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.

I even fantasized about what would happen next. Would I keep the blog up so that even people who didn’t find the good news elsewhere would still have somewhere to look? Probably. I would update the BMS-Support Website with a banner and then plan a “coming out” party with all of my friends. Instead of the traditional “coming out,” however, it would be coming out of pain, coming out of the community of chronic pain sufferers, and celebrating for the millions of us who would finally have both an answer and a cure.

Alas, it was only a fantasy.

One to be placed with unicorns coming to frolic outside my highrise window and talking to birds. I would, of course, tell the grackles to get lost! ūüėÄ

So, back to reality and a day of working out, lunch with a friend, and spending a bit of time this afternoon scouring the Internet for any new research, findings, or hope to share with my partner in detective work, Dennis Sharpe. He is the guy who answers your questions on the BMS-Support Website, and if you have been helped at all by the site, give him thanks. And if you come across a study that is recruiting or scientific research that applies specifically to Burning Mouth Syndrome, let us know through the site. We may add your find to the information that is there for everyone!

Wishing you a low-pain day and a good week ahead, my friends.

 

Welcome to Burning Mouth Syndrome…Maybe

If you have found this blog, you are probably a Burning Mouth Syndrome sufferer or know someone who is. Perhaps you are someone who only suspects you have BMS and what you have read on the Internet so far is scary, disheartening, and often filled with errors and speculation. Let me set your mind at rest about several things…some will still be disheartening, but that is the reality of this under-diagnosed and often baffling chronic pain.

Burning Mouth Syndrome will not kill you. It is not fatal in itself, but unless people find coping strategies, medicines, and support, it can be as dangerous as any other chronic pain condition. If you don’t get medical treatment and support, chronic pain can lead to depression and even self-harm.

The hallmark of BMS is diffuse burning in the mouth and tongue with no visible symptoms. This means if you have lesions, cracked or geographic tongue, discoloration of the tongue or oral cavity or any other visible symptom…you may be barking up the wrong tree. It is possible to have Burning Mouth Syndrome that is caused by underlying conditions, and you will always do better if you treat those ailments first. Your BMS pain may simply disappear, and wouldn’t that be great? Continue reading

Eugenol, Nerve Injections, and BMS

Dental Injection

(c) Can Stock Photo / Nejron

A recent literature 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

Burning Mouth and the Humorous Pain Chart

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

Burning Mouth Syndrome – Perspective, Priorities, Progress

(c) Can Stock Photo / jjvallee

Perspective, priorities, and progress.

They are all connected for the chronic pain sufferer and can affect us both positively and negatively. The powerful thing about this dynamic is that unlike many things we are enduring, we can make a choice.

Your perspective is how you view yourself in relation to your condition.

Are you blaming yourself, whether logically or illogically for your pain? Many people think, “If only I hadn’t done this, or that, things would be different.”

I did this myself in the beginning, actually having dreams about saying no to replacing the caps on my front teeth. Saying no to the endodontist who cracked the root, the oral surgeon who did an unsuccessful apicoectomy, the antibiotics I had to take…oh Lord, it goes on and on. Continue reading

When Burning Mouth Pain Takes Center Stage

I have been battling oak pollen allergies since the beginning of April. We got a good rain for a day, and a small respite, but the levels are back up in the medium category today and I feel it.

Burning Mouth Syndrome is a foe I have been battling for ten years now (Mother’s Day will mark the 10th anniversary…Yay?) and I have noticed a pattern that arises when I am forced to take decongestants along with my antihistamine because nasal congestion is rocking my world. There is no doubt in my mind that the drying action of the decongestants, although needed and effective for the life-sustaining¬†action of breathing, also irritates the burning neuralgia of BMS. In spite of adding quarts of water to my intake, the pain has been nearly unbearable some days. When added to a string of migraines, triggered by sinus pressure, it has been a tough time.

I found myself looking forward to that next dose of Klonopin/Clonazepam so I could doze, even if I didn’t really have time to do that. To sit¬†in my chair, watching TV with my husband, and just drifting off to sleep where the pain was¬†not present was a gift on those high burning days. But what do you do when you have things to do, people to see, and responsibilities that are not subject to rescheduling? What do you do when there is a once in a lifetime event going on, and you can’t afford to miss it?

You power through.  Continue reading

Burning Mouth & Nothing New to Say

Ogg Rourke Wedding PartyI realized I haven’t posted since the holidays, and I could easily blame that on everything that has gone on…the wedding in November of our younger daughter went beautifully and just this month they surprised us with the house they are purchasing, our older daughter’s wedding approaches (so quickly!) in May and they have begun to build a house not too far away from us, and of course the day-to-day work of a being a busy philanthropist and volunteer!

Did I mention I am taking on another blog editing gig?? ūüėÄ Continue reading

Burning Mouth Holidays

canstockphoto13938130

The holidays are here and you are rushing around picking out gifts for those you love, preparing for travel or for travelers, and many of you may be under more stress than usual. As all of us who suffer from Burning Mouth Syndrome or other chronic pain conditions know, stress is not our friend.

What can you do to cope with the gulf that may exist between what you want to do and what you can do?

Press the pause button. Continue reading

Special Events and Burning Mouth

Both of our daughters are getting married. The younger’s wedding is just a couple of months away, and the older daughter’s wedding is next spring. Once in a lifetime moments happen, and you want to treasure every one of them, but your chronic pain companion will also be a guest at that special event and maybe you are wondering what you can do. Continue reading