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.
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.
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.
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.
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.
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 →
A 2003literature review article stated researchers were connecting eugenol and other dental pain relievers, nerve injections, and possible damage to the lingual nerve with Burning Mouth Syndrome. Take a look and see what you think, but I have long suspected a link between dental work, oral surgery, and eventual extraction of my front teeth to the resultant burning mouth pain I have suffered for over a decade.
This is not, of course, the only cause possible. There are many people with BMS who have not had dental work done near the time of onset and so other factors must be in play.
When I read this, I looked up eugenol because I had never heard of it. To my surprise, I found it is found in clove oil, cinnamon, nutmeg, and bay leaf but by far the most common use of it is in dental work. When eugenol is used in dental preparations such as surgical pastes, dental packing, and dental cement, it may cause contact stomatitis (cutaneous lesions) and allergic cheilitis (inflammation of the lips). The allergy can be discovered via a patch test.
I do not recall ever having an allergy patch test done by any of my dentists or other specialists. If you suspect it might be a culprit in your BMS, it is worth asking about.Continue reading →
A friend shared this image today on her Facebook page.
It caught my eye because as chronic pain sufferers, we get asked about our pain level all of the time by a variety of specialists. Burning Mouth Syndrome is a novelty to some doctors we encounter, and a pain chart helps to accurately convey the level of pain you experience and how it affects or inhibits your daily activities. Often it is a range, and with BMS, this is particularly true because our pain escalates throughout the day unless we find coping strategies or medicine that provides some intervention.
This “improved” version adds a bit of humor to the pain scale (bees,bears and ninjas?), but also makes the point that if you are truly at the top-level of pain (10 is the top!) then you are incapacitated or have been rendered unconscious by the level of pain and medical intervention is required immediately.
I was surprised by the comments that accompanied the image. Some laughed, but others were angry, feeling that the image was mocking their pain. Some even took the scale to task for not having enough numbers, because their pain was “at least an 11 or 12!” Others berated the creator for not including labor, even though that is a pain that only affects one gender.
Pain is affected by many factors, and each person’s tolerance and perception is individual but we must be consistent and coherent when talking about our pain levels with medical professionals. Some of the comments came from people in the medical profession and they gently mocked people who claimed they were experiencing a 10 level of pain but were “casually talking on their phone and eating chips.” Continue reading →
I outlined my experience with Klonopin/Clonazepam ODT Dissolving wafers and how much better they seemed to manage my pain. This is still the case, but I wish I could tell you that I was completely out of pain, or better yet, in remission. Neither is true, unfortunately. I have good days and bad days, but fewer bad days than I used to.
A couple of months ago, I became curious about these bad days. They had become more sporadic, but why? What was different on those days that made my usual therapy nearly ineffective? Continue reading →