old friend the other day, and the first thing she said was, “You look great! Is the Burning Mouth gone?”

Those of you who suffer from this mysterious chronic pain (or others like it) know exactly what I felt in that moment.

In a flash, you decide whether to tell this sweet, well-meaning person that, “No it hasn’t gone away, but thank you for asking.” (Potentially opening yourself up to a protracted conversation about it, right?)

OR

“I am feeling much better, thanks!”

Why would you say the second response? 

Because you are tired of pity, tired of explaining that chronic pain is chronic and that even though you have battled this dragon for months, years, or decades, it has no end in sight. You are bored by endlessly explaining BMS and you fear domination of yet another conversation with “your problems.”

I get it. Continue reading