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

@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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Hello Sheetrock, I’ve had trouble with my computer so can’t find the email. Sorry! Hope you are okay.

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

Sheetrock, all I can say is that Gamma Knife might work for some, but not for BMS. It’s so important that people get the right diagnosis.
But, that is such a difficult journey.

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

Have you tried the very thin bite plates during the day-seems to keep nerves from firing at each .

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

You are so right.Gamma knife works well for trigeminal neuraglia.It infuriates bms.
Drs wont touch someone with both.

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 Connie,
I know I’ve asked you this before, but I am having no success after seeing numerous dentists about these “bite plates.” They have no idea what I am talking about and look at me like I have 3 heads. Is there any way the dentist who provides you with these would be able to share with you with specifics (maybe in “dentist talk,”- like the exact material he uses and how exactly they are placed, etc. so that I could better explain them to my present dentist? This would be of immense help. I am not doing well and finding foods I could eat a year ago, burn my mouth badly now. Drs. here keep wanting me to see shrinks (whom I’ve seen plenty of to no avail). I am so tired of them not believing that there are other people with this condition who are actually finding some relief without taking a pill.

Thanks in advance for whatever you can do. Blessings to you all- I so admire how you hang in there and are always willing to share.

Maggie45

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, just sent your email to my dentist friend. Do you have any molds for upper and lower mouth?If so he will be glad to make you some thin ones, no charge. I could give you his email, but am not sure if it is safe. But let me know if you have molds.Elaine(my middle name)

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

I am not sure if they will help you as they do me, as my bms was described as atypical, but might try.Elaine

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

@connielaine, I apologize if I misunderstand, but what did you mean by not safe? If by sharing an email in the public view, you are correct, we do not recommend that. However, if you click on the member’s username of whom you wish to exchange private information, you can send a personal message that will be private and between only the two of you. I hope this helps.

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

Please explain to me how to connect privately.  I tried tapping what I think is user name and I do not find anyway to personally email.I am on my iPad and not too advanced with it.Thank you very muchConnielaine

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

No problem Connie. If you are replying by email, I suggest clicking on the VIEW & REPLY button at the bottom of this message.

Then try the following:

– Find the member you want to message with privately.
– Click on their username (the @ symbol followed by their name)
– You will be brought to their profile. Under their name there should be a “Send @ a private message” icon right under his or her name.
– Click on that and you should then be sending a private message. Just add a subject line, and then type your message.

Feel free to ask me any other questions if this process does not work, I have not tried it from an iPad!

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

Connielaine, my BMS is also atypical. I also have TMJ issues as well. What meds do you take? Any other suggestions? Thank you!!

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Hi, @lauren123, @connielaine, @maggie45, @sheetrock0131, @susanlcw, @connielaine, @maggie45, @dawn6604, @nanettehathaway, @bonitav, @mygrigio, @hcbb305, and @adkhs3333. It’s been a bit since we’ve heard from you all. Just wanted to check in and see how everyone is doing and how your burning mouth syndrome is going?

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Has any one in this forum heard from either the Phoenix or the Rochester that anyone of the many people treated for BMS, whichever type, has been completely curd. Rafael.Thank you

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burning tongue, what causes it, and is there any treatments?

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I have had severe tongue pain for over three years. Been to 14 doctors with no help. Even had brain surgery to sever certain nerves – no help! Then the other day I had a panic attack and ended up in emergency room where doc prescribed xanax. The end of pain was immediate!!!!! Anyone else out there?

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