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Burning Mouth Syndrome

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Unread 09-27-2009, 11:10 AM   #1
dbrow
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Default 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.
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Unread 09-27-2009, 12:02 PM   #2
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Quote:
Originally Posted by dbrow View Post
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..
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Unread 09-27-2009, 02:11 PM   #3
dbrow
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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.


Quote:
Originally Posted by Hope15 View Post
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..
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Unread 09-27-2009, 03:32 PM   #4
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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.
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Unread 09-27-2009, 06:40 PM   #5
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Try B complex and see if that helps, it does with me. For me it is always a quick fix.

hth
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Unread 02-28-2010, 08:03 PM   #6
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Smile 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
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Unread 03-03-2010, 07:03 AM   #7
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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.
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Unread 01-28-2011, 11:02 AM   #8
kristina1998
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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!!
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Unread 01-28-2011, 11:29 AM   #9
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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
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Unread 01-28-2011, 12:05 PM   #10
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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
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