Burning Mouth Syndrome. I have it very severe.

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

@dawn6604

I’m 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn’t stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can’t even kiss my husband. Any advice would be greatly appreciated.

Jump to this post

Have you researched the medication Gabapention. Works for me I've had BMS for five years
Very dibilitating Trading one lesser evil for another. I'm on very high dosages. But my mouth feels wonderful I have dentures
That's what started me down this horrible nightmare I lost over fifty pounds I was wearing a size 18 when I first got my dentures. Now I'm in a size 6. I'm 5 ft 8in weigh 140lb Again do your research on this medication it's certainly not for everyone Talk to your Doctor or dentist about it. I also use a lot of honey. You can put it in peppermint tea. Sometimes I just pour it on my tongue and lips. It nutrilizes the burning for a few minutes
Hope this helps

REPLY
@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. On gabapentin and Lyrica. Nothing seems to help. Does anyone know a doctors name at Mayo clinic who treats this? Please help. Nanette

Jump to this post

I had taken gabbapentine many years ago.
I've had this condition for many years.I have taken amatriptoline,currently on cymbalta,clonazapan,and a mild dose of oxycodone.
I have been receiving botox shots,which I read had been helping with this horrible condition. It really doesn't help.
My next move is to check out laser.I have been to a hospital in Boston.A oral maxofacial surgeon has been giving me the shots.He recommend laser.I'm going to find a Boston hospital who gives laser.
If you have some time,please Google ,botox for b.m.s.
Also Google, laser for same.
This is a horrible condition.
I've been to most Boston hospitals, and so many meds.it over 18yrs.
I'm mentally drained.
As a psychologist, referred to it as ,the devil in the mouth.
If you need any additional info.please feel free to ask.
I wish you luck with the gabbapentine, but sadly nothing has helped me..
God bless..

REPLY
@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. Most Drs. I’ve seen have never heard of it. I am on gabapentin and Lyrica, they are not working. Does anyone know of a specific Dr. who treats this disorder. I am in pain 24 hrs. per day, it is very SEVERE pain. Need help and a support group. HELP, NANETTE

Jump to this post

Please read my comments.I've been suffering for 18yrs plus
I'm currently receiving botox shots.Going to try laser.please Google ,botox for b.m.s.
and Google laser treatment.
Boston would be the best place to receive the treatment..
Good luck.
Dr's in Boston ,definitely know all about b.m.s.feel free to contact me anytime..

REPLY
@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

Jump to this post

If you are having your teeth pulled because of b.m.s don't do it.
Unless your doing it for some other reason.people think that it's going to stop the burn.It has nothing to do with it.
It's a nerve that comes from the brain.
I've had 18yrs plus with this horrible condition.
Google botox for b.m.s.
Also for laser for b.ms.
Good luck.
Do not pull your teeth out for this condition.
Good luck

REPLY
@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

Jump to this post

Oh, @oregongirl — that is a lot of dental work. Will be thinking of you. Please do check in after you have it done and let us know how it went for you.

That is really too bad about the water in your former town.

REPLY
@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

Jump to this post

Lisa L…I know. I wrote letter to editor regarding not allowing dogs to drink water. Buy bottled. Paper WD not print it. City peoole might have sued the water Dept. Can't have that. What I have is common. I had friends who had all their teeth pulled. For some reason I believe water cannot be filtered.

REPLY
@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

Jump to this post

Lisa.. where did our wonderful world go?

REPLY

It has been so long since I’ve posted here. I have found something that actually helps and it’s not a RX. When you apply this you have to be prepared that it will burn and will burn more than your mouth does now and use it daily and then start decreasing it until you use it once a week. I use Capsaicin. The burn goes away in about 5 to 7 minutes. It will not blister. I put it on the finger then run water over the finger to remove any of the capsaicin I can see. Then where ever your mouth or tongue is burning run your finger over it. I’m now in my eighth week of using it and it has helped my bms by 98%. Just start with a weak solution and build up. You will be amazed. Capsaicin works by disturbing the pain signals from the nerve to the brain. I wish I knew about this 25 yrs ago. It’ll cost you a few dollars and you don’t need to back it up with any other meds. I hope you get the same result I have.

REPLY

Hi, @phyllisrn, good to hear from you, and what good news! Having something that actually helps for your burning mouth syndrome (BMS) is fantastic, and helping your BMS by 98 percent is just "wow."

I'm posting the treatment information Mayo Clinic has on burning mouth syndrome here, https://mayocl.in/2OsDE8b. Notable in this information is that capsaicin is listed in the treatment options (below).

Treatment options may include:

– Saliva replacement products
– Specific oral rinses or lidocaine
– Capsaicin, a pain reliever that comes from chili peppers
– An anticonvulsant medication called clonazepam (Klonopin)
– Certain antidepressants
– Medications that block nerve pain
– Cognitive behavioral therapy

What a difference that must make in your life, @phyllisrn. Have you been able to do things you've not done in some time since you started on the capsaicin?

@chloejulie @pjperrine @celiafachin @destinnana @cajeffery @twentyfour7 @sheetrock0131 – how is your BMS doing?

REPLY
@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

Jump to this post

I went to Mayo Jax 4/17 – they put me on amitriptyline starting with 10 mg and working up every week or so till find relief or get hung over feeling in am. I settled in at 30 mg after feeling groggy/extreme dry mouth at 40 mg. after few weeks my burning mouth/throat was totally gone. Stayed gone for almost a year, now is back. Local doc put me on gabapentin and after building up it did nothing except make my stomach reflux and heartburn so I stopped it and now back trying amitriptyline with only marginal improvement so far. When I tried to get more testing at Mayo, they referred me to UF Gainesville, Fl. burning mouth clinic but they only have 1 doctor that comes there 1 day a month with earliest appointment 5-6 months and Mayo needs to do referral. Since I have not read many good results out of Gainesville, that option seems questionable. Have any of you gone to UF Gainesville within success?

REPLY
@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

Jump to this post

Speaking of toothpaste – I just recently learned of a natural whitening toothpaste that has activated charcoal. The toothpaste is black and minty and claims to have pain relieving properties….for me it helps long enough for me to get to sleep. The brand is HELLO. My neighborhood Walmart has it but not CVS or Walgreens.

REPLY
@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

Jump to this post

I had it for about a week recently..I am 54 and tapering off hormones and wonder if you are right..that menopause, and lack of hormones is partly the cause. I agree it is very painful, and I initially thought I had eaten something too hot, but the painful sites kept moving to different parts of my tongue and oral mucosa.

REPLY
Please sign in or register to post a reply.