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

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I forgot to mention in my last post that I also take a cocktail of antidepressants along with the gabapentin. A little Wellbutrim, a little Trazodone and 10mg of amitrytaline before bed. That might be helping. But I don't know why Lyrica alone wouldn't help all of you? If you have had all the tests and ruled out herpes, infections and cancer it should be the cure. Yes, my BMS gets worse if I'm under stress. So psychotherapy might help lessen the symptoms. But upping the Gabapentin to a max of 900mg per day does the trick for me. Lyrica is the more expensive and the more potent version of Gabapentin. I wish I could afford it because it does a better job.

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Yes!! Now that I think. I also suffer from anxiety and depression. I have been on medication most of my life. I am very very lucky though. My husband is a physician so most medications are easy access to me. Just a yearly visit to my GP and I am set. So maybe the cure is antidepressants AND Lyrica. 150 mg of Bupropion SR (Welbutrim) plus 100 mg Trazodone and 10mg of amitryptoline (which lengthens the effect of the Trazodone) knock me out at night and I hate the groggy feeling I get in the morning. But all my anxiety and dysphoria are gone. I would definitely would ask your doctor if you can try this. Good luck!

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@laci80525

I found out it is caused by virus.That was after testing done.

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Thanks for the information. This is helpful.

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@laci80525

I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed . Came home with a packet of information just like what you get off the internet. Was very expensive for Insurance Company. Later went to Anchutz right in Aurora Colorado. Dr Nagel is a researching Nuerologist for Burning Mouth. Referred to another Dr to have nerves blocked. As far as Mayo, wish I would have seen neurologist there vs Dermatologist. Just my opinion.

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If one received Botox it seems you’d keep biting your tongue. I would say that it’s not fda approved. That would mean that it has been tested and a call far and wide Had gone out for test subjects. As bad as bms is I would never be a test subject for the injections. I do realize that there is times all of us suffering from this would trade years of our lives for a cure. There is a difference between fda approved and fda cleared. Cleared means that it will not hurt you and approved means it’s been rigorously tested and shown to be effective. Mark my word 1 Day Science and Medicine will understand it and then
BMS sufferers will have a treatment and hopefully a cure. Until that day comes we all have to help ourselves and continue to discuss it in forums like this. We just can’t give up hope.

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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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The MRI ,and I add ,I had at least 3.
They show nothing.Always same answer.
Brain is fine.
There is an operation, Dr goes into the part of the brain,where the nerve that's causing your mouth to burn
Then they put a sponge under that nerve,so it rests on the sponge and pain free.
It is such a delicate procedure,it's a risk.
Ypu can have a stroke, possibly die,I'm not sure it even lasts long.
I just know the pain ctr.where I go, says absolutely no.
He said extreme, what the heck am i???

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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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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.

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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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