Mayo Clinic Connect
Wanting to see if anyone knows of this an who to see for it primary has no idea
Hi @teaspoon. Welcome to Mayo Clinic Connect. Thank you for posting.
can you give me a little more information? Numbness in your mouth?
Burning Mouth Syndrome is a real diagnosis. I have been fighting for 3 years – even spent 3 days at Mayo (Jax) where all their tests indicate normal. They recommended 10mg+ amitriptyline to try, increasing 10mg weekly till symptoms improve. After a couple months I settled at 30 mg and my symptoms virtually disappeared for around 10 months. After that, a stressful situation at home likely caused symptoms to return. Since then I tried gabapentin 100 mg at night which did nothing, then 100 mg 3X day did nothing to help symptoms but DID seem to cause immediate heartburn/reflux so I stopped that and heartburn/reflux symptoms disappeared but burning mouth remained. After a few weeks with no meds, I restarted amitriptyline and am now at 40 mg in split dose (am, pm and bedtime)….burning mouth has reduced greatly but not gone….stress brings it right back so trying to monitor the stress. I am also using 600mg r-alpha-llpoic acid, frankincense oil, 25mg. iron supplements, occasional 5,000mcg. B-12. I also have had herpes simplex-1 issues since the burning mouth began so I supplement with valtrex in various strengths, depending on the mouth ulcers. I am currently doing 1 gm. 3X day to see if this higher strength knocks the burning down. As you research "burning mouth syndrome" many will indicate that it is hormone related which is another area that I have struggled with and I am now mostly off the bio-identical hormones that I have been on for numerous years. Many doctors also end up pointing their diagnose at reflux related issues but none of their drugs brought any relief to me. .This BMS issue seems to be a process of elemination of standard diagnosis which indicate "all normal" but we do not feel "all normal". In my case, stress seems to be a huge factor but we all know that stress is VERY difficult to eliminate and/or control. I recently visited a neurologist that ordered a brain MRI and more blood work which were also normal – more tests in search of an answer but yet more dead ends. This is a very long process – stay strong and diligent all. What works for some does not work for all is mostly what I have learned in 3 years of testing, diagnosing, trials and errors. Most of me is healthy and prior to 3 years ago, I took no prescription drugs, just supplements and hormones….now I have a long list of drugs I tried. Hoping for medical research and these blogs to find an answer to our burning mouth/throat quests.
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Actual burning feeling in throat, mouth right side gums – feels like strep throat – parts of days consistently worse that others – usually mid-afternoon till bedtime worst. All doctors exams found no reason for the symptoms.
I recently started using low dose CBDHemp oil internally and on my feet and hands in addition to my amitryptline….seems to help but only for a few hours. Have any of you had any success with the Hemp CBD oil internally or topically? I guess the next step will be the medical marijuana version of the CBD oil to see if the THC's help stop the burning. Input from all of you is so important in this evasive disease.
Has the doc given this condition a name? There is a condition called "burning mouth syndrome." Caused by damaged nerves. Very few docs know anything about it or what to do about it. There is a doctor in Boston who is known to treat BMS. Dr. Sook-Bin Woo.
My left side of my tongue feels as if it's scoulding hot every single day for 18 months
Yes, Burning Mouth Syndrome (BMS) was what Mayo designated. Do you or anybody have actual treatment experience?
Get Temp (2hrs) relief from 2 tsp water added to 1 tsp capsaicin
Sometimes strange isolated symptoms become more clear to the doctors over time – helps to keep diaries and eat good diet … – may help the docs to know when you notice the symptoms most –
Liked by Teresa, Volunteer Mentor
Those are great ideas.
If you are very bored and have a lot of time – or really miserable – get a book by a guy named Aminoff – and read it. It is about Neurology and Internal Medicine and – no primary care person has likely read it – it would be from a medical book store – talks all about reasons for strange symptoms. I read quite a bit of it at times – found it helpful.
Knew a woman who had painful vaginal tissue (every doctor she saw wanted to say something about great psychiatric stuff and relationship stuff) – later I found a book on general pain treatment (about five inches thick) that spoke of which ganglia and nerves were involved – that were pretty far away from the vagina – and also far far away from "marital discord and psychiatry".
A "syndrome" is often best "thought of" as a collection of symptoms. And "symptomatic relief" – helps – but also can "make it difficult to 'tease out'" side effects of things and new symptoms and – all sorts of things. Sort of like fever and sore throat can at first look like a virus – and later be a throat infection needing a certain antibiotic – and … Good to keep following with a good doctor. I worry about all the "excitement" of using "new drugs including the ones that used to not be legal" …
Burning mouth and sensation of puffyness constantly ive had this for 7 years
Liked by lauren123
Hi @teaspoon. You'll notice that I moved your post to the discussion you started earlier. I did this so that you can share your question with the members you've connected with about burning mouth syndrome. Click VIEW& REPLY in the email to see @mamajomclane's helpful messages describing the process of coping with burning mouth syndrome. @jshdma and @cyntiamom also added supportive information.
Teaspoon, you mention that you've had burning mouth and puffiness for seven years. Can you describe the mouth puffiness and how it affects you? What do you do to reduce the puffiness or relieve it?
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