Burning mouth syndrome – anyone else have this?

I’ve had problems with my mouth and throat burning off and on for decades. Even bottled water can cause it for a week or two so I always bring my own. When I asked my son to buy a certain brand of water to avoid burning, he figured out the high pH waters were okay for me and the low pH ones caused my burning. Those above 7 were okay. That may be true for food too? You might try keeping a food diary to see if certain foods or drinks cause it. Maybe eliminate low pH food and drink for a week or two as a test? You can find pH charts online. Good luck. The burning can be miserable.

Hi, sorry to hear about this affliction. I recently experienced this while being undiagnosed for small white spots on my tongue. They thought Candida but testing showed negative. I have a history of Crohnes so I thought digestion.

I do a lot of research so I started tracking what I ate, drank, and changes to my oral health. The odd thing was if a I drank coffee (which is acidic) it helped. Also, what we eat does not always immediately affect us. It could be something we ate 3 days ago as it goes through our stomach and intestine.

Have you heard of "leaky gut". The lining of the stomach allows bacteria into the body. I started taking L-glutamine to strengthen the lining of my stomach, and it helped. Next, even without test results of candid I did the "paleo type diet.' Take all processed foods out, no sugar, heavy starchy veggies. You might add enzymes to help digestion. Fungus is hard to find sometimes and doctors usually ignore it but it has cursed me 2 times in my life and I have cured it myself. It may take some dilegence but you can't get depressed. Learn to mediate or take slow walks. Aswaganda is good to help with cortisol entering the body (stress produces this). Often it is not just one thing that causes odd illnesses. There is a company call VIOME that test the oral cavity. Also OralDNA and a spit test that tests for fungus and other opportunistic bacteria. There is always a reason. Good Luck. Hope something in this email can lead you some improvement. Blessings!

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!

Thanks for your thoughtful response. In my case, it seems much less about food sensitivity or allergies and much more about emotional status. According to the folks at Harvard and Brigham women’s in Boston, where I am treated, this can afflict individuals after a severe trauma – in my case the suicide of my sister in 2018. Once it has taken hold, it sits in the body and responds to other high levels of stress and emotion that may come along throughout life. I’ve become somewhat accustomed to it and able to deal with it pretty well. The issue with me is that it kicks off anxieties about whether other issues are coming into place such as esophageal comorbidities, etc. So it is a bothersome health anxiety trigger more than anything at this point. Thanks all!

Suffered with burning mouth, tooth, and tongue for over 4 years. Tried many treatments including allergy treatment to a dental material ( replaced 3 crowns 3 times), begged for a root canal was told not needed but after 3 years of begging I got the root canal and was told I needed it because tissues did not look normal. Burning continued so just had the tooth pulled. Sent material off for analysis had 12 different types of bacterial so treated with antibiotics. Burning continued for mouth, tongue and burning moved to a new tooth. After 4 years went to emergency room for swollen mouth and the burning mouth, tooth, and tongue. That doctor ended my burning in short order. Referred to gasterologist. That Dr diagnosed me with gastritis with hyperplasia, acid reflux, and Barrett’s. Started treatment with 40 mg of the safest PPI had reaction of swollen feet and ankles so I take Prilosec 40 mg twice daily, sucralfate liquid 4 times daily. Slowing I noticed a little improvement of burning when I woke up at night by taking the sucralfate liquid. Took 30 days before I really noticed burning improving. I was then able to stop the pain pills and pregabalin and baclofen. Was to reduced the 40 mg Prilosec twice a day to 20 mg Prilosec twice a day. When I did that I developed a cough. Started taking baclofen again to relax esophagus. Developed nasal drip so added 1 benadryl
Liquid 4 times a day. After 45 days of the cough went to out clinic. Took X-ray and only saw nasal drainage as I was breathless and wheezing, no pneumonia. Stopped the sucralfate and was given steroid dose pack. Dose pack ended yesterday. My burning is unbelievably better at my mouth, tongue, and tooth. I am currently taking the Prilosec 40 mg twice daily, 1 Benadryl 4 times a day, baclofen 5 mg 4 times a day, and added back the sucralfate liquid 4 times a day. When I get a slight burning in my mouth I chew a pepsid complete tablet and in minutes I have no burning in mouth. I have not had a pain pill in two months. I feel so much better! I feel more like my old self. Years ago I was diagnosed with acid reflux. I always slept with my head and upper body elevated with pillows so I noticed no reflux. When doctors asked me if I had reflux I always said no. I read every article I could read about burning mouth to try to help myself. It took going to the emergency room for a very smart PA to figure out I was having reflux. It took a good 30 days to really be convinced I was finally on a healing path to get better! It happened to me! I hope doctors and patience will read about my experience and hopefully get esophagus looked at. Better days are here for me!

What brand of bottled water are you drinking?

Suffered since 2020. Silent reflux with Barrett’s just diagnosed which diagnosis took almost 5 years.. 30 days after treatment with 40 mg Prilosec twice daily and liquid sucralfate, baclofen 5 mg 4 times daily and 1 liquid Benadryl 4 times daily pretty much has put my burning mouth to bed. When I get very slight burning mouth I chew one pepsid complete and I am shocked how quickly that stops the slight burning. I don’t eat hot or spicy foods stay away from fatty foods, eat lighter means, I only drink warmed up bottled water, and I don’t eat after 5 pm. I love ice cream but no more ice cream or sweets or deserts and no carbonated drinks. I hope you can find your success!

I drink arrowhead

Thanks so much for sharing your information. Curiosity question – has there been any discussion about Barrett being a precursor for cancer? Is this a major concern on the part of your gastroenterologist? Did you have any clue at all that you were experiencing reflux… Dark stools, Vomiting, etc.? Thanks again.

I really had no idea I was experiencing reflux. Years ago I did have reflux and since then I always slept with my upper body and head elevated and never had any symptoms of reflux. I did not realize there is a silent reflux. My recent test showed gastritis with hyperplasia which is pre-cancer and then the Barrett’s esophagus. Yes I understand Barrett’s can become cancer. Testing did not reveal Barrett’s currently having metaplasia ( precancer). I know I need follow-up with the Barrett’s.