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

Do you think a maxofacial oral surgeon who is a professor at Boston medical center with impeckable credentials would take a chance??
I value your opinion.
I too am a 18 yrs plus sufferer.
I read about a Dr in Italy who did studies on patients.All were successful.
I’m not sure if I’m doing the right thing.
My tounge burns,and sends sharp pain to the tip.
I also feel nerves in my face that react with the touch of a finger.
My body is tired of all this suffering.
I don’t have a life anymore.
I’m tired everyday, and spendost of my time in p.js.
I would give up a limb just not to suffer anymore.
Plenty of times I wanted to give up and take my life.
I wouldn’t do it,I have a wonderful family and a supportive husband.I’m weary and tired.
God bless you and give you peace from this dreadful condition.
Please write back.thank you..

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I know exactly how you feel. I live it everyday. Just look up Botox and see the possible side effects. I know how desperate we all are to find a safe effective treatment for BMS. I’d give my arm to get rid of it. Even a daily dose of a baby aspirin has side effects. I sincerely want the Botox to work, but for what I know I would not try it. I consider it too dangerous. We all have to be our own advocate for what is done to our bodies by physicians. The docs can’t even decide on what causes BMS. I just want all of us to be informed and not to be guinea pigs for every docs theory. Just be safe. Well I’m done preaching but I care for and understand our desperation for a treatment that will help us all.

Liked by Lisa Lucier

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Hi ,my name is Patty.I've been a sufferer for 19yrs.I've been to at least 6 Boston hospitals.
Sadly there is no cure for this condition.
Please look into laser.As of lately, some states are now giving botox to block the nerve.
You can read up on it.
It is helping people from 5 weeks to 5 months.
I've been seeing a maxofacial oral surgeon in Boston.
I think he's going to try laser first.
Botox sounds good, but if you get the wrong Dr.it can be extremely dangerous.
I've taken so many meds.
Acupuncture, and many other sources.
Nothing works.
I feel your pain.
If you need any additional info.and I can help.
Please do hesitate.
God bless.

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@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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You are right on target.there us no cure,nothing helps.
It's a damaged nerve that come from the brain.
I am a 19 plus yr sufferer.Tried everything, many many meds.
At least 6 Boston hospitals.
Professors of oral maxofacial surgery.
Look up botox treatment for b.m.s.
It is quite new,it is working.
Giving us hope.
Also look up laser treatment. It is also a new treatment.
Believe me when I tell you, I've done it all.
I got accupuncture.Sever al different people who practice it.
Nothing helps.
Surgery is deadly.
They put a sponge under the nerve,and that relives the burn.
It's dangerous, could kill you You can suffer a stroke,parallia
That's if you survive.
I'm interested in joining your group.
Please contact me.
I'm loaded with info.
Had many years to learn it all.
God bless..

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@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 received at least 25 shots per month for trigeminal neuralgia, by a neurologist.
They are usually given for nerve pain from the trigeminal nerve.As a result it did calm the tri.nerve,but it will not help with b.m.s.look into laser treatment and currently Dr's are giving botox shots in the inside of the lip.with good results.Please take some time to read about it on the internet.

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@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 trigeminal neuralgia as well as b.m.s.
I have been receiving nerve block shots for a year now.I get 25 per month.that's one day if shots.
It has helped my nerve,but not the tounge.I'm quite surprised they would do that in your mouth.
If you do have trigeminal neuralgia, seek out a good neurologist. Discuss the nerve blocks.I wish you luck.
God bless.
I feel your pain.

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I experienced this after a dose increase of Gabapentin. My Dr immediately lowered me back down to my 300 mg dose. She prescribed Lyrica to help calm down the receptors in my mouth, to let my mouth heal.. I also practice homopathic medicine and I gargled with peroxide for 1 minute, baking soda and water for 3 minutes. I did this 3 times a day until my mouth started to get better. Hope this helps somebody.

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Developed BMS over 1 1/2 years ago when I was 56, after a number of rounds of antibiotics, following the flu. ENT specialist told me it was something that I just had to Deal with as there was NO cure. It has greatly improved since then, just following a healthy diet, exercise, decreasing alcohol intake. Just recently realized that I’ve had a few weeks of no symptoms. I am a RN , and am not in to taking meds if not needed! A lot of people want a quick fix rather than try a healthier lifestyle change, which obviously, takes more time and perserverence. It certainly is a drag to have this. Wishing all suffers patience with their symptoms.

Liked by lauren123

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@minnie59

Developed BMS over 1 1/2 years ago when I was 56, after a number of rounds of antibiotics, following the flu. ENT specialist told me it was something that I just had to Deal with as there was NO cure. It has greatly improved since then, just following a healthy diet, exercise, decreasing alcohol intake. Just recently realized that I’ve had a few weeks of no symptoms. I am a RN , and am not in to taking meds if not needed! A lot of people want a quick fix rather than try a healthier lifestyle change, which obviously, takes more time and perserverence. It certainly is a drag to have this. Wishing all suffers patience with their symptoms.

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Hello….I’ve only suffered from burning tongue and mouth for a couple of years. I had a total paratoidectomy at mayo 18 years ago for a malignancy. Long story short…after 7 weeks of radiation txs my mouth is much different than presurgery and rads. After seeing several different specials, ENTs and GI. Nothing seems to relieve it completely but I’ve tried “oil pulling” with limited help. My best suggestion is to illuminate sugar as much as possible and over indulgences of caffeine This seems to help me. They have found nothing concrete linking this to my previous tx for my paratoid CA Has anyone been tested for a low brewing yeast infection in their mouth? I seem to be sensitive to thrush

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@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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@sheetrock0131 .. I never had this until my RA doctor put me on Methotrexate. It's a strong drug also used with cancer. Started with small sore on upper lip and grew from there. I had dental work just prior to starting the Methotrexate
It's starts to go away a no d then comes back. It hurts when my teeth touch it.

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@minnie59

Developed BMS over 1 1/2 years ago when I was 56, after a number of rounds of antibiotics, following the flu. ENT specialist told me it was something that I just had to Deal with as there was NO cure. It has greatly improved since then, just following a healthy diet, exercise, decreasing alcohol intake. Just recently realized that I’ve had a few weeks of no symptoms. I am a RN , and am not in to taking meds if not needed! A lot of people want a quick fix rather than try a healthier lifestyle change, which obviously, takes more time and perserverence. It certainly is a drag to have this. Wishing all suffers patience with their symptoms.

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Well with RA we have times with little to no pain. However RS can hit you suddenly and last in my case a week or two. I hate it but realize there is nothing I can do about it.

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@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.

Jump to this post

Thanks. I'm going to look into the botox for bms. I use it for migraines. You're right — stay away from surgery. Let's continue to stay n touch.

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@minnie59

Developed BMS over 1 1/2 years ago when I was 56, after a number of rounds of antibiotics, following the flu. ENT specialist told me it was something that I just had to Deal with as there was NO cure. It has greatly improved since then, just following a healthy diet, exercise, decreasing alcohol intake. Just recently realized that I’ve had a few weeks of no symptoms. I am a RN , and am not in to taking meds if not needed! A lot of people want a quick fix rather than try a healthier lifestyle change, which obviously, takes more time and perserverence. It certainly is a drag to have this. Wishing all suffers patience with their symptoms.

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Hello, @cajeffery, and welcome to Mayo Clinic Connect. Your input on eliminating sugar and avoiding overindulging in caffeine seeming to help you with the BMS is very interesting. How did you come to realize this? Also, wondering if you'd be willing to share more about what "oil pulling" is?

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BMS is a puzzling affliction, plaguing those of us who endure it with unrelenting intensity. I have found the only thing that brings a modicum of relief is dental grade topical lidocaine. Tastes vile but eases the pain. Hope this helps someone!

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Hi, @twentyfour7 — welcome to Mayo Clinic Connect. I've moved your post over to this discussion, where you will meet many other members who also suffer from burning mouth syndrome (BMS).

Thank you for your suggestion for what's helped you a bit for pain relief with this syndrome.

It sounds like you have really intense pain? Is this something you've had for a long time, @twentyfour7?

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