Burning Mouth Syndrome

Hi Littleduck, l'm so sorry to hear that you too are suffering with this awful condition. As you've probably read from previous comments, this is my third bout of BMS over the years but its been by far the worst. Like you l have a few good days, think its getting better then bam!! its back with a vengeance!. I've been on Carbamazepine and Amytriptilene but neither has made any difference so l no longer take anything and l'm no better but no worse. I find the eating thing is the worst to come to terms with but l am eating better than l was at first. I'm trying to stay positive snd hope it will pass as it came on, out of the blue. I've made a good friend in Sheena and we keep in touch and try to support each other. Also we now belong to the Burning Mouth Support Group UK and the much wider support group that covers the US (called H.O.P.E ) and further afield. So although there's not a lot we can do at least we can support each other. It truly is the cruelist condition. If you feel you would like to stay in touch please pm me. I quite understand if you prefer not to. Much love to you, stay strong xxx

Littleduck... so sorry you are going through such a tough time ... my heart goes out to you. As a doctor you you most probably have read reams of information about this ghastly problem? So many papers have been written that I believe this is probably a far more common complaint than people realise. Lots of theories contribute the start of BMS with the menopause.... what do you think? But yours seemed to start with a bad reaction to the asthma medication ? But I firmly believe that it is related to nerve damage.

It is such a shame that it hurts you to eat.... for me, it's all fine when I eat and drink... it's afterwards that sometimes it flares up badly.

It seems that yours comes and ebbs away a bit ... so hang on to the days when it's not so bad... and those days WILL become more frequent. I truly do understand how depressing this condition is... and very hard to tell anyone about it .

All of us here can understand the pain and frustration ... it will calm down ... please believe that . At the moment for you it is all consuming.. you probably can think of little else, and how foul it all is, but Littleduck please try to relax and distract yourself ...

Thinking of you

Thanks for your kind words Sheena.

Having a bad day today and feeling really down again.

I'm only 45 years old and the prospect of being left with this for the rest of my life is terrifying. If it doesn't go away I don't know what I'll do.

I've got absolutely no quality of life with this, eating anything is pure torture and I'm still losing weight.

I can no longer support my family either financially or emotionally and I feel like a huge burden. I'm really worried about the future.

Hopefully tomorrow is better

Littleduck welcome to the forum, and particularly to this subject. I am so sad to read your story, but if you have had the chance... you will see there have been several initial posts regarding this horrible problem, and also many many replies.

I think an original post was put on in 2011 , and I, myself posted in 2013 .

It seems that there are very many of us out there with this ghastly complaint.
I totally agree with you that we must take good care mentally and emotionally . It does seem (and this applies to me) that there are no drugs whatsoever that help with the burn, but antidepressants can and do help keep our spirits up.

I first saw a maxfax consultant in 2001 and he was very sympathetic but said that really antidepressants are the only way ... but of course that was a long time ago.

I absolutely believe that no way is this problem caused by stress ... it is a physical thing ... in my case brought on straight after a tooth extraction, although I don't think there is a dentist out there who will acknowledge this. Mine certainly doesn't. But the maxfax guy did acknowledge that there could very well be a link between dental work, nerve damage and BMS

Littleduck, if by any chance you do facebook there is a wonderful (small) group called burning mouth syndrome uk ... very helpful. And Also 2 based in the US but again so helpful and supportive.

My BMS tends to go in waves.... always there in the background, but then will flare up for no apparent reason,,,, then subside etc.

I haven't taken anything for it for years , but I do practice as much as I can mindfulness and relaxation and distraction ... and also acceptance ..not easy at times .

I do wish you well... always here for a chat if anyone wants to ... Tiffaney and I often compare notes and sympathy .

Hi, I don't usually post on forums but joined this time to post on this topic.

Unfortunately, I also have burning mouth syndrome and over the 6 months I have had it, have pretty much become the poster child for what not to do when you have burning mouth syndrome.

Mine started in early August 2018, and was an instant reaction to a mouth inhaled asthma medication called Breo Ellipta. The morning after my first dose I woke up and my pallette felt rough and bumpy. My GP suggested I treat for thrush and keep using it. I started Daktarin gel and after a few more doses of the medication realised my mouth felt really dry and would get worse as the day progresses. After about 5 doses I stopped the asthma medication and over three weeks my mouth gradually went back to normal. I knew something weird had happened but didn't know what.

Unfortunately I was doing an extremely stressful job with an impossible workload and when I got short of breath again I took another dose of the Breo. (I had not intended to use it again but wasn't thinking clearly) The next day I woke up with the same dry mouth and I've had burning mouth ever since.

For the first two weeks after it retriggered I predominantly had the dry mouth, but then I started getting the pain and I realised it was BMS. I'm a doctor so had heard of it and then freaked out at the poor propgnosis and lack of treatment. I was also struggling to work because I have to talk all day to patients which is very hard with a dry, painful mouth.

I saw an oral pathologist who was very reassuring and said that it almost always goes away on it's own (he said in 95% of patients he sees), in one month to one year. I was very happy to hear this but then went back to my very stressful job, which was made even worse by my pain and dry mouth and I wasn't coping and getting more stressed.

By mid October I couldn't take anymore and took a month sick leave to trial clonazepam 0.25 mg twice day. Unfortunately, the pathologist had not made clear that this only treats pain and not the dry mouth, and at this point dry mouth was still my main problem, with pain on some days. After two doses of clonazepam my dry mouth was astronomically worse and my pain went from intermittent to a raging agony that affected my whole mouth and lasted 24/7.

At this point my brain broke and I became severely depressed and agitated, which made the BMS even worse. I ended up needing hospital treatment for 3 weeks and it took until Christmas to recover from the depression and feel myself again.

I had also lost 16 kg from not being able to eat.

Since then my symptoms have improved a bit. I had three weeks where it seemed to be winding down - I would have one good day, then one bad day but the good days got better and the bad days not as bad. Then in one week I had three days when the pain was almost gone, although my mouth was even dryer. Unfortunately, a week and a half ago it turned around and went bad again, so I'm feeling like I almot got to the top of the mountain, then slid back down again.

So my suggestions to anyone who has this:
- above all else guard your mental state. It is very hard not to be depressed and anxious with this, as it brings so much uncertainty to your life and leaves you constantly second guessing what you may have done or eaten to make it worse. If your mood slips, go on an anti-depressant sooner rather than later. It's easier to cope with the pain when you're not depresssed and while BMS is definitely not a psychogenic illness, I do think depression and anxiety can make it worse and slow recovery. I don't think mine would ever have become as bad as it is if I hadn't freaked out and got depressed

- force yourself to eat as rapid weight loss is also not going to help your immune system

tiffaney - I can only sympathise, as it seems we are BMS twins and our onset and symptoms have been during the same time period.

I have not tried any treatment, except for the clonazepam, although I think this made me worse. However, some people do report success with it.

Other things you could try (and this is based on case reports)
if your mouth is not dry
- duloxetine 60 mg day
- amitriptyline 10-25 mg at night. Most people don't tolerate more than 25 mg because it is so sedating but some people do go up to 50 mg.
Both of these medications are useful with nerve pain

Lyrica - my GP had a patient whose pain greatly improved on a low dose of 75 mg at night. I'm considering trying this now but am wary as I have had so many weird adverse drug reactions and seem very sensitive to medication.

Leavingnormal - during all of this I also developed intermittent burning pain in my feet, legs, hand and face. I saw a neurologist who has diagnosed me with small fibre neuropathy. Your description of sensitive burning skin sounds a lot like this, so you may want to get checked out by a neurologist. Apparently it sometimes responds to gabapentin.

So I am trying to remain hopeful, that this will go away on it's own at some point, as the oral pathologist said.

It's very hard because I can no longer work, and this was really important to me. I love being a doctor and have spent so long training it is devestating to not be able to use my skills. Hopefully I can talk again soon.

Best wishes to everyone. This really is a horrible condition - you couldn't design a worse torture.

I have a chronic dry mouth which has much in common with burning mouth. When my mouth is bad it is very sore too.
My doctor told me to eat acidic foods (No!), to suck sugar free sweets (artificial sweeteners badly upset my guts) and to keep swigging water (makes it worse) The dentist was more helpful.
I take Alpha Lipoic acid tablets, which definitely help.

In my experience, no food triggers it but the soreness is made worse by some foods, mainly acidic ones. The only fruit I eat are bananas and mango! When it’s bad wine is awful ☹️ Difflam is an analgesic so helps to numb the pain for a while, but nothing helps the tingling sensation which is constant with me.

Don't think doctors know how to treat it,they do tests send you here and there.Your none the wiser.They say try this,try that,it's this and that.I've had it nine years and have a big list of different foods and drinks that trigger it.Why is it too that mostly women have this?I think mine is to do with the menopause and changes to my hormones.Burning mouth syndrome is a pain that we deal with on a daily basis.Until a doctor knows how it feels there's no sympathy.

My dr gave me Difflam and it made it worse as does anything containing alcohol and all toothpastes l've tried so far including Oranurse they give to people having chemo. 13 weeks on and l'm no better tgan l was in the first place. Carbamepine and Amytriptilene have done nothing for the pain. Its beginning to look like l'm stuck with this now as the only thing that gives any relief is iced water or ice chips in the mouth.

Would like to share some other remedies for some relief from burning mouth syndrome.You can try Difflam oral rinse,it's an analgesic and anti-inflammatory treatment for painful conditions of mouth and throat.Also toothpaste with baking soda or just rinse with baking soda.My long term relief is dual action honey and lemon throat lozenges.They contain antiseptic and most importantly local Anaesthetic.Make sure they contain the Anaesthetic.The Difflam you can buy from chemist in spray or rinse.You can also get on prescription.Hope this helps who suffer this condition.

I hAve already posted my symptoms and know I do not have BMS as such but was given the leaflet from my Consultant re BMS but after having gone through various tests recently about my mouth problems I have now been taken off my blood pressure tablet by my GP to see if it has anything to do with my problem. I shall keep you posted.

Did you know that burning mouth syndrome can be a symptom of the menopause?Been going through it,what a rough ride.

It can be connected to Haemochromatosis -your GP can order blood tests for this.

Thanks for the tip I’ll give it a try.

Have had burning mouth syndrome for nine years.I use chopped chilli flakes in warm water as a rinse.works for me.Just add a little to warm water let it stew a while.When your mouth feels sore just swish it around for a while then spit out.Takes away that burning feeling.Hope it works for you.

To be honest l'm in as much pain today as l was 3 months ago. Dental hospital called it atypical nerve pain plus burning mouth syndrome. A few people on the BMS support group have mentioned Pregablin so l will ask my dr about it. The Carbamazepine is doing nothing. Many people in the group say they've had it for years and have never found any relief. As regards diabetese, it makes me wonder as l am pre diabetic but cannot eat anything sweet at the moment as it flares uo really badly.

Hi, Tiffaney, did they say what could have caused the damage.I'm sorry you haven't got any real answers, although I think you expected it.I was offered CBT or antidepressants, I have tried neither, still suffering.I am Trying b vitamins at the moment, but they haven't helped so far.

How are you feeling after your visit? Doesn’t sound as if you came out with any positive answers. Like me. Bit depressing isn’t it?

Sorry to read that some are suffering with burning mouth syndrome.

I am only mentioning this as a poster upthread mentioned a possible nerve connection.

I haven't thankfully experienced burning in my mouth.
I have been driven mad by a painful burning foot (side of foot and small toe) for several years and last year a burning pain in my back (concentrated area)

After long investigations regarding my foot it was decided that it was nerve related and Pregablin was prescribed by hospital.

Thankfully this stopped the pain and the burning sensation.
However last year I had the same sensation in my back.
GP increased the Pregablin dose and the burning pain stopped.

I am now back on the original dose and as long as I take the medication I'm fine.
But if I forget to take it or take later than normal the burning pain is back with a vengeance.

Pregablin I believe can also be used as an antidepressant.

Not sure if this is of any help.

..... and also as a side effect of drugs for R.A.

I understand from a friend's experience that BMS can be connected with Diabetes. Does this ring any bells?

Saw an Oral Medicine consultant today and they took an xray of the most problematic area. Nothing showed up so the verdict was that there are 2 thing going on here, the most worrying one has to be put down to atypical nerve pain/damage(which is what they call it when they don't know what it is!) and to keep taking the pain killers (carbamazepine), then maybe a low dose of antidepressants too for the burning mouth symptoms. If none of this works try Gabapentin and theyll review it in 4 weeks time.

Hi Brunette10, thanks for replying. I will let you know the outcome when I've seen the consultant tomorrow but to be honest I don't hold out much hope of finding that it is any more than Burning Mouth Syndrome. Since first posting I have joined 2 BMS support groups and it does help to talk to others who suffer too. Will get back to you tomorrow.

Hi tiffaney, sorry I think I said I would report back but haven’t. Unfortunately I did not get any positive answers at all from the Consultant. She advised that bloods taken and mouth swabs are all good and that my mouth is healthy. However my symptoms are unfortunately just the same. Always have the feeling my teeth are not clean, something abnormal in my mouth which makes me ‘chew’ on whatever is there and generally just very uncomfortable. She did indicate she could give me something which I took to be a form of anxiety drug or try to manage the problem on my own which I went with. She also said that it was something I may have to live with forever or it may just go away on its own. To be honest I left the appointment very confused and not really knowing what the problem is but she did say I am definitely not imagining it which I was very relieved at. My mouth is no better at all but I will give it time and hope it sorts itself out.

I hope you get on much better than I did as it is very frustrating and uncomfortable to live with. I wish you luck with your next appointment. Let me know how you get on if you can. Good luck.

Brunette10. Just wondering how you got on with your tests in December. I have an appointment with Oral Medicine on Thursday - my symptoms are worse now than when it first started on October.