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teaspoon (@teaspoon)

Mouth burning and numbness all the time

Skin Health | Last Active: Feb 15, 2020 | Replies (18)

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@mamajomclane

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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Replies to "Burning Mouth Syndrome is a real diagnosis. I have been fighting for 3 years - even..."

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" …

I've travelled much the same path in finding relief for my BMS. I now have to go off Clonazepam and am researching CBD oil, dose and compatibility with withdrawal from Clonazepam. If you happen to have any info on this, I'd appreciate it.

Have you considered estrogen oral troches

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