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

@rgpadilla

Has any one in this forum heard from either the Phoenix or the Rochester that anyone of the many people treated for BMS, whichever type, has been completely curd. Rafael.Thank you

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Hi @rgpadilla — I hope you don’t mind that I moved your message to this discussion so you can meet some others who’ve experienced the “burning tongue” feeling you mentioned before, like @margaretdaniels ,@suzannemc , @texan , @bonitav, @journey000 @connielaine, @beachgirl and @missbret. I’m hoping they will chime in with some thoughts about dealing with this condition for your wife.

These members have mentioned getting treatment at one of the Mayo Clinic campuses specifically, and I am hoping they will share their experiences with you: @bobv and @laci80525.

Has your wife been diagnosed with BMS? How is she doing with her tongue pain lately?

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Hi Lisa,
Appreciate your checking in on us. Update: found a Dr. S. Elad in Rochester, NY who is a specialist in Oral Med. (BMS) and has me trying a soluble form of clonazepam (.1) which I take (1 tsp) 2 x a day as a mouth rinse. Been trying it for a couple of weeks- mixed results- some days seems to calm the burning; other days, exacerbates the dry mouth & lips. Also seeing a psychologist who does cognitive behavioral therapy so will see how that goes. Biggest frustration is finding a dentist who is amenable to learning something new and not be defensive about what he doesn’t know, i.e. the thin wafer plates a dentist made for connielaine who has been a tremendous help and support to me. And lastly, not sleeping well, don’t know what that’s about but it sure does increase the pain in the day. Hope all of you are continuing to hang in there, God Bless- thoughts & prayers to all suffering with this.

Maggie45

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@rgpadilla

Has any one in this forum heard from either the Phoenix or the Rochester that anyone of the many people treated for BMS, whichever type, has been completely curd. Rafael.Thank you

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I find much relief with very thin bite plates-either upper or lower-seems to keep teeth apart enough to keep nerves from firing. Daytime wearing when needed very comfortable and for me relieves burning pain right away.

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Plsss helps me
i eat from my left side of mouth since 8 years and now it feels like my left side cheek is harder than left.
And glands below jaw the sabmandibular glands it feels like that i can feel my left side below jaw glands more than right jaw since 1 year and now i am obsessed with it i always touch my left submandibular glands every 5 minutes

i want to ask does eating from one side since 8 years can cause that glands more feel than the other non eating side.
There is no hard lump in it. It feels like a movable object but i cannot hold the lump inside it only feels moves when i press my fingers in jaw. I feel same on the non eating side but not like the eating side

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Can anyone add anything that helps to calm burning mouth syndrome down? It feels like my mouth and throat are on fire . It wears me down.

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HI, @mygrigio. Been thinking about you, and wondering how things are going with your burning mouth syndrome? Have you found a doctor who could help you with it?

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@shellb123

The Mayo Clinic recommends Alpha Lipoic Acid & Vitamin B which are both harmless 🙂 I take ALA 200 mg. 3x day & Vit B once per day & I believe that they have helped some. Also, all of you who are suffering have you had any surgeries or tooth work? This happened to me after a tonsillectomy & I do believe I may have had some nerve damage?! Also, anxiety is a cause of this & I suffer from that as well; do any of you? The safer route to Klonopin which you’ve heard me suggest to stay away from is Neurontin, I am on 900 mg. 3x day, yes that much! Plus the ALA & Vit B & Zoloft for the anxiety. I also have some good days & some bad days & some inbetween days, the bad days are awful!! This is such a tough disorder to have!!!! Sometimes I find eating something small can change the way my mouth feels or chewing gum. I wish there were Dr.s that were knowledgeable about BMS because those of us who suffer need some guidance & relief! May God Bless you & keep you as pain free as possible!!! 🙂

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Hi, @shellb123 — sounds like you had come to some conclusions about medications to take and not to take for your burning mouth syndrome. How is it going on the Neurontin? What has your conclusion been about the role of anxiety in your BMS? Has the anti-anxiety medication and supplements made a difference for you?

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@kinde

I used cayenne pepper mixed with water and the pain left after about 5 minutes of really burning from the pepper… fight fire with fire… I am glad it worked so I can eat again! Stacy

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Hi, @kinde. Are you still using the “fight fire with fire” cayenne pepper and water method to relieve your burning mouth syndrome pain? If so, how is it going? Are you able to tolerate it okay?

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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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Hello, karvar16. Just wanted to check in with you and see if you found the care you were looking for with a doctor specializing in burning mouth syndrome? How is your pain these days?

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@hcbb305

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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HI, @hcbb305–wanted to check back with you and see how the “magic mouthwash” and changes in your toothpaste is going for your burning mouth syndrome pain?

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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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Hello, @adkhs3333. just wanted to touch base and see how things are going with your husband. How is it going with the burning mouth syndrome? Did you get the help you were looking for?

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@destinnana

Can anyone add anything that helps to calm burning mouth syndrome down? It feels like my mouth and throat are on fire . It wears me down.

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My wife has tried Orbit chewing gum during the day and it seems to calm it down. Nights are the worst, she tried the gum while sleeping but you might run the risk of swallowing it. She tries to stick it on the back of the front upper teeth and that works most of the times.

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Thanks for sharing this! I will surely try it!

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Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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I had to get a referral from Dermatologist in Colorado to go to Rochester. Very disappointed . Came home with a packet of information just like what you get off the internet. Was very expensive for Insurance Company. Later went to Anchutz right in Aurora Colorado. Dr Nagel is a researching Nuerologist for Burning Mouth. Referred to another Dr to have nerves blocked. As far as Mayo, wish I would have seen neurologist there vs Dermatologist. Just my opinion.

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