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Burning mouth syndrome - any fellow sufferers

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Posted 4/16/2016 3:19 PM (GMT 0)
Hi
Recently diagnosed with this - came on with chronic necrotising gum disease. Have seen various folks and awaiting referral to oral medicine.

Any other sufferers out there who would like to discuss background, symptoms etc. Maybe we could find a cure together!
Posted 4/17/2016 2:21 AM (GMT 0)
Hello & welcome to Healing Well. I am thinking we currently do not have any members right now with burning mouth issues. This has come up in the past with people coming through pretty much asking the very same thing you are or wanting to know if anyone knows how to get rid of it.

I hope you can come up with some solutions that will help you out. Take care.
Posted 4/27/2016 12:11 PM (GMT 0)
Hi Mo....

I had mentioned burning mouth or more specifically tongue with my doctors for the last two years. No one seems to act on my comments...but I have done some research that maybe you could check into for yourself
1) found that major hormone changes at menopause (or other times) for women has been shown to cause this issue
2) found that whitening toothpastes aggravated the issue - switched to basic toothpaste with no whiteners or mouthwash and it helps
3) I have recently been diagnosed with a type of neuropathy that they think may explain the tongue.
4) dentist suspected that I have intermittent bacterial overgrowth due to my digestive issues and that may cause the mouth issues. I use an oral antibiotic rinse that he prescribed for me and it helps some.

Hope this helps you down your path.
Posted 4/27/2016 6:31 PM (GMT 0)
Thanks for that. What is the oral antibiotic you are using? There is a very good FB group if you subscribe to that.
Yep, I fit all the criteria - was very stressed, anxious, menopausal/
Posted 4/28/2016 5:35 PM (GMT 0)
Mo13...the rinse is called PerioGard (chlorhexidine). It is not too intense but seems enough to keep some of the burn away.
Posted 4/29/2016 9:10 AM (GMT 0)
Thanks and good luck
Posted 4/29/2016 2:14 PM (GMT 0)
I'm another one with this crazy problem. There was another post that said burning mouth syndrome might be related to teeth clenching.
Pretty sure mine is associated with teeth grinding/clenching & TMD. The TMD completely messed up my bite. Now my mouth & tongue feel like it's on fire. I'm getting a new "appliance" today from a dentist who specializes in TMD & sleep apnea. Also fighting my insurance for full treatment coverage though, which can make or break this entire thing. I'm really curious about the mouthwash. I plan to ask the dentist about it today. I'll post results if the appliance works. I'm also pretty desperate for relief. This whole thing has gotten so bad I can't speak clearly which seriously affects my ability to communicate at work. The last thing a customer wants is to talk to someone they can't understand.
Posted 4/29/2016 7:04 PM (GMT 0)
Oh, it;s awful isn;t it. Do post how you get on.
Posted 4/30/2016 3:18 PM (GMT 0)
I don't want to hijack your thread, but yesterday's appointment was a bust. Seems they somehow mixed up my splint with another patient so both of us have to wait until new splints are made & go back next week. I was told to try B12 or a B complex supplement to help with the burning mouth & bad friction abrasions from the bite being so messed up from the TMJD. I do seem to recall that when I was using liquid vitamin B supplements, the burning mouth symptoms weren't as bad (or I just didn't notice them). So I'm wondering if that'll help. Started taking it again yesterday so time will tell. As I'm writing this, my mouth is on fire but not quite as bad as yesterday (ended up with an ice pack on my jaw after it swelled up from a long day of talking to customers at work).
Will most definitely update as this thing progresses because I'm sure you know how miserable this thing can be and I'm really hoping for a miracle.
Posted 4/30/2016 3:56 PM (GMT 0)
Hi there - hijack all you want. It's a nightmare isn't it. No pattern either to how we get it. Good luck with the vits. I am on Gabapentin and Sertraline - am in the UK so not sure how that equates to other parts of the world. Have only been on these meds a week and am waiting for the results of oral swabs for fungal infection and herpes. Keep posting and maybe we can share experiences.
Posted 4/30/2016 5:32 PM (GMT 0)
1 Day, yes we had another member a few years back that they finally figured out it was her clenching her teeth at night. Another person use a rinse for this condition.

Mo13, you can use our search feature above & pull up some older threads on this condition to read. We do ask that you not post on those older threads, more than likely the member is no longer active here at HW & we like to keep them off of the main page.
Posted 5/2/2016 8:24 PM (GMT 0)
Hi, I have had burning mouth syndrome since January. Awful, terrible condition. No pain killers helped me, gabapentin (nerve pain killer) did nothing, rinses and whatnot didn't help.
Ran across a forum and a study that involved Alpha-Lipoic Acid, Zinc and B-12 being possible treatments.

Zinc and B-12 did absolutely nothing for me. I thought it was the same for the Alpha-Lipoic Acid at first- took 600mg everyday before bedtime for a month. Nothing.
I figured it was useless and decided to start taking two before bed to get rid of it faster (I hate wasting supplements). I noticed a week later the pain had changed from burning, sharp pain to a strong pressure and numb pain. I wasn't sure if it was the supplement or not, so I started taking 3 right before bedtime (1800mg). Within a few days my 5/10 pain dropped down to a .5/10. Still wasn't sure if that was the case, so I stopped taking it. It came back with a vengeance. Again, took the three supplements. Took two weeks for it to kick in entirely, but it went back to 0.5.

I'm pretty sure the cause of my pain is the sleep medication I was taking. Ran out of the supplements and have weaned myself off sleep medicine recently for unrelated reasons and my pain has gone from 5 back down to 2 without the supplements. It may take some more time to resolve (I have only been without the sleep medicine a few days) or I might need to take the supplements to lower it. I think I've found my answer as to what helps it and what caused it but it'll be different for everyone.

Hope that you can all figure out what caused yours because no one deserves this terrible condition. I recently got a few medical professionals interested in it and one wants to research it now- so it's possible we'll find more about this condition soon!

I also find avoiding mint and cinnamon helps- chewing fruit gum helps take the pain away for awhile. Over-use of my mouth or jaw makes it hurt more.

Post Edited (chien15) : 5/2/2016 2:32:27 PM (GMT-6)

Posted 5/3/2016 7:57 AM (GMT 0)
Think I migth be trying that. Can you advise the manufacturer and supplier of the supplement. Many thanks. M
Posted 5/5/2016 4:28 AM (GMT 0)
My father-in-law has this issue (burning mouth syndrome). He went to Mayo for it even. I can't recall exactly what they said, but something is telling me they suggested treating it with hot sauce. If you haven't heard about this theory, spend a little time googling it.
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