Natural Remedies for Burning Mouth Syndrome

Multiple Remedies

4 User Reviews
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Posted by Candi (Fairhope, Alabama) on 03/11/2015

I have had BMS for 17 months. I have had every test and no reason found for the burning. I have tried every idea from alpha lipoic acid, capsacin, oregano oil, diet, baking soda etc. My ENT said it should last a little over a year and to take a good vitamin and probiotic every day. I am at that mark and I see a little improvement. My question is some one should know something about this. There are too many with BMS. In the past I have had an autoimmune disease but now cleared. My vitamin D has been low and I take extra to keep it up. I have to take cholesterol meds to keep it level. Is there anyone else out there with similar experience? In my thinking there has to be a common thread between BMS sufferers that no one has connected the dots to????

Replied by Ingrid
(South Carolina)
10/03/2015

After reading all this I am almost convinced that with me, celiac has something to do. Twenty some years I am asking doctors and tried mouth washes, lozengers, vitamins and you name it. I am so depressed at times and no help. I believe that sugar is my trigger, yet when I am the worst I want it more than ever, because the temporary taste with iced coffee gives me 5 minutes of HELP.

Bread is my next solution, crisp fresh bread. Anyone else has similar experiences??

Ingrid

Replied by Gail
(Pa)
03/29/2016

I am 52 and have had this bad taste in my mouth off and on for a couple years. I had bravo endoscopy and they day acid is normal- I went on prilosec for month but no changes- I get raw feeling in the roof of mouth and am not sure what to do- The int says my vocal chords are fine little red- I have osteo so I cant be on PPi's. Should I ry oil pulling- I was going ACV every day for couple of months and was told to stop by the ENT and GI that could have been the problem but it's been a month without that and still have bile taste- Help

Replied by Dave
(Fountain Inn, Sc)
03/29/2016

Hello Gail,

Re your BMS problem...

I have seen a number of cures when the sufferer uses colloidal silver. Just hold three tablespoons of CS in mouth for a minute and spit out. Repeat and gargle. Spit out again. Then drink a tablespoon. Repeat a few hours later. Next day repeat again. Even three times in one day is better. After day three there should be relief from the condition if the condition is being caused by an infection. If me, I'd also take some of the CS into the sinus cavity just to make sure any nasal infection is eliminated. Do that do or three times.


Multiple Remedies
Posted by Ashley (Torrington, Ct) on 06/29/2012

Hello, About 4 months ago, in early March of 2012, I woke up (more than once) feeling as though someone was choking me. At times, I even wondered if I was having a heart attack. It was really scary.

Anyway, after about a week or two of these "episodes", my neck began to ache (all over, front and back) and my throat started to burn. It was awful. Gradually, I began feeling strange sensations in my tongue, which soon changed to a burning feeling- around the sides, at the tip, and even on the top. It was bizarre and terrifying to have such unusual symptoms. Eventually, my tongue even felt very sore, so sore that I talked a little funny at times (b/c I was "babying" my tongue, I think).

While experiencing all of this, between early-March and early-June 2012, I saw my PCP 3x, an ENT, a GI (APRN), and a neck/back specialist. (I also went to the ER once where I was seen, diagnosed with a sore throat, and sent home.) I felt terrible and was so desperate for some relief! (By the way, blood work and neck x-rays were negative.) A few docs, including the ER MD, felt I had a virus (for which I was first given Ibuprofen/Tylenol and later antibiotic treatments), then a few other docs suspected acid reflux. I couldn't believe that acid reflux could cause me to feel so terrible especially since I was unaware of any symptoms! Although I wanted to dismiss reflux as a possible cause, I was feeling desperate, so I tried whatever was recommended, including Maalox (2 tbsp) at bedtime (recommended by 1 ENT), then prescription medication (for reflux) in the A. M. (such as Aciphex), always 1/2 hour before breakfast (recommended by the GI APRN). With time, I felt a little improvement, but not much. So I continued to doubt the whole reflux theory; I spent so much time in fear that I had a serious illness. Why else would I feel so awful with such unusual symptoms?

Finally, my PCP sent me to a second ENT in early/mid June, about three weeks ago (for a second ENT opinion). He listened, answered all of my questions, and majorly eased my fears. While he suggested Burning Mouth Syndrome as a possibility (maybe caused by anxiety/depression, a hormonal imbalance or neuropathy), he too, felt that acid reflux might be the culprit and needed to be ruled out first. (Note: He didn't see signs and symptoms of a vitamin deficiency or thrush or lichen planus, which can cause burning mouth). He just asked me to be patient and follow his recommendations...

He seemed to be really knowledgeable; For one thing, I was impressed as he was the only doctor I saw who knew a considerable amount about BMS! (He said he had seen about 30 cases in 15 years, almost all women.) Anyway, he disagreed with the other ENT I had seen and the GI I had seen re: their treatment recommendations for possible reflux, at least in my case. He said that I had "silent reflux", which explained why I was unaware of any symptoms. He said that Maalox at bedtime wasn't enough, and taking medication in the a.m. (I. E. Aciphex) wasn't doing me any good as I was experiencing "silent reflux" at NIGHT. He recommended Zegrid (over the counter, 20 mg) for 4 weeks; he wanted me to take it in the evening rather than the a.m. Again, I was doubtful, wondering if, again, I was just wasting my time and money. (This has gotten quite expensive as I'm sure you can imagine! ) Anyway, it's been almost 3 weeks and I'm feeling MUCH, MUCH better! Seriously, I went from being on the verge of tears (almost nightly) due to tongue discomfort, and gargling with Maalox (and other remedies) multiple times a day to rarely thinking about my tongue (d/t a lack of discomfort) and no gargling (with one exception, which I'll mention in a minute). My pain, on a scale of 1-10 (10 being the worst) went from about an average of 8 to an average of 1 or 2! :) The choking feeling stopped first, then the burning in my throat went away; gradually, the aches and pains in my neck ceased, and finally my tongue burning and soreness subsided! But it did take time (3 weeks and counting) and patience like the doc said.

In short, I felt I just had to write and post on "Earth Clinic" b/c I had visited this website many times while trying to find relief for my burning/painful tongue. Others provided me with some helpful suggestions (and support), so I figured now it's my turn to (hopefully) help others.

In conclusion, here are my thoughts having been through this burning tongue/bottom lip/throat nightmare myself: First of all, while very uncomfortable, don't panic and don't think the worst (like I did). Be persistent (with your doctor), experiment with various remedies (from sucking on ice to gargling with Maalox), and, most importantly, be patient and positive (if at all possible)... Remember, it took 3 months for me to find a doctor with the right "remedy" and then weeks of using the this remedy (20 mg Zegerid OTC in the evening x 28 days) for me to feel ALMOST total relief. Seriously, I never thought I'd see this day (a couple of months back)!

Please note, I started taking folic acid and Vit. B Stress pills (in the A. M.) at about the same time I started taking Zegerid. I also started brushing my teeth (and gargling) with Biotene 2x/day awhile back. I figured I had nothing to lose. While I don't think I have (or ever had) a vitamin deficiency, I started taking vitamins b/c it was suggested by others with BMS symptoms. The ENT said my tongue would be bright red and shiny, which it wasn't, if I was suffering from a vitamin deficency. Just thought I should mention this anyway...

Good Luck to anyone suffering from a burning mouth/tongue. I know it's terrible, but I really think you can find some relief if you're able to get to the root of the problem. It may take awhile and, unfortunately, quite a bit of money, but it can be done, so please don't lose hope! Strive to meet with a doctor familiar with the various causes of BMS as this should save you a lot of time and unnecessary (and costly) doctor visits.

All My Best, Ashley

Replied by Joann
(Nashville, Tn)
09/12/2012

I read your postings I thought I was reading my own story. I had gotten sick several months back and woke up choking one night unable to breath. I litterally felt like someone was choking me and in a lot of pain. My throat especially the larynx area felt squeezed and my tongue was so swollen I freaked out. For about a week couldn't swollow anything without choking and the pain was awful. I went to the doctor and he changed my medication but I couldn't even swollow the pills w/o choking on them. I didn't notice the change burning sensation (because I couldn't eat anything) until about a week and a half later. Everything I ate, drank, chewed on just hurt. Felt like glass going down my throat. Almost like strep throat except you can't breath and you keep swollowing hoping it will go down. It took a month for my throat to feel decent. Then the burning of the mouth which I had thought was just a side affect of my medication or from whatever had attacked my throat became more noticable. I just happened to get fed up with it this morning because I can't eat anything w/o my mouth being on fire. I'm still suffering from the awful BMS part. So I"m going to try some of these remedies and see if it helps. From the split mouth, to the bumps on my tongue. This has been going on for four months now. Something has to change, it sucks not being able to eat with your family and friends. Wonderful on the wasteline, not so wonderful on the social life.

Replied by Judy
(Adelaide, Australia)
12/20/2012

To Badgerme from Seatte: Thanks so much for your info on BMS. Like you, I have tried literally every thing to elimate this problem. Mine has been ongoing for over 2 1/2 years, driving me totally insane. ENT specialist indicated Menopause and also silent reflux (he had seen this in mainly women only). I will be heading to chemist at lunch time to get these "Zegrid" tablets and give them a go. I am on reflux medication at the moment, 4th day into them, no sign of it mellowing. GGGrrrr........! Can't even enjoy a white wine lately as it burns my tongue soooo much. I will keep in touch in regards to the outcome. I hope I get the relief which you have from taking these tablets. Thanks very much. Will try anything :)

Replied by Kay
(Bala Cynwyd, Pa)
11/22/2013

To Judy from Australia- did you BMS stop? Your story sounds like mine.

Replied by Kristine
(Chicago, Illinois)
02/21/2014

I am 46 years old and have had burning tongue/mouth syndrome for 2 years and 7 months and yes, have spent literally thousands of dollars on doctor/dentist/specialists, lab work, more lab work, etc and am currently on Dr. #11. My chiropractor/nutritionist is helping the most. My story is similar in that the burning mouth and neck pain started together. Sometimes things seem to help and then the burning comes back and progressively gets worse. I have tried every remedy out there and then some. I have cleaned my body of yeast, have lost 15 pounds on an already very slim frame, avoid sugars (except red wine in evening. It numbs my mouth and is my only source of relief), breads, found I am very allergic to all dairy and eggs and have slight to moderate allergies of many foods. I eat extremely healthy and am scared of literally everything I consume. I am perimenopausal and the burning tongue/mouth and neck pain started in the midst of my mother's decline in her long battle with COPD. Some doctors thought it was stress related and the burning would subside after she passed. She died 15 months ago and it has not left. I have not had a single day without burning in my mouth in 2 years and 7 months. I am going to try the Zegrid starting tonight. My chiropractor ran tests that show I am significantly lacking in progesterone and when I started the natural oil 2 weeks ago, it made a tremendous improvement in the burning sensation. 2 weeks on progesterone, then 2 weeks off. I just started the 2 weeks off, 2 days ago, and they burning returned with a vengeance. This is a horrible affliction. I can sympathize with those that end their lives over this. This is all consuming and prior to this affliction, I rarely visited doctors. There is so much more I could write but I will stop for now and check back in once I have gone through a few rounds of progesterone and a month of Zegrid. Wish me luck please. And luck to everyone out there who suffers from this devastating affliction. Thank you for sharing Ashley.

Kristine

Replied by Nanowriter
(Hotspot, Texas)
02/21/2014

Have you tried supplementing with magnesium? Most of us are low on it and stress will cause you to burn through it. A quick google showed a study that found a connection between burning mouth and magnesium deficiency.

Replied by Prioris
(Fl)
02/21/2014

Hi Kristine.

Burning mouth seems to be a form of neuropathy. Burning is a common sensation of neuropathy, Maybe the myelin of the nerves is being destroyed. Have you tried the methylcobalamin, benfotiamine and R alpha lipoic acid remedies.

"In one study, researchers followed 42 women and 18 men with burning mouth syndrome. The patients were given either 200 mg of alpha lipoic acid or placebos three times daily for two months. Nearly all of the patients on alpha lipoic acid showed improvement compared to placebo, and 75 percent benefited substantially, with some experiencing complete recovery."

You mentioned that your mother who passed away had COPD. I am just curious what remedies she had tried.

Replied by Kristine
(Chicago, Illinois)
02/22/2014

Thank you both for your feedback. Yes, I have tried magnesium injections to no benefit. I have yet to try ALA but it did read very much about it on this site. My intention was to try the Zegerid at bedtime as Ashley had mentioned, give it a month, and if it did not help, switch to ALA. Or should I try the ALA first?

Thinking it was a neuropathy, we tried gabapentin for several months increasing the dosage to 2600 mg but the side effects were worsening and my BTS/BMS did not improve, although it did in the beginning.

My mother did not have BTS, just COPD. She lived much longer than any doctor predicted and they were actually amazed b/c she lived for more than 2 years after she fell and broke her hip. At the time of her fall her lung capacity was 12.5%. She was on oxygen for 9 years prior to her death.

Thank you very much for any and all advice.

Kristine

Replied by Prioris
(Fl)
02/22/2014

Zegrid has serious side effects: easy bruising or bleeding, unusual weakness; fast or slow heartbeats; or low magnesium (dizziness, confusion, fast or uneven heart rate, jerking muscle movements, jittery feeling, muscle cramps, muscle weakness or limp feeling, cough or choking feeling, seizure) ... This isn't a drug you want to be on for the long term. Even if you do get some relief with it, I'd keep searching for something more natural.

I'd make sure you use Right ALA. I'd go with right ALA first since your system may be more clean of medications.

Replied by Becca
(Abilene, Tx)
02/23/2014

To Kristine in Chicago.....try 1500 to 1800 mg of sustained release alpha lipoic acid along with a good b12 supplement....the ALA literally saved my life. It's not completely gone because I think part of mine is related to my thyroid, but I am living again. There are many medical studies related to ALA at that dosage and BMS. Good luck!

Replied by Kristine
(Chicago, Illinois)
02/24/2014

To Prioris from FL and Becca from Abilene: Thank you both so very much for your input. I started on the Zegerid 2 nights ago and changed my diet/lifestyle (once again) in the hopes of some relief. I have noticed a big difference in the chemistry of my mouth in the am, but the burning, albeit less, still persists (and I know this is not an over night solution). Given all of the information I am seeing posted re: ALA, I believe I can take this with the Zegerid. Is this correct? I want to give the Zegerid time to help with the reflux because after all of the research I have done on silent reflux (LBR), and my lifestyle and diet, I believe this could be the culprit. I have every symptom of LBR except heartburn, and I realize most people who suffer from LBR do not present with heartburn. So now I have changed my diet and eating habits (I was always a late dinner eater), switched to alkaline water, am taking the Zegerid and would like to add ALA but have seen varying posts about the dosage. I am 5'6 and 107 pounds currently. Also, the burning really returned with a vengeance after I stopped the progesterone oil at bedtime (2 weeks on and 2 weeks off). After researching the internet and talking with my chiropractor/nutritionist, I found that progesterone neutralizes acid in the esophagus and stomach. And is a natural stress reliever. Stress causes more acid reflux. Ugh! I am obsessed and all consumed with this condition. I cannot believe I still have it after this long. I feel as if I cannot move forward in life or honestly enjoy life to the fullest until I get this constant burning pain under control.

Again, I really appreciate your input. I want to start on the ALA but need to be sure I am taking the correct dosage. And then again, I am concerned that starting on too many things (Zegerid, ALA and natural progesterone...which my doc says is very much needed as I am completely depleted of this hormone) will cause confusion as to which is beneficial for this condition, although all may be.

Thanks again!

Kristine

Replied by Mike62
(Denver)
02/24/2014

Kristine: 4oz canned sweet potatoes every other day makes progesterone. 1g hops extract prevents them from being aromatized.

Replied by Prioris
(Fl)
02/25/2014

I think the progesterone being a hormone would be the highest priority especially if you are depleted. Being depleted of any hormone could set off a chain reaction of problems in your body.

I would stop taking the Zegerid and take the R-ALA. The other poster mentioned taking 1500-1800 grams and that being affective for her. I would consider that dosage since it was effective for her. They say that 300 grams is therapeutic dose. Start at 300 and work your way up. Maybe you won't need as high a dose. Even studies have used up to 1200mg for 3 weeks or so.

Experiment with Zegerid later. I'd be concerned about how the Zegerid interacts with the other two the most. I know you started it so may be pain to stop it but that is just my 2 cents worth.

Replied by Becca
(Abilene, Tx)
02/25/2014

I too am not a fan of the Zegarid....could actually compound the problem. You might try Mastic Gum..one capsule morning and evening....medically proven to heal stomach issues....took myself and worked great. As far as the dosage of ALA...most of the clinical trials said that some relief started at 600 mg....most got significant relief at 1200 to 1800 mg per day with no negative side effects noted and was studied for two years. I agree...start low and increase slow. My endo gave me progesterone capsules to take everyday...I take sporadically. Never heard of low progesterone being linked to BMS....but hormones do crazy things to the body so you never know. Hang in there...no one that has never experienced it can begin to understand what it does to the body and mind.

Replied by Prioris
(Fl)
02/25/2014

Just for clarification. Are those doses of ALA the ALA or the R-ALA?

Replied by Kristine
(Chicago, Illinois)
02/26/2014

To Prioris, Becca, and Mike62: Thank you so very much for all of your input and help you have shared. I really appreciate it. But I have to admit that I have stayed on the Zegerid at bedtime and the changes have been amazing. I have also committed to the diet and lifestyle of acid reflux sufferers, buying the book "Dropping Acid, The Reflux Diet Cookbook and Cure". I have nearly every symptom of this problem and medicine, namely Zegerid (1 of approx 5 listed) is needed to help alleviate the symptoms of Silent Reflux or LBR). LBR is different than GERD, that is why I was unaware of my condition. The changes since taking the Zegerid and changing my diet and eating habits is tremendous!!

Additionally, progesterone is a natural stress reliever and acid reducer (namely in the stomach and esophagus). I found this through my own research and discussions with my chiropractor/nutritionist/hormone therapy doctor. At the onset of this illness I was in the throws of my mother (whom I shared an extremely close and loving relationship with) entering the downward spiral of COPD, and I was in periomenopause (where your hormones are on the decline), and also a single mother preparing to send my only daughter off to college...not to mention I decided to quit my job of 20 years and start up my own business. What a perfect storm of stress and hormone depletion!!

Needless to say....I am excited and thrilled to no end right now. As I type this I have zero burning in my mouth. Yesterday I experienced maybe 2 hours of slight burning (range of about 3 on pain level). My pain level prior to the Zegerid was running a 7-8, bringing me to tears and monopolizing my entire life daily. As Becca mentioned, no one knows what this can do to your mind and body.

Thank you all so very much again and I will continue to keep you posted. If I have indeed found my remedy, after nearly 2 years and 8 months, I certainly want to help others.

Kristine

Replied by Prioris
(Fl)
02/26/2014

I'll add one more thing you can do.

Zegerid side effects may not be good for you long term. It may just mask the symptom and then boomerang on you later on. Research anectdotal reports of long term use of Zegerid and see what it is doing to other people so you can nip any problem in the bud.

I'd experiment with Stabilized Na R-ALA after you've had a good vacation from pain. If it works, it will be more healthier for your body over the long term. Good Luck.

Replied by Kristine
(Chicago, Illinois)
02/27/2014

Thanks Prioris. I will check back in to confirm how I am doing. I intend on adding the ALA in time (unless I go pain free for a very long period of time). I have only been on the Zegerid for 5 nights now. Burning now and then but remain hopeful. I know it takes takes weeks for full benefits of Zegerid to take effect. I do agree that possibly the stress and burning has caused damage to the myelin and therefore I will need the ALA. Either way, I will check back in. Again, many thanks to everyone.

Kristine

Replied by Ed
(Ct.)
02/27/2014

Up until a few weeks ago, I had never heard of this. What I did come across was a show on TV that had featured something very similar. In this case the cause was the person's high blood pressure meds. When meds were changed the symptoms went away. Don't know if it will help but - something to consider.

Replied by Becca
(Abilene, Tx)
02/27/2014

It's ALA.

Replied by Kristine
(Chicago, Illinois)
02/28/2014

To Becca, Prioris and Ed: I am going out to get the ALA today. I did more research on Silent Reflux and BMS and find that some patients take the Zegerid and ALA together. They take the Zegerid to help control the reflux, and the ALA for the burning pain. Also, finding so many cases where BMS is directly related to Silent Reflux (LBR). Burning persists, at about a 1-3 today and yesterday....at least not the 7-8 I had been experiencing.

Becca, how long did it take for the ALA to kick in and give you relief? I am going to start at 200mg 3x a day and increase it weekly until I get up to your recommended dosage. Prioris: I am having some of the side effects from the Zegerid but hope they will subside over time (headache, muscle cramping). The headache could be from not eating as well. So difficult to eat as it inevitably increases the burning. Certain foods make it very bad, while others not so bad. I am trying to be patient and let the meds and diet kick in.

Ed: I do not have high blood pressure but do appreciate your input. My blood pressure always runs on the low side. Unless the burning pain is high. At the onset of my neck pain and burning tongue I was on zero medications. Not a single one.

Thanks again everyone. I am determined and hopeful. I can function at a pain level of 1-3. When it creeps up to 7-8 that's when life gets very rough. I cannot express enough how much I appreciate all of your input. Please stay tuned as I feel I may have more questions. Thanks-

Kristine

Replied by Becca
(Abilene, Tx)
02/28/2014

Kristine....I was desperate....I started out on 900mg of a high quality sustained release brand and I also wanted to get alkalined quickly so I drank 1/2 tsp of cooking grade baking soda in about 6 oz of water the first night right before I went to bed. I did the same thing the next morning. I took 600 mg that night...no baking soda. I did this for several days and then cut out the daily baking soda...just every few days if I have an acidic meal. I continue the 900 mg in the morning and another 600 in the afternoon. I saw results quickly....with 12 to 18 hours. I also us a liquid vitamin b supplement and take vitamin d....both very important in nerve conduction and neuropathy. Don't be afraid of the ALA...and definitely do the baking soda with it for the first few days.

Replied by Prioris
(Fl, Usa)
02/28/2014

Today I gave someone from some ALA I had lying around - about 600mg - to try for their neuropathy. They experienced bad heart burn. It is better absorbed on empty stomach but some people need to take it with food. For people who haven't taken larger doses of ALA, it is something to be aware of.

Stabilized Na R-ALA has the advantage of R-ALA. It also has contaminants removed. It suppose to have the highest bioavailability (40 to 60 percent more). It also suppose to NOT have heart burn and stomach upset properties of the other types. I ordered some Na R-ALA a couple days ago so will see how that does.

Replied by Becca
(Abilene, Tx)
02/28/2014

Prioris...am curious where you got information on the R ALA. None of the clinical studies I read mentioned a "stabilized" version of ALA. I would love to read up on it if you would share.

Replied by Prioris
(Fl, Usa)
02/28/2014

This goes into more details about Alpha Lipoic Acid and why you may want stabilized form. I hadn't looked into ALA for quite a few years and found out things I hadn't been aware of. http://claudiap.hubpages.com/hub/What-to-Be-Very-Careful-About-When-You-Get-Alpha-Lipoic-Acid

Replied by Becca
(Abilene, Tx)
03/01/2014

Prioris.....thanks for the info. Been reading up on it and have decided to give it a try. Just as DIM is the stable form of Indole Carbinol 3 ...which is what my doctor put me on years ago before the stabilized derivative was discovered..and is safer to use...i understand the stability issue of taking natural remedies. Although I have had great success with the ALA that I have been taking...there is still some unresolved issues and the brand that I trust also has the Stabalized R ALA and I should be able to take fewer tablets. Thanks again for the info....and God's health to you!

Replied by Prioris
(Fl, Usa)
03/01/2014

In one brand of the Bioenhanced Stabilized Na R-ALA I saw a note for Burning Mouth Syndrome

"Please note: For BMS (Burning Mouth Syndrome) we recommend you take 2 capsules 4 times a day until you see results. Then you can reduce the amount slowly until you see what works for you.

1 capsule = 150mg

Replied by Kristine
(Chicago, Illinois)
03/02/2014

I picked up the only ALA I could find at the Vitamin Shop. There were 2 types and I bought both. One is a triple strength ALA rapid release at 300mg and the other is a maximum strength ALA at 600mg. Started on it yesterday afternoon. I could not find any type of stabilized R ALA, but maybe I could order once I finish the supply I have.

I am feeling very hopeful. I continue with the Zegerid for now, 20mg 2x a day and muscle cramping has ceased, with occasional headaches remaining. Prioris and Becca: Do you suggest then that I take 300mg of the ALA 4x a day to start then? I am basing this on your recent suggestion. I started yesterday with the 600mg straight off and like you said Becca, I had adverse stomach reactions which subsided over time but I was very happy with the level of burning. I would put it at a 1 yesterday. Yesterday was a very good day.

Becca: I have been on sub-lingual vitamin B-12 with folic acid for quite some time and my blood test results always show that I am running high on all vitamin B's. My doc stresses to keep up on this supplement. She also recently added vitamin D to my regime as I am running on the low end of the scale.

My vitamins and supplements were recently scaled back largely and at this time I am taking the following: Juice Plus, vitamin B-12 with folic acid (2 tablets under the tongue 2x a day), Vitamin D every other day, fish oil, Etodolac 400mg mostly in the mornings for maintenance of arthritis pain in neck (if it's bad in the evening as well), and Norco 5 for emergency tongue pain and/or neck pain. I do my best not to take this unless necessary as I realize what an awful drug this is. It does help tremendously when my tongue/mouth burning is bad. If the tongue burning goes over a pain level of 5 I will take one. Without fail it always brings the burning down to a 1-2.

Thanks so much to both of you. You are God's sends, without a doubt.

Kristine

Replied by Becca
(Abilene, Tx)
03/02/2014

Kristine....I take my ALA twice a day....900 mg in the morning (3 x 300mg) and another 300 to 600 mg in the afternoon depending on how I feel. Vitamin D is crucial....at one time I was on a prescription of one a week at 100,000 I.u. Later, my doctor said I could just take OTC.....I take 1000 I.u. daily. I was taking several different supplements daily and ended up getting some imbalances. Now, I know this may sound weird, but I decided that I needed one balanced supplement that gave me everything I need and settled on a well known brand of pre natal vitamin with DHA. I take the above dose of ALA, vitamin D, and the pre natal. I feel better all over, energy is great, and the imbalances are re-balancing. I have layed off of the extra sublingual B for the moment...will let my body tell me when I need it. I am going to change to the stabilized ALA...found my brand on amazon...to see if I see any better results. when I have a burning flare up, I take 1/2 tsp of baking soda in water to alkalize quickly. This has always alleviated the burn quickly. I also rinse my mouth with soda water at night after brushing my teeth.

Replied by Prioris
(Fl, Usa)
03/02/2014

I would order the Stabilized version of Na R-ALA just based on the research. I realized you already spent money and bought something and want to use it up but I'd bite the bullet and order the stabilized form. You can test it side by side. You want to stop the BMS first and then you can maybe use up the ALA later while on maintenance.

You have to take at least 1200 mg of ALA (and that may include side effects also) to even begin to hope to match the Stabilized Na R-ALA form but the stabilized version has much higher bioavailability. So it is probably between 5 to 40 times better than ALA so that makes purchasing ALA a waste of money. I can't verify at the moment whether it is 40 times.

Research has shown that unstabilized ALA absorbs better than unstabilized R-ALA so forget about unstabilized R-ALA.

Someone mentioned that sustained release form worked best. That is what helps maintain the levels in blood stream. That is probably the reason why they recommended taking it 4 times a day in NON-sustained release form. This is something to take into account when treating oneself to rid yourself of the painful symptoms.

They also had a dosage of 1200mg to 1800mg of ALA as effective. At least 600 mg of ALA was starting point for therapeutic effects. The stabilized form could cut that dose down to between 300 mg to 900 mg.

"Most ALA supplements sold today contain a 50/50 mixture of natural (R-Lipoic) and unnatural (S-Lipoic) Lipoic Acid. The S-Lipoic Acid form, which is not found in nature, is a byproduct of chemical synthesis.

Research indicates that not only does the human body have difficulty absorbing this unnatural version, it may actually inhibit the most essential properties of the R-Lipoic Acid form.

The “R” form is considered the biologically superior form because it is identical to the ALA produced by the body.

Unfortunately, without special processing, R-Lipoic Acid is highly unstable and difficult to absorb.

This problem has been solved with the introduction of Bio-Enhanced? R-Lipoic Acid, the world's first stabilized RLA." Geronova is one of the companies doing research into this.

Replied by Kristine
(Chicago, Illinois)
03/03/2014

Thank you so much. Prioris, will do re: the Stabilized ALA. I feel so much better, it's amazing. Becca, I failed to mention that I have been brushing my teeth with baking soda only, dating back to June. I tried to switch back to regular toothpaste a few weeks ago but couldn't handle the increased burning. I've had 3 great days in a row (I would rank my burning pain at a 0-2 all day long) and have had no need for Norco. I am drinking only alkaline water, rather than regular bottled water since last week and will try your remedy next time the burning increases, but hoping there isn't a next time. I also added back in an occasional glass of red wine (not suppose to have alcohol on reflux diet) as I have to say I do love it, and it completely takes away the burning.

So to sum it up for any other sufferers, I currently have been on the Zegerid for 8 days at 20mg 2X a day, started the anti-reflux diet and alkaline water at same time, and have added ALA at 1,200mg per day 2 days ago. I have to reiterate how the chemistry of my mouth has completely changed since starting the Zegerid and diet, amongst so many other Silent Reflux symptoms diminishing.

I remain very hopeful, positive and blessed to regain control and have my life back. I cannot give enough thanks to EarthClinic for hosting this site, Ashley for her original posting, and Prioris and Becca for staying with me and helping so very much. 2 years and 8 months now, 11 or more doctors later, and finally, some hope for relief of this horribly chronic burning pain.

Kristine

Replied by Becca
(Abilene, Tx)
03/10/2014

to Kristine from Chicago....just wondering how you were doing. I am 4 days on the Stabilized R ALA and have seen even more improvement than on the regular ALA. Definitely worth the extra money. I still take 3 capsules in the morning...but its only 450mg instead of 900mg. So far, that has been enough for the whole day.

Replied by Kristine
(Chicago, Illinois)
03/20/2014

Two more questions Becca: Do you go days without any burning? And how long have you suffered from this condition?

When I asked my oral surgeon why it is when I try anything new...be it the anit-yeast diet, learning about my food allergies and steering clear, from those allergens, various supplements, more exercise, Neurontin, Zegerid, Anti-Reflux diet, ALA, etc...the first few days my burning diminishes so very much. He said it's what's known at the 'Placebo Effect'. Your mind wants the treatment/remedy/medication to work so very much that your mind believes it will...for a time. And eventually the symptoms do return. But I do contend that my reflux is minimal now, compared to before starting the Zegerid and ALA, and that the pain is much better now most days. I will continue on the ALA, as there are some hours that I am as close to burn free as possible. It hasn't reached the pain level of an 8 in some time. But there are days that it creeps up to a 5. Even with the ALA, reflux diet and baking soda mix.

Kristine

Replied by Kristine
(Chicago, Illinois)
03/20/2014

To Becca from Abilene, TX, ...Hi Becca, thanks for thinking of me. I've tried the Stabilized R-ALA and my burning symptoms actually got worse. So after 2 days I switched back and after almost 3 weeks on ALA at 1200 mg (600 in am, and 600 after lunch), I've pulled back to 600 in AM and 300 in pm. Seems to not make a difference in the burning so I am holding at this dosage for now. My oral surgeon called me in to see how I was doing (I had originally seen him for swelling of my parotid gland) and this appt we discussed my BMS in more detail. I also switched from Zegerid to Mastic Gum after 3 weeks and my silent reflux is holding at a minimum. But back to my oral surgeon...when he studied for his MD in Ireland and then went on to become an oral surgeon, their team of doctors saw approximately 100 patients with BMS. He said in his experience the cause of BMS 90% of the time was an anxiety disorder. And I have suffered from anxiety issues my entire life but trying to control it without meds. I have been off my anxiety meds for almost a year now (went off a few months after my mom passed) and that is when the burning became out of control.

Right now I am still taking the Norco at a low dosage to help with the burning (it does! ). Life stressors and lack of sleep make the burning much worse. Still off coffee which was very rough. My oral surgeon thinks that I will really benefit from an anxiety med for BMS in the Klonopin family...but not Klonopin. Can't remember the name. I have an appt with a GP April 8th who is currently treating 2 patients with BMS. So, I am biting the bullet and hoping to go back on meds to help with anxiety. Apparently the majority of people who have anxiety issues usually go on to develop some sort of reflux later in life.

Also, of the 100 patients my oral surgeon and his team treated in Ireland, they were able to cure not a single one. I held it together until I got to my car. Then cried and cried and cried. Then I went out and ate a delicious lunch of the foods I have been denying myself due to reflux issues and anti-yeast diet (Big delicious burger with French Fries!! ). My oral surgeon states some people are just hard wired for anxiety. A co-worker asks what do you have anxiety about now? I respond, the constant burning in my mouth each and every day. And my highly restricted diet. Other than that, life really isn't bad at all. But it certainly was the worst it ever was when this burning began. Apparently more than my mind and body could handle.

Sorry I haven't been checking this posting. My work deadlines have really ramped up as well. But please let me know what you think-

Best,

Kristine

Replied by Nanowriter
(Hotspot, Texas)
03/21/2014

Kristine, you may want to look into B vitamins as well as magnesium. I think that your life long anxiety is an initial symptom of a nutrient deficiency that got worse and then manifested in a different symptom, BMS.

Your symptoms got worse when you took ALA, which uses up B vitamins. Tracking what makes your symptoms worse or better may give you clues as to what nutrients you are missing. The pharmaceuticals you took May have also deprived you of still more vitamins.

My own anxiety and insomnia resolved when I started taking trace mineral supplements. Doctors tend to see anxiety not as a valid physical symptom of its own, but as some weird neurosis.

Replied by Kristine
(Chicago, Illinois)
03/21/2014

Dear Nanowriter from Hotspot: Thank you so much for your input. My symptoms became worse when I switched from ALA to Stabilized R-ALA. They are definitely much better with the ALA than without, so I am back to a maximum strength and rapid release ALA. I take B's every day and especially sublingual B-12 with folic acid. My lab results always reflect that I am not lacking at all in my B's and my B-12 runs very high as I take much of it daily. I am running low in zinc however.

I do completely now agree (since most everything else has been ruled out) that my BMS is directly related to my anxiety. Stressors and lack of sleep make the burning much worse. I have always been a Type A personality and put very much on my plate daily, and the stress of helping my mom die as painlessly and peacefully as possible, running my own business, and sending my only child off to college (all within a 2 year period), I believe, pushed my anxiety to it's limit and yes, manifested itself as BMS. But I do believe that not only anxiety but also reflux, food allergies, and perimenopause all played roles in this condition. That is why I have decided to bite the bullet and go on an anxiety med...and I did read numerous times that clonazapam/klonopin is the drug that is effective with BMS. I am also doing my best to rest and de-stress my life...but it's a hard change when I have been hard wired this way for nearly 47 years. But I will continue to try my best to relax my lifestyle. I am definitely effective and successful in what I do...but paying the price for it mentally and physically.

More input/advice is always welcome :)

Kristine

Replied by Nanowriter
(Hotspot, Texas)
03/21/2014

Kristine, thank you for the feedback.

You mention that you have been a type A personality lifelong. My theory is that Type A people are that way due to a mineral/vitamin deficiency, rather than having a Type A gene.

So one can try to "brute force" oneself into being less driven, but you will still actually be driven, due to a lack of the proper nutrient whose job is to calm the mind. I understand that it was a cardiologist who noticed his patients were literally clawing the material from the armchairs in their inability to relax. High blood pressure and cardio problems are linked to magnesium deficiency. My theory is that mental states are not being linked to deficiencies, but they should.

For example, one of the symptoms of pellagra, or a vit b3 deficiency is dementia as well as schizophrenia. A type C or cancer personality type has also been posited.

So my theory is that trying to not be anxious or depressed or driven or manic is an exercise in futility. It is only by getting the proper vitamins/minerals that brain health can be restored. Anyway, it's a theory and may be total nonsense! I appreciate your patience and hope you get relief.

Replied by Becca
(Abilene, Tx)
03/21/2014

Kristine...the first few days I responded well to the stabilized version. I am now blending the two types until I use up all of the stabalized r ALA and then will go back to the regular ALA. I too have anxiety issues and a stressful career and fully believe that stress and a missed prescribed dosage of thyroid meds set my BMS off. I am not losing faith though that this will go away. So much of what I have read said that it can stop just as quickly as it began...average of 7 years. I have very little burning now...just a desensitized feeling in my lips and mouth.

Replied by Kristine
(Chicago, Illinois)
03/23/2014

Dear Nanowriter: I literally have been checked, tested and re-tested on every vitamin, mineral, hormone, saliva test, RA disease, stomach tests you can think of, and then more and again.The only hormone that stands out is my lack of progesterone, which is being supplemented. When I say my zinc level is low, it's really at the low end of the 'normal' range. My RA factor was slightly elevated (18), but not enough to diagnose a RA disease. And at my last blood draw, my vitamin D was at the low end of the normal range. Food Allergies, on the other hand, are a different story. My entire life my blood pressure has remained low...usually 100-110/60-65. No history of heart disease or cancer in my family at all. Everyone lived a long life into their 90's except my mother who was a lifetime smoker (55 years) and died at 76 from COPD. She too, suffered from anxiety. My bad cholesterol is always low (last reading was 59). My good cholesterol usually runs about 100, but last reading was 151 and my doctor was astounded. She said in her 45 years of practice she had never seen a good reading that high. Additionally, every time I apply for additional life insurance and have to undergo a blood draw (most recently 3 years ago) I am always informed that I fall into the top healthiest category and always qualify for the lowest rates. I am perplexed. But all this aside, what type of trace mineral supplements do you use? Thanks Nanowriter-

Dear Becca: Yes, I have read that 7 years is the average in about 60-70% of BMS sufferers. July will mark my 3rd year anniversary. I have started a natural tension and stress reliever containing valerian root, passiflora and magnesium carbonate. Today marks the day I taper off the Norco (will do 1/2 pill for a few days, then come off completely) and see what happens with my burning level. Right now, on the Norco, I am burning about 1-2 all day long. Of course less in the am. Stress, without fail, always increases the burning exponentially. I usually sleep very well, but when I do not, the burning increases the same. I am seeing my 13th and final doctor on April 8th. She does have experience with BMS and I am going to speak with her about possibly starting on clonazapam at a low dose. I will keep you posted. I have liberalized my diet which has cut down on the stress. Not being able to eat nearly everything was causing much stress as well. I just steer clear of dairy, eggs and sugar right now. Try not to eat too much processed foods or whites, but added occasional bread and potatoes back in to try and gain some of my weight back. Thanks Becca!

Kristine

Replied by Becca
(Abilene)
04/28/2014

Kristine from Chicago...just wondering how your appointment went and how you are doing. My BMS is 99.9% gone. I stuck with my regimine and it's just gone. Every once in awhile, my lips will feel chapped and puffy when I am unduly stressed, but never gets too bad. Hope you are doing much better. I went back to the regular ALA but a low dosage just for maintenance. My son started having anxiety attacks and I got him started on the ALA along with a multivitamin and he's doing great. My brother got on it for PTSD and doing so much better. I firmly believe in the healing powers of ALA!

Replied by Kristine
(Chicago, Illinois)
05/01/2014

Hi Becca....so very glad to hear you are doing much better. And how ALA is benefiting many of your family members as well. That is great news!

My appt with the Doc went well and she did put me on clonazapam .5mg for anxiety. She believes my BMS is complex and so many variables may be playing a role. Staying on ALA for nerve repair (she also believes it is a neuropathy and that my neck issues may be aggravating the nerves leading to the mouth). My silent reflux gets very bad every time I discontinue the Zegerid so she wants me to remain on it for now. So the reflux is a factor. Dry mouth is a factor, my food allergies she believes are a concern and another factor, digestive issues a factor, anxiety, and, last but not least...my age and peri-menopausal/menopausal changes. I am her 3rd patient that she is currently seeing for BMS.

I would put my pain at a 0-1 nearly every day now, regardless of any and all types of stressors. My neck pain is gone. It left shortly after I started the clonazapam. But there is one draw back and it's the way the clonazapam has changed my personality. I see her again next week and will discuss it with her. I love the fact that my mouth burning is at an all time minimum...but I feel depressed, not happy, not wanting to do anything....etc. So not like myself at all. And I have managed to gain about 4 pounds since starting the drug (which is a good thing for me). Everyone keeps asking me what is wrong. I'm not my usual happy, peppy, non stop, go, go, go, always a smile on my face (despite the burning) individual. And I know that this is the anxiety med that really helps patients with BMS. I've read about it everywhere. I'm hoping my body will adjust and my personality will come through eventually. I have to say that it is really slowing me down. And I'm certain going at a fast pace for many years is what led me to where I am now.

Again, so happy for all of your help, and glad to hear how much it's helped you. I am staying on ALA at 600mg per day. You never mentioned how long you've had BMS, and I'm coming up on 3 years in July. Thinking maybe the longer I've had it, the longer it will take the ALA to repair the damage. But I definitely am a firm believer in ALA and it's healing powers :)

Kristine

Replied by Becca
(Abilene)
05/01/2014

Hey Kristine...glad things are looking up. I dealt with the BMS for 8 months. Yes, there are many factors that contribute to it....stress being one of the main culprits. The Clonazapam also played a harmonious part with the ALA to get mine under control...or really just about gone. Try breaking the Clonazapam in half at night before you go to bed...do not take in the morning. Also, take 300 mg of ALA with it...at night. I assume you are taking the 600 mg together in the morning? If you are taking enough of the ALA, it will definitely help your mental well being and make you feel better. My 26 year old son has started having some of the same anxiety symptoms that I have had. He started on 900 mg of sustained released ALA, along with a good multi vitamin and is doing sooo much better....says his mind feels calm and at ease. I, too believe in the healing power of ALA. Take care and God Bless

Replied by Kristine
(Chicago, Illinois)
05/09/2014

To Becca... I replied to your latest message days ago but somehow it didn't stick. Anyhow, I am so glad to hear how ALA is helping many in your family. And I'm glad to hear you only had to suffer for 8 months with the BMS. I saw my doc again and she did tell me to do the same...break the clonazapam in half and ONLY take at bedtime. It has made such a difference in my personality, energy level, etc and the burning is still minimal and manageable. I do not have to go back to the doc for 6 months! I also did find many studies on BMS using clonazapam and they are all very positive and most of all, it seems the clonazapam and ALA combo is the best to fight this affliction/disease/syndrome.

Unbelievable to finally have this condition manageable and livable. I'm hoping for 100% recovery and you bet I will post it when it happens. Thanks for all of your advice Becca! I appreciate it more than words can say. It's May 9th right now. This all started around my birthday 3 years ago in July. It's my birthday wish to be 100% burn free by this July. Fingers crossed. I will check back from time to time and weigh in when the burning has completely ceased.

Happy Mother's Day to you Becca :)

Replied by Becca
(Abilene, Tx)
05/13/2014

Oh Kristine, I am so happy that you are doing so much better. I wish you continued recovery of your health and a lifetime of happiness! God speed!

Replied by Clare
(Australia)
05/17/2014

I'm so glad I have found your post, Ashley. My symptoms are very similar to yours. The choking you were experiencing is like mine but I would wake up feeling like if I swallow I would choke but I had experienced that on and off for years without any other symptoms. My mouth/tongue burning started late last year after I had a sore throat that didn't go, then I started to stress and after using difflam spray the burning tongue feeling appeared. I too were taking reflux pills in the am but it's not working. I had been tested for deficiencies as my tongue showed signs but they came out ok. So since I have nasal problems and watery eyes too I'm off to an allergist first and if nothing comes of that, an ent specialist. I think in the interim I might check out what you were prescribed to see if anything changes. I do notice reflex sometimes when I'm exercising so it still could possibly be the cause. Thanks again

Replied by Ali
(Wales)
07/08/2014

Interesting. I have a theory on the 'placebo' effect. It is estimated that 95% of the World's population has parasites of some kind. And parasites usually trigger symptoms. I have worms in my body, systemic worms, probably Ascaris or Strongyloides. Parasites rob the body of nutrition and disrupt hormones, etc. I also have experienced the 'placebo' effect when changing diet or nutritional regimes. I believe this is due to the parasites being thrown into confusion over the changes. They temporarily stop their normal routine until they have assessed the new situation, then they 'regroup' and carry on.

Nothing I ever do, lasts. I may feel better for a day or two but then everything goes back to normal....

Replied by Timh
(KY)
07/09/2014
2048 posts

Ali: Do visit the Hulda Clark websites that have extensive natural anti-parasite protocols. Aggressive herbal treatments are combined w/ electrical "Zapping" (at specific frequencies). I am using 3 different zappers as well as 3 different frequencies. Someone recently posted a success report against parasites w/ Turpentine. I have been using all-the-above w/ sustainable but not total success.

Replied by Kristine
(Chicago, Illinois)
08/19/2014

To Wales:

I know all about the 'placebo effect' and have been wondering about parasites. Like you say, changes I make, be it diet or adding supplements/medications, eases the burning symptoms for a short period, but it always returns with a vengeance. Always, always worse under stress...so I have attributed to some sort of neuropathy associated with anxiety. I do not visit this site often as I have literally given up hope on recovery. Just take the good days as they come to me. 3 years and 2 months of this ongoing suffering, and many, many supplements and medications, with yoga added as prescribed by my doctor.

Replied by Pj
(Usa)
08/23/2014

52 year old post menopausal. Developed BMS Oct 2013 after Neuro ripped me from Horizant for Restless Legs. I was also takine 1mg of clonazepam and had some concerns about RLS still flairing up (breathrough and augmentation) and really depressed. Depression/suicide side effect of Horizant so that's why he stopped it abruptly. Anyhow, Horizant, a form of gabapentin is also sometimes used for BMS so I don't know when if I had BMS and the Horizant was treating symptoms then when it was stopped abruptly it started overnight or what. Over the next 4 weeks of horror I lost 13 lbs. Anyhow, I have tried ALA anywhere from 600 - 1200mg per day, from Vitamin Shoppe. Also still taking Clonazepam and have added B-Complex and B-12 and PCP added Multigen (Rx of Iron/Folate) as my iron stores were low which is also bad for RLS. Anyhow, it's been 10.5 months and I've had it everyday, even with .5 to .75 mg of clonazepam. But I've been on that for 10+ years for Restless Legs. And I have anxiety and not much sleep from RLS so vicious combo. I'm also taking Prevacid for GERD which helped the pain in abdomin. Now I'm dealing with failing 3 more RLS med's last one a very strong pain med only took for 4 days and it caused nausea, veritgo dry mouth but alas, helped RLS but couldn't work. Still dealing with withdrawal extreme nausea, vertigo after stopped week ago today and only took pain med for 4 days. Go figure. Very sensitive to Rx's. I cannot hardly eat anything. I only drink water and used to drink 1/2 cup of coffee in a.m. because with no sleep I need caffeine to me going to work. I read your desperation. It's horrible. I go back and forth between the anti-Pharma people (all natural) and everything is gluten or sugar related... I cannot afford to lose anymore weight. Will try to start ALA again if I can keep it down. It does make stomach acid worse for me sometimes. But Im back on Prevacid for that.

Replied by Elaine
(Coral Gables, Fl.)
02/08/2015

Have suffered with Burning Mouth Syndrome for 23 years. Only suggestion I have is to try Lyrica daily-it helps reduce pain so that it is tolerable. Good luck. I have stiff jaw muscles also. So take Ativan as it helps that part.

Replied by Chris
(Stoke)
04/27/2015

Very good, happy you have relief. I had same problem. I am a 40 year old healthy man. Had a bit of stress with my child being ill and had acid reflux that has gone now. But had mouth lips and tongue burning off. I've been to see all the same professionals as you have, with no luck. Tthe dentist has been most helpful I will check that out what you've taken. Take care and thanks for great advice

Replied by Judy
(Australia)
11/10/2015

It did stop for quite a while, but it would come back but nothing like I had before. As I write this, I have in a mild case due to stress. I lost my husband 2 months ago, so imagine that is why. I really believe it is the different foods we eat. I have been using Paroxyl ( mouth wash) a few times day, just swish around your mouth, and that helps. But as for doctors helping, one told me to eat ice cream, and another, to scrub your tongue lightly with a toothbrush, how ridiculous is that. BMS is called Glossadynia. You can google that for more help.

Good luck, Judy

Replied by Diane
(Boonton, Nj)
11/22/2015

Read your story. I hope the Zegerid helps. I also got burning mouth. I have a very rare autoimmune disease Oral Linear IgA it is attacking my mucus membranes in my mouth. I had a lot of dental work done & now have this & burning mouth. I have been to over 35 dentists & doctors in the last year. I have tried so many things & nothing helps. I have also had 3 teeth pulled & lost 35 pounds. Wish I could tell you something helped. Hang in there & don't stop fighting. Dee

Replied by Charlie
(Braintree, Ma)
12/15/2015

My mom was just diagnosed with BMS..She's so annoyed because she just woke up with it one morning..I'm going to print some remedies and pass them on..I feel so helpless I wish I could do more to take the pain away..she's 67 and it's getting her down..:(

Replied by Janet
(San Antonio, Texas)
05/03/2016

I started with BMS about a month ago. I wasn't sure what it was, it started with a dry mouth, burning lips and tongue and my face around the mouth area seem numb to the touch. I am absolutely miserable and I'm so sorry for anyone that has to go through this miserable BMS. I've tried and I'm still trying everything I can find.. home remedies, anti-anxiety meds prescribed by my doctor and I've got an appt. on Friday to see an ENT. I was excited about seeing the ENT but after reading all these comments I'm down in the dumps again. Has anyone tried the Zegrid recommended by Kristine? Please let me know if you have and if it worked. Thank you so much and God Bless everyone that is suffering from this terrible thing! Janet

Replied by Ben
(Bremerton, Wa)
05/03/2016

Here is an article for you. Http://www.livescience.com/50455-burning-mouth-syndrome-herpes.html

Burning mouth can be caused by infectious organisms and certain drugs but you definitely do not have an antidepressant deficiency so that wont cure it but may create additional problems.

Some types of virus are controlled by dmso so that would be a cheap easy way to start and see if it will work for you.

A more severe organism that can be the cause of trouble like this is mycoplasma infection. If doctor prescribed antivirals don't work, if dmso fails to work then try colloidal silver or a big gun virus / mycoplasma killer called gallium nitrate. Certain types of nerve infection are horribly painful until gallium nitrate comes along and nukes the germs responsible. Have a great day.


Multiple Remedies
Posted by Denise (St. Paris, Ohio) on 06/27/2010
★☆☆☆☆

I'm 47 and eight months ago I went on diet and lost 40 lbs. Two months ago my tongue turned white and burning tongue started and acid reflux. Also hot flashes returned in a major way. Doctor put me on 1 a day Ranitidine 150 mg for acid reflux and 5 a day Clotrmazole 10 mg Tro R for my tongue. I also take 1 Mega Vita-Min pill, 1 5000 iu D3 (have a low D level), 2 Omega 3 Fish oil 1000mg, 2 B-100 complex, 3 calcium 600mg Vitamin D3,and some different herb to help get rid of acid reflux. I also started taking 1/2 tsp of baking soda with 2 Tbsp lemon juice in 4 ozs of spring water 3 times a day on June 25 2010. My tongue is hurting real bad and i have no energy. Should i stop some of these vitamins? like calcium? I'm at a loss. I'm not using any dairy products but I am drinking soy milk and avoiding wheat products. Any help would greatly be appreciated.

Replied by Denise
(St. Paris, Ohio)
06/28/2010

This Question is for Ted: I'm new to this site and never needed any help but now I have all these problems I posted on 6-27-2010 . I forgot to say I also now take 3 pills of probiotics in morning and evening with all the other pills. Should I stop most of these vitamins? I dont know what pills could be feeding this problem. And should I avoid fruits and sugar? Thank you.

Replied by Bill
(San Fernando, Luzon, Philippines)
06/28/2010

Hi Denise...My thoughts on your problems are that when you went on your crash diet, your body suffered perhaps through a weakened immune system due to this diet, which left the door open to your burning mouth yeast infection as well as helping to cause acid reflux. Your body appears to be too acid for the following reasons:

The drug Clotrimazole is used as an anti-yeast and anti-fungal that your doctor advised for your burning mouth problems. Clotrimrazole is also used in a topical creams against yeast/fungus. Here are the possible side-effects from Clotrimazole when taken orally as Mycelex Troches:

"Itching; nausea; unpleasant mouth sensations; vomiting."

"Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue)."
Taken from Drugs.com

Your use of Clotrimazole might also be aggravating your your mouth yeast condition. Best talk with your doctor about this.

You also seem to be taking very high doses of Calcium with Vit D (1800 mgs). Since most western foods -- from milk to corn flakes to most processed grains -- now contain so much fortified calcium, I would avoid taking calcium supplements altogether unless you have a particular reason for supplementing large doses of calcium as excess calcium tends to cause considerable problems in the body -- causing acidosis as well as other problems like muscular aches, cramps and muscular pains, tremors and heart arrythmia.

In order to help cure your acid condition, the following protocol would be very beneficial:

*Continue to alkalize your body two or three times a day using Ted's Lemon and Baking Soda remedy.

*If you do take calcium, its very to important balance this intake with at least a 1:2 or 1:1 ratio of Magnesium to Calcium. Supplementing Magnesium will help to regulate the calcium in your body and clear the excess, normalizing the calcium levels.

*The best way to find out what minerals you actually need or what excess heavy metals are in your body is to get a simple hair analysis done. Heavy metals can be removed from your body by drinking green tea as well as eating cilantro in your salad 3 times a week.

*Stop taking calcium supplements completely for a month and see if this helps(take magnesium supplements instead).

*Supplement twice a day with 300 mgs Magnesium Chloride or Mag Citrate or Mag Gluconate.This will help balance your hormones and help remove and balance calcium excess.

*You are taking 2 X B-100 complex every day, which is a high daily dose and excessive. If there is no particular reason for this high dosage, try cutting down to one B-100 or B-50 tablet every 2 or 3 days. Excessive levels of Vitamin B-100 complex can cause problems that irritate - such as insomnia, high blood, fatigue, palpitations, etc.

*Take boron tablets, 3 - 6 mgs a day. You can also use 20 mule team borax which is the same but cheaper and just as good(I use it). Just add 1/8 teaspoon of borax to a litre of bottled water and drink this in cups throughout the day. Boron/borax is the ultimate yeast/fungal killer, helps balance the hormones and gets rid of fluoride from your body as well. See this link for dosage - Borax Cures.

*Use the Oral Detox that Ted recommends for your mouth and tongue problems -- which is the 1% Hydrogen peroxide with Borax(anti-yeast, anti-fungal). See Ted's Oral Detox Remedies here.

*Supplement lugol's iodine 2 drops once a day in a glass of water. This is also an anti-fungal and very beneficial for your body. You can also dissolve 1000 mgs Vitamin C in water and add 2 drops of lugols. This will convert the iodine to iodide and there will be no horrible iodine taste.

*Rather than using multivitamins, try using dessicated liver tablets -- these contain every vitamin, mineral and amino acid that you will ever need -- and in its most bio-available form. You can buy these tablets at any weight training shop. See this link.

I had intestinal candida for about 8 years and finally cured this fungal problem using many of these simple remedies above - which will also work well against your mouth yeast problems. But I'm just a little worried, because if you have other symptoms such as psoriasis, eczma, continual bloated feeling, insomnia, continual constipation or loose stools, irregular bowel movement, low appetite, sugar cravings, low energy, athletes foot, recurring UTI -- then these are all symptoms of intestinal candida as far as I'm concerned -- I had most of these symptoms for many years when I had intestinal candida.

Replied by Denise
(St. Paris, Ohio)
07/15/2010

Bill, Thank you! For getting back to me. I didn't go on a crash diet, I just cut out all the junk food and ate real foods and exercised a lot and than developed all these problems. I have stopped the Clotrimazole and my tongue is feeling better. Also, I have stopped taking calcium. I am just taking vitamin D and Fish Oil and 1 B -100 complex and medicine for acid reflux. I am also soaking in a tub for 20 minutes 3 times a week with Epsom salt added. Sorry for the delay to your fast reply, just was not feeling very good. Thanks again! Denise

Replied by Sonja
(Florida, Usa)
07/04/2018

please join our FB groups on Burning Mouth Syndrome and Primary Burning Mouth Syndrome....this has been a very informative thread...mine is from dental work so I don't believe all these things would be applicable to me...I have read that ALA will not help if it comes from after dental work. I was looking for something and came across this thread. Good luck to all. Now folks are doing cold laser therapy.

Natalia Novikova
(Melbourne)
03/31/2021

Hello Sonja, how are you doing - it's been 3 years since your post. My BMS is also post dental work - veneers! I was just wondering are you still ok and what has helped you. Cheers. Natalia


Oil Pulling, Baking Soda, Milk of Magnesia

1 User Review
5 star (1) 
  100%

Posted by Mary Jane (San Antonio) on 05/31/2015
★★★★★

I had pain in my left side of my tongue for over 2 week... Was taking 4 Advil to help with the pain every 4 hours. I was using ice pack and heat. Couldn't eat, sleep are talk due to the pain. Lost 8 pounds... I made a promised to my self if I found a way to stop the pain I would let other people know...

What I did to stop the pain:

I started oil pulling with olive oil every other night for about 15 to 30 min. Than I did the same with baking soda every night for 1 minute than spit it out... Every morning I would gargle with milk of magnesia than spit it out. That what I did and I'm still doing it. No more pain.

Replied by Michelle
(Ontario, Canada)
07/29/2015

Thank you so much for sharing your experience!

I've been suffering terribly for 7 months, but my doctor hasn't even attempted to be helpful. My BMS seems to have been triggered by a hormonal IUD (along with other issues). The pain was so bad the burning would refer up into my eyes (predominantly on the right) and my cheek bones would ache. My doctor's solution was to wait it out 6 months after the removal of the IUD (another 2 months to go) for my hormones to rebalance and see how I am. I asked what could be done for the pain in the meantime, she said nothing - try not to think about it!

Stopping mouthwash made a big difference (ironically I had increased my usage when this started thinking it would help whatever was going on), but oil pulling (I'm using coconut oil) has been nothing short of a miracle for me. It isn't completely gone, but I go through long stretches of the day when I actually feel normal, and any burning I experience is minimal. I've also been rinsing with warm water and baking soda.

For the first time in months I feel hopeful that there could actually be light at the end of this tunnel! Although my mouth is almost there, I have just started ALAs to see if they can take me the rest of the way.

Thank you so much for sharing your experiences. You've made an incredible difference to my quality of life and my happiness. I was getting very depressed before coming across this treatment. For others who have suffered from the effects of hormonal IUDs, if the effects included vaginal burning and some abdominal pain that continued after removal, look into pelvic floor physiotherapy. Again, not 100% cure, but almost there (hopefully 100% once my hormones rebalance).


Oral Care

2 User Reviews
5 star (2) 
  100%

Posted by Miss Poker (Edmonton, Alberta, Canada) on 10/04/2011
★★★★★

Approximately 2 months ago I changed to a whitening toothpaste for a chance at whiter teeth. Succesfully the toothpaste worked right away (I mean the first time I used it), which of course left me suspicious. With no apparent health decline I continued to use this product with much happiness until just a few weeks ago. The initial suspicion about the toothpaste left my thoughts by this time. At first I thought that I was getting a cold because of the mouth irritation. So I took all of the preventative measures I knew, to rid my body of any other cold symptoms. A few days later I still had no signs of a cold. However the mouth burning continued to worsen reaching to my tongue and making it unbearable to brush my teeth. About a week into the intense burning, my mouth started to secrete a foul taste whenever I drank or ate anything. The day I started tasting this metallic/chalky/bitter taste in my mouth, I typed it into google and found a forum full of people with the exact symptoms I had. They claimed that it was 'burning mouth syndrome'. I did a little research and found that a stressor or change is what experts are thinking causes this 'syndrome'. For me I found that within 1 day my symptoms lessened by immediately switching from whitening toothpaste to 'Pro namel'! I believe that some of the things that people are putting in their mouths happen to be toxic to the cells and taste glands. In my case it happened to be a tooth whitening product. However there are many toxins hiding in our bathrooms and kitchens that we don't even realize are there.


Oral Care
Posted by Trudi (Surrey, England) on 03/20/2009

Burning Mouth Syndrome:

Hi, Can anyone suggest a cure for burning mouth syndrome, I've had this for 7 months, and the pain is unbearable. the only thing that helps calm it down a bit is sugar free gum, but I'm hoping there is an alternative to this.

Replied by Joyce
(Joelton, Tn)
03/20/2009
490 posts
★★★★★

Hi Trudi, Quite a while back I found my mouth feeling that the entire mucosa was raw, and this might be what you describe as burning mouth. One evening when heading out to join some friends, my mouth started it again when it hadn't bothered me all day long. Then my mind started searching for things that might have caused it. The last thing I had done before leaving home was use Scope mouthwash. Scope tasted better than Listerine and didn't burn like listerine while in the mouth, but when I stopped using Scope mouthwash, I stopped getting the problem. Apparently something in the mouthwash was causing the problem since getting rid of the mouthwash got rid of the problem.

If your entire oral cavity is burning, it is most likely going to be related to the mouthwash because it is more likely to touch all the mucosa.

Replied by Gina
(Oslo, Norway)
03/20/2009

Hi; vitamin B12 deficiency has burning tongue as a symptom. You may check the level with your doctor. B12 is poorly absorbed from supplements; it is better to have an injection.

Replied by Frank
(New York, NY)
03/20/2009

While the sugar free gum may help you temporarily, it contains artificial sweeteners which may be exacerbating (or even causing) your condition. Stop chewing it and see if the symptoms go away. You may also be brushing your teeth with a toothpaste which is giving you an allergic reaction. They put a lot of strong chemicals in toothpastes these days. Did you switch toothpaste brands 7 months ago?

Try swishing with baking soda and water to alkalize the inside of your mouth.

Replied by Rosy
(Orlando, Fl)
03/21/2009

Use plain castile soap to brush your teeth. It could be a flouride sensitivity.


Red Light Therapy

1 User Review
5 star (1) 
  100%

Posted by Quinn (Arizona) on 11/07/2023
★★★★★

Burning Gums

I suffered with gums that were on fire for over 2 years. I tried everything - and came here a lot for inspiration.

Nothing worked. Then I discovered red light therapy. I was hopeful that could work & it did! I ordered the Handheld Red Light Therapy Device Pro from U----e. This red light has an attachment tip you can put in your mouth. I saw something similar also on Amazon.

The day I received it, I used it for 20-25 minutes on my entire gums. That night, I observed that the pain had turned to a tingling sensation that lasted all night.

When I woke up the next morning, I was pain free! I still use it occasionally on my gums, but for the most part, I have remained pain free. Praise God!

Quinn


Saffron and Goldenseal

1 User Review
5 star (1) 
  100%

Posted by Natalia (Melbourne ) on 02/15/2021
★★★★★

I have recently been diagnosed with BMS by an oral medicine specialist and prescribed clonozepam rinse. It made me feel awful, detached from my body even though I wasn't swallowing it.

Through trial and error and consuming all the usual supplements for this condition (Alfa lipoic acid, zinc, vitamin B's, soda, clove etc - to very little effect) I have found most relief in the last few days from saffron tea (20 strands per glass of hot water, steeped for 10 min) I sip it throughout the morning and hold it in my mouth before swallowing it.

Also at the same time I started taking Goldenseal - dissolve a capsule in half a glass of water and hold in my mouth for about 3 min then swallow it. Don't know what works better.

There is a lot of studies recently about saffron treating depression, BMS and other conditions. I'm not out of the woods yet as my mouth is still not back to normal but this is the first little sign of improvement I've experienced in the last two months. To be continued...


Valerian

1 User Review
5 star (1) 
  100%

Posted by Wilhelmina (The Netherlands) on 03/12/2018
★★★★★

I am suffering from Burning mouth disease for over 15 years. At last I got spasms.. I took valerian, and that stopt the spasms. About 20 mg each 4 hours. Not the pain, helas.


Vitamin B12, ALA

6 User Reviews
5 star (3) 
  50%
4 star (3) 
  50%

Posted by Roy (Missouri) on 06/30/2018
★★★★☆

Have had bms for over a year and a half now and it wasn't until a couple months ago I knew the symptoms even had a name. Raw tongue throughout the day. Anything salty tasted like it was solid salt. Any oil in cooking made meals taste like they were covered in motor oil.

Started mega doses of subliminal B12 and alpha lipoic acid. Probably over 2400mgs a day. Got maybe 50% better. Then read where there are 2 versions of ala. An E type and S type. Most supplements have both forms but your body can only assimilate the R version. Have been on that version for almost a week now. 2400mg a day. Also super b complex.

I traced my beginning issues back to when I was put on gabapentin for anxiety. Have been on 1600mg a day for almost a year. Have backed that off to night time only at 400mg and will watch for withdrawal symptoms and discuss with my doctor in two weeks. Some sites say GABA helps bms other sites say it makes the symptoms worse.

I'm at my wits end with this hanging over my head from morning till night.


Vitamin B12, ALA
Posted by Mike H. (California) on 12/18/2016
★★★★★

I had ear surgery to repair an ear drum. As soon as I woke up my mouth felt strange. It took me two weeks to realize something was really wrong. My mouth was on fire all the time and food tasted metallic and some things tasted very bitter and I also lost the taste buds a bit. As I googled my symptoms, burning mouth or thrush seemed to be the problem. I tried all the home remedies and nothing helped. My mouth hurt all the time and eating was not fun. My doctor thought maybe a nerved in my ear was stretched from the surgery and the symptoms fit that too, but he said he would give my Nystatin to give it a shot, but he did not think I had thrush.

After 4 days of swish and spit with the Nystatin, my tongue and hurt more than ever and my lips were getting little cracks and fissures on the inside and I knew that was not thrush. I kept searching for answers and I read about B12 and probiotics and lysine and ALA. I went and bought those.

Yesterday I took all of those and one dose of sublingual B12. Today I only took one dose of sublingual B-12. About 20 minutes later my tongue started to "come back" I sat here amazed as I realized I now only have a small spot still feeling like it is burning. I have had this for over a month now. I am honestly shocked. And so happy. Burning mouth syndrome is very painful and constant.

So then I started researching BMS and B12 deficiency and I have been taking heartburn meds for over 20 years almost daily and I am over 50.
I guess your stomach cannot absorb the B12 and it takes up to 7 years to show the symptoms! Right now I just cannot believe my tongue and mouth are not killing me. I going to stop everything but the B12 drops since I want to confirm that is the cure.


Vitamin B12, ALA
Posted by Michel (Tx) on 07/17/2016
★★★★★

Editor's Choice

B12 in conjunction with Lipoic Acid has TOTALLY gotten rid of my BMS!! I have tried every single DYI I've read about, including drugs my doctor prescribed...the only temporary relief was rinsing my mouth with Apple Cider Vinegar, and even that was painful. Depression was setting in because the inside of my lips felt like there were small flat raw lesions that came and went in different areas, and around the front tip and edges of my tongue were ON FIRE all the time, 24/7! I then read about taking B12 and Lipoic Acid together.

This is my own DIY (I weigh 135lbs) 3000mcg B12 with 300mg Alpha Lipoic Acid in the morning, and 1000mcg B12 and 300mg Lipoic Acid after dinner. You can adjust and see what works for you.

Within just a week all the little lesions were gone from inside of my lips and my tongue barely had any sensitivity. As of today, 7/17/16 I've had 4 total days PAIN FREE. I've also been able to go back to brushing my teeth with my regular toothpaste with NO BURNING!! I feel like I've died and gone to heaven. I wish you all the best if you try this.

Replied by Deborah
(New York)
12/28/2016

How are you doing now? Have you continued with the B12 and ALA? I have had BMS symptoms for a few months now, and am going to try your combination... just wondering how it's going now and if you kept up with the supplements since you posted? thanks...

Replied by Susan
(Archdale, Nc)
10/10/2017

I'm so grateful to find this site. I have had Bms for 4 years. I've been on all sorts of fibromyalgia drugs and changed diets and meditated. Nothing works. My dentists passes me off but my doctor has tried many things. I went out today and bought some B 12. I'm hoping this works. Good luck to all of you.

Replied by Renee
(California)
10/28/2017

I'm in 3rd stage renal failure and have CFIDS too, so will both those hurt my kidneys any further? Thank you!

Replied by Linda
(Vermont)
03/30/2018
★★★★☆

Michel's comment was the closest thing I had to a resolution. Because of his comment, I'll make sure to keep commenting back with updates because I know how overwhelming this can be.

I read something on the Mayo Clinic that many times it's not just one issue that causes burning mouth syndrome- but a few different reasons. So far, this has made sense for me. I was trying to eat more healthy so I cut out a lot of foods out of my diet. My main was that I was only drinking water. I think this led to a vitamin deficiency. After reading this thread I started with Michel's doses. Helped a ton but didn't totally get rid of it. My tongue felt raw and almost swollen now.

I just went through a process of elimination. What had changed around the time I started with the symptoms? For me, with my hopes of a healthier lifestyle, I had switched to a metal water bottle that I was continuously drinking out of through out the day. I read about an oral allergy to nickel. I stopped using the bottle 24 hours ago and have noticed a drastic change. Obviously everyone is different, but there has to be someone that may have the same issue. Reading forums I felt so defeated. Mostly I have realized that it's a process, but by process of elimination, you can most likely find the source of your pain.


Vitamin B12, ALA
Posted by Linda (Sc) on 07/31/2015
★★★★★

I had burning mouth syndrome with a very painful tongue. When I started taking Super B complex, iron and B12 daily, it resolved in a few days. It was really awful:( and painful. I have not had it again since starting these supplements.


Vitamin B12, ALA
Posted by Sandy (Virginia Beach, Va) on 08/17/2014

Burning Mouth Syndrome for 13 years of hell!

I had RNY gastric bypass in 1999. In 2001 I had what I've now come to know as BMS. I went to many dental professionals, medical doctors, etc. They brushed it off. I've had many symptoms of B-12 deficiency that doctors ignored including chronic nerve pain. It was because I no longer had the Intrinsic Factor to convert cyanocobolomin to methylcobolomin. About 4 years ago (won't even mention everything I went through in the intervening years) I realized this and switched from cyan- to methyl-. After about 6 months I started getting better. Except for the BMS. Then, because of some of the drugs I'd been given instead of methyl-, I had to have my top teeth pulled. Couldn't wear the dentures - it made the BMS worse! New dentist has me doing heavy metal detox because of a lot of fillings and he's saving the bottom teeth with non-amalgam fillings and making new dentures with a material that doesn't bother me as much. I didn't associate the B-12 with it until today. Been taking ALA since I started taking methyl-. New physician is familiar with RNY patients and she's done lots of blood tests. Waiting for the results. Started taking St. John's Wort today for the chronic nerve pain (nothing else touches it anyway).


Vitamin B12, ALA
Posted by Burnfree (Dexter, Mi, Usa) on 01/13/2013
★★★★☆

B-12 for Burning Mouth Syndrome. The remedy that works for me is 3000 - 5000 mcg of timed release B-12 (once a day) in the morning along with a multi vitamin without iron. If I skip the B-12 supplement at this dosage, the symptoms begin to return.

I experienced this horrible ailment 12 years ago, as a 50 year old Caucasian female blood type A , after I had gone through the silver filing removal process, replacing with composite material. A sudden, severe burning reaction occurred in the dental chair. To find the solution, took a lot of research on my own, trial and error, but lo and behold, success at last. I am also a "supertaster".

It was truly miserable to live with this ailment. I was driven to find a solution and finally did. It took a couple of years to figure it out, but life is good once again.

Replied by Becca
(Abilene, Tx)
01/28/2014

1200 mg of alpha lipoic acid added to that will also make a tremendous difference.



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