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

Thank you very much for your comment. This is what the box says on the outside, hello, activated charcoal with fresh mint + coconut oil (4oz.) It comes in a black and brown box, it also says fluoride free. My wife doesn't fell the mint taste I am assuming that because the stronger activated charcoal taste covers what ever little mint taste may have. Hopefully this information might help you. Good luck.

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@rgpadilla

Thank you very much for your comment. This is what the box says on the outside, hello, activated charcoal with fresh mint + coconut oil (4oz.) It comes in a black and brown box, it also says fluoride free. My wife doesn't fell the mint taste I am assuming that because the stronger activated charcoal taste covers what ever little mint taste may have. Hopefully this information might help you. Good luck.

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@rgpadilla, thanks so much for the information. The HELLO I purchased is very different. It has no charcoal, and does contain many artificial sugar additives. no coconut oil. I will contact the 800 number and try to order the one your wife is using. Thanks so much. I'll let you know if I'm successful. Also, I don't recall if you said where you purchased yours, Walmart, Walgreens or another store. I'm happy it is helping her. I don't recall where I purchased mine.Thanks again!

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we bought it at Wal-Mart, price was shipper than other stores. (safeway / cvs, etc.) My impression is that the charcoal could be the one doing the trick. So far no burning tongue any more and no more chewing gum either. Good luck.

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@rgpadilla

we bought it at Wal-Mart, price was shipper than other stores. (safeway / cvs, etc.) My impression is that the charcoal could be the one doing the trick. So far no burning tongue any more and no more chewing gum either. Good luck.

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@rgpadilla, I so appreciate your response. I hope this lasts and lasts and ……….

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I have had burning mouth syndrome for several years now. I too, have been to different doctors. My primary physician sent me to an ENT, then to a naturopath, and finally to a neurologist. He prescribed Lamotrigine, 100 mg 2 tabs in the morning and three tabs every evening. It has made a huge difference in my life. I still have the syndrome, but hardly notice it anymore. I hope this works for others also.

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Thank you for that input. How long have you been on this medication? Any side affects with you as I read of many reported ones. Is this medication long term or does your doc think you can wean off at some point? Any additional info will be appreciated by many, I'm sure.

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@lynschupbach

I have had burning mouth syndrome for several years now. I too, have been to different doctors. My primary physician sent me to an ENT, then to a naturopath, and finally to a neurologist. He prescribed Lamotrigine, 100 mg 2 tabs in the morning and three tabs every evening. It has made a huge difference in my life. I still have the syndrome, but hardly notice it anymore. I hope this works for others also.

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@lynschupbach For BMS I have been through a series of drug suggestions, none worked. By now BMS has affected my entire mouth (thickened tongue, lips) as well as continuous burning sensation in various spots. These conditions have also affected my speech; I now have a lisp, for example. I have changed my diet drastically, including elimination of most of my favorite foods. Someone told me that it was caused by eating too many peppers (not hot, just sweet red peppers). It seems that this condition is very common, but most docs have never heard of it. Very discouraging to think this is IT for the rest of my life.

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@jshdma

@lynschupbach For BMS I have been through a series of drug suggestions, none worked. By now BMS has affected my entire mouth (thickened tongue, lips) as well as continuous burning sensation in various spots. These conditions have also affected my speech; I now have a lisp, for example. I have changed my diet drastically, including elimination of most of my favorite foods. Someone told me that it was caused by eating too many peppers (not hot, just sweet red peppers). It seems that this condition is very common, but most docs have never heard of it. Very discouraging to think this is IT for the rest of my life.

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Just curious as to if anyone thinks stress triggers more pain? At times I can feel my mouth and throat “fireing up” more than others. It never goes away but at times seems more severe when stress is going on.

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@destinnana

Just curious as to if anyone thinks stress triggers more pain? At times I can feel my mouth and throat “fireing up” more than others. It never goes away but at times seems more severe when stress is going on.

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@destinnana The med community seems to say that BMS is common in older women who are depressed, anxious, etc. I notice that it can be better or worse (mostly worse), but no known triggers. Except the long list of all the "wrong" foods.

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@destinnana

Just curious as to if anyone thinks stress triggers more pain? At times I can feel my mouth and throat “fireing up” more than others. It never goes away but at times seems more severe when stress is going on.

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@destinnana -stress definitely affects my BMS. I take more amitriptyline in these cases

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@mygrigio -try reputable neurologist in your area. Seems that many like me start with low dose amitriptyline and work up to good dosage for you.

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@jshdma

@lynschupbach For BMS I have been through a series of drug suggestions, none worked. By now BMS has affected my entire mouth (thickened tongue, lips) as well as continuous burning sensation in various spots. These conditions have also affected my speech; I now have a lisp, for example. I have changed my diet drastically, including elimination of most of my favorite foods. Someone told me that it was caused by eating too many peppers (not hot, just sweet red peppers). It seems that this condition is very common, but most docs have never heard of it. Very discouraging to think this is IT for the rest of my life.

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@jshdma – I have been dealing with this for several years and was first told it was reflux but I don’t buy into this theory in my case. What did help was amitriptyline starting with 10 mg and gradually increasing (Max 50 mg). It takes a little while for this to start working – I guess it needs to build up in your body to start calming the overactive nerves that are causing it. I’m pretty sure mine started with dental work that affected some of the nerves as TMJ on my affected side began around the same time also.
I also began using Hello toothpaste (the one With activated charcoal).
In addition I have been using several essential oil‘s( frankincense, myrrh, copaiba, eucalyptus) on my jaw, throat and bottoms of my feet several times today, especially at bedtime . I also Occasionally take CBD oil internally as well as mixed with the other essential oil’s when it is particularly bad burning…..the CBD addition is new so am still experimenting with dosage and frequency. My BMS is not gone but very manageable with all this.
I know it is very frustrating so I hope you find some answers from my journey.

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