For years, I have lived with my tongue inexplicably swelling and/or burning. The swelling and burning progressively got worse, culminating in a daily painful occurrence. Back in Colorado, I worked with an allergist and tried eliminating a host of foods from my diet in an attempt to identify the trigger(s), all to no avail. Sometimes my tongue would swell or burn with no foods. At times, it could be very painful. I have been told I have a geographic tongue by many doctors, but this does not explain the swelling, burning, and pain. As the years went on, the search for an explanation and relief continued.
When I moved to Texas, my first gastroenterologist suggested we do a blood test for C1 esterase; she suspected the swelling was somehow tied to angioedema. Low levels of C1 may cause certain types of angioedema. It came back abnormal, but barely so we tested again. The second test came back normal, but barely. Still she ruled out hereditary angioedema. So I was back to the drawing board.
Fast forward to my new mast cell activation syndrome (MCAS) specialist I met at the end of 2021. When I was going through my extensive symptom list, I happened to mention my tongue issues. She knew straight away what I had: Burning mouth syndrome (BMS). I had never heard of it – even though years before I had read Dr. Afrin’s book, Never Bet Against Ocam. In his book, he actually mentions BMS but somehow I missed it – I am still kicking myself for that.
So what is BMS? According to Cleveland Clinic it is also known as burning tongue and is a “condition where your tongue and roof of your mouth feel like they’re burning.” For more information, check out: Burning Mouth Syndrome: Causes, Treatment & Symptoms (clevelandclinic.org).
I unknowingly have tried natural recommendations for BMS. For the past few years, I have essentially removed spicy food from my diet and I barely drink alcohol. Despite removing these two big items from my diet, it didn’t improve my tongue situation. I even went as so far to find toothpastes that didn’t have sodium lauryl sulfate (SLS). Again it didn’t make a difference to my tongue.
When I learned I had BMS, based on my reading, the best pharmacological solution was orally disintegrating (ODT) clonazepam. I had taken ODT clonazepam in the past and my body had tolerated it so I was keen to try it again specifically for my tongue. I spoke to my neurologist at an appointment in 2022 about the diagnosis and the medication and she was on board prescribing it. Every time my tongue severely swells or burns or becomes very painful, I place one ODT clonazepam on my tongue and swish it around if the swelling/burning/pain is diffused or leave it in one spot where the swelling/burning/pain is. Within minutes, the pain decreases and sometimes the swelling too. This has been a game changer for me! Since starting the medication, the amount of swelling episodes has even decreased. Be aware that in the U.S., clonazepam is classified as a schedule IV controlled substance, so some doctors may be reluctant to prescribe it; on the flip side, some patients may be nervous to try it. I am not hooked on the medication and have found that it does not make me drowsy (a possible side effect of clonazepam). But again, medications impact people differently.
I still shy away from spicy foods and alcohol as they definitely still aggravate my tongue. Sadly besides these two known triggers, the rest of the episodes have no identifiable causes. But at least now I have some relief and a diagnosis behind what has been causing all this swelling, burning, and pain for years. What’s one more diagnosis to my already lengthy list of bodily dysfunction?!
I have subsequently come to learn that BMS can be associated with Sjogren’s because of dry mouth. So this is probably something any one of my rheumatologists should have caught over the years but did not. Be aware, my Sjogren’s friends! While the diagnosis of BMS did not change my life, it did lead to ODT clonazepam for which I am grateful. So as 2022 recently came to an end, I reflected on another year that was again mostly horizontal, but I am appreciative of the small things like this ODT clonazepam win. Here’s to hoping for more wins in 2023! #sickbutstillsassy #Sjogrens
autoaylie 