Burning Mouth Syndrome. I have it 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

@minnie59

Developed BMS over 1 1/2 years ago when I was 56, after a number of rounds of antibiotics, following the flu. ENT specialist told me it was something that I just had to Deal with as there was NO cure. It has greatly improved since then, just following a healthy diet, exercise, decreasing alcohol intake. Just recently realized that I’ve had a few weeks of no symptoms. I am a RN , and am not in to taking meds if not needed! A lot of people want a quick fix rather than try a healthier lifestyle change, which obviously, takes more time and perserverence. It certainly is a drag to have this. Wishing all suffers patience with their symptoms.

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Hello, @cajeffery, and welcome to Mayo Clinic Connect. Your input on eliminating sugar and avoiding overindulging in caffeine seeming to help you with the BMS is very interesting. How did you come to realize this? Also, wondering if you'd be willing to share more about what "oil pulling" is?

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BMS is a puzzling affliction, plaguing those of us who endure it with unrelenting intensity. I have found the only thing that brings a modicum of relief is dental grade topical lidocaine. Tastes vile but eases the pain. Hope this helps someone!

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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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@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….

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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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