I am in so much pain and talking and eating hurt so bad. I'm scared, my doctor is prescribing me medication for it. Will I have it for the rest of my life? Is it possibly fatal? Thank you, I'm just looking for information.
To summer 17: I've been dealing with BMS for over 3 years and what does your doctor tell you is causing it? you definitely need to have an MRI to rule out a brain tumor but other than that it can be caused by many many things and be difficult to diagnose but none of the other causes with my knowledge are life threatening. Good luck because I know how hard this is to deal with.
Please don't worry. It is not fatal. It is however extremely annoying and frustrating. I find that the pain ebbs and flows. At times it is hard to cope with, but if I get very busy it is in the background and sometimes I don't even notice it. I am still looking for a cure and have tried lots of things without a really good outcome. Hang in there and know that you are not alone.
Burning mouth syndrome is often from a dry mouth. Dry mouth is most likel from medications. Antidepressants are notorious for causing dry mouth, as well as the "old" antidepressants, muscle relaxers, and pain meds. Also in that prolific list is muscle relaxers, and anti seizure meds. There are many more drugs that can cause dry mouth, but I cannot think of the categories right now. In other words, possible medication that we can need here on this group. It can also come from diabetes. (Doesn't everything else??)
The thing that you have to worry about burning mouth syndrome (caused by the dry mouth), is that you must take meticulous care of your teeth!! I have already lost several teeth due to the gums receding on me because of my dry mouth. As your mouth dries out, especially your tongue, you get cracks, fissures, and sores all over. I used to LOVE hot spices, and now I can't go near them!! If your doctor does not give you special mouth rinses, and toothpaste for your burning mouth, get Biotine Toothpaste, and all the extras in that line that you can purchase with it. The toothpaste, and gums, and sprays are wonderful! I'm not so crazy about the mouth rinse as it burns the heck out of my mouth, and because I am a mouth breather, that just dries out my mouth that much more in the AM. I always have a drink with me, or the Biotine gum so that I keep my mouth as moist as possible at all timesl
I hope that this answer calms you , and you realize that it is more of a pain than a major problem!
I've been a member of the BMS club since 2009. Research tests on BMS by Dr. R. Rogers, Dermatolgist whiz, suggested Alpha Lipoic Acid was the answer for relief. Since taking ALA my symptoms (secretions causing mouth ulcers and constant headaches/fever) have gone from a scale high 10 to a low 2. THANK YOU, DR. ROGERS!! I started with a low dose and worked up to 2400mg per day (2-600mg, morning and 2-600mg, evening). God go with you and good luck, hope it works for you like it does for me.
I have been dealing with BMS since I was in my mid 30s. I am now 62. I have been to many doctors and have been prescribed a "cocktail of medication". I went to Toronto in the early 2000s to see the leading expert on burning mouth syndrome. I learned that it can also be caused by taking different medications that you might have taken for something else. I take 4 different medications for BMS but I never have complete relief. I am in pain everyday. I read that after 7 years it will often go away. I also heard it can be passed from mother to daughter. My mother did not have it. I pray my girls never have to deal with it. I don't think it is life threatening but it is very annoying. I hope that you can find a doctor who can help you fine relief.
I have had Burning Mouth Syndrome and also am an MD and I can assure you it is not fatal. It is very painful though and I am so sorry you have developed this. I have tried multiple medications and the only one that has given me any relief is clonazepam. The medical literature also supports its use although it is considered an off label use by the FDA. It worked great at first unfortunately it is a drug you develop tolerance to over time and it is sedating. There is a lot of information on the internet from reliable sources like the Mayo Clinic, WebMD and the NIH. The only curious thing with you is that eating usually is one of the few times most people don't experience pain because you are using a different nerve and it sort of "overrides" the damaged nerve. Finally make sure you are followed by a neurologist as this is a neuropathy and their area of expertise not unless you are confidant your doctor now has a good handle on it.
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