Burning mouth syndrome

[Duvetdays15]

Does anyone suffer with burning mouth syndrome. I had a heart attack 2021 and have been suffering from this for 3 months now, it is very frustrating, been to ENT who were no help, been tested for B12/folic acid /iron, there's plenty of articles online saying what could be a cause, including some blood pressure tablets but no advice how to help/cure it.

[fairgo45]

I think I maybe able to help you with this.About 3 years ago I started to have burning mouth syndrome I went to the doctor and dentist and the dentist had a patient in the past with this condition.

So I went back to the doctor with this info and she agreed to try me on the same medication which is valacyclovir an antiviral I took 1000mg three times a day till it cleared up.

I have since had one more episode and went back on a short dose to clear it up.

I'm.on a load of meds for afib and CAD and it doesn't interact with any of them.

So have a go you won't regret it

[WardijaWardija in reply to fairgo45]

Interesting . . .When you say "burning mouth" are you referring to any specific area's of the mouth, does it affect the tongue ?

I'm having a nightmare with my mouth that neither my GP or dentist take seriously ☹️. This has been going on for the past 3 years and well before I started a course of invasive dental treatment.

This was around the same time that I started on some new heart medications.

Could just be co-incidence of course and I've done a little research, but can't see any links.

I've had numerous antibiotics and topical gels, nothing makes any difference.

I just wondered if you could enlighten me in more detail.

Thank you 🙏

[Duvetdays15 in reply to WardijaWardija]

Yes it does affect the tongue. Mine started there but now it is the roof of my mouth that is burning - Burning mouth syndrome. Mine started out of the blue, I am getting no relief apart from when I sleep. I have done a swab for thrush - all clear, had blood tests. Like I said there's lots of things it could be according to the medical profession, including hormones/menopause (I am already on hrt), medications, b12 deficiency, zinc, thyroid, the list goes on. There is also questions as to whether it's a gastrointereologist problem - reflux , neurology for nerves, maxofacial or ent. There is very little understanding or treatments.

[WardijaWardija in reply to Duvetdays15]

Thank you for this. I can just sit and cry with the pain it causes.I also get sores and ulcers from nowhere.

I've had the B12 shots.

Blood tests show nothing in relation to this.

I'm 15 years post menopausal, so that ship has definitely sailed.

My Thyroid is supposedly OK.

No gastrointestinal issues I'm aware of.

I am a long-term insulin dependent diabetic and I suffer from nerve damage, Diabetic Neuropathy in hands and feet.

I have Stage III Kidney Disease.

I've taken Omeprozole for the last 30 years for grade 3 Hiatus Hernia/Acid Reflux.

Take Daily multivitamins.

So like you say, could be anything.

From a social perspective if/when, I'm with others, not often, and I say I cant eat because it's so uncomfortable, I'm often met with a response of "oh, come on, it can't be that bad"

I wish . . . I'd give anything to be able to.

I now live on the blandest diet ever.

Yummy 🤐 not.

Thank you for your input, much appreciated. 🙏

[fairgo45 in reply to WardijaWardija]

At first I thought I had burnt my mouth eating a pizza that's a good description of the pain which is completely in the mouth lining..If my dentist hadn't had a patient with it I would never have known and the antiviral worked quite quickly.

It's nothing to do with medication or dental work it just happens and antiviral valacyclovir which is a tablet is the answer.

[WardijaWardija in reply to fairgo45]

Thank you so much.I'm going to book a GP appointment and request to try the antiviral.

🤞

[fairgo45 in reply to WardijaWardija]

I was treated with oral valacyclovir, 1 g three times a day for 10 days, followed by valacyclovir, 1 g daily for 1 year.If you google antivirals and burning mouth syndrome you will find information to give to your doctor as its quite rare many don't know about it.

[Duvetdays15 in reply to fairgo45]

Thank you I will look this up, was it tablets or liquid that you took?

[Hidden]

I have never heard of this, thank you for bringing it to my attention , I really hope there is help for you.

Take care

[Duvetdays15 in reply to Hidden]

Thank you

[Cavalierrubie]

l have had this problem in the past. The doctor did not treat it and seemed to ignore our cold completely. I had stomach problems at the time, but had no heart problems then as l do now. I suffer from anxiety and so l put it down to that and stress l was under at the time. It did go away on its own. I don’t think they know much about this to be quite honest so if it’s bearable l wouldn’t worry too much.

[Duvetdays15 in reply to Cavalierrubie]

Unfortunately it's far from bearable.

[Cavalierrubie in reply to Duvetdays15]

Sorry to hear that. I did have it for a few months and then it just went away. The only thing l can suggest is ice lollies and chilled drinks but you have probably been doing that. Hope it will eventually go.

[WardijaWardija in reply to Cavalierrubie]

It's UNBEARABLE !!

[Cavalierrubie in reply to WardijaWardija]

Aw Hope it goes eventually like mine did. Have you tried Greek priobotic yogurt? Fage is the best, and keep in mouth for as long as possible and don’t drink for a while after. It has helped me with lots oral problems. Love and prayers.

[Warm-heart]

Hi - this is a miserable condition to suffer with, you have my whole sympathy. I did have it badly but now is much less, more or less gone unless I aggravate it. It was a drug induced condition with me, but think there is also an autoimmune element to it and gut health link too. (eg a certain probiotic helped and so did some fasting with vegetable juices and soups). Primarily I avoid certain things like: cassia (false china cinnamon - true ceylon cinnamon is fine) is a BIG trigger, nutmeg (sigh), oranges, tomatoes, aloe. Also, and this is a big one: certain things in some toothpastes. Particularly I have to avoid SLS, which a lot of toothpastes have but some brands are now SLS free like Ultradex which I am fine with. I also have to have regular dental hygienist work done, as if I keep my gums clean as possible this really helps (and I am meticlous daily about my oral hygiene). Which is why I wonder if there is an oral bacteria element to it too. I have also found after much research that rinsing daily when I have ulceration (tongue ulceration is a nightmare) with L Reuteri helps (Nouveau Healthcare L.Reuteri DSM17648). If you look online there is good research that this combats certain bad bacteria, but I simply rinse and spit out rather than swallow it. Certain dental hygienists like mine are now trained in BMS (burning mouth syndrome) and worth finding one who is good. I can always recommend mine but depending on your location may be a long travel. Best wishes for a way out of this.

[WardijaWardija in reply to Warm-heart]

Thank you, thank you 🙏🙏 for posting

[Warm-heart in reply to WardijaWardija]

You are welcome! I also meant to add, that acidic things can worsen my condition. I find a quick relief from the following: in a half cup of water add a little bicarbonate of soda (I like Bob's Red Mill baking soda as it has no additives & is aluminium free) - just a sprinkle of soda bicarb, say 1/4 tsp max - and rinse the mouth spitting it out. It should have a gentle neutralising effect, don't make it too strong!! This will alkalinise the mouth. Bad bacteria thrive in acidic environments (many foods and drinks are acidic) so it is a good thing to do after meals anyway, or whenever I have oral discomfort.

Certain herbal teas I find also are an absolute no sadly, really irritate my oral mucosa: I can only tolerate Pukka Macha Green tea and Clipper nettle tea, & weak Earl Grey tea seems ok for me too. One way around (cold) acidic drinks is to use a straw as this takes the fluid to the back of the throat instead of going around the whole mouth.

I will probably think of more things in time, I have developed so many strategies over the last 10 years! Sorry if it's too much info though....

[WardijaWardija in reply to Warm-heart]

Never too much . . LOL

[fairgo45 in reply to Warm-heart]

Make sure the toothpaste your using doesn't contain SLS its a reported additive that causes dental problems like mouth ulcers.Though I don't know every toothpaste that has it in the ingredients I know Colgate does and Sensodyne doesnt

[Duvetdays15 in reply to fairgo45]

Yes I have changed to sls free toothpaste, again no change

[Duvetdays15 in reply to Warm-heart]

Which probiotics helped you?

[Warm-heart]

Hi this is the one, not cheap though. I empty 1 capsule into a container and use a little of the powder in a tiny bit of water and rinse my mouth with it. You can either spit it out or swallow it. I make one capsule last a good few days this way.

amazon.co.uk/Nouveau-Health...