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mygrigio
@mygrigio

Posts: 1
Joined: Aug 05, 2011

burning mouth syndrome very severe

Posted by @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

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.

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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

Liked by lauren123

@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.

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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.

@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.

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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.

@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.

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Lisa.. where did our wonderful world go?

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.

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?

@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.

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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?

@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.

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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.

@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.

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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.

@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.

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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?

Liked by lauren123

@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.

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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?

@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…

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@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.

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.

@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.

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

Liked by lauren123

@lauren123

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

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Yes I take amitriptyline also and L-Lysine

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