The comments below reflect the personal experiences and opinions of readers and do not represent medical advice or the views of this website. The information shared has not been evaluated by the FDA and is not intended to diagnose, treat, or prevent any disease or health condition. Always consult a qualified healthcare professional for medical concerns.
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.
ALA, St. John's Wort, Wood Betony
Posted by Suez (Iowa) on 12/09/2016
Hi everyone, I've gotten this on and off for a couple years, but it would always go away by it's self. This time, NO. I've had it for about 3 mo. now. I take a lot of good things, Wheat grass, and two other greens with lots of good things in them. I've also been taking large amounts of Oregano Oil for about, 3 weeks. Nothing. I drink lemon in my water everyday. I'm plagued with Fibromyligia, Thyroid problems, and acid Re-flux. I will try some of the things others have offered here. But, I have a question. With your burnt coffee syndrome, do you have tiny little red bumps that go with it? I do, and also my husband says my tongue, gums and the roof of my mouth look orange. Anyone have this. I feel sorry for anyone that has this, it is very uncomfortable to say the least. My God help us all, so many people sick now days, because of all the junk they are adding to our foods, water, and the air we breathe. :( I try and eat as much organic and non GMO as possible, but it is kinda impossible to be 100% free of it. Kind regards everyone. Shalom.
Burning Mouth Syndrome Triggers
Posted by Carol (Nj) on 12/03/2016
Thank you so much for posting - I have been suffering with BMS now for about 2 years. It seemed to have started during a tooth implant procedure but I was also going through my life changes. As I was reading your post I started relaxing my tongue and I can't believe that it actually started to make a difference. Looking back on the past couple of years, I realize now that I too unconsciously move my tongue around a lot as it seems I just can't get it into a comfortable place; and my mouth and jaw have been very tense. In trying to consciously relax my tongue and letting it bathe as you suggested, I almost can't feel the annoying sensations while in this relaxed state. I will be consciously trying to relax a few times a day now in hopes that it will get me into the habit - I am hopeful that this will work. I am very excited, as this is something I NEVER thought about. The funny thing is when I first started reading your post, I thought to myself, Nah, that's never going to work, but as I kept reading and started to relax my tongue, I was amazed as how almost immediately I felt a difference. The irritation is still there, but a lot more tolerable and it's only been about 10 mins. It makes sense now as to why BMS reportedly gets progressively worse through out the day as stress levels grow. Now it makes perfect sense as to why relaxation can work! I'm hoping that by relaxing, it will give my mouth a chance to heal and maybe this thing will finally go away. The mind is a very powerful thing! Thanks so much again and God Bless!
Burning Mouth Syndrome Triggers
Posted by Diane (Canada) on 11/22/2016
I had a burning tongue about 2 years ago and many appointments. ( 3 doctors, many blood tests, dentist and finally the ENT). Everything looked normal except my tongue was burning and driving me crazy.
When I finally saw the ENT, he was very helpful. He looked at the tongue and mouth, and right away, he said he could see that I had the habit of running my tongue over my teeth. I was probably doing it many, many times a day without noticing it, like a nervous tic. The diagnosis was burning tongue syndrome, but he was sure it was caused by this habit. He said : the good news is there is nothing wrong with you. The bad news is I can't help you.
He said the only thing to do is to be conscious when I am moving my tongue in my mouth, specially when I am running it over my teeth. Then, consciously make the effort to just relax my tongue at the bottom of my mouth. It will go away once you relax.
In my case, he was right. I started noticing how much I move my tongue in my mouth specially when I am stressed. It feels like it's in constant motion. Worst in the afternoon, when stress level is rising and I start feeling tired. So I started by making a point to take breaks at work. I would sit down for about 15 minutes, breath, and relax the tongue at the bottom of my mouth. At first it felt weird, like it wouldn't relax. What helps is gathering saliva in my mouth ( sorry if it sounds gross! ) and kind of let the tongue bathe in the saliva. It seems to relax better that way. I also try to relax my whole face, and the jaw during this little session ( I am always surprised how tense my face can be! ) . After about a week of doing this a few times a day, I really started to see some improvement.
I am pretty much symptom free now, but I get the burning feeling once in a while, specially late afternoon, during stressful hectic days, or when I am worried. Then I make a point of doing this relaxing exercise and it just goes away on it own again.
I am easily stressed and tense. Some people bite their nails. I knew I was a lip chewer, but I hadn't realize I was also obsessively rubbing my tongue on my teeth, and that is what was causing my tongue problem.
I sincerely hope it can help someone else.
Dietary Changes
Posted by Carol Santa Barbara (Port Saint Lucie Fl) on 11/03/2016
Yes I do but, my problems started when I was having dental work done. The technician spilled a solution in my mouth preparing for a veneer application. I had burning and blistering. I have had BMS ever since, and have tried many ways to relieve the discomfort. hopefully, some of the remedies I have been reading about will help.
ALA, St. John's Wort, Wood Betony
Posted by Hisjewel (America, New York) on 09/07/2016
Good Morning Nicky!
"This is the day that the Lord has made,
I will rejoice and be glad in It! "
The fact that you are still praying tells me that "you are a woman of faith."
"You believe that what you are asking God for can happen." While we are in that waiting place, we have to take up a declaration and a song, which God puts in our hearts.
Let no one still your joy, and don't you give it away! I often have to catch myself here. During my trouble, if I am not doing something I enjoy, I may be worrying. We protect our joy by: (1) Maintaining a right attitude, (Now I tell you the truth, if its hormones I take a 400 to 800 IU Vitamin E or I just keep saying "Jesus" until I feel the burden and weight lifted.), (2) Speaking Bible declarations, (3) And by singing a song God gives us.
The woman who had the issue of blood for years in Matthew Chapter 9 kept saying within herself, “If I may but touch His garment, I shall be whole.”
Here are some declarations that have brought me through some sickness and infirmities and tough times.
(1) I have touched the hem of His Garment and I shall be healed
(2) "With His stripes I am healed"
(3) In Him I live and move and have my being.
(4) "This is the day that the Lord has made, I will rejoice and be glad in It."
This is how we keep giving our troubles and pain to God. We chase away worry with scriptures, songs and thoughts of good and lovely things.
You are praying for us, and we will be praying for you. You have the victory!
HisJewel
ALA, St. John's Wort, Wood Betony
Posted by Nicky (Oregon) on 09/06/2016
Yes, I have had burning mouth for 10 years now, I have seen every doctor there is to see. I have tried everything from pills the doctor prescribes as well as herbals and ALA. I have tried Zegrid, an antacid, which another lady had mentioned and it helps, but I get flare ups. sugar seems to be a trigger. I take coconut oil in capsules and candistat, plus golden seal. I have tried everything and I am just so done with this. I'm tired of pain every day. Never Happy. Not sure what to do next.
This all came on as I had an underlining condition back in 2008. It was a Deep Vein Thrombosis (blood Clot) at the age of 38 between my stomach and my small intestines. It was removed along with 3 ft of small intestine that died. My symptoms started back in 2007 around thanksgiving, with my mouth, then it moved to my arm then my stomach and here I am. Thank God they found it or I could of died. I pray that God will cure all our diseases. I pray that all that are suffering, they are healed. This is so hard as it is not seen. Very unhappy. Thanks god bless
Dietary Changes
Posted by Violet (Brisbane) on 08/22/2016
Hi Dave, so glad to here that Clonazepam is working for you. I myself have been prescribed this medication for BMS but I was interested to know what dosage you are taking of this drug?
ALA, St. John's Wort, Wood Betony
Posted by Dreadfulwitchdoctor (Texas) on 08/03/2016
★★★★☆
I've had BMS for about 4 years. I've tried every remedy and some helped more than others. I settled on
alpha lipoic acid as the most effective, even though it just reduces the symptoms; it doesn't eliminate them. I tried the r-ALA and couldn't tell much difference, if any. I was disappointed because I've read from so many different people that it was much better. Since it's so much more expensive it isn't worth paying for it, for me. Others may, and obviously do, have different experiences. I take 300 mg three times a day.
I decided to add wood betony since I had some and I know this herb is useful for nerve issues, particularly related to the head. I do feel I get a slight improvement from this addition. I make a tincture from the dried herb and a menstruum of 50% Everclear and 50% distilled water. You could also use straight vodka. I let it sit for about six weeks then strain into a dropper bottle. I take a dropperful a couple of times a day but it would probably be better if I upped that to three.
The wood betony got me thinking about other herbs for nerve pain/damage and realized I should use St. John's Wort. I'd never used SJW for nerve problems before, but I have read that it's excellent both internally and externally for that purpose. I do know that it loses potency quickly when dried, so I ordered some from a source I know to have fresh, high quality herbs and started making tea with it. I am in the process of making a tincture from it as well, since my understanding is that you can get a quality tincture if you make it shortly after the SJW is dried. But I may just continue drinking my tea (and add the wood betony to my infuser) since I think the surface contact is helping as well. I've been letting it cool enough that I can take a large sip and hold and swish it in my mouth to bathe the inside surface of my mouth with SJW. I let my herbal teas infuse for about 10 minutes, covered.
I've been using ALA almost exclusively for at least a couple of years now, but the addition of both of these herbs, especially the SJW, has done a lot to alleviate the residual discomfort.
Vitamin B12, ALA
Posted by Michel (Tx) on 07/17/2016
★★★★★
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.
Burning Mouth Syndrome Triggers
Posted by Carolyn K. (Florida) on 07/09/2016
I have had bms for 2 years now. It is awful. Most drs have told me that it is a nerve issue. Burning and aching pain. I can't say enough how this pain has changed my life...
Multiple Remedies
Posted by Mmsg (Somewhere, Europe) on 06/29/2016
Michel, I seem to be finding diverse uses for Clay. Maybe you can try it as a mouthwash.
Multiple Remedies
Posted by Michel (Greenville, Tx) on 06/28/2016
I found the recipe for a candybar I love...just confectioner's sugar (powdered) sugar and peanutbutter. I was pretty much eating it all the time. Hungry? Grab the candybar mix and eat. I know I consumed at least 1lb of confectioner's sugar in the process; but one day, I noticed it didn't taste the same and it actually made my tongue sting. And my tongue hasn't stopped burning since. I've done bloodwork which is totally normal; I can still eat peanutbutter, but nothing so far has worked...I know I've read many things are suspect for causing BMS, but I wonder if larger amounts of sugar consumption, especially processed sugar like confectioner's could be a culprit. Sugar feeds yeast, yeast LOVES sugar...candida is yeast and I developed candida at the same time. I got rid of the candida, but the BMS never stopped. Next on my attempts to stop the BMS that I've had for 3 months too long...is iron, as well as Lipoic Acid, and B1.
Baking Soda, Dietary Changes
Posted by Anjum (California) on 06/28/2016
Hi every one suffering with BMS, I was in Miami Florida when I wrote here to BMS sufferers and I said I was doing good after 10 years of suffering with BMS. Yes, for five years I was BMS free but recently in April of 2016 it came back again. I still think the cause is the sugar.
I was taking Jamba Juice greens, thinking it has only natural fructose from fruits and green verges but I guess not, it also has some kind of sugar that triggered it again. I am trying hard to get rid of the symptoms but it is not helping. It has gotten worse than the one I suffered 10 years before. But I am confident that controlling the diet, ( eliminating all the sugars and sodas, dairy and wheat, ( even wheat bread with 100% whole wheat will sometimes triggers it, eat it when you are symptom free) white pasta and white rice. Just, eating the greens with proteins (good meats) brushing teeth with baking soda and coconut oil, using biotene mouth wash, swishing mouth with coconut oil and also taking vitamin C and vitamin Bs, Alpha Lipioic Acid and minerals will help) That's what I am doing and hopefully it will get better in few months. It takes time for it to go away. I am hopeful.
I am having few good days in a week already where it is 50% to 80% relief. Please the first thing you do is, quit the sugar for good if you have BMS. Even though honey is non-acidic food, is not good with BMS because you never know if it's really honey or sugar syrup. Nowadays you can not trust on anything if it pure or junk. Even vitamins are not what they say on the label. Every thing is full of chemicals and GMO.
What should we eat? At least, I figured what not to eat: "SUGAR" dairy and wheat.
EC: Thank you so much for updating us after 7 years!
Iron
Posted by Catherine (Alliston Ontario) on 06/28/2016
I wish there was a drug to take to make this go away. After a year of searching, tests and blood work, I have been given the label of BMS and no direction. It is extremely frustrating to live with this disorder nonstop without relief. I am gluten free so not that. I have a number of inflammatory issues so guess this is my latest.
I have gotten some ideas from reading about everyone's experiences. Just glad to know that I am not alone.
Multiple Remedies
Posted by Rainbow (Melbourne, Australia) on 06/07/2016
★★★★☆
Like others here, I believe my Burning Mouth syndrome is linked with neck pain --- I had some physiotherapy done to free up my neck joints, and SUDDENLY the mouth pain diminished! The physio explained that it's the same nerve that is sending those aggravating pain signals to our tongue. Since then I've been much more attentive to exercise, stretching, and stress reduction. I also take Alpha Lipoic Acid, and vitamin B-3 for nerve pain. (plus all the regular B and iron supplements...). I've eliminated regular toothpastes and use natural pink salt water to gargle. A specialist gave me TACROLIMUS ointment for my tongue - that seems to help. Also, apparently if your problem is autoimmune related, the drug Plaquenil will help (it does for me). I also get acupuncture to balance my system. Have courage! I've had this awful problem for a year - and finally, I'm beating it. I'm hoping you can, too.
Multiple Remedies
Posted by Ben (Bremerton, Wa ) on 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 Janet (San Antonio, Texas) on 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
L-Lysine
Posted by Lmw (Perth, Western Australia) on 04/26/2016
I am interested too in how much you took.
Burning Mouth Syndrome Triggers
Posted by Maureen (Midlothian) on 04/19/2016
My BMS came on as I was diagnosed with periodontal disease. I initially thought the pain was related to that but was given BMS diagnosis by periodontist. Had antibiotics, antiseptic mouthwash, various toothpastes and more antibiotics and mouthwashes. Hard to pinpoint cause but feel that it may have been a combination of the gum disease and the shock of learning how advanced it was. Since both the gum disease and pain came out of the blue think there is a relationship there. Anyone else got any ideas as to cause?
L-Lysine
Posted by Lisa (Kentucky) on 04/19/2016
★★★★★
I suffered with a rash on my tongue, burning tongue and also a film like on my tongue. This was after a very extensive back surgery. It was to painful to eat or most anything. After almost a year of trying different things, I started taking l lysine for my fever blisters again and my tongue cleared up.
EC: Hi Lisa,
Can you please tell us how much L-Lysine you took daily? Thank you!
Multiple Remedies
Posted by Cath (Dubai) on 04/02/2016
Hi, I was very interested in your post as I've had severe bms for 18 months. Does your husband continue to use all of these treatments?
Multiple Remedies
Posted by Dave (Fountain Inn, Sc) on 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 Gail (Pa) on 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
Multiple Remedies
Posted by Bcaru (Bristol, Ct) on 02/18/2016
White table salt is terrible for the body. Try using pink Himalayan salt or Celtic sea salt, black lava salt, any salt that is natural. Pink Himalayan has the most trace minerals and is very good for you. Do not use salt that has been processed or bleached.
Burning Mouth Syndrome Triggers
Posted by Judy (Tasmania ) on 02/09/2016
Hi Kokear, Sorry I haven't been on the site for a while.
I asked my doctor about Alpha Lipoic Acid, he said he didn't know anything about it. BMS has come back due to the stress of losing my husband a few months ago.
I am taking 10mg of Endep twice a day, but I still get some burning in my mouth. I feel I should try the APA and see what happens.
Judy
Burning Mouth Syndrome Triggers
Posted by Duckiedmud (Montreal, Quebec) on 02/06/2016
I had a prevnar13 shot (vaccine used to prevent pneumococcal bacteria infection) 3 months ago. A week later I started to get BMS. It has gotten steadily worse. I am blaming Prevnar 13. I will try things I have read in other post. I can hardly eat it hurts so much.
Iron
Posted by Mt (Ottawa) on 02/04/2016
Acupuncture helped my wife for similar symptoms.
Iron
Posted by Kathy (Michigan) on 02/03/2016
I've been gluten/dairy free for five years, and started the BMS about 8 months ago. Got rid of sugar too now. I've been doing the apple cider vinegar drink for a few days once a day, but I'm going to try it twice a day. Still have a burning mouth 24/7. Gets me up several times a night. I'm so sick of this. I just want to get a good night's sleep, not have to drink water all night long.
Multiple Remedies
Posted by Timh (Ky) on 01/30/2016 2043 posts
Colloidal Silver 2x per day by both swishing in the mouth and drinking for whole body antibiotic. Do this for 1 wk then try Zinc/Vit-C lozenges 2x day for 1 wk and you should get some relief. The prior suggestions should also help.
If you don't get relief from all-the-above suggestions you will definitely need to do a colon cleanse and a parasite cleanse, as these conditions cause chronic infections that do not remedy by either pharmaceutical or natural medicines.
Multiple Remedies
Posted by Alexandra (Cheshire. Uk) on 01/29/2016
To Betty (Manlius, New York),
You have my sympathy for your terrible condition, Burning Mouth Syndrome. I do not know the answer to this problem, but may I suggest you try eliminating gluten foods from your diet. Do some oil pulling once or twice a day. Do not use toothpaste, instead brush teeth with bicarbonate of soda in solution, perhaps 1 teaspoon dissolved in 1/2 cup of water, use as a mouth rinse too. I believe dissolving it will prevent it being abrasive on your teeth.
Hope this brings you some relief. Please keep us informed whether it helps or not.
Multiple Remedies
Posted by Betty (Manlius, New York) on 01/28/2016
I am 82 and since May 2015 I've been dealing with BMS. I do have Hypothyroid disease since age of 50.. My BMS started with constant saliva bubbles percolating in my mouth - then the burning tongue and the burning and bubbles haven't stopped since May 2015. No one here on this website has mentioned the saliva bubbles - have any others had this too? Now my story with all the doctors and meds. I've seen two Primary Care Dr's., one ENT who told me that everyone gets saliva in their mouths - JUST SWALLOW IT - and out the door he want - that cost me a co-pay of $40.00. Went to two Dental Surgeons - one said he knew exactly what it was and he could help me by filing the inside of my lower teeth down a little which was irritating my tongue. I CRIED, told me to stop all other meds and rinse with warm water and hydrogen peroxide and it will be gone in 2 weeks. I called their office after two weeks and told them I still was suffering with it and to tell the Dental Surgeon how upset I was. That cost me $65.00. Then I went to see an Allergy/Asthma Dr. and tried many meds which I will list below all Dr.'s meds. He is concerned and wants me to keep in touch. And I do. I only saw him 2 visits but we talk on the phone once a month for my update.
Oh this next one is a good one - This Dental Surgeon was recommended by a dentist in my area. I drove way across town to see this Dentist. This Dental Surgeon had the nurse take my blood pressure then he asked me a few questions then said he would call my Primary Dr. and have her stop my two meds - Amitriptelyne and my blood pressure meds. So, I paid $75.00 for the Dental Surgeon to have his nurse take my blood pressure and he to make a phone call. I am still furious about this. I can eat - that's when I get relief but I can't be constantly eating, I drink lots of water, sugar free gum, sugar free lozenges, lidocaine, dental paste helps. The meds I've been on are:
FLUCONAZOLE, MONTELUKSAT, CLOTRIMAZOLE, MAGICMOUTH WASH, TRIAMCINOLONE PASTE, PREDISONE, LIDOCAINE, GABAPENTIN.
i'VE HAD ALL THE BLOOD WORK DONE BY MY PRIMARY CARE DR. AND ALL WAS NORMAL
i'VE HAD ALL THE ALLERGY TESTS DONE AND ALL WAS NORMAL.
I EVEN WENT TO OUR UPSTATE MEDICAL CENTER HOSPITAL WHERE I SPENT 7 HOURS. MANY DOCTORS LOOKED AT AND TALKED WITH ME AND NOT ONE OF THEM KNEW ANYTHING ABOUT BMS. I am at my wits end in dealing with this situation every waking moment. IF WE CAN SEND A MAN TO THE MOON WHY CAN'T OUR MEDICAL RESEARCHERS FIND A QUICK SOLUTION FOR THIS TERRIBLE CONDITION?
Burning Mouth Syndrome Triggers
Posted by Kokear (Brisbane) on 12/17/2015
Hi Judy, I have had this burning mouth and throat for about 4 weeks after a few months of stress worrying about my health. I went to my GP today and she had never heard of BMS. I have been using natural remedies baking soda/honey etc. She gave me endep to take so will see how it goes. Also decided to take Alpha Lipoic Acid 600 mg daily. Will let you know what happens.
Multiple Remedies
Posted by Mmsg (Somewhere, Europe) on 12/16/2015
Dorothy, would drinking LOTS more water help?
Multiple Remedies
Posted by Dorothy (Wi) on 12/16/2015
I have had BMS for 21 months, it is horrible!!! One of my symptoms is a phantom salty taste in my mouth. Eating anything with salt increases all symptoms. Has anyone had this symptom, if so, have you found a remedy that has helped you? Also, how much oil do you use for oil pulling?
Multiple Remedies
Posted by Charlie (Braintree, Ma) on 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..:(
Multiple Remedies
Posted by Diya (Virginia ) on 12/14/2015
★★★★★
BMS is treatable.. My husband woke up with BMS one morning. I was so worried and checked each and every post on internet. I found good remedies here.
I tried almost every home remedy mentioned here. Don't know which one worked but he is symptom free after one week! The things I tried are attached in image here.. Also mentioning in brief:
1. Baking soda rinse
2. Brushing with baking soda instead of tooth paste
3. Stop using mouth wash
4. Folic acid supplements
5. Glycerin rinse
6. Lavender oil application
7. ALA (alpha lipoic acid)600mg a day
8. Honey application
9.drink honey with milk
10. B complex supplement
11. Topical anesthetic like lidocaine ( I didn't try this one)
12. Capsaicin local application ( didn't try this one)
13. Oil of oregano (drink one or two drops in water with meal daily ) ( didn't try this one too)
14. This may also be due to fungal infection in mouth or glossitis. So, make an appointment with your doc to check.
15. Antidepressant may help in some cases as I found on internet. ( try to reduce stress and exercise daily)
Hope this helps some one!! Keep trying. For this condition you are on your own to find cause and remedy.
EC: Hello, so sorry but no image was attached to your post.
Multiple Remedies
Posted by Diane (Boonton, Nj) on 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
Dietary Changes
Posted by Dave (Los Angeles) on 11/11/2015
★★★★★
After one year of suffering from BMS, I was prescribed Clonazepam. It started helping within a few hours, and I've been taking it once a day (late evening before going to bed) for about 1 year. I don't suffer any side effects and the mouth pain is reduced about 80% from where it was when I started. And the pain seems to slowly be diminishing. It was quite bad at first.
Clonazepam is pretty cheap, but requires a prescription. My doctor has also asked me to replace coffee with green tea and avoid carbonated beverages. Also, no alcohol based mouthwash. The symptoms seem to be slowly going away, but there's still a bit of discomfort at all times. It's tolerable and sometimes I don't even notice it. Quite a bit better than two years ago when it started. Better in the morning, hurts more in the afternoon, and better in the late evening.
My doctor described BMS as a little bit like tinnitus (ringing of the ears), where there really isn't a ringing sound, but the brain thinks there is, and the Clonazepam stops the brain from thinking that there is burning in the mouth. So far, we have had to change the dosage and it's working for me. Plus, the stuff helps me sleep better at night.
That's my experience. Dave
Multiple Remedies
Posted by Judy (Australia) on 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
Burning Mouth Syndrome Triggers
Posted by Judy (Tasmania, Australia) on 11/01/2015
Try Endep it is a prescription medication. I had BMS really bad 7 years ago, due to wrong medication supplied. The ENT specialist prescribed it, and with in a short time the pain went away. I still get it sometimes, but nothing like I had before.
Hope this helps.
Burning Mouth Syndrome Triggers
Posted by Janice (California) on 10/28/2015
I am such a healthy person except for this severe BMS which I have had for 11 months. Speaking and swallowing are difficult and nothing brings relief. I have to work really hard not to be depressed. It has been awhile since you posted this message. Are you better yet?
Multiple Remedies
Posted by Ingrid (South Carolina) on 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
Dietary Changes
Posted by Dave (Fountain Inn, Sc) on 09/11/2015
Hello Patricia;
Re; burning mouth syndrome
If you google "burning mouth syndrome virus caused" you will get five or six articles on HSV-I being the cause. And I believe that colloidal silver can kill viruses. I'd at least take this to your MD and see what harm it would do to swish out mouth three times daily with CS...and gargle with it. If me, I'd do a complete irrigation...that is sinus and ears as well as holding in mouth for thirty seconds and spitting out. I'd try that for a few days to see if I got any relief. Just an educated guess based on the articles under the google search.
Dietary Changes
Posted by Anon (Us) on 09/11/2015
A hair analysis may pin point the mineral that is out of balance.
Dietary Changes
Posted by Patricia (Vancouver) on 09/10/2015
I have suffered from BMS now for ten years and find that after trying all the natural remedies posted online, the only thing that helps me is clonazepam. While I hate taking this drug it is better than suffering the pain of BMS. Unfortunately the body gets used to it after a certain time and you have to keep increasing the dose.
I also tried the ALA treatment which seemed to help initially but then the BMS came back again, so I went back to the clonazepam. The down side is the drug is highly addictive and the side effects when coming of it are horrendous, which I found out when I stopped using it while trying the ALA treatment. Much as I hate taking this drug it is better than suffering the BMS, I understand how this disease can drive people to suicide. Only people suffering from BMS can understand how bad it can get.
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.
Iron
Posted by Lori (Melbourne Beach, Florida) on 07/30/2015
Same exact thing happened to me!
Oil Pulling, Baking Soda, Milk of Magnesia
Posted by Michelle (Ontario, Canada ) on 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).
Oil Pulling, Baking Soda, Milk of Magnesia
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.
Multiple Remedies
Posted by Rose (Toronto) on 05/26/2015
Mary, definitely try the ALA. If you look online, you will see several studies for ALA and BMS. That's how I took it, after enduring BMS for over a year.
At first, I was in despair, because I thought nothing was happening. I had determined to follow the study's way of doing it exactly, so I hung in there and kept going. It wasn't until the very end, when I started tapering off the dose that I finally got some relief. It cleared up entirely, and I've been free from that awful burn for nearly a year now. So, do give it a try!
Multiple Remedies
Posted by Mary (Wichita, Ks) on 05/26/2015
Gladys, although your suggestions are very helpful if your BMS is a secondary issue resulting from yeast (fungal) overgrowth or imbalance, it does not do any good if BMS is the primary issue. I went through an entire round of multiple anti-fungal meds and I take a strong powder probotic daily. I have been taking ACV daily now for over a month, I have tried pulling with unrefined organic virgin coconut oil and I am just about to complete a round of anti-viral meds. No change. My BMS started after a sinus infection and bronchitis. I also have thyroid issues, I am 50 and have full blown menopausal symptoms as well. Started on Armour thyroid in March and my hot flashes have gotten worse, as well as, now I can't sleep so my BMS is worse due to lack of deep sleep. I am at my wits end. Dreading the summer heat, and this continuous pain in my mouth. My only relief is Xylitol gum. Still burns a bit but makes it at least manageable. I am going to try the ALA as soon as possible. I am currently working with my ENT to find an answer. This thread as given me the most info to date. Really happy I found it!
Multiple Remedies
Posted by Chris ( Stoke) on 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
Multiple Remedies
Posted by Gladys (Melrose Park, IL) on 03/30/2015
Had this so bad once that I thought I'd have to live with it, but eventually it went away... Obviously the good bacteria (flora) was unbalanced! Tongue would burn and burn then break out in geographical patches then stop burning... So annoying and uncomfortable
Try taking a raw (keep refrigerated) probiotic for a whole month (should maintain that everyday) raw with the mother apple cider vinegar shots daily and tsp olive oil swished in mouth and swallowed before you eat... Use bicarbonate soda mixed with olive oil to clean teeth instead of reg toothpaste at least till it clears, good luck ?
Multiple Remedies
Posted by Carrie (North Palm Beach, Fl) on 03/28/2015
★☆☆☆☆
I have suffered for at least 20 yrs with Burning Mouth Syndrome. Although it has been off and on (approx 2x yr for about 2-6 weeks at a time ) but truly pushes you to the brink. Can't talk or think after struggling through a day of work (my poor husband and kids). Anyway, did have my worst episode a few yrs ago when eating little to no carbs or sugar - had lost good amount of weight but healthy and happy until til it came back with a vengeance. Went to dr who worked hard for me. I had severe B1 defiency and very low iron. Got supps and evntually got better. Broadened diet but slacked on vits of course bc was better. Here I am a year later and miserable again so back on every B, iron, ALA...going to get bloodwork again.miserable...keep gum or lump of paper towel or cankercoger stuck to tongue 24/7 now. Can't stand tongue to touch teeth, roof of mouth etc. Also started klonopin, had in house and helps simmer you and it down? Need to get a script for sure but don't know if its the end all.
May need to go to clean limited diet. Will do what it takes. i am 44 but come on, had this as far back as 21. Any advice welcome. Thanks.
Multiple Remedies
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????
Multiple Remedies
Posted by Elaine (Coral Gables, Fl.) on 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.
Iron
Posted by Nicky (Klamath Falls, Oregon) on 02/02/2015
I will try the iron. I have had Burning Mouth Syndrome for 8 years. Been to every doctor. Still miserable. There are days you just want to die. I completely understand. Depression steps in and you feel worthless. I pray you are doing better. This is a very bad thing. Good luck. Still in pain myself. It comes and goes as it pleases.
Iron
Posted by Aimee (Geneva, Ny) on 01/29/2015
Thanks for posting. I'm going through similar symptoms then I tried to go vegan, stopped all red meats, eggs, dairy and my tongue started tingling and then hurting as if I burned on something hot. Eating something acidic was terrible. I'm going to ask my doctor about this. Thank you! Helps a lot!
Iron
Posted by Mmsg (Europe) on 10/31/2014
Mrs. Smith, I'm really curious: what blood type are you?
Iron
Posted by Mrs Smith (Central Va, US) on 10/30/2014
★★★★★
Hey guys, so this is going to be a long story but I thought it might help some of you that have just discovered they have burning mouth syndrome. I just went 4 weeks with it, but it took 3 weeks to get it diagnosed. That's a whole other story that I won't even go into.
Anyway, I'll give you a background about what lead to this. So about 5 months ago I gave up red meat, then about 3 months ago I decided that wasn't so bad so maybe I will try vegan before 6 (aka VB6), then I decided to cut out meat all together, except for large get togethers or on the occasional weekend when I wanted to live it up. So when you go vegan I gave up eggs, dairy, and meat. I loved being vegan, felt great, was taking my b12 supplements, thought everything was fine. That was the case until I burned my tongue one evening eating what I thought was "warm" apple pie. Well I only burned it a little bit, like if you drank something that was too hot. Didn't think anything of it until the next afternoon around 3 pm when the tastebuds on my tongue started swelling up all around my tongue.
So the next couple weeks I went to some crappy doctors that were available at a health clinic and they couldn't figure it out, but gave me some serious pain meds (woohoo! ). They referred me to an oral surgeon who laughed me out of the office because apparently an oral surgeon wouldn't know what to do with this. Then I ended up calling my primary care physician - should have done this in the first place, but unfortunately by the time the pain was initially excruciating it was a Sunday. So he said I had thrush and that the BMS was secondary. He gave me a prescription for Mycelex and sent me on my way but said to call back in a few days if there were still issues.
Well I followed everything to a "T" and my tongue was still going crazy. I started adding things back into my diet - eggs, then yogurt, then white meats. Nothing. In the meantime I had gone in for some blood work, but they only tested me for a b12 deficiency (aka pernicious anemia) and HIV (which they forgot to do at the clinic but luckily I am happily married and was not too concerned about that test). So I vaguely remember mentioning to my doctor during our conversation that I had a slight history of anemia, nothing major just that I wasn't able to donate blood a couple times in my life.
Then a couple days ago I was having a conversation with my husband about how it's like my body is making me eat everything that I had cut out of my diet while I was vegan. Then I remembered that I hadn't eaten any red meat yet. So the next evening we made steak fajitas. The swelling started to go down within an hour, just a little bit, but enough that I could tell there was a difference. So then we went out and got some iron pills and I took one as soon as we got home. The next morning the swelling had gone down a bit more. So then I took another iron pill, had eggs for breakfast, chicken salad for lunch, and a cheeseburger for dinner, needless to say I am almost back to 100% feeling normal.
Now I haven't added any citric acid back in yet, I think I will give it another week just so I don't irritate anything, but I at least wanted to get this posted in case it helps someone rule it out. When I read the boards and heard there is no known cure if it is primary I got completely depressed, the thought of never being able to enjoy a glass of wine again or dinner out with my husband weighed heavily on me. I spent hours trying to figure it out and I hope that by posting this it might just help somebody else. Good luck everyone!!!
Multiple Remedies
Posted by Pj (Usa) on 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.
Multiple Remedies
Posted by Kristine (Chicago, Illinois) on 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.
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).
Multiple Remedies
Posted by Timh (KY) on 07/09/2014 2043 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.
Multiple Remedies
Posted by Ali (Wales) on 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....
Dietary Changes
Posted by Ali (Wales) on 07/08/2014
I eliminated gluten 6 years ago and rarely, if ever, ingest it now (I get a reaction, so I usually know), yet have developed a burning tongue in the last three to four months.
Removing gluten may help because it removes wheat which turns to glucose in the body. There is evidence that this issue is linked to higher levels of sugar in the bloodstream (and parasites in the body, but that's another subject), so eliminating at least some sugar, or form of, must help.
Mine gets progressively worse throughout the day. I am going to try the baking soda remedy to see if that helps. I have long wondered whether enough bicarbonate is getting through to my intestines....
Multiple Remedies
Posted by Clare (Australia) on 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
Multiple Remedies
Posted by Becca (Abilene, Tx) on 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!
Multiple Remedies
Posted by Kristine (Chicago, Illinois) on 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 :)
Burning Mouth Syndrome Triggers
Posted by Faithfulfriend (Cal) on 05/03/2014
That is very interesting sounds like you contracted something at the hospital? This is my thinking if baking soda relieves some of it maybe it is FUNGAL in orgin That is why people are getting relief from no carbs, gluten, and no sugar basically the anti candida diet. If it is fungel try a a natural antifungaLs such as oregano oil , olive leaf oil and garlic and brush your teeth with baking soda and orginal listerine mixed if fungus is the cause you will know soon enough
Multiple Remedies
Posted by Becca (Abilene) on 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
Multiple Remedies
Posted by Kristine (Chicago, Illinois) on 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
Multiple Remedies
Posted by Becca (Abilene) on 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!
Burning Mouth Syndrome Triggers
Posted by Bernie (Nj) on 03/23/2014
My BMS started about 3 weeks ago (3-01-2014) 1st started with dry mouth then shortly thereafter burning mouth. All of this started shortly after a ct scan with contrast of stomach and pelvic area. I have not seen a Dr. yet but will make appt. Monday. I am 75 yrs old in pretty good health I feel the scan had something to do with BMS. BERNIE
Multiple Remedies
Posted by Kristine (Chicago, Illinois) on 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
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Posted by Becca (Abilene, Tx) on 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.
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Posted by Nanowriter (Hotspot, Texas) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Nanowriter (Hotspot, Texas) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Becca (Abilene, Tx) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Prioris (Fl, Usa) on 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.
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Posted by Becca (Abilene, Tx) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Prioris (Fl, Usa) on 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
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Posted by Becca (Abilene, Tx) on 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!
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Posted by Prioris (Fl, Usa) on 02/28/2014
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Posted by Becca (Abilene, Tx) on 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.
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Posted by Prioris (Fl, Usa) on 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.
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Posted by Becca (Abilene, Tx) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Becca (Abilene, Tx) on 02/27/2014
It's ALA.
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Posted by Ed (Ct.) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Prioris (Fl) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Prioris (Fl) on 02/25/2014
Just for clarification. Are those doses of ALA the ALA or the R-ALA?
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Posted by Becca (Abilene, Tx) on 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.
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Posted by Prioris (Fl) on 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.
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Posted by Mike62 (Denver) on 02/24/2014
Kristine: 4oz canned sweet potatoes every other day makes progesterone. 1g hops extract prevents them from being aromatized.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Becca (Abilene, Tx) on 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!
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Posted by Prioris (Fl) on 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.
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Posted by Kristine (Chicago, Illinois) on 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
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Posted by Prioris (Fl) on 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.
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Posted by Nanowriter (Hotspot, Texas) on 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.
Multiple Remedies
Posted by Kristine (Chicago, Illinois) on 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
Burning Mouth Syndrome Triggers
Posted by Maureen (Montreal, Quebec, Canada) on 02/16/2014
Hi,
I have burning mouth syndrome from time to time (I do right now) and I find that stress is a contributor but not a cause, but when I am not eating well (too much carbs or sugar) and am stressed as well, I have to cut coffee or my mouth will start to burn. Coffee seems to be the thing that is the ultimate trigger and I like my coffee STRONG!
I, like many of you, have digestive issues, allergies including one to nickel, food intolerances and even a sorbitol intolerance. Food intolerances often cause acidity as a reaction so I am not surprised that food intolerances or allergies may cause or contribute to BMS. Also, stress causes acidity as does sugars and refined carbs. I think the main culprit here is acidity in the mouth, whatever the cause.
Good luck to all!
Vitamin B12, ALA
Posted by Becca (Abilene, Tx) on 01/28/2014
1200 mg of alpha lipoic acid added to that will also make a tremendous difference.
Burning Mouth Syndrome Triggers
Posted by Jacque (Seattle, Wa) on 01/19/2014
I had BMS for about five years with no help from my doctors (they seem to think you are crazy when you mention BMS). Recently I have been diagnosed with celiac disease and am following a strict wheat-free diet and after a few weeks my BMS has completely disappeared. I am convinced that the gluten in wheat is the culprit here.
Multiple Remedies
Posted by Kay (Bala Cynwyd, Pa) on 11/22/2013
To Judy from Australia- did you BMS stop? Your story sounds like mine.
