Burning Mouth Syndrome. I have it very severe.

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

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@bgadams

I was diagnosed with BMS 2 1/2 years ago. Two oral surgeons were unable to do anything for me. Then I went to a neurologist who gave me a rx for Lyrica (pregabalin). That helps manage the paid a lot as long as I avoid any acidic or spicy foods.

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Yes I suffered for 4 years with burning mouth, tongue, and tooth. Had many doctors and dentists and specialists and tried many things. The answer was found after an emergency room doctor treated me for acid reflux and suggested I get an esophagus scope which I did. Diagnosed with gastritis with hyperplasia, acid reflux, bile reflux, and Barrett’s. Treatment began 7 months ago. Took two months to see improvement in burning but after two months I was able to stop the pregabalin, pain pills, and baclofen I was taking. Treatment was two 20 mg Prilosec twice daily and liquid sucralfate 10 ml : times daily and at bedtime. Lots of patience as after one month I could only see very slight improvement. Took two months of treatment to really know treatment was helping eliminate burning mouth. Reflux was silent as I never knew I had reflux. The burning mouth hurt so bad it made me physically sick. Life is good again. I can’t drop my PPI dose or I start burning again. I have had to switch PPI’s a couple of times because of side effects so now I take Nexium OTC same high dosage. Prilosec gave me a nuisance cough which got worse. I remember when the cough started I said “well I got rid of the burning mouth but now I have this stupid annoying cough!” The PPI pantoprazole caused my lower legs, ankles, and feet to swell and hurt. Omezaprole (sp?) caused lower left front pain which stopped when I switched to Nexium. I do have to continue using Nexium OTC two 20 mg twice daily and the sucralfate liquid 10 ml 3 times daily and at bedtime. I also follow all guidelines for reflux on line in regard to eating, drinking, and sleeping.

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@bgadams

I got some relief from a neurologist who prescribed Lyrica (pregabaling), Also avoiding any acidid or spicy food/drink.

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If you are avoiding acidic and spicy food you may have acid reflux. After 4 years of burning I finally had an esophagus scope. I had silent reflux and now Barrett’s. Treatment sure has helped me

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@lsr9

Does anyone have symptoms along with their BMS that your mouth feels like there are thick strings in it, sometimes more prickly things that feel very sharp between your teeth and gums. You try to pull them out with your tongue but there is no end. Relief comes from magic mouthwash but is only temporary. I take gabapentin 900mg/ day, alpha lipoic acid, Lexapro with not much relief. I have been to an oral pathologist, neurologist and don’t know where else to go.

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Have an esophagus scope. I finally did. After which I was diagnosed with gastritis with hyperplasia, acid reflux, bile reflux, and Barrett’s. Treatment with Prilosec OTC two 20 mg twice daily and sucralfate liquid 10 ml twice daily and at bedtime and following all guidelines online for reflux, eating, drinking, and sleeping, gave me relief after two months of treatment gave me relief. Took patience as after 30 days of treatment I only saw a slight improvement in burning mouth. After 69 days I was able to stop all the other medications I had been taking for burning mouth the past almost 4 years. I have had to switch PPI’s three times because of side effects so now take Nexium and I do have to stay at the higher dose of two 20 mg Nexium OTC twice daily and sucralfate liquid 10ml 3 times daily and at bedtime. If I do get a burning breakthrough I take Pepsid complete OTC no more than twice daily. Life is good again!

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@elainetheresa

I am 77 and I have had BMS for 15yrs. I have been prescribed Prilosec, Dexilant,Alpha lopoic acid,magic mouth wash, Elavil,Neurontin,Carafate,Clonazepan.
I have also had Brovo PH, and acupuncture.
Lately I've read about low level laser therapy,but I haven't found any oral surgeon in my area that uses it for burning mouth syndrome.

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Have you had a scope of your esophagus? After suffering almost 4 years with burning mouth, tooth, and tongue and many medical and dental specialists, a few dental procedures, and allergy testing I finally went to emergency room. That doctor had my burning gone within the hour and recommended an esophagus scope which I got. I was diagnosed with gastritis with hyperplasia, acid and bile reflux, and Barrett’s. Took 2 months of treatment to see results . I follow all on line suggestions for treating reflux and Barrett’s including all lifestyle changes in eating, drinking, and sleeping.

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@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. On gabapentin and Lyrica. Nothing seems to help. Does anyone know a doctors name at Mayo clinic who treats this? Please help. Nanette

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Yes I suffered for over 3 years, had many dental and medical doctors. What finally helped was I got a scope of my esophagus. Diagnosed with gastritis w hyperplasia, acid reflux, bile reflux, and Barrett’s. Treatment with high dose PPI and sucralfate liquid 4 times a day gave me relief after 2 months of treatment I could stop all the other medicine I had been given for burning mouth. I also follow all guidelines on line for treating reflux including what I drink, eat, and how I sleep elevating upper body. Took time and patience. Still taking reflux medications. If I do have burning break thru I reach for a OTC Pepsid complete chewable and that stops the burning pretty quickly.

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@elainetheresa

I am 77 and I have had BMS for 15yrs. I have been prescribed Prilosec, Dexilant,Alpha lopoic acid,magic mouth wash, Elavil,Neurontin,Carafate,Clonazepan.
I have also had Brovo PH, and acupuncture.
Lately I've read about low level laser therapy,but I haven't found any oral surgeon in my area that uses it for burning mouth syndrome.

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Get an esophagus scope and include the test for acid reflux. I tried many things over a ; year period. Having the scope and treating for both acid and bile reflux is the best thing I have done but took patience and 2 months of treatment to see results The high dose ppi and sucralfate was important to my recovery. Even after 7 months of treatment if I lower my ppi dosage I will start burning.

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@susantaylor1

It’s been a gradual development for me, but got so I couldn’t stand it anymore. Was diagnosed by dentist who prescribed magic mouthwash. He knew nothing. Diagnosed by a second dentist who told me Gabapentin may help. Went to ENT, he had no clue what to do but did prescribe Gabapentin. I’ve only been on it for 2 days, but a lot of the black tongue calmed down, but still burning!
I can’t concentrate even on conversations. I’m so out of it, halfway thru the story I realize I have no idea what the other person is talking about!
The ENT also prescribed prednisone, but I’m not going to do that until I see if this gabapentin does anything.
I feel like I’m losing my mind. Next step is to travel to a teaching hospital to see mouth specialists, but I feel like I’m going to have the same outcome. I keep thinking I’ll get used to it but I don’t think so. The only thing that helps is drinking alcohol to help me forget about it!
This really sucks and I feel for you people

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I have been there for almost ; years. An emergency room doctor recommended an esophagus scope which I did. Results were gastritis with hyperplasia, acid and bile reflux and Barrett’s. Treatment with high dose ppi and sucralfate for two months gave me relief. I still treat. If burning breaks thru I take OTC Pepsid complete tablet and dissolve on my tongue which does stop that burning. I also follow all recommendations on line for acid reflux treatment regarding eating. Drinking, and sleeping with raised upper body, etc. it’s amazing! Life is better. Took lots of patience ( 2 months of treatment) to start seeing results. I highly recommend an esophagus scope and a tester for acid reflux.

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