1. < Skin Health

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

Interested in more discussions like this? Go to the Skin Health Support Group.

Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 9, 2018

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
mamajomclane | @mamajomclane | Aug 14, 2018
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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
mamajomclane | @mamajomclane | Aug 14, 2018
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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
1 reply
jelgo | @jelgo | Aug 14, 2018
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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
Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 23, 2018
In reply to @twentyfour7 "Hi again, Lauren123, I am so glad to have found this site! You’re right in saying..." + (show)
@twentyfour7

Hi again, Lauren123, I am so glad to have found this site! You’re right in saying it’s a good place to share information for people with this miserable condition. No one else even faintly understands, not even the doctors I’ve consulted for evaluation and treatment. Most of them say they’ve never heard of it! Eventually we get forced down alternate paths in the hopes of finding something that works. My latest failed attempt was CBD oil— an outrageously expensive and useless product.

In answer to your question, yes, my gums burn all day, every day, but mostly on one side. My tongue is the worst, as it involves the entire thing. Occasionally my nostrils and lips get in on the action as well. I do not have sinus problems , or TMJ or any neuralgia that I know of. I was sorry to read of your multiple maladies. For me, the one odd thing that might be a clue is that I have sneezing jags multiple times per week. Once I start I sneeze anywhere from 20 to 45 times in a row. (Allergy testing was negative.)

So for now, I, as I’m sure you do, forge ahead, thankful to get through each night and hoping for distractions during the day. Try the lidocaine when it is at its most unbearable. I pray God will both comfort and heal you.

Jump to this post

Hi, @lauren123 - just wanted to see how things are going with your BMS. What did your doctor say about the lidocaine gel? Are you still using the mild mint you talked about?

@sheetrock0131 - also thinking of you. How are the botox shots working for helping your BMS pain?

REPLY
lauren123 | @lauren123 | Aug 24, 2018
In reply to @twentyfour7 "Hi again, Lauren123, I am so glad to have found this site! You’re right in saying..." + (show)
@twentyfour7

Hi again, Lauren123, I am so glad to have found this site! You’re right in saying it’s a good place to share information for people with this miserable condition. No one else even faintly understands, not even the doctors I’ve consulted for evaluation and treatment. Most of them say they’ve never heard of it! Eventually we get forced down alternate paths in the hopes of finding something that works. My latest failed attempt was CBD oil— an outrageously expensive and useless product.

In answer to your question, yes, my gums burn all day, every day, but mostly on one side. My tongue is the worst, as it involves the entire thing. Occasionally my nostrils and lips get in on the action as well. I do not have sinus problems , or TMJ or any neuralgia that I know of. I was sorry to read of your multiple maladies. For me, the one odd thing that might be a clue is that I have sneezing jags multiple times per week. Once I start I sneeze anywhere from 20 to 45 times in a row. (Allergy testing was negative.)

So for now, I, as I’m sure you do, forge ahead, thankful to get through each night and hoping for distractions during the day. Try the lidocaine when it is at its most unbearable. I pray God will both comfort and heal you.

Jump to this post

Hello Sheetrock, I've been thinking of you too! The botox shots are primarily for migraine symptoms. I have had serious allergy problems this year, and they aggravate my BMS. I went to a dentist who specializes in mouth guards, and he has been adjusting my appliance. It is helping somewhat. Unfortunately, I wear during the day, but it isn't helping much at night. I think I have some anxiety about trying to wear it since if it is misplaced, it causes pain in my gums. How are you doing?

REPLY
puspa | @puspa | Nov 16, 2018
In reply to @sheetrock0131 "I have been on clonazapam for many years,its temporary.Once it wears off my burn is back.I..." + (show)
@sheetrock0131

I have been on clonazapam for many years,its temporary.Once it wears off my burn is back.I also burn in throat,and have pain in ear and right side if my head.To be honest with you,somedays i feel like ending it all...

Jump to this post

@sheetrock0131 exactly the same condition as mine. I feel the burning and all the pain in the right side of my tongue, my right neck, right ear. I see my tongue is getting whiter. I'm afraid, depressed and hope it is only a nightmare to wake up. No one can feel my pain. They only listen to me but nothing comes to their mind of what is it i am talking about. I felt so alone.

REPLY
1 reply
mamajomclane | @mamajomclane | Nov 19, 2018

Yes, this is real. I have it and am being HELPED, not cured, with amitriptyline. You must build up dosage till right for you. I take 10 mg AM, 10 mg early afternoon, and 20 mg before bed.

REPLY
1 reply
lauren123 | @lauren123 | Nov 19, 2018
In reply to @mamajomclane "Yes, this is real. I have it and am being HELPED, not cured, with amitriptyline. You..." + (show)
@mamajomclane

Yes, this is real. I have it and am being HELPED, not cured, with amitriptyline. You must build up dosage till right for you. I take 10 mg AM, 10 mg early afternoon, and 20 mg before bed.

Jump to this post

@mamajomclane, this is very interesting. Do you take other medications with it? I have the same condition.

REPLY
1 reply
mamajomclane | @mamajomclane | Nov 24, 2018
In reply to @lauren123 "@mamajomclane, this is very interesting. Do you take other medications with it? I have the same..." + (show)
@lauren123

@mamajomclane, this is very interesting. Do you take other medications with it? I have the same condition.

Jump to this post

Yes I take amitriptyline also and L-Lysine

REPLY
View MoreView Less
Please sign in or register to post a reply.