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mygrigio

burning mouth syndrome very severe

Posted by @mygrigio in Just Want to Talk, 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

lexie

Posted by @lexie, Sep 14, 2011

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.

shellb123

Posted by @shellb123, Feb 27, 2012

Its awful I've been suffering for 8 years 🙁

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

I feel your pain..I have had bms for 18yrs.I am glad i found this sight.I have been the whole route.If you would like to ask me any questions you might think of don't hesitate.

shellb123

Posted by @shellb123, Apr 13, 2012

Yeah I've been through the whole route too 🙁 including almost losing my life after trying to get off of Klonopin!!! Nasty medication & controlled for a reason!! I maintain with Neurontin, ALA, Vit B & Zoloft. Dr's are just clueless.... How are you maintaining & doing?? Its just awful I'm so sorry you have to deal with this too!! Good Luck & God Bless 🙂

sheetrock0131

Posted by @sheetrock0131, Apr 18, 2012

I have been on clonazapam for many years,its temporary.Once it wears off my burn is back.I also burn in throat,and have pain in ear and right side if my head.To be honest with you,somedays i feel like ending it all...

lauren123 likes this
lauren123

Posted by @lauren123, Apr 18, 2012

Your symptoms are very similar to mine. I can relate to how desparate you feel. Please continue to share with others on this site.

I have had relief from yoga, which I have practiced for many years. I've had to adjust some of the positions to accomodate the pain. I've also been very fortunate in finding a chiropractor who uses a "pro-adjuster" to re-align my neck and spine when needed. This is a very gentle, computer guided approach which is non-invasive and helps with the TMJ issue.

phyllisrn

Posted by @phyllisrn, Mar 5, 2012

I forgot to tell you I have already tried a holistic approach. I was told to soak in hot tub with 1 cup bleach.Didn't help/ I tried bio identical hormones,nope, its not gerd I stopped eating for 4 months just liquids. Please believe me you are wasting your time. I even talked with someone on the internet that said she had all her teeth pulled, and it didn't help. I believed it is caused by damage to one of the cranial nerves that is responsible for taste.All of you will be in my prayers

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sheetrock0131

Posted by @sheetrock0131, Apr 14, 2012

I went to Tufts cranial facial pain clinic in Boston,Ma. I spoke with a surgeon and he told me this comes from a nerve in the brain,he was willing to give me shots to settle it down,but there are risks.I could have permement numbness and my cheek could sag with no feeling as well.After 18yrs i might consider it.I just can't see myself living another 20yrs(if i do!!!) with this awful condition..I pray for all who suffers from this..

lauren123

Posted by @lauren123, Mar 20, 2012

Hello lexie and phyllism, I think that there may be different causes and treatments for BMS. After ten years of trying different methods, I find the greatest relief comes from Klonipin and a laser. I don't think that hormonal testing will help (I had a hysterectomy and there was no change.) Changes in the weather also make a difference as my BMS also involves some arthritis. I have read that women have this condition more often than men.

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

Hi Laure,i have same condition and when there changes in the weather my bms becomes more severe.I am an 18yr sufferer.Gone to more specialists in Boston area,,,

lauren123

Posted by @lauren123, Apr 13, 2012

Hi Sheetrock, it's good to hear back from someone who understands this condition. Weather changes, sinus conditions, and certain foods all
aggravate the pain in my case.

Whoever said that having your teeth pulled is NOT a good move was definitely correct. I have been told repeatedly that this will worsen the condition because they can't work with your bite. My best help came from dentists specially trained in facial pain. There is evidence I experienced nerve damage from an aggressive dental procedure, I've heard that a significant number of cases start from a dental procedure, or it can be simply genetic.

sheetrock0131

Posted by @sheetrock0131, Apr 14, 2012

Hi Lauren,I am so glad to finally talk to people who have this condition.For 18yrs i have never talked to anyone who knows what i'm going through.I will say you are correct about pulling teeth.An older man in a nursing home was suffering with this condition and they had all his teeth extracted,his burning did not stop/I to have had a lot of dental work done to me in the past.Alot of extractions and i often wonder if that has played a part in my condition.I enjoying talking with you and others,believe me it helps..Sometimes i feel it just might be genetic..Please feel free to keep in touch.We all need one another..

lauren123

Posted by @lauren123, Apr 17, 2012

Yes, we do need to communicate, since there seems to be such a lack of understanding in the medical community. It does indeed help to have a support group for this problem. There seems to be a lot of disagreement about causes, diagnosis, treatment options and long term issues. Does anyone get over this problem? Where are the folks who have found successful treatments, or are they dealing with a different condition?

sheetrock0131

Posted by @sheetrock0131, Apr 18, 2012

Lauren,after 18yrs and so many Dr's i wonder is there really a cure?I think there is no funding for this,and it's put on the back burner.I enjoying comunicating with all those who suffer from this condition...I believe were are all having the same problem,and the same condition...

lauren123

Posted by @lauren123, Apr 18, 2012

Sheetrock, I am 63 years old and this condition began for me in 2004. I also believe there is little funding for this and that doctors don't know how to treat it.

Has anyone gone to the Mayo clinic in Phoenix? They have a web site for this condition so I would think they have some insight into this problem. I had a very bad experience at the Pain Clinic at the University of Colorado in Denver. They wanted to give me a round of shots in the neck, although they had no reason to believe it works, other than saying that it helps migraines.

sheetrock0131

Posted by @sheetrock0131, Apr 18, 2012

Lauren,thanks for the reply..Tufts cranial facial clinic in Boston wanted to give me shots in the tounge.This could cause permenent numbness in mouth and facial drooping..It would probably settle down the nerve,and if it flared up again,he could repeat the shot..I am scared to do it...I'm thinking of Mayo clinic..

lauren123

Posted by @lauren123, Apr 18, 2012

I'm certainly no expert but I've been advised by several doctors to avoid taking this kind of shot because the side effects are not well researched. It all depends on each person's symptoms, etc. as to what works and what doesn't. I'm also about to try the Mayo clinic. Some doctors think I have atypical trigeminal neuralgia. It is characterized by dull, continuous pain. There is simply no cure. One doctor told me to avoid surgery and to find ways to manage it. That's what I've been doing, but it takes a lot out of me. I focus on the fact that it is not a fatal disease and that other people have it much worse.

I'd love to hear more about the Mayo clinic and how the treatment protocol works.

sheetrock0131

Posted by @sheetrock0131, Apr 25, 2012

Hi Lauren ,if they think you have trigeminal neuralgia,make sure he tells you ab out gamma knife or syber knife..I have a friend with trig.neura. she has been given the treatment,and is pain free.I was hoping that was the case for me,but unfortunatlyi have a different problem with my burning mouth..Trigeminal consists of one nerve.In my case i have it with nerves all over my face..Please look up syber knife or gamma knife..It is a great treatment..There is no cutting involved..The Dr's put your head in a sort of helmet,and zap the nerve.Please mention this procedure to your Dr and let me know what you find out..Believe me when i say it works for people with trig.neuro..

lauren123

Posted by @lauren123, Apr 29, 2012

Hi sheetrock, I have a form of trigeminal neuralgia which is termed atypical trigeminal neuralgia. Many of the treatment for tm don't work don't work for people with atypical neuralgia, such as those you mentioned. By the way, atypical facial pain and burning mouth syndrome seem to be used for the same condition. I wish I could undergo a procedure, but it looks like meds, dental care and yoga are the best treatments for me at this time. Thanks for the note.

sheetrock0131

Posted by @sheetrock0131, Apr 30, 2012

Hi Laure,have you looked into the gamma knife or siber knife? Maybe you have,i know i was so dissapointed to find out i to was not able for this procedure..I have many nerves in my face i feel.It's like hair falling down my face.I have both bms and a form of neuralgia...I'll look forward to hearing from you..Take care.

lauren123

Posted by @lauren123, May 1, 2012

I've been told that these won't work for me either. Have you tried Klonipin and cymbalta, along with ambien and doxipin to sleep? These seem to work best for me, as long as I get enough sleep and do a lot of yoga. As someone mentioned, we all have to be careful we don't have too high a dosage. Some people have reported that Lyrica is helpful, but of course, everyone seems to respond differently. I hope you are doing better.

sheetrock0131

Posted by @sheetrock0131, May 2, 2012

Lauren,i had been on clonazepam for years.I also am currently being weened off cymbalta,as i feel it is not helping.I have recently been put on alprozalam,generic for zanax..I take 1mg twice p.day..I have also been on gabbapentin,and many other medications including seziure meds.(not helpful)I am so desperate for help,i went to three healing priests,and have blessed water from Lourdes in France..Clonazapam or zanax gives little relief,until it wears off..Today is a bad day,as our weather is very rainy and damp,so my mouth is raging with burn..As always i take pleasure intalking with you..Hope your having a good day..

lauren123

Posted by @lauren123, May 8, 2012

Sheetrock, I'm sorry to hear that you've not gotten significant relief from these meds. If you don't mind sharing, what dosage of Clonazapam are you taking?
My doctor just told me to start taking it in a form that dissolves under the tongue.
Are you sleeping okay? Edluar dissolves under the tongue as well, and I have found it to be helpful since I wasn't really sleeping until I went on this med. Best wishes for finding some help. How about meditation or yoga? It helps me stay focused on something other than the pain.

sheetrock0131

Posted by @sheetrock0131, May 21, 2012

Hi Lauren,I took the pill that dissolves also,for some reason the clonazapam seem to help me the best.I am currently on 0.5 mg 2times per day.I usually wake up during the night.It is very hard to get to sleep when your mouth is burning..I plan to take Yoga classes,i have heard many sufferes find help with Yoga.I have to push myself to go,i am always so depressed with this awful condition,it holds me back from doing much..Please feel free to write back..Thanks for your concern..Take Care..

lauren123

Posted by @lauren123, May 22, 2012

Hi Sheetrock, I also take the dissolving pill as well. However, I take a third dose of .50 about an hour before I go to bed. Along with the Edluar, I am able to sleep. The lack of sleep could really be complicating your condition. Perhaps you should speak to your dr. about it. I hope you keep up with the yoga. I have developed a home practice since I can't always make it to classes, although I love the support I get from a group atmosphere. I also pull back from activities which is very characteristic of this condition. I do think that ALA helps as well.

Hope to hear back from you soon.

sheetrock0131

Posted by @sheetrock0131, May 23, 2012

Hi Laure,what is Edular?Maybe i could run it by my Dr. I can relate to pulling back from activities,i also hold back.There are days that i stay in bed.You are right about the lack of sleep,and stress can also heighten my bms..Today was a bad day,woke up with burn,and pain on side of the face and behind my eye.My throat also has been on fire all day as well..I enjoy talking to you..Please stay in touch....

lauren123

Posted by @lauren123, May 24, 2012

Edluar is similar to Ambien. According to my dr., because it dissolves under the tongue, it does not have to be broken down through the liver. The best part for me is that it is very fast acting, so sleep comes quickly. I tend to be much more active during the day now, since I know that I will sleep at night. Also, my doctor has me on 25 mg. of doxipin which I take right before I take the Edluar.
You might want to look up these drugs on the internet. I'm interested to hear what your doctor says about these drugs.

My doctor is a dentist, an MD and an anesthesiologist. He helped me more than all the others put together. Sadly, he is no longer "my" doctor as he told me just last week that he is closing his practice and will be running a pain clinic for the Dept. of Defense. I know these returning soldiers need his kind of help , but I am now without a pain doctor. I hope that anyone who knows of someone around the Denver area who deals with facial pain issues will respond with some options.

Let's all keep talking.


sheetrock0131

Posted by @sheetrock0131, May 25, 2012

Hi Lauren,I'll be sure to run this by my Dr.It amazes me how the best in Boston,have'nt a clue on how to treat this condition.The neuro,at Tufts wanted me to take 4omeprazoile a day.He was sure it was coming from acid in my stomach.The drugest could not believe how much he wanted me to take..My insurance would'nt pay for 4per day/they said it would kill all the acid,and we are suppose to have some acid.there are over a million people who suffer from this dreadful condition..I'll keep you posted.Have a good Memorial weekend.

lauren123

Posted by @lauren123, Jul 4, 2012

Thanks Sheetrock. Any word from your doctor?

anneinside

Posted by @anneinside, Jul 8, 2013

Your rendition about the man in the nursing home goes against your belief that dental work - extractions - caused BMS as he had it before the extractions.

susanlcw

Posted by @susanlcw, Feb 2, 2015

Can you share names of the dentists/location you know specially trained in facial pain? I've suffered 24/7 for over a year and no one seems to be able to help me. Thanks for your help. Sorry about your circumstance.

karri

Posted by @karri, Jul 30, 2015

Trigermial neuralgia (SP?)

susanlcw

Posted by @susanlcw, Aug 8, 2015

Hi Karri,

Thanks for your comments. You are the first to respond and your response gave me access to the thread with all the other comments. Really quite discouraging aren't they

Unfortunately, I don't have any good recommendations for you. My quest for relief from 24/7 pain which manifests with the burning around the exterior of the mouth, pressure, numbness, tingling and just overall discomfort includes:

Dentists, oral surgeons, biological/holistic dentist, MDs, neurologist, naturopathic doctor, acupuncture. I've taken pain meds, antibiotics, prescription dose ibuprofen. The only definitive help has been acupuncture. My acupuncturist told me at the onset that nerve regeneration is very difficult and I needed to be prepared to commit to the long haul: 12-18 months to achieve up to 50% improvement at best. I get treated 2x/week and am in my 11th month. I have had a reducing of the symptoms but probably not more than 20%.

As you know, the pain takes over our lives. I am a very active person but there are days when I can't get out of bed overcome by weakness and fatigue. It really is lousy.

I hope this might help in some way. My best to you and, again, thanks for reaching out.

Susan

phyllisrn

Posted by @phyllisrn, Aug 8, 2015

Thanks for taking the time to contact me. Your testimony sounds quite a
bit like my history while searching for some relief. I truly believe that
it has to do with the cranial nerves, but thats just after trying to find
the answer and going from one thing to another..The few things that I have
that helps it, is 1. CLA conjugated linoleic acid ( at walmart) 2. stay
away from ICE CREAM! 3. Chew gum or have something in your mouth that mask
the BMS symptoms. One day they will find the cure, I truly believe that.
I can't remember exactly what I said (in my post,) but I went to the Mayo
Clinic back in the early 90's and they thought I was mentally ill and
wanted me to get psychiatric treatment. So I totally felt isolated and
alone, but my husband always believed in me and my doctor that sent me to
Mayo believed.in me also. So don't give up. Phyllis Marshall

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

Hi Lexie,i am a 62 yrold woman who has suffered for 18 yrs.I have done everything,from neurogilists,oral specialists,accupuncture..I have been on more pills than i can count.I have visited the best in Boston,i also have gerd and digestive problems and the Dr thought that was the problem.He put me on 4omeprazoile per day along with clonazepam.It is not the gerd.The omep.did not help the bms.I to would like to know your results..Good luck..

sheetrock0131

Posted by @sheetrock0131, Oct 2, 2016

Hi my name is Patty,I am a 20 plus yr.sufferer.I have been to the best hospitals in Boston.I'm so sad for your suffering, believe me,the Dr's have done everything but nothing works.Medication is the only relief that helps to a point.
I received accunpuncture, three different ones..I went to healing priests,I also had blessed water from Lourdes..
After all these years,Dr's do not know the cause ,nor do they know how to treat.

I am on so much meds,my days are spent on couch or bed. There are no golden years for.me..
The depression is quite bad.
I currently am on Cymbalta,Clonazepam, and a small dose of Oxycodine.
This condition is debilitating, and having it in the mouth is just brutal.
I pray for all of those who suffer with this horrible condition. .Feel free to respond anytime..
You might want to see an infectious disease Dr.someone was carrying a herpes germ on her tounge for many years.She was treated with Valtrex for a month,and is now pain free..

sheetrock0131

Posted by @sheetrock0131, Oct 2, 2016

To all who are associated with Mayo,i can tell you i am a 20 plus yr sufferer of bms,any questions ,please feel free.I have done it all,and took just about everything all of you have taken
I also have trigeminal neuralgia, and receive 25 nerve blocks a month.Mostly in head and neck,and temple area.It does not help my.bms.
I do suffer from depression,.My husbabd and i are retired and married for 47 yrs.although hes understanding,it also has caught up to him.He does get depressed from time to time.
This condition is debilating.
Somedays i just want to end it
But not for my family and grandchildren, and understanding husband,i would have..
I pray for all those who suffer with this horrible condition. .Please feel free to ask ,im a pro when it comes to this condition. .

connielaine

Posted by @connielaine, Oct 20, 2016

Have suffered with burning mouth for 25 long painful years. Woul love to hear from someone who shares this horrible condition.
Thank you
Elaine Swanson

colleenyoung

Posted by @colleenyoung, Oct 20, 2016

Hi Elaine, welcome to Connect. You'll notice that I removed your personal email from your messages. We recommend using the private message function if you would like to reach out to members privately and share your email. We don't want you to get unwanted spam by posting your email publicly in the discussions.
Thanks
Colleen

connielaine

Posted by @connielaine, Dec 22, 2016

Have found that wearing a bite plate during the day relieves the pain. Bought one from CVS.
Try it.

Elaine

lauren123

Posted by @lauren123, Fri, Jan 27 at 12:01am CST

Hello Shelby, I don't know if you are still on this site, but I would like to know if you are still having success with Zoloft? I have used A
LA, Vitamin B, and Edluar (Ambien) to sleep, along with Cymbalta. Neurontin upsets my digestive system so I cannot take it. I hope you are doing well.

maggie45

Posted by @maggie45, Sat, Feb 4 at 2:17pm CST

@susanlcw,
I am new to this site and just came upon your request for names... I'm having the same problem (live in the Buffalo, western NY area and am coming up dry- excuse the pun). I don't care where these specialists may be, I am willing to go where they are. If you're still checking in, I would appreciate your sharing any names you may have received.

Hope you're doing better.

Maggie45

dawn6604

Posted by @dawn6604, Sep 18, 2011

I'm 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn't stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can't even kiss my husband. Any advice would be greatly appreciated.

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raulsalazar

Posted by @raulsalazar, Nov 16, 2011

Hey how u doin dawn, congradulations on getting married! Hey I was just wondering if u have heard of any treatments or pain releivers for ur condition.. my mother has tha same condition as u do I'm tryng to find someone that may be able to help with any suggestions if u have heard, or are trying something to help with tha pain, please msg me back when u get a chance, thanks I really appreciate it....

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dawn6604

Posted by @dawn6604, Nov 16, 2011

I am on gabapentin 300mg 3 times a day. I usually have about 5 good days then a couple of not so good days. The bad days aren't as bad as they used to be. My lips aren't as swollen or as purple as they were in the beginning. I sure hope your Mother starts feeling better. Good Luck... LaDawn

sheetrock0131

Posted by @sheetrock0131, Oct 2, 2016

Please read my post..You are not alone,nor are you crazy..We just happen to be the unlucky ones..
The depression goes along with this condition..God bless you..

nanettehathaway

Posted by @nanettehathaway, Sep 18, 2011

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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nanettehathaway

Posted by @nanettehathaway, Sep 18, 2011

I have had neuropathic burning mouth syndrome since Dec. 2010. Most Drs. I've seen have never heard of it. I am on gabapentin and Lyrica, they are not working. Does anyone know of a specific Dr. who treats this disorder. I am in pain 24 hrs. per day, it is very SEVERE pain. Need help and a support group. HELP, NANETTE

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lauren123

Posted by @lauren123, Mar 20, 2012

Gabapentn and Lyrica did not help. Klonipin is the only drug that gives me relief. Find a dentist who specialized in facial pain and has appropriate training. I was often misdiagnosed as having fibromyalgia.

shellb123

Posted by @shellb123, Apr 13, 2012

Please do not use KLONOPIN & disregard any advice to take it! It is a CONTROLLED SUBSTANCE for a reason!! I have used it & almost lost my life!!!! I became mentally & physically disabled after getting off of it! You can't think or function & people lose their marraiges, jobs etc. please be careful!!!!!!! I would not recommend taking this medication!!!!!

anneinside

Posted by @anneinside, Jul 8, 2013

Shellb123 your experience is not typical. You have given your opinion which I disagree with. Klonopin is a fine medication if it is used appropriately. I have used it in the past and it was fine. I would use it again if necessary.

shellb123

Posted by @shellb123, Jul 9, 2013

Klonopin is a benzodiazepine & all benzodiazepines can cause physical dependence. It is not meant for long-term use as I was prescribed. I'm glad you had a good experience but that doesn't disregard that it can have MAJOR withdrawal symptoms if not weaned off slowly & if taken long-term it causes physical dependence. My comments were to HELP someone & PREVENT them from going through the HORRIBLE DISABLING withdrawal that I had for nearly ONE YEAR!!!! I shared my experience as to HELP someone else NOT go through what I went through!!!! I WISH SOMEONE SHARED THEIR EXPERIENCE W/ME BEFORE I TOOK THAT HATEFUL CRIPPLING DRUG!!!!! Also, do not state facts that you can not back up - my experience happens to more people than you know!!!!! It is TYPICAL & many many people have become addicted to Benzo's so don't come on here & make light of a situation that can cause death, suicide, divorce, mental/physical disabilities etc. it is a VERY SERIOUS drug & should be taken w/CAUTION or in my opinion NOT AT ALL!!!!!

sheetrock0131

Posted by @sheetrock0131, May 2, 2012

Nanette,i share your pain.I burn seven days a week.I am an 18yr sufferer.I have been to the best in Boston.I have taken some many meds,i lost count.I have had accupuncture,saw healing priests,i even have blessed from Lourdes in France.I believe because there is little funding for this condition,not much is studied.I to went to Tufts craniel pain clinic in Boston,and i think my Dr never saw a patient with this condition..Its'trial and error..I wish you well.One day without pain is a blessed day..I'll pray for all of us who suffer from this..God Bless..

bryleeraye

Posted by @bryleeraye, Jan 6, 2012

I am 53 and I have had burning mouth for about a year now. I have been to dentists, pychiatrist, family doctor and everyone of the docs tell me to see another doc it is so frustrating ... I am bipolar and take meds for it but this is a very depressing ailment in itself. All the docs look at you and don't know what you are talking about, so I do my own researching all the time and I found this site....if anyone has found something that helps PLEASE let me know.

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shellb123

Posted by @shellb123, Feb 27, 2012

It's awful I know 🙁

shellb123

Posted by @shellb123, Apr 13, 2012

And I also have been to every Dr. in the world who looks at me like I'm from another planet & tells me to see a different Dr. & you wind up going in circles!!! SO FRUSTRATING!!!!!

lexie

Posted by @lexie, Apr 13, 2012

I have found a wonderful group on Facebook. They are way ahead of dr's. I urge everyone to join us and discuss what you are going through. I went to Mayo and was so disappointed at the end of my appt. They do not know anything. Please try FB.

dreamerone

Posted by @dreamerone, Jul 24, 2012

what is the name of your group on face book. I suffer from burning mouth sev

lexie

Posted by @lexie, Jul 24, 2012

Just type facebook.com/burning mouth syndrome I think. If you have problems let me know.

anon83338660

Posted by @anon83338660, Feb 18, 2012

I too have burning mouth for about 1 year. Was finally sent to a dermatologist. She prescribed klonipin as needed and it worked the first pill i took. She is doing lots of blood work to check for vitamin levels. May also do allergy test to see if im allergic to fhe compounds in my gold crows and metal fillings. This is a Mayo clinic recommended treatment.

lauren123

Posted by @lauren123, Mar 20, 2012

Hello, I have had burning mouth for over 10 years. I also take klonipin and it helps quite a bit. How much Klonipin are your taking? I developed BMS after an aggressive dental treatment. I think the allergy test sounds interesting.

shellb123

Posted by @shellb123, Apr 13, 2012

Please read my above comment about KLONOPIN!!!!!

shellb123

Posted by @shellb123, Apr 13, 2012

Oh my gosh please BE CAREFUL taking KLONOPIN!!!! I was on two pills in the morning & two pills in the evening for 2 years for BMS & then a Dr. wanted me to get off it because it's not a long term medication & then my whole world got turned upside down! I went to the hospital to get off of it & then for the next year I was mentally & physically gone 🙁 I had been addicted in a way that I wasn't aware of until I tried to stop taking it!!!! That medication is horrible!! It wasn't until I got on Zoloft WITH Neurontin that I started to feel human again & some people have worse stories with Klonopin! STAY AWAY from that stuff!!

shellb123

Posted by @shellb123, Feb 27, 2012

I have had BMS for 8 years after a tonsillectomy and have gone in circles with no relief and most doctors are clueless! 🙁

lisaabentley

Posted by @lisaabentley, Apr 1, 2012

Any attempts with benetron or monofax...herbal remedies for BMS??

lisaabentley

Posted by @lisaabentley, Apr 1, 2012

Looking for research or data to show benetron or monofax hermal remedy is safe, my mouth is so sore with dryness, swelling & stinging.

carolaxis

Posted by @carolaxis, Apr 10, 2012

Hi! I´m from Argentina. I got here since I´m investigating on my own over this syndrome. As I am a teacher I use my voice, and my mouth a lot. I´ve told docs that after each class, my mouth burns a lot, I have to get home, drink water, even ice to calm down the pain, I also notice some stickness in my neck. I try not to speak during afternoon so as to get better. On nights I feel my mouth gets dry, and my lips also. Now I´m waiting for the results on Sjorgen Syndrome. We´ll see. Until now docs have said they see nothing bad in my mouth or troat. I´m pleasead to have found this comunity. Hope we could support each other.

shellb123

Posted by @shellb123, Apr 13, 2012

Yes we all need to support each other!!

sheetrock0131

Posted by @sheetrock0131, Apr 13, 2012

I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri's ct scans.I have been on seziure meds.and many more i can't even remember.I have been to the best in the Boston area..No to much is known about this condition.I feel for you..I am 62yrs old,just retired and have this to look forward in my golden yrears..This is sad...

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shellb123

Posted by @shellb123, Apr 13, 2012

Very sad & just awful!!! So so sorry!!! I wish we had some answers!!

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maggie45

Posted by @maggie45, Thu, Jan 26 at 8:17am CST

Hello,
I have read all your posts- very helpful but am finding nothing more current than 2012 postings?? If you are still "there," I would love to hear from you, I live in the greater Buffalo, NY area & have exhausted all possible avenues of help around here (thought of trying Boston but that doesn't sound any better )and feel very hopeless and despondent. I have read of success by a London Dr.who uses low level lazer treatments directly in the mouth but can't find any clinical trials in the US. Know anything about this? I've pretty much given up on all meds but do find something called xylimelts (dissolve over time in mouth) give some temporary relief.
Would love to hear from you,

Maggie45

kanaazpereira

Posted by @kanaazpereira, Thu, Jan 26 at 2:09pm CST

Hello @maggie45,

Welcome to Connect; I'm so glad you found us.
We do have more current discussions taking place with regard to burning mouth syndrome (BMS); please take a look at this link in Just Want To Talk: http://mayocl.in/2d5g7f5
Feel free to read back through the messages, and tag other members for more information.

Mayo Clinic in Rochester, Minnesota also has a Burning Mouth Syndrome Clinic, http://mayocl.in/2dcrO3F, and although there is no known cure for BMS, Mayo Clinic conducts ongoing research to improve the quality of life for patients with this chronic condition. This other link will take you to current research developments:

http://mayocl.in/2dpAHFy

Have you looked at the Clinical Trials page of the NIH (National Institutes of Health)? Here's a quick link: http://bit.ly/2k6iWyD

In the meantime, I hope fellow members @connielaine, @sheetrock0131, @ladenole, @mfelton, @iluvkatz, @uncbball, @susanlcw, @jamesmanning60 will join in to with some more insight for you.

@maggie45, what else have you tried to find some relief? Are there any foods you have to avoid?

lauren123

Posted by @lauren123, Fri, Jan 27 at 12:13am CST

I have had BMS since 2004. I went to a dentist who specializes in oral-facial pain. He used a lazer treatment on me and it clearly helped. I purchased a home kit over the internet that the dentist approved so I could use it at home. At first it was very effective, but I am finding it less so as time goes on. I definitely recommend it, especially for people who experience Atypical Burning Mouth Syndrome, characterized by burning, tingling, aching, throbbing, etc. My Pain Med Dr. does not recommend any type of invasive treatments such as Gamma Knife or others which work better for those with the typical symptoms. I hope this helps. Please contact me if you want more information. I don't know of any studies for lazer treatment for BMS. I would appreciate hearing from others who use lazer treatments

maggie45

Posted by @maggie45, Fri, Jan 27 at 6:04am CST

Lauren,
Since I am new to this, I don't know if you already got my reply, but in case not- thank you so much for answering me.
It is the first time I have actually made contact with someone who is dealing with this condition (and I am so impressed by all of you who have certainly been coping longer than I have at just one year and an half- but long enough to feel like I am losing my mind, all hope, not to mention family & friends who just "don't get it.")
I was so happy to hear you found a dentist who o.k.ed the lazer treatment. I am on my 5th dentist who is trying but not beyond the SalivaMax approach which I am still waiting to try. If you could please send me the contact information on the lazer kit you got over the internet, I will run it by him.
I hope there are things that I can share with you that may help you as well as others. Do you use Xylimelts? they're little pads that adhere to your gums and provide saliva relief for a few hours. I use them in the pm (most painful time for me) right up to betime and they do help.
Thank you again for taking the time to reply- I have felt so alone and please know how good it feels to a have a friend "out there."

P.S. Also, anyone out there for whom this all came after an endoscopy gone wrong.. Dr. foolishly forced an instrument through my esophagus (which turned out to be "torturous"= twisted)- left me with horrific pain swallowing, dry/burning mouth as well as sore throat and ear aches- all chronic 24/7 with intermittent bouts of acute pain. Seen numerous GIs, ENTs, neurologists- all to no avail.

Maggie45

lauren123

Posted by @lauren123, Fri, Jan 27 at 10:49pm CST

Maggie,

I'm glad we made contact as you are apparently in the same situation. The lazer kit I use is called TerraQuant. I found it on the internet, and the last time I checked it was still available. It is not inexpensive, but this device has been worth it. I do not know what the SalivaMax approach is nor am I familiar with the Xylimelts. Do they have to be prescribed or can they be purchased?

Have you read my other messages dating back to 2012? They will give you more information. I'm glad to share more information with you if they are not available.

I'm looking forward to hearing more from you, especially about the SalivaMax approach and the Xylimelts.

Thanks for the reply.

lauren123

maggie45

Posted by @maggie45, Sat, Jan 28 at 8:08pm CST

Hi Lauren,

So happy to hear from you. Thanks for the info on the kit.

I initially purchased (no prescription necessary) the xylimelts from a pharmacy , Family OTC in Boca Raton, FL.; however, they never got back to me after putting in a 2nd order but I did then locate them on Amazon- an 80 count box cost $17.95 They're worth it.
My dentist gave me a script for a saliva enhancer called Neutra Sal from a pharmacy in Pa. called Transition- they called me saying there is a manufacturer's delay on it so they are sending me the SlaviaMax instead-- still waiting. Suspect my insurance will not cover it but months ago, I tried something from a pharmacy, Linden Care in Woodbury, NY and they gave me a sample box to try free of charge- it was called Gel Clair- it's a gel in a small packet that you mix w/2T of water. It gives your mouth a coating that lasts a bit but I found it very nasty tasting & it also bothered my stomach but you may react differently.
I've had better luck with something I found locally in a compounding pharmacy; it's called Rincinol-it's manufactured in Italy under license of Sinclair Pharmaceuticals, 4 oz. is about $9 but it seems to last me a while if I only take a swig when the burning is especially bad.

Just remember something else I tried- salagen aka pilocarpine-generic and then civemeline (sp?). Both helped generate saliva initially but after a mo. or so my taste turned chalky from them; also at the time I was taking buproprion (wellbutrin) and I learned after the fact that it is contraindicated to be taking those meds while on that particular anti-depressant. Doc who prescribed it & my pharmacy obviously were not paying attention...oh well...

Please let me know how any of these work for you if you try them. Also, if you don't mind, maybe we could just "chat" now & then- it's probably obvious that I am over the top with finding others with this condition- so much of my problem has been this terrible sense of isolation and even close family members & friends just don't get the impact this has on your life. This is such a test for me- my nature is such that I unfortunately tend toward the dark side of things naturally and never mind about seeing the glass half full- some days I can't even find the glass! I was going to ask if you- or anyone else with this misery has tried hypnosis. My insurance won't pay for that either but I am considering it...

Before this turns into a book, I'll say bye for now.
Thank you again for responding and so promptly!

Maggie

shellb123

Posted by @shellb123, Apr 13, 2012

The Mayo Clinic recommends Alpha Lipoic Acid & Vitamin B which are both harmless 🙂 I take ALA 200 mg. 3x day & Vit B once per day & I believe that they have helped some. Also, all of you who are suffering have you had any surgeries or tooth work? This happened to me after a tonsillectomy & I do believe I may have had some nerve damage?! Also, anxiety is a cause of this & I suffer from that as well; do any of you? The safer route to Klonopin which you've heard me suggest to stay away from is Neurontin, I am on 900 mg. 3x day, yes that much! Plus the ALA & Vit B & Zoloft for the anxiety. I also have some good days & some bad days & some inbetween days, the bad days are awful!! This is such a tough disorder to have!!!! Sometimes I find eating something small can change the way my mouth feels or chewing gum. I wish there were Dr.s that were knowledgeable about BMS because those of us who suffer need some guidance & relief! May God Bless you & keep you as pain free as possible!!! 🙂

kinde

Posted by @kinde, Dec 28, 2012

I used cayenne pepper mixed with water and the pain left after about 5 minutes of really burning from the pepper... fight fire with fire... I am glad it worked so I can eat again! Stacy

sheetrock0131

Posted by @sheetrock0131, Oct 2, 2016

I think i replied to you
I am 66 yrs old and have had bms over 20 yrs.i have much experience with this condition, if you need any questions answered, please feel free to ask,as i have been to almost 4- 5 Boston hospitals.

connielaine

Posted by @connielaine, Dec 22, 2016

Have suffered with bms for over 25 years-everyday. Tried many melds. Believe Lyrica helps a little.
I find wearing a bite plate during night takes away the pain. Try it.

Elaine

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