burning tongue - any reccomendations?

[HawThorne]

Hi all, newby here, and so, so glad I stumbled across this forum! Was diagnosed only last week, but due to tumor size, plus the way it's positioned, I have already been scheduled for surgery next month. Everything feels a bit surreal at the moment - so many practicalities to sort out because I have 2 small kids - so I haven't really had time to process, tbh. Everything started out with diffuse hearing problems in one ear last year that came and went, but hearing has gotten pretty bad since the summer. Now I can't feel part of my lip sometimes, my face feels a bit numb occasionally, and my tongue somehow always feels like it's on fire, plus my balance is affected. I was just wondering if anyone on here has some recommendations for home remedies that will make my tongue calm down while I wait? Anything that you have found has given you a bit of relief? This symptom, in particular makes it hard to concentrate on anything else.

[donjehle]

Hi HawThorne, and welcome to the Forums!

Burning tongue is not one of the typical symptoms of acoustic neuromas.  However, it was the very first symptom I had.  My tongue would burn if I was drinking cold water or eating any kind of food, cold or warm.  It was the symptom that made me seek out my physcian who ordered an MRI, and that's when we discovered I had an acoustic neuroma.  Other symptoms like tinnitus, loss of balance, and loss of hearing came after my burning tongue.

Unfortunately, I cannot tell you anything that caused my burning tongue to subside other than time.  I tried a number of medicines and natural treatments, but none of them reduced the symptom of my burning tongue.  Some doctors thought I was crazy because they said that a burning tongue is not a true symptom of acoustic neuromas.  It was not until I joined this forum that I found out I was not alone in experiencing a burning tongue in connection with an acoustic neuroma.

What I have learned is that everyone's acoustic neuroma journey is different, and we do not all experience all the same symptoms.  But I am convinced that having a burning tongue is a legitimate symptom for a few of us.  I lost about 25 pounds because I did not want to eat or drink anything as food or drink made my tongue burn worse.  But, in time, it went away, and I cannot connect its disappearance with any vitamin, pill, or anything else specific I tried.  I am truly sorry that I can't provide any more help for you -- because, for me, it was awful to experience.

Please let me know if you find something that works!
Don

[jaynereiter]

ME TOO.
My lips and tongue became numb and swollen, not burning. Not knowing why and thought it might be the dental work I had done I changed mouthwash, toothpaste.  ENT said it happens rarely, oh yaw, it's happening.
My Translab surgery is in a week in the meantime I use Biotene products; toothpaste and mouth wash, sensation is much less.
So curious what the cause is and no answer as to how to truly remedy it.
JR

[donjehle]

Please let us know how it goes for you, JR.

Best wishes!
Don

[mwatto]

I was reading on this today as very common in my long Covid forum. It seems that deficiency in the B complex can cause this.

[UkulelesAreAwesome]

I experienced the burning mouth symptoms also. After gamma knife my mouth feels sensitive but not burning. I found it was helpful to switch to children's toothpaste that are fruit flavored. I avoid the strong mint adult toothpaste and mint mouthwash. The minty stuff aggravated any burning or sensitivity for me.