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

Open to discussion on the 24th

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@sheetrock0131

Open to discussion on the 24th

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@sheetrock0131… So very sorry for the suffering you endure. Will hope and pray there’ll be more research and treatment for your condition. I have other issues that cause intermittent pain and depression so I have empathy yet probably don’t fully appreciate the level of discomfort you endure. Take care and I’ll be sending my hopes for healing for you!

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@kanaazpereira

Welcome to Connect @karvar16, @11camaro,

I’m sorry to hear about the pain you are going through; you’ll notice that I moved your message to this group so that you can meet @shellb123, @sheetrock0131, @lauren123, @phyllisrn, @connielaine, @maggie45, @dawn6604, @nanettehathaway, @carolaxis, @maggie45, @kinde, who may be able to provide their valuable insights.

Mayo Clinic in Rochester, Minnesota has a Burning Mouth Syndrome Clinic, http://mayocl.in/2dcrO3F, and although there is no known cure for BMS, Mayo Clinic conducts ongoing research to improve the quality of life for patients with this chronic condition. This other link will take you to current research developments:
http://mayocl.in/2dpAHFy
Do take a look at the Clinical Trials page of the NIH (National Institutes of Health), as well; here’s a quick link: http://bit.ly/2k6iWyD

@karvar16, @11camaro, how are you coping with your symptoms? Do you have any tips or suggestions for fellow members?

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As far as coping,I hate waking up every morning to tace the horrible condition.zi suffer from depression and anxiety. It has taken the golden years away from me.As a retired woman,my husband and i own an r.v.and go south for the winter.I spend most of my days in bed,i get depressed, because,i hardly engage in activities.Friends are enjoying the day,im indoors resting.God Bless all..

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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 do not know about lazer treatment,but i have hears of a surgery that a sponge is put in the area where the nerve is,that causes this burn.The nerve rests on the sponge,and you no longer.feel the burn.
No Dr.That i have come across would be willing,and believe me,i have seen many..
Very dangerous, apparently you can suffer a stroke,and many other complications can happen
My heart goes out to all those who suffer..

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@connielaine

Have suffered with bms for over 25 years-everyday. Tried many melds. Believe Lyrica helps a little.
I find wearing a bite plate during night takes away the pain. Try it.

Elaine

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Hi Elaine,im happy to hear something works for you.I am on cymbalta,and many other meds.Through the years,i have tried.everything. I just started to take a med.called Lamotrigine, at first it helped,but l8ke everything else,after a while,it stops work. .If it works for you,i pray you stay on path to feeling well.

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Nothing works for me -have suffered everyday for over 25 years. Maybe med. cannibus might help. Would try anything at this stage. Tranquilizers have very little effect. Have stiffness in jaw also.
Any helpful suggestions are welcome.
Elaine

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@connielaine

Nothing works for me -have suffered everyday for over 25 years. Maybe med. cannibus might help. Would try anything at this stage. Tranquilizers have very little effect. Have stiffness in jaw also.
Any helpful suggestions are welcome.
Elaine

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Connielaine,
So sorry to hear after such a long time, no relief…. I have no idea how you & others have endured this long; only 2 yrs. with this, and I can’t imagine my future. It is beyond depressing. So I feel a little silly suggesting anything but you may want to check in with Lauren- I followed up on her experience with lazer treatment (have had only one to date) and I think I do notice less intense pain/burning- that’s the good news. Downside (and I don’t know if this is part of your condition but it’s a big one for me) is I believe it has adversely affected my taste which is pretty much non-existent anyway. But I am going to run this by my dentist and see what he thinks- it is a relief not having that burning 24/7 but I am nervous about now not being able to taste the few things I’ve been able to in the past.
I am still trying to pursue the hypnosis (have you tried that?) but living in Buffalo (the most non progressive medical community imaginable) I am going to have to go out of the area and pay for it out of pocket.

I think of all of you suffering with this and you are in my prayers. I think one of the worst aspects is feeling invisible- I certainly don’t go around telling everybody about it but sadly many of those who know just don’t seem to “get it,” and I find that incredibly frustrating and alienating. I’ve gone from an optimistic extrovert to prefer being alone with the pain and my thoughts which go very dark often and that scares me. No luck with shrinks- I have found them to be some of the worst listeners and offenders.

Take care- I hope knowing there are others thinking about you helps. This site has been a God-send.

Maggie45

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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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Hello Maggie, I am glad to hear from you and that the laser seemed to work. I found that it dulled my pain. As time went on it seemed to dull the pain especially at night. The most effective meds for me are klonipin, recommended by Mayo Clinic on line. Before I started taking that, my taste buds were so sensitive I could barely eat brcause the taste was so strong. I now take a klonopin (clonozapam), cymbalta, and ambien since the pain is so bad at night. In addition, my pain management dr. gives. me a shot of Botox every three months. This is approved by the FDA for pain issues. The biggest problem is that he has to hit the right areas around my neck and jaw or I have minimal relief. If you have not been to a pain management Dr. I would see what she or he has to say. It all depends on what nerve has been damaged. Or sometimes it appears out of nowhere. I hope this reaches you as my phone is not allowing me to see my post. Best wishes. Stay strong as there is help out there.

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@karvar16

Anyone here suffer from Burning Mouth Syndrome? Been to dermatologist, ENT and found no relief and looking for a doctor who specializes in this. Since it would probably involve multiple visits I am looking for someone in the Twin Cities area.

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Dear 11camaro… DID GETTING YOUR B-12 AND IRON LEVELS BACK TO ALMOST NORMAL RELIEVE YOUR BMS AT ALL? Your post caught my eye as my husband has taken meds for severe acid reflux and has Barrett’s Esophagus… among other things. He is also a recent cancer survivor and a diabetic AND has this awful condition WITH severe TMJ at the same time. He can eat nothing except milk shake consistency liquids… Not even pureed foods as they are too thick to maneuver over his tongue. He has lost so much weight, the depression is horrible… and he has only had this for only about 4 months!!! Right now he is on B-12 shots and lots of other B vitamins, Gabapentin, and Alpha Lipoic Acid. He must take about 50 pills a day… which is a struggle in itself. So far nothing has helped… but I know it will all take a long time… if it helps at all! Jesus God… we need to do something to draw attention to RESEARCH NEEDED on this miserable, debilitating condition as more and more people will most likely be affected as we continue to trigger it unknowingly !!!

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Try consulting an oral surgeon.My dentist was clueless and referred me. I find that certain ingredients in some toothpastes make this worse. My oral surgeon sent me to a compounding pharmacy for “Magic Mouthwash” by prescription. It helps, especially with cankersores! Try some mild toothpastes, baking soda, etc.

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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 @adkhs3333,

I’d like to welcome you to Connect, and assure you that you’ve come to a great place to find support. I’m confident that @sheetrock0131 @lauren123 @susanlcw @connielaine @maggie45 @dawn6604 @nanettehathaway @bonitav will join in with their insights, too.

Each year, Mayo Clinic experts diagnose and treat more than 180 people who have burning mouth syndrome, and Mayo Clinic in Rochester, Minnesota also has a Burning Mouth Syndrome Clinic, which has ongoing research to improve the quality of life for patients with this chronic condition. You can read more about it here: http://mayocl.in/2dcrO3F

@hcbb305, has shared some great options for relief; do you have any suggestion or tips for fellow members as well, @adkhs3333?

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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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For some reason Colgate is the worst for me.check ingredients- I think it is the sodium lauryl sulfate that causes me to react. Biotene mouth gel at night may be helpful as well.

Liked by 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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Have had bms 25 years-no real relief. Do believe it is strictly nerve problem-.try small plastic night guard during the day-removes the pain immediately. Believe it keeps certain affected nerves apart.

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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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Connielaine, could you describe in more detail what this night guard is like? I wore one for years, but the dentist that made it retired. I can’t find another dentist that knows how to make it. I really feel it made a great deal of difference in how I was able to function. Thank you so much for your help. I have also had bms for about 20 years.

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