Burning Mouth Syndrome
 

I wonder if any of the members can report improvement or resolution in burning mouth syndrome, and, of so, how long did it take? I'm not talking about taking meds to address the symptoms. I'm really interested in knowing if the nerves ever healed.

My neuro says my burning tongue (also lips, hard palate) is due to small fiber neuorpathy -- damage to cranial nerves. I also have confirmed small fiber neuorpathy in my feet and hands. I've had the condition since April 2009.

My neuro sees about one case of burning mouth a year (she works in a large city clinic with lots of patients) and says that in a "couple of years" it usually goes away. I've also seen research stating that spontaneous, but partial, recovery happens six to seven years after onset in about two-thirds of the cases. :(

When my neuropathy first started last November of 08, I had attacks of burning lips along with my neuropathy. It would come and go, but I haven't felt it in quite awhile now. It was confusing to me because along with my neuropathy, I was experiencing intense menopausal symptoms. Burning mouth (lips, tongue, etc) is also a menopausal symptom, so I didn't know which one it was. I'm just glad it's died down for now..

Thanks Hope15,

I'm a 50-year old male, so the hormonal changes aren't likely the etiology of my problem, although the Journal of Oralfacial Pain in its June or July issue carried a story about buring mouth, in which the authors posited that extended periods of stress, regardless of sex, can lead a biochemical chain reaction that leads to trigeminal nerve damage. In any event, what's more likely in my case is either impaired glucose tolerance or alcohol consumption. for the last 3 years I had two and sometimes three glasses a wine a day. Since mid-June I've had none at all.

By the way, my small fiber neuropathy was confirmed by a relatively new skin biopsy invented by a lab called Therapath in N.Y. It measures epidermal nerve fiber density at the calf and thigh. My value was low normal. My podiatrist said I have a shot of restoring the density of nerve fibers by taking l-methyl folate, B6, B12 (by way of prescription compound called Metanx) and I'm also taking 1,500 mg/day of Acetyl L Carnitine, which research backs up as helping pain and nerve regeneration. Crossing my fingers, still hoping to hear from anyone in the forum who's had a true recovery from burning mouth.

I say go with the Metanx. And also investigate low Vit D status as well.

The most common cause of burning mouth, is B12 and other B deficiencies.

Also reactions to certain foods, like gluten, seafood, even high fructose corn syrup may be a culprit.

Some people get burning mouth symptoms from Triclosan, which is in Colgate Total, and some other fancy toothpastes. Check yours, and if Triclosan is in the ingredients, get another.

Low zinc status also impacts the mucous membranes in the mouth.

Try B complex and see if that helps, it does with me. For me it is always a quick fix.

hth
raglet

Hi dBrow - BMS - progress to date, some way to go!
 

:)
I am not a medically trained person, so please take the info below as a personal story and nothing else. I'm a male, almost identical age to yourself and developed BMS about 3 months ago after very stressful life event. Not pleasant, as you are well aware. I have (like many others) researched extensively. Over the past 3 months, I've moved forward quite positively ( a fair way to go still !). At the start, my whole mouth burnt - hard palate & soft palate, right across throat. Now things have settled down a bit and main pain is across (some of) hard palate, partic either side above maxillary teeth. I (had) have the form that ramps up during the day, although over the past 2 weeks or so, it has been more constant (although lessened intensity) through the day. Reading the more recent papers about BMS primarily being related to nerve ending damage, I have developed the following approach:

1. Address my underlying high stress events - regular massages, more exercise, meditation, a couple of sessions with a psychologist and sorting out personal issues. For me, I think this is a crucial part of the issue.
2. Early on, the burning sensation was very intense, although I read an article from Uni of Ohio (I think) about some of their patients gaining relief by regularly applying (initially quite diluted chilli paste for 40 secs as a mouthwash & spitting out, see below, I can't paste a link as I'm a new poster ). There is method to the madness and I gained no benefit from this for about 10 days, but kept doing it 3 X per day. I now credit this with considerably reducing the burning sensation to a more acceptable (still a bit uncomfortable) level. Am now going to change this to brushing affected part of hard palate with a much more dilute chilli suce with fish oil - applied by artist paint brush, so that the rest of mouth is not subjected to the chilli and to see if any benefit from direct contact of fish oil to affected mouth tissue.

**


3. Have been placed on (short term) Diazepam to assist in reducing anxiety (as per above).
4. Stopped alcohol consumption entirely.
5. Alpha lipoic acid - daily 3X200 mg Aiming to continue for at least another 6 weeks, then maybe drop to 200 mg for another month.
6. Acetyl Carnitine at a level around 3 g per day, after reading some studies about regeneration of nerves in rats supplemented with A-L-Carnitine and some studies in AIDS patients with peripheral neuropathies.
7. Co-enzyme Q 150 mg per day (I gather this is really poorly absorbed from gut, so maybe useless?)
8. Most recent edition has been to take anti-inflammatory doses of Omega 3 fatty acids - fish oils, after researching their well documented anti inflammatory, worth reading about "resolvins" in fish oils - try Google.
8. Taking usual range of B Vitamin supplements & trialling a variety of additions - an iron / B Vit tonic & phytonutrients.


Summary of progress: I'd suggest 3 months ago I had a VAS score of perhaps 7/10 with widespread BMS across hard palate, soft palate & throat. After all of the above, I'd now rate (over say the past 10 days) a VAS score of around 3/10, contraction of area affected to perhaps 1/2 hard palate only, with some generalised (modest) pain through maxillary teeth (similar to kids having braces tightened on teeth). Still a long way to go, but certainly making progress. Hope this helps some others battling this very unpleasant condition.

Let me know any progress you or other readers have had on managing this very unpleasant condition.


This site (below) appears to be the most comprehensive site re BMS that I have come across.

**

Hope this helps - Numbat

My BMS symptoms started about 2 years ago along with other small fiber neuropathy symptoms that intensified about a year later. After some internet research I started alpha lipoic acid at 600 mg per day. My BMS symptoms are much improved, but I also started Lyrica at 300 mg per day about a year ago. I do think that the lipoic acid helped and when I consulted an oral medicine specialist about another issue she confirmed that it does help with BMS for many patients.

any tricks for bms to releave pain.....gum is great but what about for outer lips? has anyone tried lyrica?? thanks...so much.....any advice would help new to this!!

Hi,

Can't say that I've had complete resolution because now it just seems to very mildly rev up because of something I ate.

But yes, have had significant improvement of mouth burning on no medication. It took about five or so months, and I've been taking supplements since later summer.

Unfortunately, certain brands of chocolate can be irritating.

Hope your burning mouth resolves soon.

Sheltiemom

I would try Abreva lip balm. It contains Omega-3 fatty acids and accelerates healing.

If that works for you, consider your diet is low in essential Omega-3's and start supplementing.

http://neurotalk.psychcentral.com/showthread.php?t=6092

Thanks You...I am going to start all of that now!!!....thank you , any other tricks please tell me ....what supplements should i be taking, my blood work and mri all came back normal!! I will start the omega 3, how much do i take? and what other supplement beside a 1 a day vitamin should I take...thanks!!!!!!

Let's see what the Abreva does.

With the burning of lips, it can be one of two major things.

1) Herpes under the skin...

2) some food you are allergic to. Shellfish in particular will do that to the lips. But other foods are potential culprits as well.

To strengthen the skin, one needs Omega-3s... flax oil, and fish oil. Zinc, Vit C and Bcomplex. Some people get cracks/fissures at the lip corners, and this may indicate low B status.

Do the Abreva first... to see a clear response. If that fails, then consider oral supplements. I am always here...no rush.

Some other lip balms have GLA in them. You can try those too, after the Abreva. They may call it liposomes, on the label, or some other fancy name.

You rock!! I am getting all those today to see if they help.....my lip painis from bms.....

Abreva is pretty pricey but worth it. It provides essential fatty acids to heal the lips.

Check the website for coupon offers:
http://www.abreva.com/

This is an example of a Chapstick with natural ingredients including lipids:
http://www.chapstick.com/productdeta...dProductId=120

numbat and mrsd.....can u tell me that site you liked alot for bms info and any for support? thanks!!

Severe Chronic Mouth Pain
 

Hello All,

My name is Paul and I live in USA. I am on this forum because I have severe mouth pain in the roof of my mouth, which began around Fall 2010. I think that it is caused by nerve damage/Burning Mouth Syndrome. Also, I had dental work done (cavity filling) around the time the pain began, so perhaps this caused the problem. I have seen a dentist, oral surgeon and neurologist. I have an appointment next week with another dentist too. They are not sure of the cause, and of the best treatment for the problem. I am taking neurontin and amytriptylene, which initially helped to reduce the pain, but after awhile the positive effects of the medication seem to have worn off, and I still have the severe pain. This is definitely life altering, painful, and scary, since I have never had severe chronic pain like this, and it has lasted nearly 2 years without any sign of abating. However, it does come and go a little, but the difference is between severe pain and moderate/minor pain, so it is always there in the background even when it is not agonizing (which it is sometimes). In order to help make this problem go away, I have made a number of lifestyle changes. I quit cigarettes, alcohol, and soda (which I replaced with coffee). I thought this would help, but the severe pain is still here to haunt me. It gets worse if I drink citrus/fruit drinks or eat berries or things like that, which is also a problem because it affects my ability to eat healthy foods. Also, just plain water makes it hurt. One other thing I might mention is that I smoke marijuana, which helps medicate OCD which I also have. I have been trying to cut down, for reasons including the fact that it makes the severe mouth pain on the roof of my mouth much worse after smoking. However, most of the people/health care providers I have talked to seem to think the marijuana is not the cause of my severe mouth pain, and that it is for the most part a separate health issue that I should work on. After consulting many people, it seems more likely that the dental work I had back in Fall 2010 caused the severe chronic mouth pain, since it started around that time, while I have been smoking marijuana since 1998 and never had a problem like this before. I certainly hope that I will not have to deal with this severe chronic mouth pain for life, and that I can arrange for treatment so that I can carry on with my life! Thanks very much, Paul

Severe Chronic Mouth Pain (continued)
 

(Continued) By the way, I forgot to mention that I had a CT scan as well as x-rays of my mouth, and the doctors and dentists were not able to pinpoint any cause for the severe pain on/around the roof of my mouth. I am scheduled to take an occlusal analysis next week to determine if there is a problem with my bite, for instance if my teeth were slightly misaligned after the dental work I had in 2010. Okay, I think I've mentioned most/all of the important information about my painful situation. I hope that this awful condition will be gone before I am! Bets of luck to all.
Paul

You might already know this, but I have heard that alpha lipoic acid can sometimes help with burning mouth syndrome.

Hope things get better soon.

Hi Paul,
 

Welcome to NT.

Thanks to David, I was just going to mention that. It's also been suggested that there may be a link between BMS and diabetes, so that may be something to pursue with your (Paul's) doctor.

In lieu of Alpha Lipoic Acid, you might try 'stabilized' R-Lipoic Acid, which is well known on this forum. 100 mg. of R-Lipoic Acid is considered equivalent to 600 mg. of Alpha Lipoic -- less (and smaller) pills to take, and the stabilized form is reputed to be better absorbed (more of it getting to where it needs to be).

Lipoic Acid Helps Quench the Fire of Burning Mouth Syndrome

Chronic use of 'chronic' can deplete some essential vitamins, which could have an exacerbating effect on BMS. Something else to look into.

Doc

BMS sucks!!!!
 

I started with these symptoms last year and thought I was losing my mind..... I have always eaten hot, spicy foods all of my life but one night my mouth felt like it was on fire, my tongue, upper palate and lips. I immediately went on the internet and found others were having the same symptoms as I. I did read that it is a symptom that occurs in post menopausal women..... I had never heard that before.

The weirdest part is that it comes and goes........ I may have it 24/7 for a week or so and then not have symptoms again for months. I continue to eat hot, spicy foods unless I start having symptoms..... When I'm not symptomatic I can eat anything I want.....it's really a weird sensation.... I usually keep ice cream in the freezer which seems to provide some temp relief...

Burning Mouth Relief
 

I have had Burning Mouth Syndrome for about 2 years. I have been on Gabapentin and Alpha Lipoic Acid with some relief but breakthrough pain every day. I am a nurse practitioner so it has been hard to do my job with my mouth burning by 2 pm. I was at a conference on Neuropsychiatry recently and saw a poster about Using the medicine Pramipexol in Burning Mouth. It is a medicine used in Restless Leg Syndrome. There is some thought that Burning Mouth is caused by the same thing as Restless Leg. They were using this medicine which increases Dopamine in a certain area in the brain. I spoke with my neurologist about it and he was fine with giving it a try. I have now been on it for almost a month. I cannot believe the RELIEF I am getting!!! I am slowly cutting back on the Gabapentin. I am not having any breakthrough pain. If you check on this in PubMed, which is an online library for the National Institute of Health, you will find some other anecdotal reports about Pramipexol being successfully used in Burning Mouth Syndrome. I hope this helps some other folks out there who are suffering with this very difficult condition.

Great news
 

I wonder if this medication could be used for other types of neuropathic pain!!

Glad you ar feeling better!!!!!!

Such encouraging news! :o)
 

This is such good news! I have had burning mouth for 14 months & it is truly shocking! On a pain level of 1 - 10 I would rate mine at 10!
I have, in my life, suffered a bad back injury resulting in three slipped discs & a collapsed vertebra & yet BMS is the worst pain I have ever suffered - I would rather go through all the years of back pain, physio & hospital appointments than suffer this horrendous condition. It has taken over my life - it is all I can think about because it is always there. There is no relief for me, not even through the night - in fact, it is worse first thing in a morning!
It began immediately after I had a bottom molar extracted & yet my dentist & oral restorative dental consultant say it is not connected to the extraction but I KNOW THAT IT IS! I have been referred to an oral surgeon now but I just feel it will be fruitless again.
The only temporary relief I get is from chewing sugar free gum & rinsing my mouth with a very strong salt water solution --------and so it is so lovely to hear of someone actually finding relief & hopefully, a possible cure! I so hope that your improvement & relief will continue. Please keep us posted about your progress, won't you.

Thanks!!
 

That is wonderful news...please keep us updated!

Burning mouth returned
 

I originally had bms back in 2015 thru time it got better and I hardly knew I had it. Then starting in 2021 I was diagnosed with glossopharyngeal neuralgia and had surgery on that nerve ( which they ended up cutting) and putting in a decompression pad to keep the artery away from that nerve. Then about 4 months later (and following my second Covid vaccination) my bms came back with a vengeance. Not only that I now have a taste I get in my mouth that is very sour and is really worse than the burning sensation. No matter what I eat it leaves a sour taste after I finish eating. Food tastes fine when I’m eating but shortly after the sour taste comes on. Brushing and flossing my teeth helps at times but not always. I’ve tried just about Everything I can think of but can’t get the sour taste to go away. Anyone else have this problem?

/
 

The thing that comes to mind that I heard early on with the covid issue is people experiencing so many different issues and smell and taste were a couple issues. I've not had covid or the shots. And no burning mouth experience.

Yes, mine improved after we moved out of our moldy house. Mold can cross the blood brain barrier and damage cranial nerves. Mold damages everything.