As promised, here is an update on my Burning Mouth Journey and the latest thing I am trying.
You may remember my experience with Effexor XR/Venlafaxine and the muscular tic side effects that forced me to abandon it even though it had been very effective at reducing my burn to a tingle.
My primary Doctor suggested that I talk with my Neurologist about compounds similar to Effexor XR but that may have fewer side effects. My Neurologist listened, did some research, and we decided to try Cymbalta/Duloxetine at a very low dose and see if it made a difference. This was in addition to the Klonopin/Clonazepam ODT at .50 to 1 mg daily that I take to control the burning escalation.
I must admit that at 20 mg per day of Cymbalta/Duloxetine, I noticed no change at all. I passed this information back to my Neurologist and he prescribed 30 mg per day.
Recently, a reader in China asked an intriguing question. “Is there a diet for Burning Mouth Syndrome/Disorder?”
It was sad to tell him that there was no recommended diet that I knew about. However, there are some things that I have picked up over the years, both anecdotally and through personal experience, that I am better off avoiding.
I will share them here, but I also recommend keeping a pain diary. I have talked about this before, but when looking at potential irritants, intolerances, or allergies, it is of particular benefit!
If you are interested in learning more about pain diaries, there are resources on this blog that can help you. First, you must understand the pain scale and the ways it doesn’t really work for BMS Sufferers. Then, figure out what format works best for you and go to your next doctor visit armed with usable data, whether for diagnosis or continuing treatment.
Some basic tips for Burning Mouth Sufferers when it comes to food irritations:
Avoiding ultra-processed foods and sugars is always good, so definitely do that! In addition, here are some foods and other diet-related things that can be triggers for many people with BMS. 1. Intensely spicy foods. Go easy on the spice until you determine how much your sensitive mouth can handle. Many BMS sufferers are “super tasters” and react differently. 2. Sharp-edged snacks. Yes, I mean chips of all kinds, some nuts, and even pretzels can inflict little cuts in the mouth that aren’t very noticeable while you are eating but can give you a flare after the fact.
3. Chewing gum can help, but if it is sugared, you are bathing your drier than normal mouth with a sugar solution, and can lead to some dental challenges. I switched to Xylitol sweetened gum and perhaps you would like to try it. Xylitol makes your mouth very unfriendly to the bacteria that cause plaque, tartar, and gum recession but you do have to start small and work up to a complete change because Xylitol can cause loose stools until your body adjusts. 4. Low hydration levels. Our mouths hate being dry so consider yourself “putting out the fire” with frequent drinks, whether cold or hot, and in general, water is my go-to! 5. Suspicious that something might be problematic for you? Keep a pain log and you will begin to see a pattern of certain foods or activities that cause your pain to be more intense. Then you can not only moderate your intake or behaviors but you will also have data to share with your medical professional.
I look forward to hearing your experiences and recommendations and do check into the BMS Support Website for more coping strategies to help you in your Burning Mouth Journey.
As usual, when you look for research on Burning Mouth Syndrome or Disorder, you don’t find a great deal. When you do, it is often limited to very tiny numbers and scope and can be conflated with Trigeminal Neuralgia, Sjogren’s, and other syndromes that may have some symptoms in common with BMS.
But they are not BMS. There is no diagnostic tool, a blockable nerve, or specific medicines for BMS. There just isn’t.
We know statistically that the most affected group of BMS sufferers are older women. That is a fact.
We know statistically that many women who are affected are peri, pre-, or postmenopausal. That is a fact.
We know, too, that this correlation (Note that I do not say causation because that has never been proven.) has not served older women well. Often older women are shunted off into the “change of life” box in medicine and their complaints are not taken seriously.
The end of the year approaches and many of you are squeezing in those last yearly checkups. Don’t forget your teeth and mouth! I know that Burning Mouth can make dentist visits a bit more difficult but remember your mouth may be much drier than normal and dryness leads to more bacteria growth, which leads to decay.
Not kidding.
Saliva usually washes bacteria away as a natural process, but when there is less saliva, those bacteria can park and enjoy a picnic on your teeth. Decay, infection, abscess, gum recession, and disease can result and have you in a dentist’s chair longer and more often!
One strategy I have found to inhibit bacteria growth in my mouth is to use Xylitol (made from birch bark only) as my sweetener of choice. Click here for more information about Xylitol.
My personal strategy was to substitute Xylitol for my regular sweetener slowly. It can cause some side effects gastrically, so adding it gradually bypasses much of that reaction. I also gradually substituted Xylitol gum for my regular mouth-moistening chew.
I have written before about Effexor XR/Venlafaxine HCI, a medicine my Neurologist recommended since it is one of the few meds out there that I haven’t tried!
Up to now, the only thing that truly lessened my escalating burning neuralgia wasClonazepam ODT, and the side effect of that, as those of you who have tried it know well, is drowsiness.
I found over time that I could control the timing of my doses and coordinate caffeinated drinks (coffee in the morning, iced green tea until noon) to ward off daytime drowsiness. It was working okay and I was able to function. When flares arose (mostly after dental work of any kind) I could increase the dosage and the caffeine. Life was continuing to be workable.
Effexor XR/Venlafaxine HCI is an antidepressant, and my neurologist started me out with a minimal dose of 37.5 mg once a day. I had no discernible relief from it at that level, so we doubled the dosage to 75 mg once a day. At that level, I was experiencing some relief (The burning became more of a tingle that would intensify through the day until I took the minimum dose of Clonazepam ODT around dinner time.) but it wasn’t knocking the BMS out.
I have discussed the power of communication before when it comes to managing chronic pain. Realistic representation of your pain levels, educating new specialists about Burning Mouth Syndrome, and even sharing with family and friends about your condition; what helps…and what doesn’t.
We have discussed counseling and therapy and I highly recommend it if you can find and afford it. It will give you a listening ear from a professional who has “no skin in the game.” You cannot overwhelm them with your frustration and pain, or frighten them about your reactions to it. You cannot express any emotions that they have not seen before. They are required to have professional boundaries, and short of your expression of the intent to self-harm or harm others, they will actively listen and then give you some ideas of how to handle these emotions. It’s a gift you give yourself.
But, you say, “I can’t afford that.” Or, “I don’t want to open up to a stranger.”
We have covered a bit of this ground before, and again I urge you to communicate, take the rest (and medicines) you need, and use your coping strategies to get through the stress of the holidays.
Things have loosened up and you may be putting family events together, gathering to open gifts, and doing things you haven’t been able to do for a couple of years. It can be hard to get back into the swing of things.
Presents? Oh, don’t get me started! The logistics of getting everything to everyone with the uncertainty as to whether things will get there in time…
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!
I shared the good news with you in one of my last posts that the Effexor XR at 150 mg per day had lessened my burning into a tingle that did escalate through the day but was easily tamed with .50 mg of Clonazepam ODT around dinner time.
I was so happy and just waiting to see if this would hold or if something would change.
As with nearly everything I have tried against this burning neuralgia, something did change.
My husband started noticing a couple of weeks ago that I had begun shaking my head in little “no” movements when I was engrossed in a TV or computer show and it increased as time went on. He mentioned it to me and I truly had no idea I was doing that. It only happened when I was watching TV, whether on the big screen or my computer or reading at night and I felt nothing unusual. He videoed me when I wasn’t paying attention and I agreed, it was a definite involuntary movement.
A Burning Journey 