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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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste... I will do that immediately. We are in a Rehab Center (due to hubby's nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash... and I think it does help. As to the oral surgeon... we did go to one and he said he doesn't treat TMJ or BMS ... then referred us to another dentist that bills himself as a "maxillofacial pain pathologist" ... very expensive and takes no insurance. Since we were already with a TMJ "specialist" who is willing to treat the BMS we didn't go to the "pathologist" yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it's eating into our life savings also! Again... thank you for answering me. It's so good to know there are others out there going through the same thing. I don't feel quite so alone. God Bless you!!!

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Hello, @adkhs3333. just wanted to touch base and see how things are going with your husband. How is it going with the burning mouth syndrome? Did you get the help you were looking for?

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@destinnana

Can anyone add anything that helps to calm burning mouth syndrome down? It feels like my mouth and throat are on fire . It wears me down.

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My wife has tried Orbit chewing gum during the day and it seems to calm it down. Nights are the worst, she tried the gum while sleeping but you might run the risk of swallowing it. She tries to stick it on the back of the front upper teeth and that works most of the times.

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Thanks for sharing this! I will surely try it!

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Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed . Came home with a packet of information just like what you get off the internet. Was very expensive for Insurance Company. Later went to Anchutz right in Aurora Colorado. Dr Nagel is a researching Nuerologist for Burning Mouth. Referred to another Dr to have nerves blocked. As far as Mayo, wish I would have seen neurologist there vs Dermatologist. Just my opinion.

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@rgpadilla

Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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There is not a cure. The dr's can't even agree if the dentist, neurologist or primary doctor should take care of it. BMS has been in my life since 1994. I went to Mayo clinic way back then and they said I needed to see a psychiatrist, now they say "We know more than anyone."
The only thing that has helped me is to take a small dose of potassium chloride, 1/4 of a tablet RX. You can take too much of it so don't increase. Other than that I have tried many many things and I would not allow any dr or researcher to experiment on me. Never! It hard to say but there are only things that may help, many things that can hurt you, so it's up to you to find your own thing that helps your BMS.

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@rgpadilla

Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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Do you have to have a prescription for potassium chloride ?

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After 7 years with BMS I can say my life is finally changing for the BETTER. Not everyone will agree but please hear me out. I tired drugs, acupuncture, water, closing myself off and lots and lots of testing. Finally a friend suggested his psychiatrist. Right..I almost ended it....SO I gave her a chance. My way, no drugs, I can quit when I want and she have to be a believer in God. In the first months I saw her weekly then twice a month and on the second year once a month and after two years I felt I was able to handle it on my own. So far so good. I have flare ups but I usually can quiet them. I now understand what happens and why and how to help myself. The best thing for ME was the punching bag in my basement. When it flares up I get down there right away.I yell and scream at the people who are upsetting me. Most of the time its decisions that are being made for me, about me that I have no say in. Stuff from my dad to my kids and from my husband. This is NOT stuff that hurts me but things that affect me on a daily basis. I have always done for others and gotten stepped on because I didn't make a big issue about it. NOT NOW ! I push back and I fight back. It's my time so leave it alone.Best of luck to you all. Margie

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@rgpadilla

Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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Yes. There is an otc potassium pill but I can’t speak to the efficacy to that. I’m on lasix and I need it as a supplement to the diuretic. Talk to you dr because you can take too much. So don’t do it on your own. I can’t imagine a doctor would refuse such a low dose as 1/4 tab, but it’s not a drug you play with. It’s a drug that can affect the electric current of your heart. That’s why I say talk to your dr.

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@margaretdaniels

After 7 years with BMS I can say my life is finally changing for the BETTER. Not everyone will agree but please hear me out. I tired drugs, acupuncture, water, closing myself off and lots and lots of testing. Finally a friend suggested his psychiatrist. Right..I almost ended it....SO I gave her a chance. My way, no drugs, I can quit when I want and she have to be a believer in God. In the first months I saw her weekly then twice a month and on the second year once a month and after two years I felt I was able to handle it on my own. So far so good. I have flare ups but I usually can quiet them. I now understand what happens and why and how to help myself. The best thing for ME was the punching bag in my basement. When it flares up I get down there right away.I yell and scream at the people who are upsetting me. Most of the time its decisions that are being made for me, about me that I have no say in. Stuff from my dad to my kids and from my husband. This is NOT stuff that hurts me but things that affect me on a daily basis. I have always done for others and gotten stepped on because I didn't make a big issue about it. NOT NOW ! I push back and I fight back. It's my time so leave it alone.Best of luck to you all. Margie

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If the psychiatrist works for you then it works for you. I’m glad you found your “thing” that helps your BMS.

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