At first, Carol Wilkinson thought the burning sensation in her mouth was just another uncomfortable symptom of the menopause. But within weeks Carol, 69, found herself in agonising pain.
‘My tongue felt so hot, as if I had scalded my mouth by drinking boiling water,’ said the Doncaster-based NHS worker.
‘But no one could tell me what was wrong. I went to three doctors who all looked in my mouth and said everything seemed fine.
‘I was starting to feel as if I was the only person in the world with this problem.’ After pushing her GP to refer her to a local dental hospital, Carol was finally given an answer – she was suffering from burning mouth syndrome.
According to the NHS, this ‘painful and complex’ condition has one distinct symptom: patients all described a burning, scalding or tingling feeling in the mouth.
Some feel this constantly. Others say it worsens over the course of the day – or that it’s soothed by eating and drinking, but quickly returns. Usually the tongue is affected but the pain can also be felt in the lips, on the roof of the mouth or other areas inside the mouth.
Studies suggest burning mouth syndrome affects one in 1,000 people, meaning more than 50,000 adults in the UK could be suffering.
It’s most common in the over-60s and women, especially those who are post-menopausal.
According to the NHS, the ‘painful and complex’ burning mouth syndrome has one distinct symptom: patients all described a burning, scalding or tingling feeling in the mouth
Yet little is known about what causes it. Even more frustratingly, there is next to no medical guidance on how to tackle it. Now experts say more must be done to help sufferers.
The Mail on Sunday’s GP Dr Ellie Cannon mentioned burning mouth syndrome in her weekly column last Sunday – and we have been flooded with emails and letters from readers sharing experiences.
Dr Ellie asked readers to write in with advice on how they coped with the condition, saying she sees it often but has vanishingly few treatments to offer.
One woman said her frequent flare-ups caused a burning so severe it felt as though her mouth was being scorched.
Another described walking her dog in isolated areas so as not to bump into anyone due to the intense pain caused by talking.
A third claimed she’d begged her dentist to pull out her teeth, thinking it might end her discomfort.
Almost all of the letters contained stories of being passed from doctor to doctor and fobbed off without a proper diagnosis.
Many mentioned their frustration and distress at being left without support, relying on coping mechanisms from sucking ice to swilling with Tabasco sauce or oregano oil every few hours or drinking cider vinegar.
Carol, one of the hundreds to write to Dr Ellie, was lucky to find permanent relief relatively quickly. The dental specialist she was referred to had treated burning mouth syndrome many times – and immediately prescribed amitriptyline, a common drug used to treat depression and migraine.
After taking a 25mg pill every evening for a week, Carol’s symptoms began to lessen. In a week, they had disappeared almost entirely. ‘It was amazing. The burning isn’t completely gone but I’m 90 per cent better,’ she says.
Experts believe this anti-depressant – available on the NHS and costing 39p a pill – could be a mainstay of treatment. But many GPs don’t offer it as the National Institute for Health and Care Excellence (NICE), which guides doctors, offers no advice on burning mouth syndrome whatsoever.
Experts want this to change. Prof Kaveh Shakib, oral surgeon and burning mouth syndrome specialist at Harley Street Maxillofacial Clinic in London, says: ‘The big problem in diagnosis is the mouth looks normal on examination.
‘I’ve had patients who have struggled for years with doctors telling them that nothing is the matter. Some have burst into tears in my office when I diagnosed them, having previously thought they were going mad.
Carol Wilkinson, 69, thought the burning sensation in her mouth was just another uncomfortable symptom of the menopause, but was told she was suffering from burning mouth syndrome
‘Over time the condition eases but symptoms can continue for years. Without guidance on how to treat it, many are left in agony.’
For former secretary Patricia Marsden, 78, diagnosis took more than two years. ‘It started four years ago when I got a sore throat that didn’t go away,’ she says.
‘It wasn’t the same as a sore throat you get with a cold – it felt like a constant burning – and within weeks it had spread to my palate and occasionally my tongue. I tried several things – from taking antacids to avoiding acidic foods and changing my toothpaste – but nothing helped.
‘I became fed up being told nothing was wrong with me. Finally, I went to a private ear nose and throat specialist who diagnosed me. He prescribed medication and the burning went away. At last I can have a normal life again.’
So what causes burning mouth syndrome? Some studies suggest symptoms stem from changes in how the tongue transmits warmth, cold and taste to the brain – resulting from nerves malfunctioning, rather than any injury. Sufferers often describe the sensation striking almost overnight.
For some it is bearable, if uncomfortable. Others have been driven to depression by the constant burning pain.
Some believe flare-ups may be linked to hormonal changes, with the condition primarily affecting women around the menopause, when oestrogen levels drop. Men can suffer too, though they are 20 times less likely to than women.
Others find symptoms increase with talking or eating hot or spicy food, with patients advised by doctors to switch to bland diets.
Many sufferers say discomfort is more severe at stressful times.
Prof Shakib says the first thing GPs should do, if a patient comes in with suspected burning mouth symptoms, is to rule out deficiencies. ‘Low levels of Vitamin B12 or iron can cause a burning feeling in the mouth. This should be tested for and supplements given,’ he says.
‘It is also important to consider viral infections like Covid, ulcers and fungal infections, all of which can alter sensations in the mouth.’
Former secretary Patricia Marsden, 78, went to a private ear nose and throat specialist who diagnosed her with burning mouth syndrome
If these are ruled out, patients are diagnosed with burning mouth syndrome. But Prof Shakib warns sufferers may soon find themselves at a dead end. ‘Many have been turned away by several doctors who say nothing can be done, which isn’t true,’ he says.
‘While medications may not work for everyone, there are drugs available that can lessen symptoms and sometimes even get rid of them entirely.’
One of these is amitriptyline, which was shown in an American study, published earlier last year, to reduce burning mouth syndrome pain by more than half in all patients in a trial.
‘Though discovered as a drug to treat depression, it’s become well known that medications like amitriptyline also affect the nerves and they are now often used to treat chronic pain conditions,’ says Dr Tim Poate, oral medicine consultant at King’s College Hospital in London and a specialist in burning mouth syndrome.
Some scientists believe the drugs may increase neurotransmitters in the spinal cord that reduce pain signals.
Another drug in the same family as amitriptyline is increasingly considered, often as a better treatment, says Dr Poate. Nortriptyline – an antidepressant sometimes used for nerve pain, anxiety and ADHD – has fewer side-effects than amitriptyline, which can cause drowsiness and mouth dryness.
Mail on Sunday reader Rupert Sargeant, 56, was prescribed nortriptyline more than a year after symptoms started overnight.
‘I went to my GP as well as two consultant neurologists and no one was able to diagnose me,’ he says. ‘But after being seen at University College London’s Eastman Dental Hospital I was prescribed nortriptyline, which has been life-changing.’
If amitriptyline and nortriptyline are unsuccessful, Prof Shakib recommends a short-term dose of clonazepam. Used to treat epilepsy, he warns it can be addictive and should be a last resort.
‘It can be even more effective at clearing symptoms than amitriptyline but it’s not to be used lightly,’ he says. It’s taken three times daily for two weeks to break the cycle of symptoms.
‘Patients are advised to hold the pill in their mouth for as long as possible, allowing it to dissolve on to the nerve endings in the tongue, before spitting it out. This way, effects on the rest of the body are minimised.’
Given these effective treatments, why are so few offered them? ‘There aren’t enough studies looking at these drugs for burning mouth syndrome, so it’s hard for NICE to advise on them,’ says Dr Poate.
Yet early treatment is essential. ‘For patients who have had symptoms for years, medication is unlikely to completely resolve them as nerve changes in the mouth grow more difficult to reverse over time,’ he says.
Experts say for those unable or unwilling to take medication, there are natural options. ‘Evening primrose oil has been shown to be helpful for some patients,’ says Prof Shakib.
For Dorothy Ansell, 74, burning mouth syndrome pain relief came in a more unexpected form. She developed the condition soon after brain surgery – and soon found the pain unbearable.
After visiting several doctors she was eventually referred to the maxillofacial department of her local hospital, where she was prescribed amitriptyline.
This helped reduce pain but failed to end it. ‘Then two years ago I saw another doctor who said I should smear full fat milk on my lips and tongue,’ she says.
‘It immediately took the sting away. It’s been a wonder and I still keep a glass of milk handy.’
From vitamins to toothpaste… how readers beat burning mouth
I had been suffering from excruciating pain in my mouth – which neither my doctor nor dentist could diagnose – until I read an article by Dr Ellie Cannon in The Mail on Sunday about burning mouth syndrome last year.
I had recently had dental implants so showed the article to my dentist and she referred me to a mouth specialist.
After examining my face and conducting an X-ray, he immediately diagnosed burning mouth and prescribed me amitriptyline.
This has given me my life back as I was in such pain that I stopped socialising with friends and just cut myself off.
Andrea Davis, 74, Glasgow
I had burning mouth syndrome in 2020. I first saw a cancer specialist who told me there was no sign of mouth cancer.
I saw a consultant who suggested I take Vitamin B1 and Vitamin B6 as well as oral diflucan for two weeks. This cured it completely. I took the vitamins for a few months and then stopped. There has since been no recurrence in four years.
Shelley Jack, 76, Edinburgh
I have suffered with burning mouth syndrome for the past two years. It started during the night with my lips feeling like they had paper cuts as well as burning on my tongue and inner cheeks.
I went to my dentist first who tested me for Vitamin B deficiencies, which were fine. Neither they nor the nurse had heard of burning mouth syndrome.
So I went to the pharmacist who told me to try Oralieve mouth spray – which is also used by diabetes patients for dry mouth. The relief was instant – not a cure but very helpful.
Studies suggest burning mouth syndrome affects one in 1,000 people, meaning more than 50,000 adults in the UK could be suffering
Charlotte Mannings, 74, Wiltshire
I developed burning mouth syndrome after menopause – I saw a specialist who referred me to Charles Clifford Dental Hospital in Sheffield where there was a trial going on for the condition.
I was given pregabalin, which was quite devastating as I couldn’t speak properly and everything seemed to be in slow motion. As a result, I stopped taking it.
I’ve now realised that it’s often triggered by salt and my biggest improvement came when I switched to salt-free butter. I still avoid salty foods and the condition is manageable.
Lucy Hilton, 81, Yorkshire
My burning mouth syndrome started with menopause in my early 50s. After investigation I was diagnosed and treated with antidepressants, which doesn’t get rid of my symptoms but helps keep them under control.
Much as I don’t like being on antidepressants, every time I’ve tried going off them the symptoms flare up again.
One tip which takes a bit of practice to master is to keep a small amount of saliva in a pool at the bottom of the mouth.
Clara, 79, Kent
I suffered with burning mouth syndrome for nearly a decade. Then, last year, a consultant told me to avoid toothpaste containing sodium lauryl sulphate – a detergent that lots of brands use.
Apparently it can irritate some people’s mouths. I managed to find a toothpaste which didn’t contain sodium lauryl sulphate and, since then, I’ve not suffered from burning mouth syndrome.
John Golby, 82, Surrey
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