Burning mouth syndrome – anyone else have this?

Posted by londonex @londonex, Jan 1 8:39pm

I was diagnosed with burning mouth syndrome (BMS) in 2019 after going to my GP and gastroenterologist with complaints of heartburn and throat soreness. An endoscopy proved no GERD issues and an oral pathologist ended up diagnosing me with BMS. It has been described to me as a neuropathy of the fifth cranial nerve, and the second cranial nerve which, in my case, affects the back of my throat, top of my mouth and occasionally up through my sinuses to cause a raging headache. It comes on with high stress and anxiety, sometimes with hot or cold or spicy foods, and lasts anywhere from one hour to one week.
Really doesn’t respond to any medication. Stress reduction and yoga do help a bit (placebo?) when I put my mind to it but for the most part, BMS is a bothersome undercurrent in my daily life. Just wondering if others are suffering with this as well.
Thank you!

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diannesmcneill | @diannesmcneill | Jan 18 5:27pm

In reply to @colleenyoung "I've included this discussion in the Skin Health support group. At Mayo Clinic, specialists in dermatology..." + (show)

Thank you! I suffered so much burning and had several specialist and dentists over 3.5 years. I hope my experience helps someone else. Treatment with acid reducers and sucralfate liquid is not quick but I could see a difference after 2 weeks with much more relief at 30 days and much more at 60. 4 months in an every month is better. Burning mouth and tongue and tooth is hard!

diannesmcneill | @diannesmcneill | Feb 2 5:49am

Burning “Up thru your sinuses” is a common symptom of silent reflux. There are two different types of reflux and one is higher. I am very happy that a smart PA at hospital emergency room recommended an esophagus scope for me. The specialist, prior to esophagus scope, had little faith that my burning had anything to do with my burning. He was surprised at my diagnosis of reflux and Barrett’s. My family Dr. told me the treatment for reflux the specialist put me on was not going to help my burning. The specialist told me I would just have to take the medication to see what effect the medication would have on my burning. It was a good month of treatment before I noticed my burning improving. At that point I was able to does down and then stop all the other medications I had been taking for burning mouth, tongue, and tooth. I can’t stress enough that relief was not instant. It might have been if I had been taking pepsid AC at beginning of my treatment as Pepsid AC works faster on burning than a PPI works on burning. Talk to your doctor …..read about silent acid reflux and the nostril burning….tell your doctor…take him the article about reflux and nostril burning. Do you elevate the head of your bed which helps reflux. Good luck.

carolinlv | @carolinlv | Jul 1 10:20am

I have been suffering with burning mouth for approximately eight months now. It came out of nowhere but it's very debilitating. I am living on Orajel and xylemelts just to numb the burning lips that are now blistered and painful almost all the time. It started off slow but is now a 24/7 thing. Did your diagnosis come out of your endoscopy? I have one scheduled for tomorrow morning and I'm really hoping help comes of it.

joebrock | @joebrock | Sep 23 5:00pm

In reply to @diannesmcneill "I have suffered with burning mouth, tongue, and tooth for over 4 years. I tested for..." + (show)

@diannesmcneill

I have suffered with burning mouth, tongue, and tooth for over 4 years. I tested for dental allergies twice, had a root canal where tissues did not look normal and I needed that root canal, had the tooth pulled and testing showed 13 different kinds of bacteria and treated with antibiotics. The burning continued. Treated with hydrocone-act, baclofen, pregabalin, and other medications trial and error. Finally went to emergency room for the burning and swelling throat. Referred to gasterologist who looked at my stomach and esophagus. I was diagnosed with gastritis’s w hyperplasia, reflux, and Barrett’s esophagus. I never knew there was a silent reflux. I always said no to doctors when doctors asked if I had reflux. Treatment started 3 months ago with PPI 40 mg twice daily, allergy reaction to first PPI ended up with Prilosec, took sucralfate liquid 4 times a day. Slowly responded to treatment with burning getting better. After 30 days of treatment able to stop pain pills and pregabalin. Dropped PPI dosage to 20 mg twice a day. Developed a cough so went back to Prilosec 40 mg twice daily and added baclofen to relax esophagus. Cough continued and taking baclofen 5 mg 4 times daily plus 1 liquid Benadryl 4 times daily with PPI and sucralfate. Burning mouth, tooth, and tongue better every day but it was slow. After coughing for a good 45 days and coughing up huge thick mucous from congested lungs, was put on steroid dose pack which improved lung congestion and cough daily but still taking the baclofen and Benadryl daily 4 times. Continue to take Prilosec 40 mg twice daily. Stopped the sucralfate when lungs became so congested. When I notice slight burning in mouth I also chew a pepsid complete tablet which stops the slight burning in mouth. Feeling so much better! Hard to believe how much I have suffered the past 3 plus years with burning mouth and it was silent reflux that had damaged esophagus causing Barrett’s. When Dr. started treatment it was a good 3 to 4 weeks of treatment before I noticed burning pain diminishing. I hope my story helps other Doctors helps their patients. It’s been hard! I feel like I have been given my life back! My specialist retired so now looking for new gastorologist for the Barrett’s. There is hope!

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Hope everything is still working for you. I’m basically having the same symptoms myself .

kathyacurl | @kathyacurl | Sep 29 4:56pm

Does anyone here have burning mouth syndrome? I have had it for 3 years . Always looking for answers.

dlydailyhope | @dlydailyhope | Sep 30 6:42am

In reply to @kathyacurl "Does anyone here have burning mouth syndrome? I have had it for 3 years . Always..." + (show)

@kathyacurl
Were you officially diagnosed and what specialist did you see for the diagnosis? What are your symptoms and triggers?

Do you take any medication for this? Did you start this after having Covid? Did you ever have shingles, Epstein Barr virus or herpes virus? Viruses that lay dormant can be reactivated with certain triggers.

I would get burning lips/mouth after having dental work or when under significant stress.

Did you get checked for prediabetes/diabetes glucose and A1C levels recently?

William | @willgranger1127 | Sep 30 8:46am

In reply to @dlydailyhope "@kathyacurl Were you officially diagnosed and what specialist did you see for the diagnosis? What are..." + (show)

@dlydailyhope My wife has had this for a few years. It may be a result of Covid or the vaccine. I’ll keep watching this topic. She is not proactive about it.

9714542205 | @9714542205 | Sep 30 9:28am

In reply to @kathyacurl "Does anyone here have burning mouth syndrome? I have had it for 3 years . Always..." + (show)

I’ve had this problem for years now and can’t get any Dr to hear me and address the problem. They don’t seem to think that it’s a problem and they don’t know what to do about it, so they’re just trying to ignore it. Now they tell me that I have a lump on my easophagus and that scares me because that cancer is bad. I’m going to get tested this week. I hope and pray that it is not cancer, but my gut tells me it is. I have all of the symptoms.

Justin McClanahan, Moderator | @JustinMcClanahan | Sep 30 9:45am

In reply to @kathyacurl "Does anyone here have burning mouth syndrome? I have had it for 3 years . Always..." + (show)

Hi @kathyacurl, I merged your discussion with an existing discussion titled:

"Burning mouth syndrome – anyone else have this?"
- https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-anyone-else-have-this/

@londonex started this discussion looking for others who have experience with burning mouth syndrome. Here, you can also meet @diannesmcneill, @carolinlv and @joebrock who discuss burning mouth syndrome and how they have managed it.

John, Volunteer Mentor | @johnbishop | Sep 30 10:23am

In reply to @9714542205 "I’ve had this problem for years now and can’t get any Dr to hear me and..." + (show)

Hello @9714542205, Welcome to Connect. You are not alone. I'm sure there are others here on Connect that are going through a similar situation. Can you provide an update after you get tested this week?

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