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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Jen, Alumna Mentor | @sandytoes14 | May 15, 2017

In reply to @adkhs3333 "Thank you so much for the input! Excellent idea about the toothpaste... I will do that..." + (show)

Hello @maggie45 and @connielaine I'd like to share a tip with you for using Mayo Connect
When you want to get someones attention type this sign @ and the username You will get a notification of the reply!

Have a good night!

connielaine | @connielaine | May 15, 2017

In reply to @adkhs3333 "Thank you so much for the input! Excellent idea about the toothpaste... I will do that..." + (show)

Please esplanade the system to me again. What is the user name. Sorry all this modern tech stuff is new to me. I would like to reconnect with someone.
Thanks
Connielaine

Jen, Alumna Mentor | @sandytoes14 | May 15, 2017

In reply to @adkhs3333 "Thank you so much for the input! Excellent idea about the toothpaste... I will do that..." + (show)

I'd be pleased to explain. When you signed up for Connect you put your name to identify you as Connielaine. My name here is sandytoes14. If you wanted to write back to me you would come to this page, click the reply button and then type@sandytoes14 and your message. Keep in mind that what you type is public, everyone on Connect can see it. So please do not give your phone number or email address in your post
You are doing great!
Jen

sheetrock0131 | @sheetrock0131 | May 17, 2017

In reply to @adkhs3333 "Thank you so much for the input! Excellent idea about the toothpaste... I will do that..." + (show)

Sorry I hit wrong letter.
Do not let anyone tell you,that you are crazy..This is a debilating condition,and Dr's won't tell you,but there is no cure.
I have been to Beth Isreal hospital, Tufts cranial facial pain clinic.Brigham & Womens hospital, and Mass General Hospital. .I also many years ago seeked treatment at Lahey Clinic..
If you take a look.at some liturature, from the Trigeminal,Burning mouth pain clinic,you will find, there is nothing they can do..Unless you decide to have your tounge nerve killed,then for the rest of your life,you will have no feeling,possibly a sagging face,and could bite off your tounge.As one Dr. put it,that wears thin as well.I'm so sorry for you and many o
ther who face this debilitating condition.
I'm 67 now,and I have no Golden years.
My days are spent in bed,most of the time in p.j's..I'm worn down from all these years if suffering. My mind and body are tired.I can also tell you all the different types of meds I have taken
I also had seen 3 healing priests,and several treatments of acupuncture. .
If I can answer some questions, please feel free to ask.
I'm sure I've done the whole route..
God bless, and to all the other people,who live hell on earth.

sheetrock0131 | @sheetrock0131 | May 17, 2017

In reply to @penny243 "Hello Friends, To introduce myself, I am a 73 year-old woman, married, retired. I have had..." + (show)

@penny243

Hello Friends, To introduce myself, I am a 73 year-old woman, married, retired. I have had burning mouth, mostly tongue, symptoms for about 4 months. I studied this on the Internet and knew from that what it was. My ear, nose, and throat doctor, on my second visit, diagnosed it as burning mouth syndrome. I lost some weight because most food doesn't taste good and chewing seems to irritate my tongue.
I feel for all of you who are suffering. I appreciate hearing about the steps you have taken, and I have benefited from your input and other suggestions on the Internet. I will try to share with you some of my strategies for dealing with this debilitating condition.
About 3 weeks ago I began a liquid diet. I use a blender and include cooked meat and cooked vegetable pieces and bread. I use a smoothie straw, placed in the corners of my mouth, between my gums and tongue, far back. This is in order to bypass my tongue as much as possible because food doesn't taste good and chewing seems to irritate my tongue, and the straw use limits the excess use of my tongue. I usually use the same food for every meal.
Food I put in the blender, if you care to read on: Meat pieces--so far it's been mainly boneless, skinless chicken breasts boiled in water. I cook several pieces at a time, in a 6 quart pot, and put it in individual packages in the freezer part of the refrigerator for later thawing and use. I save the broth and sometimes use it for part of the liquid in the blender. Chop chicken or cut in small pieces, about 1/4". Frozen peas: I cook a large package in the microwave in a glass container and use from that. (I received for my birthday a many-piece set of Pyrex glass containers with lids.) Cooked fresh asparagus pieces. Canned French-style green beans. I hope to look for the unsalted the next time I shop. Sweet potatoes, boiled in water with skin on during cooking. I like to cook 3 large ones at a time. I later discard the skin when using the sweet potatoes. Bread--I found it easier to cut the bread into cubes soon after removal from the freezer. Before blending I add water or liquid--at least enough to cover the food. I tried cooked broccoli, but I didn't like the bitter taste it caused. In blending I add water or liquid--at least enough to cover the food. For fat in my diet, I swallow or drink 2 teaspoons of Almond Oil daily, about 1/2 teaspoon at a time, spaced during the day. I found it to to have a more pleasant taste than other oils. It is available in the grocery store.
I had a blood test recently and my B-12 and iron were good. The ENT doctor recommended B complex supplement, which I already had been taking. Also my family doctor recommended a multi-vitamin and mineral supplement. I also take some other medicines and supplements, which I list on my doctor visits. I use Crest Tartar Protection toothpaste. Sometimes, instead of brushing after the meal, I use it more like a mouthwash--putting it on my teeth and then squishing around in my mouth. I have found that it is not as minty as other Crest toothpastes. It is a little biting, but tolerable, and it makes my mouth feel somewhat refreshed after a meal.

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Welcome to my world..It has been 20 plus years of this hell on earth.I have done everything, and been everywhere.
I've been going to a pain center,where I receive shots in the head,for trigeminal neuralgia.
But nothing can cure this deviating condition.
It causes depression,anxiety.
I no longer live a normal life.
I struggle everyday,just to get out of bed.
I feel for you..
I hope maybe you will get some relief.
God knows I have tried everything. .
I'm tired both mind and body..
If you have any questions, please feel free.
If I don't answer right,it's not because I don't care to,its that most of the time,I don't even look at my mail..
God bless

sheetrock0131 | @sheetrock0131 | May 17, 2017

In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)

Hi Elaine,my name is Patty.I seldom connect,not because I don't want to,its because I'm in hell everyday.I have no interest in anything.
I'm loaded with info.Someone said it right.
It's damage to cranial nerve..
You would be shocked to read where I've been,and what treatments I've gone through. .
It's hell on earth.
I'm a 20 plus year sufferer.
Live in Boston,and I've been to all the finest hospitals in Boston..
Nothing works.
You can have that nerve killed,but it's not recommended. Your will have no feeling and your cheek will sag.Yout could possibly bit your tounge.I tried a temporary shot,I had to place my food on one side of my cheek,and chew so slow.
Dr said not to do it,that wears thin also.
I was so desperate, 2 friends went to Lourdes,in France,they took me so many bottles of holy water.I poured it on me and in my mouth.
Nothing works.
God bless you. .Feel free to contact me. .

sheetrock0131 | @sheetrock0131 | May 17, 2017

In reply to @sheetrock0131 "I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri's ct scans.I..." + (show)

As a 20 plus yr sufferer,I too did homework on gamma knife or sober knife.
All Dr's said the same thing.It could make you worse.They use this procedure on people who have trigeminal neuralgia. They zap the trigeminal nerve and in some cases,it helps.
There is also a surgery that is dangerous.
They go into the part of the brain,where this nerve is,and place a sponge under the nerve,so you no longer feel the burn.
I know a woman who has m.s.they did the surgery on her,it lasted a few years,but came back.
I hope this helped you.
God bless..
Feel free to contact me..

sheetrock0131 | @sheetrock0131 | May 17, 2017

In reply to @sheetrock0131 "I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri's ct scans.I..." + (show)

I'm sorry,I spelled a word wrong.
It'siberknife

connielaine | @connielaine | May 17, 2017

In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)

My horrible pain is burning tongue which I have had for 25 years plus. Saw many facial pain Drs. Various places in us n. York. Atlanta, Bethesda, me., cedars sania in Los Angeles rang many tris to Gainesvile, fl.to their facial pain specialists with no help anywhere. I believe this to be nerve problem, and if I wear very thin bite plate the pain is gone immediately. If you were given a night bite guard you know how bite plates work-keeping the jaw apart so no nerv connection. You might try that if you have not. To see if tha would work you can purchase a small on at cvs drugs and see if it gives you relief. They are bulky, but just a test . If it helps your dentist can make you a very small-clear plastic bite guard which you can wear in daytime. Also, if available in your state maybe trying mm
Elaine

connielaine | @connielaine | May 17, 2017

In reply to @sheetrock0131 "I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri's ct scans.I..." + (show)

I went to gamma knife dr., but decided against trying it-too scared.
Try light weight thin bite plate

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