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Burning tongue syndrome

(41 Posts)
Sheena Sat 08-Jun-13 09:09:10

Has anyone any experience of this? I stared this last July and nearly a year on it is still with me. Symptoms are as if your tongue and mouth have been scalded and so unpleasant. My dentist has heard of it but unfortunately there is no treatment as such. My teeth and gums are fine. My gp has sent me for all sorts of blood tests all back normal...so it is obviously caused by some sort of psychological origin...but very physical to experience. I am on a low dose of anti depressant to combat the dreadful anxiety and depression this causes. I also have chronic pain after various bouts of surgery (unrelated). Incidentally I did have a bout of this back in 2003 when I saw a consultant who again said there is no treatment only the anti depressants . Has anyone any tips or help they can give me? sad

shysal Sat 08-Jun-13 09:40:53

No answer I'm afraid, Sheena, but I do feel for you, it must be so distressing. I hope you will find some relief soon. flowers

noodles Sat 08-Jun-13 10:14:46

Could it be an allergic reaction? It sounds awful. I hope you find some relief soon. [Flowers]

MrsEggy Sat 08-Jun-13 20:35:35

You have my sympathy, Sheena, I have had this (it seemed to follow a nasty throat infection, and was aggravated by various remedies I was prescribed for a tickly cough which persisted for some months). At its worst I was getting up at night to suck ice, and losing a lot of sleep. I found anything acidic or containing mint (mouthwashes, toothpaste etc,) made it a lot worse. Eventually I had blood tests which found I was very low in zinc and had a prolonged course of very high dose zinc tablets. It took months, but did eventually improve a lot, but has never totally disappeared. Please don't assume it's all in your mind, there may well be a reason that you haven't discovered yet.

tanith Sat 08-Jun-13 22:13:08

I had this about 2yrs ago, most unpleasant thing , it was mainly my tongue that felt burnt , my doctor also said there was no treatment apart from advising me to suck ice chips. It went on for a few months and slowly faded , it does come back occasionally but only for a few days and then goes again. I've never been given any explanation as to what causes it. Really sorry you have this but apart from the ice chip advise I don't have any answers.

jennycockerspaniel Sat 08-Jun-13 23:48:56

My poor Mum, My poor Mum suffered with it and started soon after diabeitis was diagnosed She tried sprays mouth washes and tablets to produce saliva Mum also took a anti depressant as the side effects can settle the BMS down Mum was so easy going but it changed her and she couldn't cope with it My poor Mum passed away 3 years ago and people didn't understand and as you cant see anything its within Hope you find some comfort and it
can sometimes settle.,

janeainsworth Sat 08-Jun-13 23:53:24

Sheena Did you see a consultant in either oral medicine or oral and maxillo-facial surgery?
If not, ask for a referral to one.
Burning mouth syndrome is poorly understood, but one cause could be allergy to sodium lauryl sulphate which is an ingredient of many toothpastes.
It might be worth trying an SLS-free one - I think that Sensodyne Pronamel is SLS-free, but not sure, you would have to check the label.
Hope that helps.

jennycockerspaniel Sun 09-Jun-13 00:02:04

My Mum saw the consultant and she had to clean her teeth in boiled water and some drinks made it worst like lemonad eShe got some very good care at out hospital so I would ask to see a consultant. Once a again hope you gets some releif

Sheena Tue 11-Jun-13 20:46:09

Hi Everyone and thank you so much for your replies. Yes I have seen a max-facs consultant and he was the one that said really only anti depressants will help.
I have gone through just about all the toothpastes to find one that is SLS free and Sensodyne is fine...but again I can only use that for a few days and my mouth starts to get worse ...so I go back to the corsodyl daily toothpaste. I do find chewing gum helps, but only for a short while and I don't want to be chewing that all day !!
Eating and drinking don't give any bother and overnight it all subsides, but back again in the morning. I've tried cutting out tea, coffee, wine, citrus fruits etc the list goes on but I don;t think I have an allergic reaction to anything. Just have to persevere and hope and pray that one day it'll go.
It is so helpful to know that I'm not alone with this....thank you.

susie511 Sat 15-Jun-13 13:35:01

I have also suffered very badly from this syndrome - it came on almost immediately after root canal work at the dentist a few years ago. I have always wondered if a nerve was damaged during this dental work, but of course my dentist denied it had anything to do with it. However something obviously brought this on. I also eventually saw a maxo-facs consultant who couldn't find any reason for it. But don't despair - some 3 years on it is now much better, although like Mrs Eggy it does come on again from time to time - and often my tongue feels very swollen too (although I don't think it actually is). Regarding toothpastes, I now only use Arm & Hammer toothpaste (uses bicarb as main ingredient, not the usual chemicals) as I'd read that this can help, and I think it probably does. Also try not to eat too many acidic foods/fruits. (Oh, and when it is really bad, try chewing sugar-free gum - it gives you something else to concentrate on and can help). Hope this helps!

Sheena Sun 16-Jun-13 18:55:35

Thanks for that Susie511...my very first episode of this horrid thing was after a tooth extraction so I too am convinced it is to do with dental work. As for the toothpastes I have tried just about all there are including the "herbal" ones etc but haven't tried the Arm and Hammer so will de give that a go. Some days it is in the background and bearable...but other days it's just foul..it gets me down. It sounds so trivial compared to other problems others have but it is pretty debilitating at times. I also chew the sugar free gum when it's bad.....again, it is a relief for me to know that others understand the problem and can relate to it with me. Thanks so much for your replies.

GadaboutGran Wed 19-Jun-13 22:04:16

It isn't trivial if, like many non-life threatening things, it has a big impact on your life- especially enjoyment of food. I had this (interestingly after a crown was fitted on a back tooth) & was told by my GP it was stress. Although I know stress can be under-diagnosed I think this can also mean "I haven't a clue what's causing it & will fob her off or not admit I don't know". My burning mouth has lessened but has been superseded by lichen planus (see new link - I saw this thread when I decided to add it). I find SLS free toothpastes help. Have you been tested for acid reflux? My husband has burning tongue now but it completely disappeared when we went to New Zealand for 4 weeks earlier in the year. Today, his dentist reckoned that showed it was an allergic reaction but not sure how she deduced this.

Sheena Fri 21-Jun-13 08:27:23

Hi GadaboutGran...strange that so many cases of this horrid problem are dental related ( have read loads on the internet)..mine first reared it's ugly head in 2000 when I had a tooth removed...it was off and on for a couple of years and my gp referred me to a max-facs specialist who confirmed the BMS
and recommended antidepressants as the only route forward a it caised me so much anguish and depression..over the years it has been back and yes, I have had the heliobacter pylori test...and loads of blood tests..all completely normal...like you GaboutG I have tried all the sls free toothpastes and am now trying the Arm and Hammer mentioned by Susie511..although I see that does contain sls..some days I think it's much better other days (like yesterday) it's foul..so sore and burning and dry..my gp has now sent off a tongue swab..but she thinks my tongue looks completely normal.
GaboutG I am so sorry to read that you are now suffering with lichen planus..what can be done about that for you?
Again, I do appreciate all your comments

GadaboutGran Tue 25-Jun-13 14:28:13

Thanks Sheena. Lichen planus can only be 'managed'. A new dentist got me referred to a specialist in the local hospital & he sent me to the Eastman Dental Hospital in London where I've been seen by a succession of students who didn't really add anything but did prescribe a steroid mouthwash. I only saw the consultant when they were about to discharge me & wish I'd seen him at the start. The main benefit was checking for signs of mouth cancer. If I weren't such low risk (non-smoker etc) he wouldn't have discharged me & I can go back again if I am ever concerned. In the meantime, attention to oral hygiene is important but getting that right between over-brushing & not doing enough makes me rather paranoid. I also need to avoid even mildly spicey food. Otherwise, I've just got used to it & use the mouthwash when it flares up.

nannienet Fri 13-Sep-13 21:30:14

Hi out there all you Burning Mouth Syndrome suffers.
I have suffered this very painful and very annoying condition for about 3years now. I would say try chewing gum,it really does help and so does having a sweet in the mouth. It takes the edge off the pain when it gets to that unbearable stage. I ended up loosing teeth and close to£2000 at the dentist/Private Consultants before this was diagnosed because I thought the pain was from teeth.
It doesn't stop me enjoying being with and caring for my Grandchildren. But what does is Meneiers, are there any suffers out there.

nosls13aa Sat 26-Jul-14 12:28:41

For me it started six months after my dentist recommended switching to Sensodyne, which does contain SLS (Sodium Lauryl Sulphate). Switching back to my long-time favorite herbal toothpaste (no SLS) solved the problem within a few days.

Of course I can't be sure if it was SLS or another ingredient in Sensodyne, but I am definitely not going to try another toothpaste for a while now!

gstricklin Sun 16-Nov-14 03:12:47

Message deleted by Gransnet for breaking our forum guidelines. Replies may also be deleted.

Faye Sun 16-Nov-14 07:21:11

I have never heard of it Sheena but it sounds horrible! I always like to know what others do and usually check out EarthClinic, scroll down a bit and there are some interesting comments people have posted.

granmalala Thu 10-Nov-16 13:59:00

I have had burning mouth syndrome for 5/6 weeks now 24/7, after a visit to the dentist, had X-ray as was told teeth were fine, bit of information on gums, gave me Ampicyllan which I took for five days, two days after finished Ampiciyllan I took this burning mouth syndrome, have just had blood tests back from doctor, and all normal!!! It really is a relief to know there are other folks out there who suffer with this, I'd never heard of it before, but it's really driving me up the wall some days and through the night!!! I'm starting to think that my doctor is thinking it's all in my head!!!

tanith Thu 10-Nov-16 14:02:51

Sorry you're suffering with this granmalala its awaful isn't it. I have it intermittently sometimes it last a few hours and other times its days , I've found nothing to alleviate it apart from sipping cold water it drives me up the wall too and I have trouble eating when its really bad. My GP can't find a reason for it either..

granmalala Thu 10-Nov-16 14:19:43

Thank you tanith, I've found chewing sugar free /additive free gum helps, bit ackward in the middle of the night!!! Coconut water chillled is very soothing also. I can just about cope with it during the day, but during the night when you can't get slept for drinking chilled water, then visiting the loo, is exhausting, I've sent for fluoride and SLS free toothpaste done by Green People company, so will just have to keep trying as the GP although very kind, doesn't seem to have an answer to this horrible syndrome!!!

Liz46 Thu 10-Nov-16 14:39:26

I have had this for a couple of years although it does seem to be easing off. I blamed statins which I felt were poisoning me but at round about the same time, I had a crown fitted so it could be either of them.

NanTheWiser Thu 10-Nov-16 16:07:23

I had it about 12 years ago - shortly after a tooth extraction, so there definitely seems to be a link with dental work. I became extremely anxious, thinking it could be oral cancer, and eventually was referred to an ENT consultant who could find nothing wrong, but mentioned BMS. An online search threw up this syndrome which seems to be more common in women over 50, and my symptoms fitted exactly. It can last several years - which it did for me, and even now, sometimes my mouth is sore. I found coffee, spicy food and alcohol made it worse. There's no cure, unfortunately, although it's often treated with anti-depressants as it can make the sufferer really miserable.

Maranta Thu 10-Nov-16 16:34:44

I have had this for at least 15 years. I had all sorts of investigations and took a low dose of amitriptyline for a while, which didn't seem to help. My sense of smell went at the same time. It has calmed down a lot now and it just feels slightly numb on my tongue towards the end. But I now have acid reflux and am wondering whether there is any connection....?

Badenkate Thu 10-Nov-16 16:44:57

I had a very mild form many years ago and I blamed it on stress as my father had just died. It gradually went away and I only get it now very infrequently