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

@sheetrock0131

I have had my mouth swabed for a virus. It showed nothing.
MRI’s all they say is I have BMS NO CURE!!!! I don’t know anyone in the 20 plus years I’ve had this.That no meds,or therapist and psychologist can cure it.I’m sorry,but I don’t believe they can take it away.Maybe manage your stresses in your life.We all know and agree that stress heightens the burn,but never completely gone.
My heart goes out to all of the sufferes who have this horrible condition. .

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Yes I know about that. I believe they do that on the 5th cranial nerve which is the trigeminal nerve. Can have numbness as result or stroke and it would need to be repeated. They can dissect the nerve or use a ballon surgery also. Since I’ve been in the medical field for 40 yrs I know that I would not do it, too risky, that’s probably why your dr said no.

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This has become a very informative and supportive discussion. I was not familiar with Burning Mouth Syndrome (BMS) until I began to follow your conversations. I want to commend all of you for sharing your experiences, and for supporting and helping each other.
I have my own personal health conditions, and I have learned that when we are living with any kind of chronic or rare condition, that it is helpful to be able to be in the company of others who are like ourselves. We are not alone.

In my curiosity, I found this link that I would like to share. For those who are new, you can read an overview of BMS, along with explanations of causes and treatments. I am sorry that there does not appear to be any one standard answer.
https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/syc-20350911

May you enjoy a comfortable day.
Rosemary

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@sheetrock0131

I have had my mouth swabed for a virus. It showed nothing.
MRI’s all they say is I have BMS NO CURE!!!! I don’t know anyone in the 20 plus years I’ve had this.That no meds,or therapist and psychologist can cure it.I’m sorry,but I don’t believe they can take it away.Maybe manage your stresses in your life.We all know and agree that stress heightens the burn,but never completely gone.
My heart goes out to all of the sufferes who have this horrible condition. .

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I agree with this opinion. My PM doctor and others have said the same. It’s just too risky, and I have been told I have TMJ, TN and serious sinus issues.

Liked by phyllisrn

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Hi, all — Thinking about you all who are dealing with Burning Mouth Syndrome (BMS) and wondering how things went over the holidays. Wondering if any factors with the holidays made your condition any better or worse (e.g., more or less sleep, eating more sweets, drinking alcohol at parties, stress with hosting or during time with relatives)?

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I have been thinking of having my teeth out– what about you in America who now have access to a joint?

we in Australia are just starting to get it for chronic pain– I go to a pain clinic- am going again tomorrow– will try to get it– I also had Bowel Cancer twice chemo etc — 20 years apart Drs say it’s not connected. -I don’t think it is also- it started 7 years after my first chemo.

Dentist did some work as well and I think (sometimes ) he may have damaged a nerve. Believe me I know and feel for you all. GO OUT A LOT!!

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no they have not heard of it– The Pain Clinic I go to has– My doc gave me a copy of the Cochran report. I am on all of the mentioned drugs with no success.

My GP has another patient with it (poor her) but he knows how debilitating it is — so he will give me anything I want — within reason–Try Cochran report + BMS

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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 know this feeling have had all teeth pulled and implants put in this is the worst it has ever been sometime I do not think I can take anymore.

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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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Do not have the shots I had shots and was bedridden for a month and it took six months to get back where I was before the shots

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@dawn6604

I’m 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn’t stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can’t even kiss my husband. Any advice would be greatly appreciated.

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I’m a 18 plus year sufferer. I have been everywhere, all to the Boston hospitals. You.might want to go to the Internet and look at clonazepam, and cymbalta. Look into botox shots.Oral maxofacial surgeons are giving patients with burning tounge syndrome botox.It’s helping .No side effects. It can last anywhere from 5 weeks to 5 months.Believe me,I know what you are going through. My life has been miserable. There is no cure for this condition. Dr’s don’t no for sure how we get it.
I’ve had accupuncture and been on so many medications.
I know clonazepam is the only one mostly prescribed to patients with b.m.s.
I’m going on the 1st of February. I’m praying for sometime without this devil in the mouth.I pray ypu get some relief. Please.go to burning tounge and botox shots.Feel free to contact me at any time.
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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Can you please tell me where you got the shots???I was on the internet and found out that oral maxofacial surgeons ate giving patients with bms botox shots.
It has no side effects and can last anywhere from.5 weeks to 5 months.
Dr’s did a study on 5 people with b.m.s and out of the 5,one was a man.They gave the women botox and the man a placebo. All the women got comfort,and the man did not.
Please look it up.Just go to botox shots for b.m.s and you will find all positive news on it.
I’m going February 1st and I’m staying hopeful that it works.
Please let me know what kind of shots you got.
I appreciate it.
God bless

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@dawn6604

I’m 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn’t stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can’t even kiss my husband. Any advice would be greatly appreciated.

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Just curious, did the Botox affect your speech in any way?

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@dawn6604

I’m 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn’t stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can’t even kiss my husband. Any advice would be greatly appreciated.

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Yes I have had nerve blocks also. Now I am just on opiates and fentanyl and klonosapam now to have any relief. I have tried almost everything in the past 10 years. The leading Dr who is doing research at Anchutz did the test saying that it came from Shingle virus. I still believe it came from dentist as my teeth also ache. Many people with this believe invisignline braces help. I did invest in invisignline mouth guard. I cry In pain most every day by myself. Trying not to feel sorry for myself. I am 66. I am In a couple help groups and try everything. Some folks I think have something else wrong as they are young and only have for a short time and goes away. I just hope mine would go away.

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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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Just a question if you still in this forum. Why stay away from ice cream?. My wife has been suffering with the burning tongue for almost two years only relief is chewing gum (orbit – bubblemint) that is the one that she says it has help. She takes the ice cream to cool her tongue down.

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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’m not sure who you mean.I have no problem with eating food ie ice cream or any kind of food.I’m so sorry for you suffering. As a woman I have been suffering for over 19yrs.
I have done just about everything, and taken just about every medication they could give me.
Please look up botox for b.m.s.
Dr’s are now giving patients with this condition. There are no side effects and could last anywhere between 5weeks,to 5 months.
I’m going to see a maxofacial oral surgeon on the 1st of February.
Most insurance companies will pay.
It’s great news for us.
I tried acupuncture, healing priests.
Clonazepam, cymbalta, oxycodine, and many more meds I just can’t write them down.
Please tell me more about this problem.
If you need anything answered, please contact me.
I have much info.to share.
I pray you find comfort. .

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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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When I eat anything cold like ice cream it temporarily makes the nerves on my tongue zing all over the place, yogurt does the same thing too. Please never say there are no bad side effects to Botox use. There are side effects If it migrates from any insertion spot in the human body. Botox works by paralyzing muscles and nerves. If it should migrate to any respiratory nerves or muscles then you die for inability to breathe. If anyone wants to try it then I say I hope it works, but being a medical professional and a 25 yr BMS sufferer I would never try it!

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