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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
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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Hi, @lauren123 – just wanted to see how things are going with your BMS. What did your doctor say about the lidocaine gel? Are you still using the mild mint you talked about?
@sheetrock0131 – also thinking of you. How are the botox shots working for helping your BMS pain?
Hello Sheetrock, I've been thinking of you too! The botox shots are primarily for migraine symptoms. I have had serious allergy problems this year, and they aggravate my BMS. I went to a dentist who specializes in mouth guards, and he has been adjusting my appliance. It is helping somewhat. Unfortunately, I wear during the day, but it isn't helping much at night. I think I have some anxiety about trying to wear it since if it is misplaced, it causes pain in my gums. How are you doing?
I have been on clonazapam for many years,its temporary.Once it wears off my burn is back.I also burn in throat,and have pain in ear and right side if my head.To be honest with you,somedays i feel like ending it all…
@sheetrock0131 exactly the same condition as mine. I feel the burning and all the pain in the right side of my tongue, my right neck, right ear. I see my tongue is getting whiter. I'm afraid, depressed and hope it is only a nightmare to wake up. No one can feel my pain. They only listen to me but nothing comes to their mind of what is it i am talking about. I felt so alone.
Yes, this is real. I have it and am being HELPED, not cured, with amitriptyline. You must build up dosage till right for you. I take 10 mg AM, 10 mg early afternoon, and 20 mg before bed.
@mamajomclane, this is very interesting. Do you take other medications with it? I have the same condition.
Yes I take amitriptyline also and L-Lysine
@sheetrock0131 YES, others can feel your pain. This is an awful, life-destroying condition. It is also true that doctors have no idea what to do about it. The highest level specialist in "oral pathology" in New York City told me nothing can be done. Biggest NYC hospitals couldn't refer me to anyone.
Speaking of toothpaste – I just recently learned of a natural whitening toothpaste that has activated charcoal. The toothpaste is black and minty and claims to have pain relieving properties….for me it helps long enough for me to get to sleep. The brand is HELLO. My neighborhood Walmart has it but not CVS or Walgreens.
I had been looking for your post for a while until I finally found it. In reference to the tooth paste, thank you from the bottom of my heart, my wife is a 3 years sufferer with the burning tongue problem, nothing helped until we try this Hello toothpaste, the burning tongue is 95% effective probably 98%. She used to spend the daily shewing Orbitz gum all day until the night when it will get worse. Now no more gum, no more burning, once in a while a little sensation on the tip of the tongue but dentist said it might from her moving the tip over the lower partials that could cause irritation on the tip of the tongue. I hope everyone with similar situation try this tooth paste is a miracle. Thank you very much and lets spread the word. @mamajomclane
@rgpadilla – soooo very happy “HELLO TOOTHPASTE” helped your wife…may it continue.
My husband has this and his is related to his autoimmune liver disease. However, it is not necessarily related to liver disease so you need to have a good diagnosis first to make sure you don't have some other related medical problem. He uses a prescription mouth rinse called "Mary's Magic Mixture" which helps. Most dentists and pharmacists are familiar with it.
@kathylo Thanks for this info. In my case I have no other diseases. This came on for no discernible reason or medical cause.
@rgaadilla –Thank you so much for the HELLO toothpaste information. I bought some recently, but it has peppermint in it. I have to avoid mint flavors. What type did you use.?
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