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

@twentyfour7

Hello, Fellow Afflicted-
I haven’t posted in quite some time, primarily because there has been no change in my status. I am into my 6th year with BMS, and so far no treatment has been effective. I have always put my lot in with Western Medicine, but desperation can drive us to us expand our comfort zones. I have an appointment next month with someone who practices Vibrational Therapy. It’s $$$ and a bit out there, and I’ve no idea what to expect, but it does seem to me there is an electrical component to my particular type of BMS. My mouth constantly feels like there is a current running through it, so I thought, “What the heck? I’ll try a different approach.” If anything comes of it, you’ll be the first people I tell.

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Wow, this Vibrational Therapy sounds very interesting, makes sense for what we are feeling and
I will be anxious to hear how it goes! Good luck🙏🏻

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I am back on CBD (CW oil 60mg 2 times a day) for 4 days. I was off of it because I ran out. It's difficult to say but it appears to subside BMS a bit. This is the 3rd I have noticed that while on CBD I tend to do little better. I still get burning but it's not severe. Just thought to update this group…

Please review my other posts for sequencing of events. I am 46 year old male and suffering since early Jan 2019

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@meadowhouse

Wow, this Vibrational Therapy sounds very interesting, makes sense for what we are feeling and
I will be anxious to hear how it goes! Good luck🙏🏻

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In reply to @twentyfour7

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Did you get any relief from the Vibrational Therapy? If so can you describe what the procedure is like?🙏🏻

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@meadowhouse

Did you get any relief from the Vibrational Therapy? If so can you describe what the procedure is like?🙏🏻

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I did not go because the practitioner requested $1500 in cash for the appointment. I’m desperate, but not stupid. Even though it might have helped, I wasn’t willing to risk that much on an unknown. I have a session pending with another person and it’s $150 for 2 hours. I will let you know how that goes. Meanwhile, I forge ahead trying to ignore the unrelenting prickle, burn and stinging. My prayer is that all of you who endure this wretched condition will find relief, or a way to cope until an effective treatment surfaces.

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@twentyfour7

I did not go because the practitioner requested $1500 in cash for the appointment. I’m desperate, but not stupid. Even though it might have helped, I wasn’t willing to risk that much on an unknown. I have a session pending with another person and it’s $150 for 2 hours. I will let you know how that goes. Meanwhile, I forge ahead trying to ignore the unrelenting prickle, burn and stinging. My prayer is that all of you who endure this wretched condition will find relief, or a way to cope until an effective treatment surfaces.

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Thanks for getting back to me. I know you have been suffering with this for 6 years and I have had this 24/7 for 8 years 🥵
I have joined a BMS support group on Facebook and it has been very helpful. There are over 3500 members on it from all over the world and it is very active.
Please keep me informed and I wish you positive thoughts!

Liked by twentyfour7

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@meadowhouse

Thanks for getting back to me. I know you have been suffering with this for 6 years and I have had this 24/7 for 8 years 🥵
I have joined a BMS support group on Facebook and it has been very helpful. There are over 3500 members on it from all over the world and it is very active.
Please keep me informed and I wish you positive thoughts!

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Hi. So, I've had burning mouth syndrome for approximately 4 years. I've tried everything from drug therapy Etc. Nothing works! Wanted to do a laser treatment, but it is not FDA-approved in the USA. I appreciate any comments to this email. Stu.

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@meadowhouse

Thanks for getting back to me. I know you have been suffering with this for 6 years and I have had this 24/7 for 8 years 🥵
I have joined a BMS support group on Facebook and it has been very helpful. There are over 3500 members on it from all over the world and it is very active.
Please keep me informed and I wish you positive thoughts!

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@meadowhouse Please tell me how to get into the Facebook discussion. I have BMS for at least 5 years; consulted numerous top specialists in NYC and Boston, with no help.

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@jshdma

@meadowhouse Please tell me how to get into the Facebook discussion. I have BMS for at least 5 years; consulted numerous top specialists in NYC and Boston, with no help.

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@jshdma

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In reply to @meadowhouse "@jshdma" + (show)

You must be a Facebook member to sign in. Search for Burning Mouth Syndrome (BMS) H.O.P.E
Support group. It is a closed group and you must ask to join.
Good luck, I think you will really like it. Please let me know how you make out😘

Liked by twentyfour7

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I sent a request to join the group. Thank you for recommending it.

Liked by meadowhouse

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Trying to join the group

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@lorikat Go to Skin Health. There are hundreds of entries under BMS.

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@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. On gabapentin and Lyrica. Nothing seems to help. Does anyone know a doctors name at Mayo clinic who treats this? Please help. Nanette

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Dermatologist Dr Bruce at Mayo, Jacksonville put me on Amitriptyline-worked great for few months then stopped. Still searching

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Burning mouth syndrome is a painful affliction, apparently with no treatment and certainly no cure. Since it is defined as a neuropathy, has anyone ever asked a neurologist about it? I have had it for 4-5 years: restricts eating, deformed my mouth, changed my life and nlo hope of ever improving.

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