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

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.

Liked by Lisa Lucier

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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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.

Liked by Lisa Lucier

REPLY

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

REPLY
@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..

REPLY
@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.

Liked by lauren123

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.

REPLY
@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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Sheetrock, I replied by email. I hope it reaches you. If not, let me know and I’ll write another response.

take care.

REPLY
@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..

Jump to this post

Hello Sheetrock, Sorry it has taken me so long to reply as I have been traveling.  I appreciate your detailed response to these issues.  I have migraines which started after the dental incident that triggered by BMS and Atypical trigeminal neuroglia.  I have a botox shot about every three months which has continued for about four years from a Pain Medical doctor.  As long as he hits the right areas in the neck and forehead,  they can be very helpful.  I believe that when the migraines are affected positively by the shot, it reduces the amount of BMS pain.  I also have TMJ disorder and sinus issues.  As my pain doctor says (jokingly), “They like to play with each other. “  I am working with a dentist for appliances which take the pressure off my gums.  I wonder if this is what was referred to as “bite plates” by another member of our group.  I also experience pain on top of my head and through sides of the  head and ear.  I did have a scan and this condition is not the result of a tumor or other similar issue.  I think it has to do with the Trigeminal Neuralgia.  I believe I have what is known by some as Atypical Trigeminal Neuralgia because the pain is a throbbing, burning, aching feeling.  Besides clonozapam, Cymbalta, and a Melatoic for sleep if needed.  I also use Tumeric which I feel helps. I think it’s important to look at these issues holistically, since they seem to interact with other.  At least, that is my experience. Let’s stay in touch.  Stay cool! 

REPLY
@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..

Jump to this post

Sorry sheetrock, I missed this message (see below). I stopped the shots in the neck because the doctor did not give me any data that indicated that they would help. I only had two. Then the doctor moved to another practice and wanted to try it again. I said “NO.” I overheard a nurse tell a patient, “You can always say, “No.” Some doctors don’t like that, but I try to be a partner in the process. I research procedures and drugs, and sometimes I ask them their opinion if I’ve heard something good about the drug. I was the person who asked to have Botox for the migraines and it has helped. He then wanted me to use a device that had to be attached by threading it to my face that looked like a big mushroom. He had no information that it would help my form of TN or BMS. So, again I said “No, thank you.” I researched it and again found no evidence it would work for me. My understanding is that Type 2 or Atypical TN cannot be helped by shots, Gamma Knife or other types of procedures. Classic TN is sometimes helped by surgery, but this can be a dangerous step. Bottom line: be careful. I believe nearly all doctors really want to help their patients but there is little research to help them or us.
Good luck and keep me posted.

REPLY
@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..

Jump to this post

Hi,unfortunatly it did not reach me.Please try again
I look forward to talking with you.
God Bless.

REPLY
@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..

Jump to this post

Glad you did your reasearch.
Dont ever get talked into Gamma knife.
You will be worse than you are now..
I hot shots once a month for almost a year.
Nothing helps..

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