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

@mamajomclane

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@mamajomclane
I am currently trying to make an appointment with a chiropractor near me who has the MLS laser. I will let you know how I make out. There is another chiropractor who has a cold laser unit but it is different than the MLS one I had read some positive things about.

Liked by lauren123

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Hi all, I am sorry that so many of us suffer from this. It is maddening. My burning mouth began with an infected tooth that was pulled. I must have nerve damage because more than 5 years later, I feel an irritated burning sensation on that side of my face, tongue, and jaw. After cataract surgery I developed dry eye syndrome. With plugs and drops I manage that, although not well. I tested positive for one of the Sjogrens antibodies, so my docs say I have Sjogrens Syndrome. I have recurring ear pain also. Eyes, ears, and mouth are all so close together and all are lined with mucus membranes. Yet, docs and I still don’t know what causes all this. I am 66 and just thankful arthritis is my big complaint. It could be cancer as so many of my friends suffer with. Staying busy is my best medicine, but it is not a solution. God bless you all.

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I have found that a concoction my pharmacist makes somewhat helps my mouth and throat when the burning is so severe. It’s something I swish for a few minutes and swallow. My doctor prescribed and it’s called Magic Mouthwash. It has lidocaine, nystatin and maalox in it. The doctor told me it was ok to swallow as my throat burns worse than my mouth at times. The lidocaine of course has a deadening effect and makes it quit hurting long enough to get to sleep at night. I am fearful at times that acid reflux is causing the constant burning throat. Also, I truly believe added stress can definitely have an effect on firing things and making it worse. Do you feel same?

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@destinnana As you say, dental work is definitely known to be a cause of BMS. But all medical opinion seems to say that the cause is multifactorial. I think stress does increase the symptoms, as it probably does for any other condition.

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My burning mouth started a couple months back and has gradually gotten worse. It is now to the point where my mouth hurts so bad! I have Idiopathic Intercranial Hypertension and was unaware that the meds could wreak havoc on your mouth. I have had these sores that come and go. They form on my tongue and it looks as though it was burned or scraped in a spot. So far it seems to reappear on the same spots. I get 1/2 of them. Does anyone else get sores too?

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@megjean

My burning mouth started a couple months back and has gradually gotten worse. It is now to the point where my mouth hurts so bad! I have Idiopathic Intercranial Hypertension and was unaware that the meds could wreak havoc on your mouth. I have had these sores that come and go. They form on my tongue and it looks as though it was burned or scraped in a spot. So far it seems to reappear on the same spots. I get 1/2 of them. Does anyone else get sores too?

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@megjean
Sorry for your pain. I get what I call canker sores and cold sores (fever blisters) when I slack up on taking l-lysine 1,000 mg once or twice daily. If it gets too much for the lysine then I use Valtrex 500 – 1000 mg as mine seems to be herpes simplex 1 related. I had not gotten these sores for many years until the burning mouth started up now it’s a regular aggravation. Have you ever been tested for the herpes simplex one?

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@mamajomclane

@megjean
Sorry for your pain. I get what I call canker sores and cold sores (fever blisters) when I slack up on taking l-lysine 1,000 mg once or twice daily. If it gets too much for the lysine then I use Valtrex 500 – 1000 mg as mine seems to be herpes simplex 1 related. I had not gotten these sores for many years until the burning mouth started up now it’s a regular aggravation. Have you ever been tested for the herpes simplex one?

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@megjean Those sores are so painful If you,ve chickenpox you have the herpes simplex virus in you it lies dormant then comes out at times ,as I think of it along time ago I had the hepatitis A@B injections and haven't had the cold sores since hmmmm maybe something you want to talk to your Dr about.

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@lioness

@megjean Those sores are so painful If you,ve chickenpox you have the herpes simplex virus in you it lies dormant then comes out at times ,as I think of it along time ago I had the hepatitis A@B injections and haven't had the cold sores since hmmmm maybe something you want to talk to your Dr about.

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I too have sores in the roof of my mouth at times. It’s like the skin swells and splits. Any suggestions?

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@destinnana I had a ulces in my mouth one time the Dr told me to increase my B vitamins to B complex 100 mg Idic and the ulcer went away it was on the roof of my mouth and throat ,has your Dr given you any advice?

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@katp

Hi all, I am sorry that so many of us suffer from this. It is maddening. My burning mouth began with an infected tooth that was pulled. I must have nerve damage because more than 5 years later, I feel an irritated burning sensation on that side of my face, tongue, and jaw. After cataract surgery I developed dry eye syndrome. With plugs and drops I manage that, although not well. I tested positive for one of the Sjogrens antibodies, so my docs say I have Sjogrens Syndrome. I have recurring ear pain also. Eyes, ears, and mouth are all so close together and all are lined with mucus membranes. Yet, docs and I still don’t know what causes all this. I am 66 and just thankful arthritis is my big complaint. It could be cancer as so many of my friends suffer with. Staying busy is my best medicine, but it is not a solution. God bless you all.

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@katp I am sorry your have some many ailments. I don't know about Sjogrens Syndrome, but this is sounds like BMS as you mentioned, sometimes called atypical Neuropathic pain. Mine was caused when a routine dental cleaning resulted in a damaged nerve. All I can do it try and manage the pain. Good luck.

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@lioness

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

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I'm guess they are referring to a mouthwash designed for people who get dry mouth. I use Biotene brand. It also comes in a toothpaste too. I have dry mouth from some of my meds. Last summer I discovered the dry mouth also causes tooth decay! Huge expense and months of treatment.

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@sherikay That's what I have and use B iotene mouthwash I also have dry eyes so I don't think this goes with Sjogjrens My eyes I think are more environmental as I live in Calif and the air quality isn't good sometimes especially when the Santa Anna winds start to blow they bring all the dust from the desert.

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@lauren123

@katp I am sorry your have some many ailments. I don't know about Sjogrens Syndrome, but this is sounds like BMS as you mentioned, sometimes called atypical Neuropathic pain. Mine was caused when a routine dental cleaning resulted in a damaged nerve. All I can do it try and manage the pain. Good luck.

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@lauren123
How did you determine the exact cause?

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I also am afflicted with this nasty syndrome. I am 68 years of age and I am a mostly retired court reporter. First six months I tried to figure out on my own thinking it was an allergy. My quality of life quickly went downhill so began seeing doctors including ENT, neurologists X 2, allergist, and dental experts, had lots and lots of blood tests and several MRIs of brain and entire spine. I was treated very well and told what I don’t have. A woman doctor (not sure of her exact qualifications) in Toronto specializes in researching and treating BMS tells me I have Burning Mouth Syndrome and prescribed Clonazapam at night (low dose) along with the Lyrica my ENT specialist had prescribed. Those drugs have heavy side effects and are addictive and only covered up the problem so I chose not to take them for more than 2 or 3 months. (They did give some respite from the pain)
I am now taking “bits” of edible marihuana(once a day) to cover the pain. It helps the pain in my lips and helps to relax me – which also assists my desperate and grumpy mood. I take as little as possible and not until needed. My personal syndrome symptoms, along with the mouth pain, includes a large dull headache and in my throat a constant salivating and swallowing and involuntary contracting of tissues on the right side of throat only. This last part is not assisted by the marihuana. Lucky for me,when I close my eyes to sleep it all stops. When I wake I’m fine except for sometimes headache will cause me to get up, but my mouth is all fine — once up – it all starts again — worse after lunch and worse still in the evening. I had my dentist fashion a mouth guard for me that I wear during the day – helps stop the “movement” of my tongue inside my mouth when it is moving around and helps me to “quiet” my mouth and throat down.
It helps me stay away from stressful situations and to lie down and close my eyes to make it stop – eyes must be closed. I learned the mouth guard trick from a lady on line. I hope this assists and or adds to research in this area —- one day at a time- bmc

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@sherikay

I'm guess they are referring to a mouthwash designed for people who get dry mouth. I use Biotene brand. It also comes in a toothpaste too. I have dry mouth from some of my meds. Last summer I discovered the dry mouth also causes tooth decay! Huge expense and months of treatment.

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@destinnana I suffered for several years with mouth pain sores that were confined to the back of my mouth on each side. At least they felt like sores. I saw several doctors, an ENT, allergy doctor, and several dentists. No one had any idea why my mouth was so tender. I couldn't eat strawberries, raw pineapple or walnuts although I ate them as a kid. I finally stumbled onto taking Vitamin B 12 and that has seemed to do the trick; nothing else seemed to and I don't want to reverse this by going off the Vit B 12 just to find out. For a while, I thought it might be Burning Mouth Syndrome, which I had read that 40% of post-menopausal women have; it's strange that 7 doctors/dentists had ever heard of it (but they were all men!)

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