Burning Mouth Syndrome

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

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

Thanks Tiffaney and Sheena

The problem with eating for me is the altered sense of tatse and increased thirst. This went away for quite awhile but came back two weeks ago. Everything I eat just tastes like I'm eating spoons of pure salt and I feel constantly thirsty no matter how much I drink and eating makes that much worse.

Despite taking something to sleep I'm also not sleeping well, as the pain is no longer reducing at night (it did for a few weeks and thats when I had some better days). When it's bad when I wake up then I know I will have aterrible day.

I'm trying to hold onto the hope that it will go away - I know it does for some people, but I am really worried about what happens if it doesn't. I am the main breadwinner, and without my income we are sinking fast financially. If I can't get back to work we'll have to sell out house and we have three children.

I worked so hard to give them a better financial future and now we could lose everything becuae of this stupid condition.

I think this is the problem. We understandably start thinking way ahead. What if... then the anxiety takes over and it becomes a viscious circle. You are still quite young so it may just go away on its own.. Has it been mentioned that there could be a link to the menopause or pre menopause? Maybe worth trying a hormone replacement. Not in my case as l am well past that. The only things l find that give me relief are iced water and rinsing with Arm & Hammer baking soda solution but as this is a bit salty you may not tolerate it. Reading other's symptoms we are all so different. But its certainly a test of strength and hope and getting through the day. Please keep us posted how you're getting on. Its such and strange and relatively unheard of condition. We must be the chosen few!

Hi I'm in the early stages of what I think is BMS, not diagnosed but have a very sore mouth and tests for the cause all coming back normal so doctors running out of ideas. It started after I had a thyroid lump investigated, this was benign and was so relieved then my mouth problems began so I feel in my case it could be stress related. I'm due to see my ENT doctor in March and will ask her advice then. Already this is proving hard to live with, I'm not going out much and very anxious about the outlook so I really feel for everyone who has been suffering for so long.

Hello Stella1 so sorry that you have started suffering with this horrid condition. As you will see, there are several of us here who suffer too... all in maybe slightly different ways, and the start of it for different reasons, but we have the same thing in common... it's foul, and so very disheartening. Good luck with your ENT appointment . You might find a few useful tips here on how to cope with this, and there's a very good facebook page for support. It makes me very anxious too, and I have another chronic pain problem which has been life changing. All hard to deal with. We are always here if you want a chat .

Hi Stella1, l'm starting to learn to live with it now. After trying 2 different drugs and neither giving me any relief just bad side effects. Good and bad days, trying to make the best of it! I was like you at first, didnt want to go out, constantly anxious and worried about what it might be, its a natural reaction. Hope you get some answers and some relief soon x

Thank you both for your kind words, they make me feel less isolated. I went to my GP yesterday with anxiety and mouth pain and he gave me Pregabalin. I don't really want to be dependent on drugs but this one is less addictive than some so I'm trying it. So far it's making me very drowsy but at least I had my first good night's sleep in ages,will keep going and see how things go.Thank you again for responding x

I met an old work collegue yesterday and we were chatting and she told me she had developed this condition. Her gp recommended she takes vit B12. She has noticed an improvement using this supplement.

I agree about the b12 travelsafar. In a separate post l've mentioned PA/B12 deficiency. Stella1 l hope the pregabalin helps. There are a few support groups for this where you might find more info. The H.O.P.E Group in the US and BMS UK. I've come off all meds now tbh as the side effects make nd feel worse than the burning. Some days are better than others

Hi could it be lichen planus? I have suffered with this, dentist diagnosed after GP suggested I see my dentist, given soluble steroids to use as mouth rinse, which helped, also spray or mouthwash from pharmacy to numb area helped.
It’s very painful, you have my sympathy.

hi ladies im so glad ive found this thread. my bms started in Februaryand it is making me feel very low. I'm 57 i have just been putting up with it. I am making a doctor's appointment today as it is showing no sign of improvement.
I to suffer with dry mouth and sometimes find talking difficult when saliva production seems limited.
some days it feels a little less but mostly it is generally burning and tingling and a metallic tatste lingers and i have had several ulcers on the tip of my tongue.
what is there to do to try and ease this horrible truly horrible affliction.
xxx

I’m so sorry you’re suffering from this too. I have had it since September last year. Unfortunately there is nothing that can help the dry mouth, which in my case probably worries me more than the pain. In terms of the pain some people do find a medication that helps, although I was not one of them. The following are medications that help some people. No one thing works for everyone with bms.
Cloazepam 0.5mg twice day
Duloxetine 60 mg
Low dose tricyclics antidepressants (will make your mouth dry though)
Carbamazepine 100-800 mg day
Lyrica 75-300 mg day
Pramipexole (Sifrol) - 75 micrograms up to 1000 micrograms day
Low dose naltrexone 4 mg day
Alpha lipoic acid 600 mg day

It’s a matter of experimenting to see what works and what dose you can tolerate. However, if they are going to work they will only take a month at the most to help, with the exception of the low dose naltrexone which can take longer. If no relief after that move on to the next agent.

I tried all of theses under the guidance of a specialist physician with some experience in treating bms, but nothing helped me. However, he had successfully treated a number of people so it’s definitely worth trying different meds.

Best of luck. This illness is a special kind of torture.

I have just come back to this thread,i had completely forgotten about it,until i saw it again on the health thread,while browsing
I didnt have BMS for very long and my Dr had no idea what it was caused by, but i have since read that it can be hormonal, possibly due to the menopause, but i see some younger people have suffered with it so possibly not menopause but could still be caused by hormones i guess.
I have only had it that one time, i also wondered if it could be connected to denture wearing,or anything dental.but i hope you are all suffering less now and finding a solution,
I wasnt given anything to help, but it went on its own

I suffered BMS and Difflam really helps but homeopathy finally sorted it out for me. I changed my toothpaste and only use Kingfisher from the health shop ....hope this helps as BMS is horrid ...I still get it occasionally but then use Difflam and it goes

Hi Little Duck. Im also a doctor, in Devon. Want to discuss this...? Ive had it since January. Clearly multifactorial.

Stress
LPR
Diet
Post-Viral
Central sensitisation
Medication reaction

Ive looked at them all!

Truly, my heart goes out. Im a doctor and I sympathise. I have this. Its getting better with magnesium glycinate, b12, cod liver oil, zinc, Vit D3, and alpha lipoic acid. Plus I took 6 months off work - absolutely unable to work when it started! Its a real unpleasant condition. Ive had broken bones, pelvic injuries, car crashes... all sorts. All were a walk in the park compared to BMS!

I do so agree Sparrowhawk .. like you (and maybe many others here) I've gone through really tough physical problems , but this BMS is the absolute pits.

I know that stress and anxiety are a contributing factor, but no way did this start because of that... mine started originally after a tooth extraction , upper left, and it is always the left side of my mouth that is affected... and my tongue... the right side is fine. It's the vicious cycle of pain (I have chronic pain too as a result of surgery) .. worry.. anxiety .. fear .. and more pain etc.

I have tried just about all the supplements and pain killing drugs there are... no effect. I've tried not eating certain things... not drinking wine... trying to find a trigger... no luck . It seems to come in waves.. always there in the background and then for no apparent reason wham! burning badly .. lasts a few days and then fades .

Years ago I saw a max-fax consultant who said there is very little can be done and suggested I took antidepressants as although not depressed.. as we know this is a really really depressing condition. I probably took those for a couple of years and to be honest the BMS just about disappeared but came back with a vengeance in 2012 and now it has stuck... nothing shifts it.. for me.

May I ask... on your list of possible triggers.. what is LPR ?

What astounds me is that there are so many papers written on this condition, we can Google it and there's loads of info (not a lot to help though) and that specialists admit there is very little known as to the cause.

I belong to a wonderful facebook group , again , many people have joined (also a group in the States) so there are hundreds and hundreds of us sufferers all searching for relief.
So many people have replied on this thread too (and other threads on the same subject) and we are all in the same boat ... need relief, answers , help ... and most of all freedom from this wretched problem.

May I say to anyone here... I am very happy to chat . I have no answers , but can totally sympathise with one and all .

Hi everyone, I've just come back to this after almost a year. To date I've seen drs, dentists, an Oral Consultant privately (don't waste your money) although he was absolutely honest and gave me the best piece of advice of all of them, "You may just have to tough it out!", an ENT consultant who asked me if I'd tried dental floss!, 2 separate consultants at the Dental Hospital and after waiting 16 weeks, a Pain Management Consultant. I've tried Amytriptilene and Carbamazepine without success and have been give Pregabalin to try. Gradually through avoiding certain foods, coffee, alcohol, citrus fruits, vinegar and vinegar based sauces, chocolate to name a few, I have learned to live with BMS and although it has never gone completely it has certainly reduced in intensity to the point where some days I hardly notice it and then BAM its back with a vengeance! Like Sheena, I've joined 2 support groups, the H.O.P.E Group based in the US and BMS UK of which I've now become an administrator. As to the cause, who knows? there are many theories such as hormonal, post menopausal etc, none of which I believe in. From the information I've gleaned my personal opinion is that some kind of health trauma can trigger it then anxiety and stress fuel the fire. The one good thing for me that has come out of it is I've found a strength I never knew I had and made many friends, especially Sheena who I chat to often and has become a great support.

I previously had BMS in 2009 after a tooth extraction. I have seen every consultant in Britain to get a diagnosis. I was put on antidepressants. The pain seemed to go after a couple of years so I stopped the meds. This January it came back again so back on the meds. I am hoping it will go again!

Littleduck, you are feeling now?? I have this awful condition too and am doing my best to deal with it. I take 20 mg amytriptyline and am getting some relief from this . I believe mine was triggered by having a wisdom tooth removed 4 months ago. Sending love to all of the sufferers out there .

Hi littleduck, I've just read your long thread regarding BMS. I too have been diagnosed with this and am wondering how you feel now . It's really hard to get my head around this condition but I'm really trying my best .

I had burning mouth syndrome at the age of 68. Finally ended up with an oral consultant who advised I take Difflam oral wash or spray ( over the counter) and after a few weeks it went away .....if it flares I just go back to the Difflam . Homeopathy helps as well

Hi Tiffany , I have a burning tongue 6 months now. I found this site as I’m looking for tips to move forward with this. How are you doing now?

I too have been dealing with this for 3 years. It came on suddenly and sometimes it is so bad it keeps me up. I have tried every toothpast on the market. Some help for a few days, but it comes back. I am rinsing with baking soda at this time which helps the burning sinsation tremendously. I too have had blood work that has all been normal, they tell me it was a reaction to medication. My dentist says I have healthy teeth and gums. Thank you all for sharing your experiences on here, I never thought I would still be dealing with this after 3 years. Pray constantly for relief.