Burning Tongue & Mouth Syndrome

[Guest guest]

Hello All...

Yes, I am a few days late in commenting on this topic but I feel maybe my

information may be of some help to some of you Fibro mites out there.....

Last year, finally, I went for a 2nd opinion of an ENT Specialist, as I was

fed up with being told I was imagining things. This new ENT diagnosed my

sore/swollen tongue and mouth that felt like it was " ON FIRE " just drinking a

soda,

as " Burning Tongue & Mouth Syndrome " ...

My reasons for posting is to tell you ALL that you are not 'crazy', like most

Doctors make you fell and you are NOT 'alone.'

At first, my tongue only swelled and hurt when I had adverse reactions to

several Antibiotics that I am now Allergic to.

During my whole life, at one time or another, I have gotten those little

" REALLY SORE & HURTFUL " bumps on the tip of my tongue and cracks on the sides of

my mouth which I was told was a Vitamin deficiency......

BUT NOW.....It is a whole different " Ball Game " ....

Following is what I told my ENT and he confirmed my condition:

My tongue swells and gets deep cracks

Bumps Tiny to Large and very painful

Cannot drink: soda, alcohol, anything

VERY cold or hot

Drink with a straw ONLY

NOTHING Spicy Hot like Pepper or Tabasco

Nothing with a lot of SALT

NO Salad Dressings, Pickles, Vinegar

Sometimes even Apple Pie (Cinnamon) hurts!!!

NOW.....My Doc recommends the following Vitamin Supplements and Prescription

Medications with no guarantees but they have helped other patients:

Ultra B-150 Complex 1 AM

B12 500mcg 2 AM

A 12,000IU 1 AM

Zinc 50mg 1 AM

Alpha Lipoic Acid 100mg 1 AM

Take ALL of these Vitamin Supplements with FOOD and of course, take them

religiously or you will NOT receive any relieve.....

YES, I have been taking the Vitamin supplements and feel some relief....but

then there are days that I DO NOT....

The prescription medications are:

Klonopin (Generic is Clonazepam)

Elavil (Generic is Amitriptyline)

Both of these are supposed to have effect on the nerves in the mouth besides

any other reasons for taking them.

Because I am on other Psych Medications similar.....I can not take the above.

Well....if anyone wishes to write back to me....you are welcome to....maybe I

can be of more help....OR.....maybe someone may have more advice for

ME....LOL.....

Take care everyone....and

May tomorrow be a BETTER DAY FOR ALL !!!

[Guest guest]

Wow, after I posted this E-Mail I forgot almost the most important problems

of all.....

Besides what I cannot eat...I CANNOT use ANY regular toothpaste or mouthwash

on the market....

I might as well pour gasoline in my mouth and light it with a match....that

is what is feels like when I do !!!!!

After experimenting with many types of toothpaste and mouth rinses...I

finally found " THE ONES " ....

For those of you that may be in the same boat as me, here is what I can

tolerate:

- " auromere " - Herbal Toothpaste (it is spelled just

like

it looks)

It includes the 'Toothbrush Trees' Neem & Peelu

(Note-this does have Cinnamon in it.)

- " Tom's " - natural care of Maine (apricot flavor)

Toothpaste

- " Healthy GUMS Daily Oral Rinse " - The Natural

Orange Zest Dentist

Protects & Smoothes Gums & Mouth

NO ALCOHOL

NOTE: None of these have Menthol, Spearmint,

Wintergreen or Icy Cool flavors which ALSO

can burn your mouth besides ALCOHOL!!!!

Now - I believe I have covered all the information......

Sorry Folks....I have been diagnosed with " Dementia " too, besides

Fibromyalgia, with Post Traumatic Stress Syndrome and the list continues......so

I tend

to forget things.....

Good Night to All.....

Have a Good Day tomorrow.....