Burning Mouth Syndrome. I have it very severe.

Open to discussion on the 24th

@sheetrock0131... So very sorry for the suffering you endure. Will hope and pray there'll be more research and treatment for your condition. I have other issues that cause intermittent pain and depression so I have empathy yet probably don't fully appreciate the level of discomfort you endure. Take care and I'll be sending my hopes for healing for you!

As far as coping,I hate waking up every morning to tace the horrible condition.zi suffer from depression and anxiety. It has taken the golden years away from me.As a retired woman,my husband and i own an r.v.and go south for the winter.I spend most of my days in bed,i get depressed, because,i hardly engage in activities.Friends are enjoying the day,im indoors resting.God Bless all..

I do not know about lazer treatment,but i have hears of a surgery that a sponge is put in the area where the nerve is,that causes this burn.The nerve rests on the sponge,and you no longer.feel the burn.
No Dr.That i have come across would be willing,and believe me,i have seen many..
Very dangerous, apparently you can suffer a stroke,and many other complications can happen
My heart goes out to all those who suffer..

Hi Elaine,im happy to hear something works for you.I am on cymbalta,and many other meds.Through the years,i have tried.everything. I just started to take a med.called Lamotrigine, at first it helped,but l8ke everything else,after a while,it stops work. .If it works for you,i pray you stay on path to feeling well.

Nothing works for me -have suffered everyday for over 25 years. Maybe med. cannibus might help. Would try anything at this stage. Tranquilizers have very little effect. Have stiffness in jaw also.
Any helpful suggestions are welcome.
Elaine

Connielaine,
So sorry to hear after such a long time, no relief.... I have no idea how you & others have endured this long; only 2 yrs. with this, and I can't imagine my future. It is beyond depressing. So I feel a little silly suggesting anything but you may want to check in with Lauren- I followed up on her experience with lazer treatment (have had only one to date) and I think I do notice less intense pain/burning- that's the good news. Downside (and I don't know if this is part of your condition but it's a big one for me) is I believe it has adversely affected my taste which is pretty much non-existent anyway. But I am going to run this by my dentist and see what he thinks- it is a relief not having that burning 24/7 but I am nervous about now not being able to taste the few things I've been able to in the past.
I am still trying to pursue the hypnosis (have you tried that?) but living in Buffalo (the most non progressive medical community imaginable) I am going to have to go out of the area and pay for it out of pocket.

I think of all of you suffering with this and you are in my prayers. I think one of the worst aspects is feeling invisible- I certainly don't go around telling everybody about it but sadly many of those who know just don't seem to "get it," and I find that incredibly frustrating and alienating. I've gone from an optimistic extrovert to prefer being alone with the pain and my thoughts which go very dark often and that scares me. No luck with shrinks- I have found them to be some of the worst listeners and offenders.

Take care- I hope knowing there are others thinking about you helps. This site has been a God-send.

Maggie45

Hello Maggie, I am glad to hear from you and that the laser seemed to work. I found that it dulled my pain. As time went on it seemed to dull the pain especially at night. The most effective meds for me are klonipin, recommended by Mayo Clinic on line. Before I started taking that, my taste buds were so sensitive I could barely eat brcause the taste was so strong. I now take a klonopin (clonozapam), cymbalta, and ambien since the pain is so bad at night. In addition, my pain management dr. gives. me a shot of Botox every three months. This is approved by the FDA for pain issues. The biggest problem is that he has to hit the right areas around my neck and jaw or I have minimal relief. If you have not been to a pain management Dr. I would see what she or he has to say. It all depends on what nerve has been damaged. Or sometimes it appears out of nowhere. I hope this reaches you as my phone is not allowing me to see my post. Best wishes. Stay strong as there is help out there.

Dear 11camaro... DID GETTING YOUR B-12 AND IRON LEVELS BACK TO ALMOST NORMAL RELIEVE YOUR BMS AT ALL? Your post caught my eye as my husband has taken meds for severe acid reflux and has Barrett's Esophagus... among other things. He is also a recent cancer survivor and a diabetic AND has this awful condition WITH severe TMJ at the same time. He can eat nothing except milk shake consistency liquids... Not even pureed foods as they are too thick to maneuver over his tongue. He has lost so much weight, the depression is horrible... and he has only had this for only about 4 months!!! Right now he is on B-12 shots and lots of other B vitamins, Gabapentin, and Alpha Lipoic Acid. He must take about 50 pills a day... which is a struggle in itself. So far nothing has helped... but I know it will all take a long time... if it helps at all! Jesus God... we need to do something to draw attention to RESEARCH NEEDED on this miserable, debilitating condition as more and more people will most likely be affected as we continue to trigger it unknowingly !!!

Try consulting an oral surgeon.My dentist was clueless and referred me. I find that certain ingredients in some toothpastes make this worse. My oral surgeon sent me to a compounding pharmacy for "Magic Mouthwash" by prescription. It helps, especially with cankersores! Try some mild toothpastes, baking soda, etc.