NeuroTalk Support Groups - Burning Mouth Syndrome Recovery Stories

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- - Burning Mouth Syndrome Recovery Stories (https://www.neurotalk.org/peripheral-neuropathy/104641-burning-mouth-syndrome-recovery-stories.html)

Quote:

Originally Posted by Angelonely (Post 582217)

Hello Dale, This is my 1st time here. I can empathize with you and anyone who has BMS. I have been suffering with BMS for 2 full yrs next mth! Within that time mine has gotten worse too! Since Dec 2007 my whole life has changed! I don't know what started the BMS?! At first my doctor didn't even know about it. I have been taking a 150mg Lyrica cap once/dy for some time. It is not enough but I don't like the effects that these drugs have on me! Plus they are very, very expensive. I am unable to work, I have few friends, and no family anywhere near me. I am all alone! The burning pain over my tongue is unbearable and it rarely stops! My gums are also affected and my lips burn too...red raw! This is a hell all of it's own. I wish I could be more positive for you. But you see, I am seeking answers too. I am so sorry that you've had it for 3-4 years. Help! Oh and I do know that Gabapentin is a bit cheaper than Lyrica and these 2 drugs are cousins. I chew 'Gum' 24/7 as it does something to help the burning. I also drink luke warm Peppermint Tea. For some reason I find it soothing. I'll be in touch when I can. Thank-you, Angel :hug:

Dear Angel:

Thank you for responding. No one else has.

Angel is the name of one of our cats.

I am sorry that you are alone with this.

I also get a strange feeling in my cheek when it is full blown. When my cheek is affected I take a Darvocet, which decreases the feeling in the cheek. I thought that it could possibly be because I had my teeth pulled about 3-4 years ago and got dentures. Unfortunately, my lips even burn when I don't have my dentures in. The burning is mostly on the left side to the middle of my lips and sometimes my tongue burns also on the left side. The BMS has gotten worse. About two hours after I get up the burning starts. Right now it is burning on the top lips mostly and my gums also. I don't have my dentures in because I am having them relined. Sometimes it makes me feel sick. Now it is the burning is in my upper and lower lips and the cheek thing has started and my Husband wants me to take a Darvocet, so I will.

I am waiting to hear from my medical provider with another medication, but thanks to you, I will not take the Lyrica. I will let you know what I am prescribed and if it helps.

And yes, my life has changed also.

We are supposed to have company for Thanksgiving, old friends that will stay for 4 days, they live in CA, but I don't want them to come, because I am just not comfortable.

This seems to be a Neuropathy condition.

I fortunately have the support of my Husband and if it wasn't for my faith I would have gone a little crazy, not that I am not already. ;)It is good to pray and prayer helps. :smileypray:

We live in Northwestern Arizona. What part of the country do you live in.

I hope you have a good day and get some relief.

Dale:hug:

Quote:

Originally Posted by jannaw (Post 575163)

Hi,
I've had "burning mouth" since the onset of my PN almost six years ago. I just had a bout of it last week with my worst flare up in a couple of years. No one seems to know how to make it better, would love a lidocane mouth rinse myself. I burn in tandem with a flare up in my feet, the best pain reliever for my feet is cold water so I held cold water in my mouth too. Didn't completely take the pain away, but it helps for a bit. It hurts more after eating so I brush my teeth right away. Good luck with this, it really hurts and its hard to distract yourself from mouth pain.

Dear Jannaw:

I got the mouth from a dentist. The combination is Maalox, Lidocaine and Diphendryl, but I don't know how much of each.

Good luck,

Dale

Burning Mouth Syndrome Recovery

Hi,
I started getting symptoms of Burning Mouth Syndrome about six years ago. It was on and off for about two years and the condition continued to get worse and more frequent. I had gone to several doctors and ent's but they all thought I was dillusional. I finally found a doctor, totally by accident- my family doctor was away and I couldn't get an appointment with him so they placed me with another doctor in his clinic, and she was currently treating another patient with the same symptoms. She ran blood tests and there were no abnormalities there. I was handed over to a neurologist and from there I was prescribed desipramine to control the pain. The neurologist told me there was no cure and that I'd have to stay on some medication for the rest of my life. My quality of life has improved so much since was placed on this over two years ago. I only get occasional flare ups a few times a year and they go away over a couple of days. Desipramine has been the most effective treatment to control my BMS.

Quote:

Originally Posted by dbrow (Post 573895)

Has anyone on the forum recovered from burning mouth syndrome? Would love to know what your symtpoms were, time it took to recover and what you attributed the recovery to. Also, what do you think the cause was. In my case, the doctors are scratching their heads.

Grateful for any realistic hope. Have had BMS since June of 2009.

Hi this is the AHA moment of the year. For the past year and a half I have been suffering with dry mouth and burning tongue/lips. It might not sound that bad but it takes over your consciousness 24/7. It made it hard to talk, swallow and concentrate. Of course my doctors didnt have a clue.
Since I am already Salicylate Intolerant I have been eating as many foods as I can that are low in salicylates, including celery, peas,sunflower seed butter, walnuts, peeled pears, peeled applesauce, chocolate hazelnut spread (nutella) and bananas.
I had heard somewhere that apples are related to birch. I was told that I am allergic to birch trees years ago. When I bought a bag of hazelnuts last week I just decided to google HAZELNUTS AND BIRCH ALLERGY. Bingo !!!!!!!!!!!!

There is something called OAS (Oral Allergy Syndrome). It can give you itchy or burning or swollen tongue/lips or throat.
If you are allergic to Tree Pollen or Ragweed or several other things listed, the following foods can cause a reaction.

I wanted to share this with you in case it could help even one other person. After avoiding the foods I listed my dry mouth and burning tongue/lips have finally subsided. I showed the whole article to my ENT Dr. and he asked for a copy of it.
"Heres $100 bucks, glad I could help" lol

Pollen Potential Cross-reactive Foods

1) Ragweed - Bananas, melons (watermelon, cantaloupe, honeydew) zucchini, cucumber, dandelions, chamomile tea

2) Birch- Apples, pears, peaches, apricots, cherries, plums, nectarines, prunes, kiwi, carrots, celery, potatoes, peppers, fennel, parsley, coriander, parsnips, hazelnuts, almonds, walnuts

3) Grass, Peaches, celery, melons, tomatoes, oranges

4) Mugwort - Celery, apple, kiwi, peanut, fennel, carrots, parsley, coriander, sunflower, peppers

5) Alder - Celery, pears, apples, almonds, cherries, hazelnuts, peaches, parsley

6) Latex - Bananas, avocado, kiwi, chestnut, papaya

I cant tell you how happy and relieved I am. I will be still be eating papaya and bananas periodically and see how it goes.

Before this I tried everything. I suspected everything. I tried eliminating everything. But finally this worked. See the rest of my food allergies at
**edit** Good luck

Burning mouth syndrome , my cure

After a nearly 3 year battle of mouth pain, I am finally back to normal.

First and formost let me plead to anyone, do not use the internet to find a cure for your health problems. I did this and it almost killed me. Keep in mind that no one on internet posts like this have any medical background and most people enter posts when they are in panic mode, they almost never go back and post that they are ok!

After being diagnosed with everything from burning mouth syndrome, to MS. to Trigeminal Neuralgia and ending up in a psych ward because of Lyrica suicidal side effects I have finally got to the bottom of all this.

I have been to 7 different dentists and none have a clue. So here it is:

Many of the dentists said burning mouth syndrome is not real, not to say the symptoms aren't real, just saying that your mouth doesn't burn just because their is some fantom mysterious Illness out there.... there is a reason for it.

And 9 times out of ten it is related to your teeth. Teeth or sinuses. In my case, it was my sister who finally figured it out. She is a nurse practitioner and she was convinced it had to do with me clenching my teeth at night. So she tried to do a little test. First she injected Botox into my masseter jaw muscles then she had me take muscle relaxers 3 times a day for 3 days. Bam, almost no pain, first time in a year.

Next, I have been fitted for a TNI mouth guard that just fits on the front incisors. This eliminated the teeth from clenching at night. Since then I am pain free!!!! CURED

The clenching was actually forcing my upper teeth directly into my trigeminal nerve causing irritation and referred pain and burning sensation.

One last note: If your are taking an anti-depressant then clenching is a side effect. see: BRUXISM, they are also finding it to be a major cause of migraine headaches and Botox is becoming a popular treatment.

...hello angel and all. i had bms appx 3 yrs ago, but didn't recognize it for some time. when it finally made me ultra uncomfortable, i resorted to trying benzocaine, the stuff that is used for toothaches. i also cut back on all acids (wine, LOL) and it went away after a month or so. has NOT been back.
however, one year ago i developed pn, it is not unbearable, and i won't do drugs. i wonder how benzocaine would work on my feet and fingers?

side note, about 30 years ago i had a severe bout of ciguaterra. is this all related? yep, i would guess so. but if this is the worst life can throw at me, i count myself lucky, at age 68 and trying to keep active.

For me it started suddenly six months after my dentist recommended switching to Sensodyne, which does contain SLS (Sodium Lauryl Sulphate). Switching back to my long-time favorite herbal toothpaste (no SLS) solved the problem within a few days.

Of course I can't be sure if it was SLS or another ingredient in Sensodyne, but I am definitely not going to try another toothpaste for a while now!

Welcome emme. :Wave-Hello:

Welcome nosls13aa. :Wave-Hello:

When I was using Sensodyne toothpaste a few years ago now my lips were tingling. So I looked up the ingredients in that toothpaste and it has a numbing agent. It wasn't the SLS. I can't remember the ingredient that is the numbing agent. So no wonder I started to have that problem. I quit using it and went back to using plain old Crest and I'm fine now. Just what happened to me. And as you know, Sensodyne toothpaste is expensive.

Burning Mouth short term Relief

I know you may find this disgusting but it worked for me.
I dip a spoon in this balm and stir the spoon in a small glass of water, and rinse. It numbs your mouth and it works on any kind of mouth, tongue or lip sores,

because I am new I cant post a link.

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