Hi Malc, I'm afraid it does sound like the only answer is either speaking to your GP or a pharmacist. If home remedies are not helping I can't see any other option. You could pick up the phone and try calling 111 if you can't get to talk with your GP. It sounds awful and if it was me I would call 111 and get their advice. If you need medication they can give you that too. Good luck and I do hope you get it sorted soon xx
Why were you prescribed Nystatin? Do you have an underlying oral infection?
I have had (well still have but attacks much less severe and pass quickly with no meds) BMS and it's horrible! I made a post here about it when I was really suffering. It was so bad I cried at times. I also had remittent episodes of mouth dryness. I have hypothyrodism and it got worse when not taking meds properly or taking too much, so I eventually figured out that it is due to a number of things but hormonal imbalances have a LOT to do with it. You want to balance out your hormones as much as possible.
I now take Vega EPA 2 - 4 capsules daiky, blackseed oil occasionally, selenium 200mg daily for inflammation and Zinc 25mg daily.
There are two other theories:
My dentist said eat high iron foods as being low in iron can cause it sometimes so I take Spa tone and eat liver pate (did this for my hypothyrodism anyway so not so sure about this but most people need more iron anyway so worth a try) and caffeine is a big no no too apparently (I can't function without caffeine as my adrenals are wacked so I ignore this)
More importantly, she explained that the saliva can change its composition as we get older, becoming more viscous or thicker (hormones affect this too) so you may appear to have plenty of saliva and you may not even notice any change at all (and pass all the spit tests you are given by dr) but because it's thicker, this means the saliva is not able to do its job as a lubricant as effectively and then you get a build up of certain chemicals and bacteria in the mouth. The bacteria give off chemicals and this can also cause the burning sensation as well as the constant friction of the tongue in a mouth that isn't lubricated efficiently. That's what causes the 'soreness' as the tongue is constantly moving when we talk, eat and breath through our mouths. It also rubs against our teeth. You don't notice when things are normal. But without effective amount of saliva or inefficient saliva it gets sore pretty quickly. A key sign of thickened or low saliva is a smooth red shiny tongue that feels sore but mouth looks otherwise healthy (drs don't consider this and pronounce your mouth healthy when actually its not)
I also saw an oral specialist in hospital and he also said insomnia at night can confuse the brain, as it has a sort of circadian clock that depresses saliva flow in the night, and switches on in the morning (or something like this) and being up at odd times screws this rhythm up. Also sleeping with mouth open can make it worse. He said chronic exhaustion was at the root of it and the very worse is waking then sleeping on and off. You should either stay up all night or try to sleep and stay down with your eyes closed no matter how bad. He said ' sort out your sleep' and I do notice when sleep is really bad a few days in a row the BMS flares up. But with Fibro sleep is often variable to put it nicely!
I was also warned by him not to ever use lip moisturizers or balms as this confuses the brain into producing less saliva also and you can start unconsciously tongue licking which signals the brain that you don't need as much saliva.
If you have asthma and take inhaled steroids (which I do too hurrah😐) then this can also have an effect. You should rinse out your mouth after any steroids.
Chew gum when an episode comes on especially before bed ( lol I'm taking things like Hubba Bubba again as I prefer the taste but mint is cooling) or eat cooling things like yogurt. Try rinsing your mouth and throat with olive oil in the morning - it is a mild but natural anti fungal and moisturiser.
Some people say its a result of the gut being inflamed so it might be worth trying to cut out carbs for a week or two to stop any gut fermentation and see if it makes a difference or trying something like oregano oil capsules.
There's a spray you can buy over the counter begins with G (can't remember right now) its for oral dryness but it soothes for a bit. There' s also an oral gel that does the same thing but stays around for longer. But remember the body has a habit of producing less of something if you replace it so I say don't use at all or if so, not too often.
Ultimately I find (not meaning to be glib about it, I know how uncomfortable it feels) I do what I can but I also find if I don't think about it, I mean consciously try to ignore it and carry on eating etc like normal the brain switches the burning signal off altogether or switches it down.
Take it as signal that something is off, you either have an infection, need to rest more, sleep better, eat better, you're taking a medicine that makes it worse or your hormones are out of wack. It might be all of them.
1. I do also have Hypothyroidism but was not told that it could affect my saliva.
2. I take vitamins B1, B6, B12, Zinc, Magnesium, Calcium and Vit D (adcal).
First 5 as suggested by my old GP (he has now left my GP surgery unfortunately)
3. My mouth IS very dry to the point where my tongue gets stuck to the roof of my mouth.
4. I know it is not thrush as my ex GP checked that.
5. My tongue is bright red and completely smooth which is not normal as gp told me everybody should have little bumps on their tongues etc whereas the top and sides of my tongue has none.
6. I have had to take iron tablets at times due to low iron but again was not told it could cause low saliva.
7. I have Colitis so have to take a lot of different medications for that but again was not told any of them could also have an effect on saliva. I do have to stick to a very strict diet. eg. Cannot eat any red meat or anything to do with pigs: bacon, ham, sausages, pork etc. Also no caffeine or gluten, tomatoes, citrus, spices, onions, garlic, dairy products, alcohol, sugar, sweets or chocolate of any kind as also a diabetic and have high cholesterol too.
8. I also have GORD/GERD and pyloric stenosis( narrowing top and bottom of stomach so have to have endoscopic dilations every so often, my valve at entrance of my stomach does not close so stomach acids come back up and burn my mouth) plus muscles in oesophagus do not work so food gets stuck so can only eat tiny portions of food. It also makes me feel nauseous all the time and i quite often throw up (no nice way of saying that, sorry)
9. My husband says i make horrible noises when i sleep but not snoring noises.
10. I also have ME/CFS so suffer from terrible insomnia to the point where i may only get 3 hours sleep.
So after telling you all this please believe i am a happy person that is very positive and i do not suffer with depression despite all my medical conditions ( there is a long line of them) and i wish that i had been told that all my health conditions could cause lack of saliva that leads to my mouth and tongue etc to burn like this.
You have given me a huge amount of info in your reply that can help turn the burning around that also bring me to tears.
I am sorry for my long reply to you but had to tell you how glad i am for your help with this condition and have mentioned a few times how i wish i knew about this forum a long time ago.
I am very grateful to you and bless you for all your help.
You're welcome, I hope some of it helps. I forgot to mention the importance of Gamma Linoleic Acid in balancing hormones (starflower or evening primrose oil)
Sorry to hear about your other illnesses, my mum has ulcerative colitis since she was in her thirties, so I know how tough it can be although hers has been under control with steroids on and off for a long time now.
The acid reflux (welcome to my world!) high cholesterol and exhaustion are probably linked to the hypothyroidism (in fact before tests were available high cholesterol was one of the first clues doctors looked for to confirm a diagnosis of hypothyroidism) Are you taking Levothyroxine? It might be worth getting a review of the dosage it sounds (on the face of it) like you could need more. If you haven't already, I highly recommend also joining the Thyroid UK forum on here as well for support and information.
Have a lovely Christmas and PM me anytime if you want to chat xx
Hi yes i do take Levothyroxine 125mg.Haven’t had my check up blood tests for nearly a year now due to covid but think i had better speak to GP about getting them done and will also mention the info and advice you have given me.
Yes Colitis is not fun and really hard work so my sympathies to your mum, the steroids are horrid and make my body swell up while i take them.
Thank you so much for that info Alanna. I actually did burn my tongue a few months ago but it wasn't getting back to normal & my mouth got increasingly dry. I tried natural, bio yoghurt; changed toothpaste & increased fluids, to no avail. After almost choking on food, as I couldn't swallow properly, I got phone appointment with my GP who prescribed a gel with artificial sweeteners in it which I specifically told her cause mouth discomfort! Didn't check before using & felt like I'd put glue in my mouth. Rapidly washed it out & went online to find a better product. Bought Salivate, which helped a lot so phoned doc to ask if I could get it on prescription. Was told only available to patients receiving chemo! However, GP finally agreed to prescribe but added that it was probably cbd oil causing my dry mouth, even though I'm on 3 meds which state dry mouth as a common side-effect & taking cbd enabled me to cut opiates to a quarter of prescribed dose, which impressed her!).I'm at the point I research, try (if available to buy) & then just ask for treatments I find helpful. GP didn't bother explaining anything the way you did. Thank you.
I have just been diagnosed with bms and because of Covid have to wait for my next appointment at the hospital. My mouth is very dry and so sore it gets so bad it bleeds my tongue is swollen too. I am going to try your advice so thank you.
HiI suffer from this exact same problem so Incan really relate and empathise.
Been on many doses of Nystatin but it hasn’t worked. I now have been given a anti thrush tablets called Itraconazole 100mg. I have to take to take 2 for twice a day for two weeks. I’m pleased to report my oral thrush has calmed right down. I know how horrible it can be. I find mine makes me tongue burn and also sometimes makes food taste weird.
My tongue gets really sore. It's called "Geographical" tongue as it has raised ridges. I find myself sitting there with my tongue out as it's too sore to keep it in my mouth. That's how bad it gets! The only thing that keeps it at bay is Vitamin B6 tablets. If I stop taking them it flares up. Please try them.
Interesting to me, my mouth often feels sore from dryness, but it doesn't get red I don't think. It was much stronger when taking amitriptyline (everything sticking together, hurting, making me dry cough at night), and better with TCM/acupressure, drinking soy milk helps alleviate it, but makes me get up more at night (but much less than if I drink water or tea). (Could be a preliminary form of Sjögren's in my case, or just plain fibro.) My dentist recommends trying an OTC gel starting with G "GC dry mouth gel" (is that the one?) - seems to be international. Like Alanna I'm afraid it could make it worse, but then - can it? I'll try at least. Thanks for the reminder...
True, thx - no, never have. I should add that the suspicion of having Sjögren's (probly pre-form) has made me realize I have dryness all over (and "under"): "sicca syndrome": mouth, eyes (itchy, so warming with cupped hands, and gua sha), skin (itchy, so little water, little soap), stomach (hyperacidity, so non-irritating diet), praps gut too, but I have IBSD, not IBSC (diet, psyllium).
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"GC dry mouth gel" (is that the one?) - seems to be international. Like Alanna I'm afraid it could make it worse, but then - can it? I'll try at least. Thanks for the reminder... 
Dry mouth, Sjorgens syndrome.
Dry mouth
Mouth Ulcers - Relief?
Burning
Burning
