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

@bonitav

I’ve read that the burning mouth could be a B vitamin deficiency. I know when I don’t get my B12 injection in a timely manner, I get a burning tongue. Has any doctor ever mentioned that possibility? Did some research and found this article from Mayo. Different issues identified here. http://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/dxc-20179960

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It is necessary to have a vitamin B injection, or does taking vitamin B under the tongue work as well for you? I know there is controversy
on this topic. Thank you, Bonita.

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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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Hi, the bite guards I have are wafer thin and small, so more comfortable. I got them many years ago, but sort of forgot about the help they provide. I Halppen to know a man who is in charge of dental department at a local small university.
He just recently made me 6 of them-two upper and 4 lower-not to be worn together, but to pick and choose. The material is very thin and he told me to trim them to my comfort, which I have been doing a little at a time.
He thinks by something between teeth it keeps nerves from connecting. Anyway when I have one in I feel NO pain. Even though they are thin sometimes feel a little bulky.
Anyway perhaps you could locate a dental college where they could make you a mold and a few plates. My friend tee he’s students to make false teeth, crowns, etc.
Maybe you could check your computer for city college and ask about dental students.
Where do you live-I am in Miami.
Keep in touch, please.

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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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Hi Connielaine,

Thanks so much for the prompt reply. Your description is very helpful. I will pass it on to my dentist, who also is a faculty member at a university.

We live in part-time in the Denver area so I will see what my dentist has to say. If I recall correctly, you also have trouble with your jaw. I have also been diagnosed with TMJ/TMD and see a chiropractor who is very helpful. He has consulted with a friend who specializes in neuro issues, and this has given him new ways to treat me. Some chiropractors I’ve seen have been no help because they don’t understand this condition. Sound familiar? He uses a special technique, and I will find more information about it if you are interested. He uses a computer at each session and makes small adjustments according to the image. I also have arthritis around the jaw area. Previously, I went to another chiropractor who was making me worse, so its very important to find the right one. I’m very interested in complementary therapy. I hope you stay in touch as well! lauren123

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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 have found that the only toothpaste that works is Biotene. There is the fresh mint and the Gentle Mint. I think the Gentle Mint in the green tube is by far the most tolerable. I also use the mouth wash several times a day when I feel throbbing or burning. Another option is TheraBreath Dry Mouth Lozenges for flare-ups. I hope this helps. My issue is gum pain, so this might not be the right suggestion. Best wishes.

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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 really do not have tmj problems. My bms is located in rear mouth, but no pain when chewing. It gets stiff by pain area, so I take Ativan 3times daily. Hope you can obtain some of these tiny bite plates-if they feel tight you can trim them easily. You could check wherever they are studying to make false teeth and/or other types of dental needs.
Again keep in touch.
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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Thank you very much… We have used the mouth was and the mouth spray and it is quite helpful to my husband. You can bet I will be getting him some of the toothpaste and the lozenges asap!!! Again… thank you!

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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 Connect, @penny243,

We’re so glad to have you join us here, and want to thank you so much for sharing your history, and all the valuable strategies and tips.
As you rightly said, burning mouth syndrome is indeed a debilitating condition, and I admire how you’ve taken charge of finding relief for yourself…that seems to be the best step, sometimes.

Let us know if you have any questions, or more suggestions…we’re always listening!

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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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Have suffered with bms for over 25 years everyday.
Mouth feels best when eating. I take Lyrica once daily.
I have found that wearing a very thin clear plastic (very tiny) during the day kills the pain. Believe this conftion is nerve related and something between the teeth relieves the pain.

Good luck.

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Has any one experience this burning tongue problem. It started for my wife about 8 months ago and according to her it feels like some one lights a match to your tongue. I used to be only at night after dinner but now is all day long. Use Tylenol and/or Advil to help it along but to no avail it comes back. And of course you can’t be giving those OTC too often. Any one out there experiencing the same, please my wife is getting desperate. Thank you

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@rgpadilla

Has any one experience this burning tongue problem. It started for my wife about 8 months ago and according to her it feels like some one lights a match to your tongue. I used to be only at night after dinner but now is all day long. Use Tylenol and/or Advil to help it along but to no avail it comes back. And of course you can’t be giving those OTC too often. Any one out there experiencing the same, please my wife is getting desperate. Thank you

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Hi @rgpadilla, welcome to Connect.
I moved your message to this discussion so that you can meet others talking about burning mouth syndrome. Let me introduce you to @sheetrock0131 @maggie45 @karvar16 @lauren123, @phyllisrn @connielaine @hcbb305 and others. To read their past messages, simply click VIEW & REPLY in the email and scroll through the conversation.

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To all who are suffering from this hell on earth condition, i have tried everything possible.
No matter what i try,or go to Bostons finest and experienced Dr. There are no remedies,or good results to benefit from.
God bless all those who are suffering.
I feel for all of you.

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@sheetrock0131

To all who are suffering from this hell on earth condition, i have tried everything possible.
No matter what i try,or go to Bostons finest and experienced Dr. There are no remedies,or good results to benefit from.
God bless all those who are suffering.
I feel for all of you.

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Have suffered from bms for almost 26 years everyday.
Find Lyrica helps a little, but to remove pain almost instantly place a very lightweight bite plate in during day. Seems bms is a nerve problem and something between the teeth quiets the problem.
Try it. Best regards.

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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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Hi Connielaine,

I know it has been some time since I’ve communicated- mostly because I am so discouraged and disheartened by all the dentists and neurologists I’ve seen that can’t help- and don’t seem interested in trying. I am still trying to find someone locally who could make the bite guards you described but when I show them what you wrote they look at me like I’m crazy. I know this is a long shot but if you are still in touch with the person who did this for you, could you get his email and find out if he’s o.k. with someone from the Buffalo area (assuming I can find someone) contacting him to learn more about how he did this, i.e what is the material he used to make the plates. Again, as always anything you could do would be greatly appreciated. I hope you are all doing better; I have no real good days, just occasional pain free moments which I relish. I just can’t imagine spending the rest of my life living with the never ending pain. Blessings to all,

Maggie45

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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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This my third attempt to answer you. Each time something interferes and all writing is gone. I will call my friend tomorrow night and ask him a few questions. I saw the sheets of plastic he uses (4″by4″. He made mine clear plastic. Did you ever have a hard night bite plate made. Some are made for people who grind their teeth. If so any dentist can order those. Same idea but mine very thin and very small. Plastic flexible enough for mr to trim a little off. Before I remembered my dental friend I went to cvs and bought their least expensive guard, which I used a few times, but it protruded and made. It visible from front. But possible you might want to try one of those to se if holding the jaw open with that would bring you comfort. I do not know how to get back to you but I will try. I am not too good with this iPad. Please get back to me. I will try to reach you morrow after I speak to Mauricio.
Good Luck.

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