Winter is not even close to over and the entire nation has had a big dose of icy temperatures, slippery roads, and overworked heaters. Heaters and furnaces do a good job of keeping us warm (when they work and you are not having rolling blackouts) but they also turn the air we breathe dry as the Sahara on a hot day.
Dry air and dry tongues are anathema to Burning Mouth Syndrome (BMS) sufferers and can increase our burning sensation and even bring on flares that take time to subside.
What can we do?
Humidity is our friend along with hydration. Feeling pain? Drink something soothing. Lips getting cracked and dry? Vaseline or something like it is very efficient at holding moisture in your tissues, but seriously, this is a sign you need to add some moisture to your air.
Humidifiers are a possibility, but you can also boil water on your stove, leave your bathroom door open and the fan off when you shower and open the dishwasher when it is done to let your dishes air dry. All of these will add ambient humidity and may make your BMS a bit more bearable.
Nighttime can be the worst, particularly if you breathe through your mouth when you sleep, and a humidifier in the bedroom is a possible solution, but be sure to maintain it and keep it clean.
Wet washcloths left to dry naturally can also help put some moisture in the air. You can even leave bowls of water out to evaporate. Some DIY hints can be found in this article. It also points out safety hints that are very useful.
Keep drinking, my friends, and make sure you are as hydrated as you need to be to keep pain levels manageable and replace those fluids you are losing to dryness.
Remember, Spring is right around the corner! Right? It is, isn’t it???
A Burning Journey 
I almost new BMS …exhausted and discouraged ….not anywhere that advice and help is available so learning myself on-line about how to cope.
Thank you sincerely for this information. It’s a lonely struggle !
Marena
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Marena,
I am sorry you have joined the Burning Mouth Syndrome sufferers, but glad you are reaching out and educating yourself. The BMS Support website (click on the burning mouth image in the sidebar of this blog) has coping strategies, the latest research, and some very practical advice on finding a doctor, keeping a pain diary, etc. I hope you find it helpful. How long have you had BMS and do you have any idea what caused it? Are there any coping strategies or meds you have tried that seemed to help?
Kalí
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Your kind reply brings me to tears.
I had root canal repair at the end of October. Shortly after all hell broke loose. It has been 4 months of burning lips, throbbing tongue, and a” tinny” taste in my mouth…I can feel what I call tiny blisters…the dentist can’t. Blood work by GP is fine, for which I am grateful.I am 75, on no meds at all, and in disbelief….with no professional here in Regina knowing much at all about this. I am most grateful for your listening ear.
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Marena,
I am not sure where Regina is, but if you can find one, a Neurologist might be the best doctor you could see. There are a couple of meds that help many people and he or she will know about them. Your coping strategies aren’t bad, but there are more things you can try listed on the BMS Support website. The website is on the right side of the blog, with a picture of a mouth in flames, but you can just go to https://www.bms-support.org/ and you will find lots of information. Let me know if I can be of any further help.
Kalí
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In answer to your kind questions
Very little alcohol
Tooth paste, mouthwash changed
No spicy food.
Coconut oil, petroleum jelly on lips
Occasional tylenol
Walking
Keeping distracted
Extra sleep
More vit D
Thank you.
Marena
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Thank you, Kali.
I will ask my gp about a neurologist. I’m not keen to go on anti-depressants. But am I ever discouraged. It is so helpful to meet someone who knows what this is like! I look ” normal.” Regina is in Saskatchewan in the centre of Canada. Do you believe that this condition is emotionally driven? Do I need therapy? Thanks so much for being there.
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Marena,
I am glad you will talk with a neurologist. He or she may not recommend Klonopin/Clonazepam for you, but it is the only thing that has consistently kept my burning pain to a bearable and sometimes even barely noticeable level. I use the orally dissolving wafers and melt them on my tongue, swish it around so any topical benefit is realized, and then swallow. My dose is very low but I can add to it on those very bad flare days if I wish. Your doctor may also talk with you about Neurontin/Gabapentin since it is the other med that Miriam Grushka and her team identified back in the early 2000s. (You can find her study in the research on the BMS support website.) I tried Neurontin and for me, it was not as helpful as the Clonazepam and had more side effects – but everyone is different.
Normal is the hallmark of Burning Mouth Syndrome. The tissues in your tongue and mouth look perfectly normal, despite burning all day long. It is frustrating, as you have experienced.
This brings me to your last question. I have read a lot of things where people attribute their burning to an emotional shock or trauma but I must admit that was nothing I experienced. I had dental work and surgery and that is when my burning began and expanded from the oral cavity and back of the throat to the tongue. I had no depression until I had burned for no observable reason for YEARS. But that was my case, and yours may be different.
Therapy is never a bad idea with a good counselor if only to have someone to vent your frustration and sadness with, and often they have suggestions for good stress coping strategies you may not have considered. I went to one for a while and found it emotionally helpful (I could complain and not put stress on relationships with my family or friends.) but not particularly helpful physically. We had sessions until she told me I was handling it as well as she had seen anyone handle chronic pain and that I was welcome to come back any time I needed her, but she didn’t think I need any more counseling. Reassuring, and it is great to know she is there if I ever find it totally overwhelming.
It’s a pleasure to help in any way I can, Marena, and I bet Regina, Saskatchewan is beautiful!
Keeping you in prayer for relief and healing,
Kalí
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Thank you, Kali, for your sharing and encouragement.
I think my BMS was triggered by oral work and is now feeding on my emotional state. I would be on a plane to see Dr. Grushka in Toronto if I could.
Her waiting list is 6 months!
Have you heard of Dr. Susan Sklar in CA? I found her info online and watched her lecture to some dentists on YouTube…and another recent one. I am impressed by her knowledge so I booked a zoom…I will report back if I think it might help others. Thank you again for your kind support. It helps my attitude! Yes, Regina is pretty…bit chilly but lots of sun. And spring is on its way! Keep safe!
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Marena,
I will be interested to see what you think of Dr. Sklar. I noted that although she did not care for anti-depressants in general, she pointed out the Klonopin/Clonazepam Orally Dissolving Tablets (ODT) as an exception and that some people had benefited from it. (https://www.sklarcenter.com/blog/burning-mouth-syndrome-hope/)This is the only thing of all of the things I have tried that does help me.
I have not tried any hormone replacement since menopause, but my BMS appeared many years before menopause, so I am unclear if that would be of any assistance and in the US there is so much fraud and misinformation that swirls around some holistic practitioners that I am wary. I will welcome your observations!
Kalí
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Hello, Kali,
Well, I have had a zoom session with Dr. Sklar. She is very personable. I did not get the feeling she had actually looked at my medical records before the session. I don’t think that I learned anything more than what I had heard in her 2019 youtube presentation to a dental conference….that the source of BMS remains a mystery although one can have a field day sifting through one’s Life, trying to pin-point The Cause !…and that there are a lot of things out there that good folk are trying. Of course, she could not treat me with anything, given I am here in Canada…and I did say I was not really interested in hormones. She did not insist….or wish to explain the hormone path. I am concluding that my age might not make me the best candidate for such therapy in any case. What did I learn…not much other than all I have read? I did learn that Vit D is considered a hormone. I would like to investigate more fully the safe quantities I might take. I am now considering a session with the Canadian specialist, Dr. Grushka, in Toronto. I have read a lot of her publications. I am nervous about any further dental work as I think that this is what was the “final straw”…along with much stress, aging, and being of an overly-ruminating personality!! I wonder how many of us sufferers are Type As. I do notice that when I am feeling “more”…so I am going to see someone about some cognitive behaviour therapy…also recommended for managing BMS… I am interested in neuroplasticity …and re-training the brain….so far, when I have that ghastly taste in my mouth, if I think “lemon”, it helps ..and I try to lick one when this happens…at least it makes me feel a bit more in control. I also have purchased a very small facial vibrator on Amazon for 20$… which soothes some…if this is a nerve-ending business then I am trying to stimulate the nerve endings….get some blood flowing in the face and lips! I admit to being nervous about getting the vaccine in April. I will of course, but I need to reign in my imagination !! I agree that there is a lot of money to be made in selling hope. I am glad I spoke with Dr. Sklar in that she had at least met others with the condition because here in Saskatchewan, it is an unknown.
And I am so grateful that you are there. Thank you. I hope all is well in your corner. I did see that you have another blog? Be safe. M
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Marena,
So good to hear from you and I am glad you followed up with Dr. Sklar. I am asking my Neurologist about hormone therapy and if he has seen anyone benefit from it when it comes to BMS. I will let everyone know if he has.
Re: Vitamin D
Many BMS Sufferers will test out low on Vitamin D and also B12. I did, and my doctor at the time put me on a high dose of Vitamin D for a week to get my levels back up quickly and now I take it daily, along with sublingual B12. Your doctor can advise if this is something you should do and the amounts you should take. It is not an expensive supplement and the reading I have done indicates that it helps with many systems of the body, so it is well worth the investigation.
I envy you if you get in with Dr. Grushka. She is one of my “sheroes” when it comes to BMS and for decades was the only voice out there talking about this syndrome and drawing together a team to investigate it. Most research I have read since then often references her groundbreaking work. I would be interested to know if she has found any meds besides Neurontin/Gabapentin and Klonipin/Clonazepam to be effective for pain level relief since that initial study.
CBT (Cognitive Behavioral Therapy) has proven helpful in many kinds of chronic pain so it is probably worth investigating. I will be eager to hear what you think of it and if you find relief from the escalating pain cycle of BMS.
Please don’t be nervous about the COVID vaccine when it comes to BMS. I had my first shot in the beginning of March and experienced nothing more than a sore injection site. I have heard the second shot is a bit more taxing and will let you know if it has any effect on my BMS but for now, I must say there is not, and to be protected from going on a ventilator or dying alone in a hospital…well, there is no question what I choose.
I do have another blog, but it is directed at parallels between parenting and management, personal stories, and some of my observations of the world. I separated the BMS posts out into this blog and that seems to have been a good decision! If you are interested in Kalí’s Musings, just click the name and check it out!
Take care and keep in touch!
Kalí
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