burning mouth syndrome 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

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Yeah I’ve been through the whole route too 🙁 including almost losing my life after trying to get off of Klonopin!!! Nasty medication & controlled for a reason!! I maintain with Neurontin, ALA, Vit B & Zoloft. Dr’s are just clueless…. How are you maintaining & doing?? Its just awful I’m so sorry you have to deal with this too!! Good Luck & God Bless 🙂

@bryleeraye

I am 53 and I have had burning mouth for about a year now. I have been to dentists, pychiatrist, family doctor and everyone of the docs tell me to see another doc it is so frustrating … I am bipolar and take meds for it but this is a very depressing ailment in itself. All the docs look at you and don’t know what you are talking about, so I do my own researching all the time and I found this site….if anyone has found something that helps PLEASE let me know.

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I have found a wonderful group on Facebook. They are way ahead of dr’s. I urge everyone to join us and discuss what you are going through. I went to Mayo and was so disappointed at the end of my appt. They do not know anything. Please try FB.

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Hi Lauren,I am so glad to finally talk to people who have this condition.For 18yrs i have never talked to anyone who knows what i’m going through.I will say you are correct about pulling teeth.An older man in a nursing home was suffering with this condition and they had all his teeth extracted,his burning did not stop/I to have had a lot of dental work done to me in the past.Alot of extractions and i often wonder if that has played a part in my condition.I enjoying talking with you and others,believe me it helps..Sometimes i feel it just might be genetic..Please feel free to keep in touch.We all need one another..

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I went to Tufts cranial facial pain clinic in Boston,Ma. I spoke with a surgeon and he told me this comes from a nerve in the brain,he was willing to give me shots to settle it down,but there are risks.I could have permement numbness and my cheek could sag with no feeling as well.After 18yrs i might consider it.I just can’t see myself living another 20yrs(if i do!!!) with this awful condition..I pray for all who suffers from this..

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Yes, we do need to communicate, since there seems to be such a lack of understanding in the medical community. It does indeed help to have a support group for this problem. There seems to be a lot of disagreement about causes, diagnosis, treatment options and long term issues. Does anyone get over this problem? Where are the folks who have found successful treatments, or are they dealing with a different condition?

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I have been on clonazapam for many years,its temporary.Once it wears off my burn is back.I also burn in throat,and have pain in ear and right side if my head.To be honest with you,somedays i feel like ending it all…

Liked by lauren123

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Lauren,after 18yrs and so many Dr’s i wonder is there really a cure?I think there is no funding for this,and it’s put on the back burner.I enjoying comunicating with all those who suffer from this condition…I believe were are all having the same problem,and the same condition…

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Sheetrock, I am 63 years old and this condition began for me in 2004. I also believe there is little funding for this and that doctors don’t know how to treat it.

Has anyone gone to the Mayo clinic in Phoenix? They have a web site for this condition so I would think they have some insight into this problem. I had a very bad experience at the Pain Clinic at the University of Colorado in Denver. They wanted to give me a round of shots in the neck, although they had no reason to believe it works, other than saying that it helps migraines.

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Your symptoms are very similar to mine. I can relate to how desparate you feel. Please continue to share with others on this site.

I have had relief from yoga, which I have practiced for many years. I’ve had to adjust some of the positions to accomodate the pain. I’ve also been very fortunate in finding a chiropractor who uses a “pro-adjuster” to re-align my neck and spine when needed. This is a very gentle, computer guided approach which is non-invasive and helps with the TMJ issue.

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Lauren,thanks for the reply..Tufts cranial facial clinic in Boston wanted to give me shots in the tounge.This could cause permenent numbness in mouth and facial drooping..It would probably settle down the nerve,and if it flared up again,he could repeat the shot..I am scared to do it…I’m thinking of Mayo clinic..

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I’m certainly no expert but I’ve been advised by several doctors to avoid taking this kind of shot because the side effects are not well researched. It all depends on each person’s symptoms, etc. as to what works and what doesn’t. I’m also about to try the Mayo clinic. Some doctors think I have atypical trigeminal neuralgia. It is characterized by dull, continuous pain. There is simply no cure. One doctor told me to avoid surgery and to find ways to manage it. That’s what I’ve been doing, but it takes a lot out of me. I focus on the fact that it is not a fatal disease and that other people have it much worse.

I’d love to hear more about the Mayo clinic and how the treatment protocol works.

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Hi Lauren ,if they think you have trigeminal neuralgia,make sure he tells you ab out gamma knife or syber knife..I have a friend with trig.neura. she has been given the treatment,and is pain free.I was hoping that was the case for me,but unfortunatlyi have a different problem with my burning mouth..Trigeminal consists of one nerve.In my case i have it with nerves all over my face..Please look up syber knife or gamma knife..It is a great treatment..There is no cutting involved..The Dr’s put your head in a sort of helmet,and zap the nerve.Please mention this procedure to your Dr and let me know what you find out..Believe me when i say it works for people with trig.neuro..

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Hi sheetrock, I have a form of trigeminal neuralgia which is termed atypical trigeminal neuralgia. Many of the treatment for tm don’t work don’t work for people with atypical neuralgia, such as those you mentioned. By the way, atypical facial pain and burning mouth syndrome seem to be used for the same condition. I wish I could undergo a procedure, but it looks like meds, dental care and yoga are the best treatments for me at this time. Thanks for the note.

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Hi Laure,have you looked into the gamma knife or siber knife? Maybe you have,i know i was so dissapointed to find out i to was not able for this procedure..I have many nerves in my face i feel.It’s like hair falling down my face.I have both bms and a form of neuralgia…I’ll look forward to hearing from you..Take care.

@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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I’ve been told that these won’t work for me either. Have you tried Klonipin and cymbalta, along with ambien and doxipin to sleep? These seem to work best for me, as long as I get enough sleep and do a lot of yoga. As someone mentioned, we all have to be careful we don’t have too high a dosage. Some people have reported that Lyrica is helpful, but of course, everyone seems to respond differently. I hope you are doing better.

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