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

@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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Can you share names of the dentists/location you know specially trained in facial pain? I’ve suffered 24/7 for over a year and no one seems to be able to help me. Thanks for your help. Sorry about your circumstance.

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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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Trigermial neuralgia (SP?)

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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 Karri,

Thanks for your comments. You are the first to respond and your response gave me access to the thread with all the other comments. Really quite discouraging aren’t they

Unfortunately, I don’t have any good recommendations for you. My quest for relief from 24/7 pain which manifests with the burning around the exterior of the mouth, pressure, numbness, tingling and just overall discomfort includes:

Dentists, oral surgeons, biological/holistic dentist, MDs, neurologist, naturopathic doctor, acupuncture. I’ve taken pain meds, antibiotics, prescription dose ibuprofen. The only definitive help has been acupuncture. My acupuncturist told me at the onset that nerve regeneration is very difficult and I needed to be prepared to commit to the long haul: 12-18 months to achieve up to 50% improvement at best. I get treated 2x/week and am in my 11th month. I have had a reducing of the symptoms but probably not more than 20%.

As you know, the pain takes over our lives. I am a very active person but there are days when I can’t get out of bed overcome by weakness and fatigue. It really is lousy.

I hope this might help in some way. My best to you and, again, thanks for reaching out.

Susan

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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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Thanks for taking the time to contact me. Your testimony sounds quite a
bit like my history while searching for some relief. I truly believe that
it has to do with the cranial nerves, but thats just after trying to find
the answer and going from one thing to another..The few things that I have
that helps it, is 1. CLA conjugated linoleic acid ( at walmart) 2. stay
away from ICE CREAM! 3. Chew gum or have something in your mouth that mask
the BMS symptoms. One day they will find the cure, I truly believe that.
I can’t remember exactly what I said (in my post,) but I went to the Mayo
Clinic back in the early 90’s and they thought I was mentally ill and
wanted me to get psychiatric treatment. So I totally felt isolated and
alone, but my husband always believed in me and my doctor that sent me to
Mayo believed.in me also. So don’t give up. Phyllis Marshall

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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 my name is Patty,I am a 20 plus yr.sufferer.I have been to the best hospitals in Boston.I’m so sad for your suffering, believe me,the Dr’s have done everything but nothing works.Medication is the only relief that helps to a point.
I received accunpuncture, three different ones..I went to healing priests,I also had blessed water from Lourdes..
After all these years,Dr’s do not know the cause ,nor do they know how to treat.

I am on so much meds,my days are spent on couch or bed. There are no golden years for.me..
The depression is quite bad.
I currently am on Cymbalta,Clonazepam, and a small dose of Oxycodine.
This condition is debilitating, and having it in the mouth is just brutal.
I pray for all of those who suffer with this horrible condition. .Feel free to respond anytime..
You might want to see an infectious disease Dr.someone was carrying a herpes germ on her tounge for many years.She was treated with Valtrex for a month,and is now pain free..

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@dawn6604

I’m 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn’t stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can’t even kiss my husband. Any advice would be greatly appreciated.

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Please read my post..You are not alone,nor are you crazy..We just happen to be the unlucky ones..
The depression goes along with this condition..God bless you..

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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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To all who are associated with Mayo,i can tell you i am a 20 plus yr sufferer of bms,any questions ,please feel free.I have done it all,and took just about everything all of you have taken
I also have trigeminal neuralgia, and receive 25 nerve blocks a month.Mostly in head and neck,and temple area.It does not help my.bms.
I do suffer from depression,.My husbabd and i are retired and married for 47 yrs.although hes understanding,it also has caught up to him.He does get depressed from time to time.
This condition is debilating.
Somedays i just want to end it
But not for my family and grandchildren, and understanding husband,i would have..
I pray for all those who suffer with this horrible condition. .Please feel free to ask ,im a pro when it comes to this condition. .

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I think i replied to you
I am 66 yrs old and have had bms over 20 yrs.i have much experience with this condition, if you need any questions answered, please feel free to ask,as i have been to almost 4- 5 Boston hospitals.

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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 suffered with burning mouth for 25 long painful years. Woul love to hear from someone who shares this horrible condition.
Thank you
Elaine Swanson

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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, welcome to Connect. You’ll notice that I removed your personal email from your messages. We recommend using the private message function if you would like to reach out to members privately and share your email. We don’t want you to get unwanted spam by posting your email publicly in the discussions.
Thanks
Colleen

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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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@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 found that wearing a bite plate during the day relieves the pain. Bought one from CVS.
Try it.

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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Hello,
I have read all your posts- very helpful but am finding nothing more current than 2012 postings?? If you are still “there,” I would love to hear from you, I live in the greater Buffalo, NY area & have exhausted all possible avenues of help around here (thought of trying Boston but that doesn’t sound any better )and feel very hopeless and despondent. I have read of success by a London Dr.who uses low level lazer treatments directly in the mouth but can’t find any clinical trials in the US. Know anything about this? I’ve pretty much given up on all meds but do find something called xylimelts (dissolve over time in mouth) give some temporary relief.
Would love to hear from you,

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 @maggie45,

Welcome to Connect; I’m so glad you found us.
We do have more current discussions taking place with regard to burning mouth syndrome (BMS); please take a look at this link in Just Want To Talk: http://mayocl.in/2d5g7f5
Feel free to read back through the messages, and tag other members for more information.

Mayo Clinic in Rochester, Minnesota also 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

Have you looked at the Clinical Trials page of the NIH (National Institutes of Health)? Here’s a quick link: http://bit.ly/2k6iWyD

In the meantime, I hope fellow members @connielaine, @sheetrock0131, @ladenole, @mfelton, @iluvkatz, @uncbball, @susanlcw, @jamesmanning60 will join in to with some more insight for you.

@maggie45, what else have you tried to find some relief? Are there any foods you have to avoid?

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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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Hello Shelby, I don’t know if you are still on this site, but I would like to know if you are still having success with Zoloft? I have used A
LA, Vitamin B, and Edluar (Ambien) to sleep, along with Cymbalta. Neurontin upsets my digestive system so I cannot take it. I hope you are doing well.

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