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

@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste… I will do that immediately. We are in a Rehab Center (due to hubby’s nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash… and I think it does help. As to the oral surgeon… we did go to one and he said he doesn’t treat TMJ or BMS … then referred us to another dentist that bills himself as a “maxillofacial pain pathologist” … very expensive and takes no insurance. Since we were already with a TMJ “specialist” who is willing to treat the BMS we didn’t go to the “pathologist” yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it’s eating into our life savings also! Again… thank you for answering me. It’s so good to know there are others out there going through the same thing. I don’t feel quite so alone. God Bless you!!!

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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!

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste… I will do that immediately. We are in a Rehab Center (due to hubby’s nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash… and I think it does help. As to the oral surgeon… we did go to one and he said he doesn’t treat TMJ or BMS … then referred us to another dentist that bills himself as a “maxillofacial pain pathologist” … very expensive and takes no insurance. Since we were already with a TMJ “specialist” who is willing to treat the BMS we didn’t go to the “pathologist” yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it’s eating into our life savings also! Again… thank you for answering me. It’s so good to know there are others out there going through the same thing. I don’t feel quite so alone. God Bless you!!!

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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

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste… I will do that immediately. We are in a Rehab Center (due to hubby’s nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash… and I think it does help. As to the oral surgeon… we did go to one and he said he doesn’t treat TMJ or BMS … then referred us to another dentist that bills himself as a “maxillofacial pain pathologist” … very expensive and takes no insurance. Since we were already with a TMJ “specialist” who is willing to treat the BMS we didn’t go to the “pathologist” yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it’s eating into our life savings also! Again… thank you for answering me. It’s so good to know there are others out there going through the same thing. I don’t feel quite so alone. God Bless you!!!

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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

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste… I will do that immediately. We are in a Rehab Center (due to hubby’s nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash… and I think it does help. As to the oral surgeon… we did go to one and he said he doesn’t treat TMJ or BMS … then referred us to another dentist that bills himself as a “maxillofacial pain pathologist” … very expensive and takes no insurance. Since we were already with a TMJ “specialist” who is willing to treat the BMS we didn’t go to the “pathologist” yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it’s eating into our life savings also! Again… thank you for answering me. It’s so good to know there are others out there going through the same thing. I don’t feel quite so alone. God Bless you!!!

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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.

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@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

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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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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. .

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@sheetrock0131

I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri’s ct scans.I have been on seziure meds.and many more i can’t even remember.I have been to the best in the Boston area..No to much is known about this condition.I feel for you..I am 62yrs old,just retired and have this to look forward in my golden yrears..This is sad…

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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..

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@sheetrock0131

I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri’s ct scans.I have been on seziure meds.and many more i can’t even remember.I have been to the best in the Boston area..No to much is known about this condition.I feel for you..I am 62yrs old,just retired and have this to look forward in my golden yrears..This is sad…

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

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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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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

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@sheetrock0131

I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri’s ct scans.I have been on seziure meds.and many more i can’t even remember.I have been to the best in the Boston area..No to much is known about this condition.I feel for you..I am 62yrs old,just retired and have this to look forward in my golden yrears..This is sad…

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

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I have suffered from bms for over 25 years-no cure. I do find Lyrica helps a little, but better is using a very small, lightweight bite plate during the day. It keeps the jaw slightly apart and keeps nerves from firing burning pain. A dentist can make you a very thin one to try, or cheaper than that go to cvs drugs and bight their lowest priced bite plate and see it it helps. Those from drugstores are big and bulky but give you an idea to see if help comes. Than your dentist can make very thin ones for your

Good luc
Or try mm if in your state

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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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Happy to hear you decided not to have gamma knife.
All Dr’s in Boston hospitals will not touch anyone with this condition. It go aggravate the nerve and worsen.Gamma is only for trigeminal nerve problems.I know a woman who had trigeminal neuralgia, and gave her gamma knife.
He took away her pain.
It is not recommended for b.m.s.
Please read any liturature you can get.
I hope you don’t change your mind.
I’m surprised your Dr.would consider this treatment.
Believe me,I begged for it,but I know better now,after conferring with many Bostons finest neurologist.

Please fell free to contact me.
I to have been a sufferer for 20 plus years.
I am on cymbalta.Same as lyrica.
God Bless..
This condition is hell on earth,and devastates ones life.

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@adkhs3333

Thank you so much for the input! Excellent idea about the toothpaste… I will do that immediately. We are in a Rehab Center (due to hubby’s nutrition being severely impacted by a swollen, painful tongue) and they do have him on Magic Mouthwash… and I think it does help. As to the oral surgeon… we did go to one and he said he doesn’t treat TMJ or BMS … then referred us to another dentist that bills himself as a “maxillofacial pain pathologist” … very expensive and takes no insurance. Since we were already with a TMJ “specialist” who is willing to treat the BMS we didn’t go to the “pathologist” yet, but we may HAVE to soon. Not only is BMS starving my little hubby of nutrition, but it’s eating into our life savings also! Again… thank you for answering me. It’s so good to know there are others out there going through the same thing. I don’t feel quite so alone. God Bless you!!!

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My user name is sheetrock0131

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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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Have had burning tongue for ver25,years everyday the same horrific pain. Lyrica helps, but find that wearing a very thin ,ightweight bite plate during the day keeps the jaw apart just enough to quiet the firing nerves.m takes the pain away instantly. The smaller the better as large ones too bulky, etc.

Also if allowed in your state s great for pain.

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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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Connielaine,
Thank you so much for getting back to me. I will take all the info you shared with me and bring it to my next app’t with a new dentist I’m seeing in June who can hopefully help with creating a bite plate as you’ve described it. I’ll also be contacting a Dr. Andres Pinto from Case Western who was recommended to me by a friend in NJ who is a dentist and has heard of him as someone who may also be able and willing to try to help with this. Will let you know how I make out.

Do want to share with you all that I did meet with an hypnotist in Rochester NY who was very empathetic and helpful.. he put me a most restful state of mind and made a CD of the session with me so I could use it as needed- I’ve done just that and it does bring relief even if not lasting. So important to find people who “get this condition.” I find one of the hardest parts is to socialize (over food) with people who even though they say understand, obviously don’t. This is something the fellow from Rochester said I need to work on-went out yesterday to share in a graduation party (over food) found I could eat nothing without incurring pain and had a mild meltdown… got back in control and stayed at the party but it was all so difficult being around people who don’t understand what you’re experiencing even though they are well intendioned.

Have any of you ever gotten together to actually meet each other somewhere? I would love to know if that is a possibility?
Also, I too am having difficulty contacting you all in the most expedient way. That being said would you mind passing this message along to sheetrock0131- as you, she’s been so kind in her many responses and sharing of thoughts.

Again, my thoughts and blessings to all of you; so impressed by those of you who have been coping with this for years- just 2 yrs. in myself and it feels like an eternity- the isolation that comes with this is devastating.

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