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

@lisalucier

Hi, @twentyfour7 — welcome to Mayo Clinic Connect. I've moved your post over to this discussion, where you will meet many other members who also suffer from burning mouth syndrome (BMS).

Thank you for your suggestion for what's helped you a bit for pain relief with this syndrome.

It sounds like you have really intense pain? Is this something you've had for a long time, @twentyfour7?

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Hello, Lisa- thank you for relocating my post. I have had BMS for 4 years, all of them most unpleasant. It began with an altered sense of taste then morphed into a continually flaming oral cavity. Not only does it burn, it also feels as though there is a battery in my mouth. Like the others in this group, I have tried a full compendium of options, including drugs, diet changes, dental adjustments,herbal remedies, homemade toothpastes, alpha lipoic acid, chiropractic, vibrational therapy , pain meds — all ultimately to no avail. The lidocaine provides a brief respite, but cannot be used long term.

Some days are worse than others, and nights are a challenge. I play a lot of solitaire at 2 AM….

Liked by lauren123

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Hello Twentyfour7, I can relate very well to what you posted. How do you take the lidocaine? Is it pill or capsule? Or perhaps a mouthwash?

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@lauren123

Hello Twentyfour7, I can relate very well to what you posted. How do you take the lidocaine? Is it pill or capsule? Or perhaps a mouthwash?

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Hello, @lauren123 – the lidocaine is in a gel form. You swish with it, or swab it in your mouth. Because it is a prescription, it’s more potent than your basic OraGel. The numbing effect calms the fire and lasts a few hours . Although I’m very sorry to hear you can identify with me, it is certainly helpful to talk with others who grapple with this poorly understood syndrome. Perhaps collectively we can work out the puzzle. I hope you find some relief— my ENT was the one who prescribed the gel.

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@lauren123

Hello Twentyfour7, I can relate very well to what you posted. How do you take the lidocaine? Is it pill or capsule? Or perhaps a mouthwash?

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Hello Twentyfour7, thanks for responding so promptly. Do your gums burn on a daily basis? I have been on this site since 2012 and the best way to get to know me is to follow my story. My pain worsens when I have sinus flare-ups. I also have Trigeminal Neuralgia and TMJ. This is a good site for people like us. I think people are helpful and sincere. Besides, our conversations are private.

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Hi again, Lauren123, I am so glad to have found this site! You’re right in saying it’s a good place to share information for people with this miserable condition. No one else even faintly understands, not even the doctors I’ve consulted for evaluation and treatment. Most of them say they’ve never heard of it! Eventually we get forced down alternate paths in the hopes of finding something that works. My latest failed attempt was CBD oil— an outrageously expensive and useless product.

In answer to your question, yes, my gums burn all day, every day, but mostly on one side. My tongue is the worst, as it involves the entire thing. Occasionally my nostrils and lips get in on the action as well. I do not have sinus problems , or TMJ or any neuralgia that I know of. I was sorry to read of your multiple maladies. For me, the one odd thing that might be a clue is that I have sneezing jags multiple times per week. Once I start I sneeze anywhere from 20 to 45 times in a row. (Allergy testing was negative.)

So for now, I, as I’m sure you do, forge ahead, thankful to get through each night and hoping for distractions during the day. Try the lidocaine when it is at its most unbearable. I pray God will both comfort and heal 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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Hello @sheetrock0131, this is the first time I remember you having trigeminal neuralgia as well as b.m.s. What do you use for the TN? Do you have TN1 or TN 2? Thanks. Hope to hear from you soon. Lauren

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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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Would like to know how you are doing???
I to have bms for many many years.Tried everything.
Maybe you have some news to share.I would greatly appreciate it.

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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 Sheetrock, did you see my note from a few days ago? I don't have any news, unfortunately. Have you tried Botox for your TN? Do your have TN 1 or TN2 (Atypical TN)?

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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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I was diagnosed with burning mouth syndrome and central sensitization at Mayo in Jacksonville. This has been going on for over 2 years. I’ve had many bouts of candida in my mouth and espohogas as well and suffer from acid reflux. They seem to all run together. I have no answers and just try to cope and act like everything is normal. It’s not and very painful. I get tired of putting up a front. I’m wondering if it could be the synthroid I take or maybe some food sensitivity that makes it worse? Currently I juice celery every morning and try to get my acid reflux under control. Hoping that will help as I don’t wanta take the heavy meds with so many side effects doctors recommend. I am always open to trying new things. Any suggestions?

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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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@Destinana: Your anguish is understandable. It seems every med, every remedy, every intervention disappoints. I was recently told by a practioner that some cases of BMS might be caused by dental galvanism, and it appeared my situation was one of them. A quick search of the term will result in a dead end — fake science. But I looked into the treatment anyway which was to have all your fillings replaced with nonconductive materials. Very costly if you have a metal-filled mouth, but desperation may ultimately drive BMS sufferers to it. I haven’t gone that route yet.
For the reflux, I read an article that recommended freezing a whole lemon then grating a tablespoon or two of it ( rind included) into boiling water and drinking like tea. Apparently reflux can be caused by not having enough of the right kind of acid in your system. Maybe this could help you. I have tried it, tastes good and doesn’t make anything worse….

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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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More than a reply is a question to you since you mentioned Jacksonville in Florida. Do they treat BMS patient like in Rochester, Minnesota or Scottsdale Arizona. My wife has been suffering with the Burning Tongue only, 24/7

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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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I’m not sure what you mean? Be more specific.

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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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The Mayo Clinic in Scottsdale, Arizona treats patients with BMS, they don't give numbers on how many have been cure. They do not accept government insurance. The Mayo Clinic in Rochester Minnesota treats patients with BMS, they do accept government insurance.
You mentioned that you were diagnosed with BMS at the Mayo Clinic in Jacksonville, Florida, do they treat patients with BMS.

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We’ve had no problem with our BCBS paying in Florida.

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Do they treat BMS in Florida. Is that BCBS Medicare Insurance?
Thank you…

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