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

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Please read my replies.I'm sheetrock0231
I've been suffering for 20 plus years.
I've done everything. God bless,all who suffer from this debilitating condition.
I refer to it as hell on earth.

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@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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Hi my name is Patty.I've suffered with b.m.s and trigeminal neuralgia. I can tell you from all my expierences,and where I've been,and what I've done.There is a nerve that comes from the brain,and neurologist know that.They can't operate because they don't know what nerve it is.Why,some get it from an accident, some get it from damaged dental work.i.e.hitting wrong nerve.Then there's pis menopausal women,whom get it from the nerve as well.Last but not least ,depression,can trigger that nerve. All the meds,homopathic meds,acupuncture, priest healers,and hypothesis, can't do a thing for all of us who suffer.Trigeminal nerve can be helped,with syber knife or gamma knife.But sadly I have both,so I'm not a candidate for that procedure. It is treated with no cutting.They place your head in a type of helmut,and zap the trigeminal nerve .Please keep in touch with me.20 plus years, I have done it all.

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Hi Patty (@sheetrock0131),
I noticed you mentioned earlier (http://mayocl.in/2sczs4N) that clonazepam does help relieve the pain for you somewhat. And that cymbalta and lyrica are also often used by people with BMS. Do you take clonazepam when the pain hits a peak, or do you tend to use it throughout the day? What works for you?

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@lisalucier

Hi Patty (@sheetrock0131),
I noticed you mentioned earlier (http://mayocl.in/2sczs4N) that clonazepam does help relieve the pain for you somewhat. And that cymbalta and lyrica are also often used by people with BMS. Do you take clonazepam when the pain hits a peak, or do you tend to use it throughout the day? What works for you?

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I take it throughout the day.I take 1in morning,and 2 at night.they are 0.5 mil.

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@lisalucier

Hi Patty (@sheetrock0131),
I noticed you mentioned earlier (http://mayocl.in/2sczs4N) that clonazepam does help relieve the pain for you somewhat. And that cymbalta and lyrica are also often used by people with BMS. Do you take clonazepam when the pain hits a peak, or do you tend to use it throughout the day? What works for you?

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@Thanks for the information. Do you take other meds as well? I also take Clonozepam. One at noon, one at mid-afternoon and one at night. They are 1.0 mil. I take a daily dose of Cymbalta as well, 20 mil at noon and 20 mil at mid-afternoon. Added to my BMS is TMJ and occasional migraines. Yoga is a wonderful release, along with exercises prescribed by a PT. It's a full-time job staying functional, but staying connected to others who understand the condition is critical for me.

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@lisalucier

Hi Patty (@sheetrock0131),
I noticed you mentioned earlier (http://mayocl.in/2sczs4N) that clonazepam does help relieve the pain for you somewhat. And that cymbalta and lyrica are also often used by people with BMS. Do you take clonazepam when the pain hits a peak, or do you tend to use it throughout the day? What works for you?

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I do take cymbalta,2 per day.I believe they are 20mil
I have nerve pain in the head,which is the trigeminal nerve.i get nerve blocks everymonth. They are hard to bear,the needle goes right into my temples,and many more around the head,and forehead.Im glad you responded.Please feel free to ask anytime.Its good to relate to someone,who feel your pain.God bless

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@lisalucier

Hi Patty (@sheetrock0131),
I noticed you mentioned earlier (http://mayocl.in/2sczs4N) that clonazepam does help relieve the pain for you somewhat. And that cymbalta and lyrica are also often used by people with BMS. Do you take clonazepam when the pain hits a peak, or do you tend to use it throughout the day? What works for you?

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Sheetrock, I tried nerve blocks but they didn't help at all. I really disliked the sensation. Do you take any other meds or supplements? My primary physician who is an Integrative MD suggested I give turmeric a try. I actually think it helps. He cited a study done by the Institute of Health which indicated that it helps with chronic pain. I'm very interested in supplements, but I always run them by my primary because he knows more about them than my Pain Med. doctor. I'm sure you know that they can interact with prescribed meds in a negative way. Take care and God bless to you too. Again, what about trying yoga? Is that an interest of yours?

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I glad we are both corresponding,its helpful for us.
Ive have not done yoga.Im all for it.
I tried so many things,im exhausted.Nowadays its so hard for me to attempt anything.My body,mind and emotions are pretty tired out.
I recently was put on oxycodine,1per.day,10 mil.
It helps,but Dr's dont advise taking it.
Due to all the laws changing,they are leery about giving this drug.After time goes by,it doesent work ,then you need to up,or take an extra.Its not a good idea.
So i had more shots,2 days ago,and im starting to worry.My head is hurting since the shots.I get about 25 per session.I hope its not making my trigeminal nerve worsen.Im thinking about stopping them.
Dr scheduled me botox on the next visit.
Im thing ,i might cancel.I have some conserns.Why did you stop.Can you tell me how long you went for them??Were they botox??I look forward to hearing from you..Take Care..

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@sheetrock0131

I glad we are both corresponding,its helpful for us.
Ive have not done yoga.Im all for it.
I tried so many things,im exhausted.Nowadays its so hard for me to attempt anything.My body,mind and emotions are pretty tired out.
I recently was put on oxycodine,1per.day,10 mil.
It helps,but Dr's dont advise taking it.
Due to all the laws changing,they are leery about giving this drug.After time goes by,it doesent work ,then you need to up,or take an extra.Its not a good idea.
So i had more shots,2 days ago,and im starting to worry.My head is hurting since the shots.I get about 25 per session.I hope its not making my trigeminal nerve worsen.Im thinking about stopping them.
Dr scheduled me botox on the next visit.
Im thing ,i might cancel.I have some conserns.Why did you stop.Can you tell me how long you went for them??Were they botox??I look forward to hearing from you..Take Care..

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I have been getting shots for a little more than a year.I never had botox,but i know they use it for a variety of things.
Its used for migraines.
I had started to expierence pain on top of my head,and through sides of the head and ear.
I did get a head scan,because of my worry.Everything was fine,Dr thinks im loaded with stress because of this condition.Thats why im waking up with pain around the crown of my head.
I believe if you have trigeminal neurogalia,which goes along with bms,does help only the nerve pain in head.
Nothing helps bms.
Its a pleasure corresponding with you.lets keep it up.
Try to enjoy our hot summer days..God bless.

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

Thank you. This is a useful tip for connecting.

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