Burning mouth syndrome (BMS)

I can’t remember where I found it as I have been searching everywhere for relief. I sent my doctor a message in my chart and they suggested after a few weeks I see an ENT. I will see a GI doc in August (earliest I can get in) to ask about an endoscopy.

I have bouts with burning mouth syndrome; I also have Parkinson’s disease and MGUS.

There has been research that suggests Parkinson’s/and or/drugs used to treat it as cause of burning mouth syndrome (last I read inconclusive).

Then I found an article that suggested a B-6 deficiency. I took that to my doctor; he ran labs and my B-6 was 1. Normal range at Mayo Clinic’s lab is 5-50 mcg/L.

My results came back as 1. Doctor started me on B-6 supplements (100mg per day). My level went up to 54 when my doctor had it rechecked in 4 months; and the burning mouth had improved pretty significantly.

He then reduced my dose to (50mg per day). My mouth started burning again; and when my level was checked at 4 months my level was 9.

I thought we were finally on to something. The levels kept going up and down as tweaks in the dose were made.

I’m happy to say that after 2 years of misery I now take 25mg per day; my mouth feels good, and the lab tests are still done every 4 months to make sure that the B-6 level stays within normal range.

Do not go out and start this without your doctors supervision. B6 is essential to our bodies but getting too low or too high is not good.

I’m not sure if this has been covered before, but I will add something that did wonders for me. When I was deep into BMS a couple of years ago, I was about to start acupuncture for a different malady. My wife asked if acupuncture might make the BMS worse, so I researched it and found a medical study that showed that a particular type of acupuncture was actually beneficial. I printed the study, took it to the acupuncturist, and he followed the procedures outlined. My BMS subsided by 80 percent within three months of treatments. There were times when there were no symptoms at all. It returned to a lesser degree about six months later, so I went back and had a few more treatments. It’s been almost a year and I would say that I feel nothing 90 percent of the time and just slightly noticeable the rest. I’m VERY happy I found the research and had the protocol. I can only verify that it worked for me, and it may for you. Best of all, it has not side effects. Here is a link to the study, which I downloaded and took to my acupuncturist.
https://www.nature.com/articles/sj.bdj.2010.582#Abs1
Over time, he added some more points beyond what was called for in the study. I think two in particular added a lot. I don’t know what they are called in acupuncture vernacular, but they were next to the fingernail on the fourth and fifth finger. Those, unlike the others, did hurt, but I think made a lot of difference.

@hlab27 Thank you for this information, especially the link so others can read and take to an acupuncturist. I’m glad that your wife asked the right question and found you a cure!
Do you have any idea where the BMS came from?

No, it just showed up one day. And I wouldn't classify it as a cure, at least not yet. I'd say more like an almost-complete remission. There are still days that it manifests, but not to the degree that it was. I'd say it's much, much better, but not gone. There were only two things that I can think of that could even remotely be tied to it, but even these have no real direct connection. One is having had very hot soup the day before, but I've had that in the past and since with no onset of BMS. The other is having a particular gene trigger which has, since adolescence, manifested in multiple, disparate autoimmune-type symptoms.

Thank you so much for this information, I’m definitely going to check into this.

Sheila

Thank you, mrsbeard. This is very interesting.

reply to iluvkatz I too had this Burning Mouth Syndrome several years ago. My Dentist suggested it could be caused by stress. I told him I do not clinch my teeth (one sign of stress). Apparently your body knows when you are under stress & you are not aware that you are. It would come & go. Extremely uncomfortable condition. Sorry, I cannot offer any further helpful information. I just lived with it . I did however become aware that I was feeling VERY stressed at one point in my life & I got SHINGLES over my left eye in the eyebrow area. Since then I received the Shingles Vaccine. Shingles are very dangerous. Stress is dangerous causing many problems that we don't relate to stress. Pay attention to your body it can & will reveal many things. Like warning signs. My sympathy to you with your BMS. boomarang

I was diagnosed with BMS about 8 years ago by a neurologist that specialized in BMS. I also have Fibromyalgia so it seemed to fit. I tried multiple different meds and magic mouthwash, for temporary relief. Tacrolimus ointment helped my lips the most out of the meds. Recently my GI dr said that it may be orofacial Crohn’s instead, as I was also diagnosed with Crohns Disease at the same time. My Crohns has atypical symptoms, so I didn’t even expect this diagnosis. We forget that the mouth is part of the GI system. So I started the treatment for OC and cut out all Sodium Benzoates (from food and products) and Cinnamon and it has helped a lot. It seems that foods that are higher in natural sodium benzoates and even foods with small amounts of cinnamon flare it up. I’m not really sure if it’s BMS or OC, but the dietary changes made more of a difference for me.

My doctor prescribed B-6 just because the level was low and then my periodontist upped the dose for bone growth and my BMS is in total remission after a few months.