burning mouth syndrome 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

@destinnana

Just curious as to if anyone thinks stress triggers more pain? At times I can feel my mouth and throat “fireing up” more than others. It never goes away but at times seems more severe when stress is going on.

Jump to this post

@destinnana -stress definitely affects my BMS. I take more amitriptyline in these cases

@mygrigio -try reputable neurologist in your area. Seems that many like me start with low dose amitriptyline and work up to good dosage for you.

Liked by lauren123

@jshdma

@lynschupbach For BMS I have been through a series of drug suggestions, none worked. By now BMS has affected my entire mouth (thickened tongue, lips) as well as continuous burning sensation in various spots. These conditions have also affected my speech; I now have a lisp, for example. I have changed my diet drastically, including elimination of most of my favorite foods. Someone told me that it was caused by eating too many peppers (not hot, just sweet red peppers). It seems that this condition is very common, but most docs have never heard of it. Very discouraging to think this is IT for the rest of my life.

Jump to this post

@jshdma – I have been dealing with this for several years and was first told it was reflux but I don’t buy into this theory in my case. What did help was amitriptyline starting with 10 mg and gradually increasing (Max 50 mg). It takes a little while for this to start working – I guess it needs to build up in your body to start calming the overactive nerves that are causing it. I’m pretty sure mine started with dental work that affected some of the nerves as TMJ on my affected side began around the same time also.
I also began using Hello toothpaste (the one With activated charcoal).
In addition I have been using several essential oil‘s( frankincense, myrrh, copaiba, eucalyptus) on my jaw, throat and bottoms of my feet several times today, especially at bedtime . I also Occasionally take CBD oil internally as well as mixed with the other essential oil’s when it is particularly bad burning…..the CBD addition is new so am still experimenting with dosage and frequency. My BMS is not gone but very manageable with all this.
I know it is very frustrating so I hope you find some answers from my journey.

Liked by lauren123

@jshdma

@destinnana The med community seems to say that BMS is common in older women who are depressed, anxious, etc. I notice that it can be better or worse (mostly worse), but no known triggers. Except the long list of all the "wrong" foods.

Jump to this post

@jshdma, when I was told that it is common among older women who are depressed, anxious, etc I them (mostly males) that if they had my condition they would be depressed and anxious. Stress is mostly likely a factor but it is also a consequence. The PDR makes that comment, There are plenty of triggers, and everyone is different.

@mamajomclane

@jshdma – I have been dealing with this for several years and was first told it was reflux but I don’t buy into this theory in my case. What did help was amitriptyline starting with 10 mg and gradually increasing (Max 50 mg). It takes a little while for this to start working – I guess it needs to build up in your body to start calming the overactive nerves that are causing it. I’m pretty sure mine started with dental work that affected some of the nerves as TMJ on my affected side began around the same time also.
I also began using Hello toothpaste (the one With activated charcoal).
In addition I have been using several essential oil‘s( frankincense, myrrh, copaiba, eucalyptus) on my jaw, throat and bottoms of my feet several times today, especially at bedtime . I also Occasionally take CBD oil internally as well as mixed with the other essential oil’s when it is particularly bad burning…..the CBD addition is new so am still experimenting with dosage and frequency. My BMS is not gone but very manageable with all this.
I know it is very frustrating so I hope you find some answers from my journey.

Jump to this post

@mamajomclane, your experience is very similar to mine. I am certain it resulted from dental work, I now have TMJ. My doctor is going to prescribe a topic paste with amitriptyline in it. I'll let you know how it works.

@mamajomclane

@jshdma – I have been dealing with this for several years and was first told it was reflux but I don’t buy into this theory in my case. What did help was amitriptyline starting with 10 mg and gradually increasing (Max 50 mg). It takes a little while for this to start working – I guess it needs to build up in your body to start calming the overactive nerves that are causing it. I’m pretty sure mine started with dental work that affected some of the nerves as TMJ on my affected side began around the same time also.
I also began using Hello toothpaste (the one With activated charcoal).
In addition I have been using several essential oil‘s( frankincense, myrrh, copaiba, eucalyptus) on my jaw, throat and bottoms of my feet several times today, especially at bedtime . I also Occasionally take CBD oil internally as well as mixed with the other essential oil’s when it is particularly bad burning…..the CBD addition is new so am still experimenting with dosage and frequency. My BMS is not gone but very manageable with all this.
I know it is very frustrating so I hope you find some answers from my journey.

Jump to this post

Thanks for the info. I prefer to take a more natural route than taking meds that have so many side effects. This is a healing journey and I believe we can find answers to what works best for us. My doc at Mayo just put me on Clonazepam three times a day after meals but I am using it at night only at this point. I started using Hello toothpaste and also use essential oils but have never tried putting them on my jaws or throat. I’ll surely try this! Also, I use CBD oil night and I definitely think this helps with rest. I am 61 so I guess that put me in the “old” category but I believe one day I will find what works to extradite this pain and feel normal. And I definitely know stress makes it flair but I wouldn’t consider myself a depressed individual.

@lauren123

@mamajomclane, your experience is very similar to mine. I am certain it resulted from dental work, I now have TMJ. My doctor is going to prescribe a topic paste with amitriptyline in it. I'll let you know how it works.

Jump to this post

@mamajomclane Yes, dental work is known to be involved in causing BMS. Articles about this problem always say it is multifactorial. That makes it hard to fix. When you get the name of the topical toothpaste with amitriptyline, please share it. No docs that I have consulted have any useful answer.

@mamajomclane

@jshdma – I have been dealing with this for several years and was first told it was reflux but I don’t buy into this theory in my case. What did help was amitriptyline starting with 10 mg and gradually increasing (Max 50 mg). It takes a little while for this to start working – I guess it needs to build up in your body to start calming the overactive nerves that are causing it. I’m pretty sure mine started with dental work that affected some of the nerves as TMJ on my affected side began around the same time also.
I also began using Hello toothpaste (the one With activated charcoal).
In addition I have been using several essential oil‘s( frankincense, myrrh, copaiba, eucalyptus) on my jaw, throat and bottoms of my feet several times today, especially at bedtime . I also Occasionally take CBD oil internally as well as mixed with the other essential oil’s when it is particularly bad burning…..the CBD addition is new so am still experimenting with dosage and frequency. My BMS is not gone but very manageable with all this.
I know it is very frustrating so I hope you find some answers from my journey.

Jump to this post

@mamajomclane Thanks for info. With me BMS definitely has nothing to do with acid reflux, which I have never experienced in my life. BMS seems to have many possible causes, probably several together, but no cure. Dental work is probably one likely contributor. Docs don't know what to do with it.

I have had this for several years, if I keep at it like I should it doesnt get too bad. What I do now is wash my mouth out several times a day with dry mouth wash and it helps , I have not been able to get rid of it just control it.

@suzy37

I have had this for several years, if I keep at it like I should it doesnt get too bad. What I do now is wash my mouth out several times a day with dry mouth wash and it helps , I have not been able to get rid of it just control it.

Jump to this post

@suzy37What is dry mouthwash? never heard of it,will you explain so I can get some. Does it taste bad

@lioness

@suzy37What is dry mouthwash? never heard of it,will you explain so I can get some. Does it taste bad

Jump to this post

It is a common over the counter mouth rinse, mine is called Dry Mouth oral rinse, this is from Dollar General but can be found in most stores Walmart included

@suzy37

It is a common over the counter mouth rinse, mine is called Dry Mouth oral rinse, this is from Dollar General but can be found in most stores Walmart included

Jump to this post

no, it doesnt taste bad, you just rinse your mouth and hold it for a few minutes abd spit it out, do this several times a day, hope it helps !

@suzy37

no, it doesnt taste bad, you just rinse your mouth and hold it for a few minutes abd spit it out, do this several times a day, hope it helps !

Jump to this post

@suzy37 Thanks We dont have a Doller General out here but I,ll check at Walmart.

@sheetrock0131

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..

Jump to this post

@sheetrock0131 Hello,
I have had bms for 7 years and have been to about 20 different doctors and tried all the meds mentioned in your group discussions to no avail.
Have heard recently about using laser therapy. Read an article by a woman who used the MLS Laser for her bms and had some improvement. You mentioned you were considering trying laser and I was wondering if you have tried it? Life goes on but it’s hard.

Liked by lauren123

@meadowhouse

@sheetrock0131 Hello,
I have had bms for 7 years and have been to about 20 different doctors and tried all the meds mentioned in your group discussions to no avail.
Have heard recently about using laser therapy. Read an article by a woman who used the MLS Laser for her bms and had some improvement. You mentioned you were considering trying laser and I was wondering if you have tried it? Life goes on but it’s hard.

Jump to this post

Yes, tell us more about laser

Please login or register to post a reply.