When Contemplating a Flare – Burning Mouth

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Over the last few posts, I have kept you up to date on my new medication, Effexor XR/Venlafaxine HCI.

My Neurologist initially prescribed a very low dose with no effect. We doubled it and saw the burning neuralgia back off into a tingle for most of the day. We doubled it again and got amazing relief that lasted all through the day, keeping the pain to a very tolerable tingle. Then the side effect of muscular tics began and we had to cut that little honeymoon short.

The upshot?

I am back on that medium dose of 75mg per day and I usually have just a light tingle that escalates. Sometimes I can skip that late afternoon dose of Clonazepam ODT, but other days I need it to blunt the tingle that is becoming too strong. I haven’t had a real flare yet with Effexor XR so I am unsure whether that means it is preventing them, or the stars just haven’t aligned yet. I will let you know because the ultimate test looms ahead!

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Continuing Effexor XR for Burning Mouth Pain

Burning Mouth Cloud

My last post let you know that my Neurologist had prescribed Effexor XR to help with my burning neuralgia.

At 37.5 mg, per day there was no discernible effect. We went up to 75 mg.

After a while at this level, I noticed that the burning had become more of an intense tingling for part of the day. I reported this to my Neurologist and he suggested we double the dosage.

At 150 mg I began to notice that even the tingling was lessening for most of the day. Some days it was hardly discernible until late afternoon when it would sometimes get too intense and I would need one dose of Clonazepam ODT .5 mg to control it. (I am approved for up to 2 mg of Clonazepam a day, so this is a small dose.)

I reported these changes as I approached a month of the 150 mg dose, and asked what he would recommend. He responded that we should give this dose another month and see if accumulated time makes any additional difference. I agreed, and so this is what we are doing!

After over fourteen years of Burning Mouth pain, tingling is a blessing. Is the pain all gone?

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Effexor XR and Burning Mouth – An Update

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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The Current Covid Variant and Burning Mouth

Stuff That Works – Burning Mouth – Read about it below!

If you have been following the news, you know that most current cases of Covid, including reinfections, are the Omicron BA-5 variant, which has two faces for us. The good face is that it is not as virulent and fatal for most people. Note I do not say all. The bad face is that it is even more infectious than measles and doctors note correlations between accumulated injury to the body and long Covid symptoms with reinfections. For those of us with the chronic pain of Burning Mouth, the prospect of adding another layer of symptoms or exacerbating the ones we have with hacking coughs and congestion is daunting.

Interested in learning more? NPR explains it here very well.

Our immediate family has remained relatively unscathed from Covid. Our younger daughter and her husband who live in another state got it, but our daughter is a front-line healthcare professional and they are both somewhat frequent travelers, so that was probably unavoidable. They are young, healthy, and did okay since they were fully vaccinated and boosted, but it wasn’t a pleasant experience.

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Cannabis, Virtual Reality, and Another Option – Burning Mouth Syndrome

I had my yearly sit down with my Neurologist yesterday and after discussing my migraine treatment with Aimovig (100% effective, BTW, but getting very pricey with my husband’s new insurance.), we moved on to Burning Mouth Syndrome.

He asked how my pain was, and I said, “The same as usual. I achieve tolerable levels with 1 mg of Clonazepam/Klonopin ODT spread between two doses, and if I have a flare, I take an extra .50 mg to deal with that and try to get a nap.” He shook his head and said, “I have reviewed your file and you have tried just about everything out there, but there is one that I noted you haven’t tried and I think it might help. It went generic in 2006 so it isn’t outrageously expensive and you can safely try a low dose with your present meds and see if it has a good effect. I would like to get you out of pain if it is at all possible.”

Well, to be frank, this is what you want to hear from your specialist. I said I had some questions about other treatments before I jumped into another drug tryout and he sat back and listened intently.

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Remission? Not So Much-Burning Mouth Syndrome

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

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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Year 14 Begins – Burning Mouth Syndrome

In addition to celebrating my first Mother’s Day as a grandmother, I am sobered by the fact that this begins my fourteenth year of Burning Mouth Syndrome.

Gigi & Miles!

I never imagined when this journey began that it would last so long and would affect my life so much. Each year at this time, I review and see what I have learned, whether there has been any improvement in my pain, and evaluate how much I have been able to help others who are not as far down this road. I have kept up with the research on the BMS Support website and respond to comments on this blog regularly, and it feels like those are helpful things to do.

2020 was a challenge for everyone. The COVID19 pandemic took the chessboard we usually move around on and tossed it in the air. Sickness, Death, Lockdowns, Masks, Respirators, Ventilators, PPE, Social Distancing, and more, all became a part of the pandemic landscape and our new vocabulary. The folks who dealt with chronic pain and illness had to find a new level of coping skills and count ourselves lucky that it wasn’t worse if we were able to avoid COVID.

2021 started out very hopeful with the advent of incredibly effective vaccines, but the rollout was uneven and slow, frustrating even the most patient of us. Then the variants began popping up around the world, inevitable but scary, and things were made even more chaotic as disinformation spread and vaccine hesitancy became a thing.

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Burning Mouth Fantasies

canstockphoto67880648-Marisha

(c) Canstock photo/Marisha

A friend asked the other day how I was doing. Was the burning any better? Had they found any cures?

I assured her that all was the same. I am so grateful for the efficacy of Aimovig in controlling my migraines, but it has, as expected, done nothing for Burning Mouth Syndrome (BMS). The Clonazepam ODT I take twice a day keeps the burning at a level where I can function and only occasionally do I have a flare of a day (or three) where nothing seems to touch the pain level much and staying very hydrated, sleeping and being quiet are the only coping strategies that get me through the day(s).

After we spoke, however, I found myself in a fantasy where I typed the amazing title of a blog post. “Burning Mouth Syndrome Cure is Here!” I was delighted as I daydreamed about a day when we would all descend on our doctors in droves, eager to start the totally fictional therapy that would break us out of the bars of this chronic pain prison. I imagined how gleeful I would be to write that very last post in my “Burning Mouth Journey” as I sent people on to pursue their cure and closed this shop up once and for all. Continue reading