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mygrigio
@mygrigio

Posts: 1
Joined: Aug 05, 2011

burning mouth syndrome very severe

Posted by @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

REPLY

@puspa

@sheetrock0131 exactly the same condition as mine. I feel the burning and all the pain in the right side of my tongue, my right neck, right ear. I see my tongue is getting whiter. I'm afraid, depressed and hope it is only a nightmare to wake up. No one can feel my pain. They only listen to me but nothing comes to their mind of what is it i am talking about. I felt so alone.

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@sheetrock0131 YES, others can feel your pain. This is an awful, life-destroying condition. It is also true that doctors have no idea what to do about it. The highest level specialist in "oral pathology" in New York City told me nothing can be done. Biggest NYC hospitals couldn't refer me to anyone.

@mamajomclane

Speaking of toothpaste – I just recently learned of a natural whitening toothpaste that has activated charcoal. The toothpaste is black and minty and claims to have pain relieving properties….for me it helps long enough for me to get to sleep. The brand is HELLO. My neighborhood Walmart has it but not CVS or Walgreens.

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I had been looking for your post for a while until I finally found it. In reference to the tooth paste, thank you from the bottom of my heart, my wife is a 3 years sufferer with the burning tongue problem, nothing helped until we try this Hello toothpaste, the burning tongue is 95% effective probably 98%. She used to spend the daily shewing Orbitz gum all day until the night when it will get worse. Now no more gum, no more burning, once in a while a little sensation on the tip of the tongue but dentist said it might from her moving the tip over the lower partials that could cause irritation on the tip of the tongue. I hope everyone with similar situation try this tooth paste is a miracle. Thank you very much and lets spread the word. @mamajomclane

Liked by Jamie Olson

@rgpadilla

I had been looking for your post for a while until I finally found it. In reference to the tooth paste, thank you from the bottom of my heart, my wife is a 3 years sufferer with the burning tongue problem, nothing helped until we try this Hello toothpaste, the burning tongue is 95% effective probably 98%. She used to spend the daily shewing Orbitz gum all day until the night when it will get worse. Now no more gum, no more burning, once in a while a little sensation on the tip of the tongue but dentist said it might from her moving the tip over the lower partials that could cause irritation on the tip of the tongue. I hope everyone with similar situation try this tooth paste is a miracle. Thank you very much and lets spread the word. @mamajomclane

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@rgpadilla – soooo very happy “HELLO TOOTHPASTE” helped your wife…may it continue.

Liked by Jamie Olson

My husband has this and his is related to his autoimmune liver disease. However, it is not necessarily related to liver disease so you need to have a good diagnosis first to make sure you don't have some other related medical problem. He uses a prescription mouth rinse called "Mary's Magic Mixture" which helps. Most dentists and pharmacists are familiar with it.

@kathylo

My husband has this and his is related to his autoimmune liver disease. However, it is not necessarily related to liver disease so you need to have a good diagnosis first to make sure you don't have some other related medical problem. He uses a prescription mouth rinse called "Mary's Magic Mixture" which helps. Most dentists and pharmacists are familiar with it.

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@kathylo Thanks for this info. In my case I have no other diseases. This came on for no discernible reason or medical cause.

@rgpadilla

I had been looking for your post for a while until I finally found it. In reference to the tooth paste, thank you from the bottom of my heart, my wife is a 3 years sufferer with the burning tongue problem, nothing helped until we try this Hello toothpaste, the burning tongue is 95% effective probably 98%. She used to spend the daily shewing Orbitz gum all day until the night when it will get worse. Now no more gum, no more burning, once in a while a little sensation on the tip of the tongue but dentist said it might from her moving the tip over the lower partials that could cause irritation on the tip of the tongue. I hope everyone with similar situation try this tooth paste is a miracle. Thank you very much and lets spread the word. @mamajomclane

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@rgaadilla –Thank you so much for the HELLO toothpaste information. I bought some recently, but it has peppermint in it. I have to avoid mint flavors. What type did you use.?

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.

@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!

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.

@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 ……….

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.

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.

@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.

@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.

@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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