Learn how to use Mayo Clinic Connect
Request an Appointment
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
@katp I am sorry your have some many ailments. I don't know about Sjogrens Syndrome, but this is sounds like BMS as you mentioned, sometimes called atypical Neuropathic pain. Mine was caused when a routine dental cleaning resulted in a damaged nerve. All I can do it try and manage the pain. Good luck.
Jump to this post
How did you determine the exact cause?
I also am afflicted with this nasty syndrome. I am 68 years of age and I am a mostly retired court reporter. First six months I tried to figure out on my own thinking it was an allergy. My quality of life quickly went downhill so began seeing doctors including ENT, neurologists X 2, allergist, and dental experts, had lots and lots of blood tests and several MRIs of brain and entire spine. I was treated very well and told what I don’t have. A woman doctor (not sure of her exact qualifications) in Toronto specializes in researching and treating BMS tells me I have Burning Mouth Syndrome and prescribed Clonazapam at night (low dose) along with the Lyrica my ENT specialist had prescribed. Those drugs have heavy side effects and are addictive and only covered up the problem so I chose not to take them for more than 2 or 3 months. (They did give some respite from the pain)
I am now taking “bits” of edible marihuana(once a day) to cover the pain. It helps the pain in my lips and helps to relax me – which also assists my desperate and grumpy mood. I take as little as possible and not until needed. My personal syndrome symptoms, along with the mouth pain, includes a large dull headache and in my throat a constant salivating and swallowing and involuntary contracting of tissues on the right side of throat only. This last part is not assisted by the marihuana. Lucky for me,when I close my eyes to sleep it all stops. When I wake I’m fine except for sometimes headache will cause me to get up, but my mouth is all fine — once up – it all starts again — worse after lunch and worse still in the evening. I had my dentist fashion a mouth guard for me that I wear during the day – helps stop the “movement” of my tongue inside my mouth when it is moving around and helps me to “quiet” my mouth and throat down.
It helps me stay away from stressful situations and to lie down and close my eyes to make it stop – eyes must be closed. I learned the mouth guard trick from a lady on line. I hope this assists and or adds to research in this area —- one day at a time- bmc
I'm guess they are referring to a mouthwash designed for people who get dry mouth. I use Biotene brand. It also comes in a toothpaste too. I have dry mouth from some of my meds. Last summer I discovered the dry mouth also causes tooth decay! Huge expense and months of treatment.
@destinnana I suffered for several years with mouth pain sores that were confined to the back of my mouth on each side. At least they felt like sores. I saw several doctors, an ENT, allergy doctor, and several dentists. No one had any idea why my mouth was so tender. I couldn't eat strawberries, raw pineapple or walnuts although I ate them as a kid. I finally stumbled onto taking Vitamin B 12 and that has seemed to do the trick; nothing else seemed to and I don't want to reverse this by going off the Vit B 12 just to find out. For a while, I thought it might be Burning Mouth Syndrome, which I had read that 40% of post-menopausal women have; it's strange that 7 doctors/dentists had ever heard of it (but they were all men!)
Check the replies that mention Vitamin B 12 and/or Vit. B Complex which can change the saliva in your mouth. It has worked for some of us!
Interesting! Do you use the spray drops or take pills and swallow them?
Did you use B12 spray in mouth or take the capsules? Does the spray relieve pain?
@mollyquilter Vit B (12) is often recommended for BMS. I had already been taking Vit B for years and got BMS anyway, and a long array of recommended remedies have done nothing to stop it (or even help it).
Hi @babsguelph and welcome to Connect. Thank you for sharing your story with us.
I wanted to introduce you to fellow members @lioness, @lauren123 and @mamajomclane as they have experience with this condition as well.
Back to you @babsguelph I was wondering if we could learn more about this mouth guard your dentist made for you. Is it similar to a conventional mouthguard?
Another woman on-line gave me the mouthguard tip (Not from this site). Her situation mirrored mine. She had needed to use a sports mouthguard unrelated to her BMS issues and noticed immediately that it helped her BMS so she had her dentist make her a more streamlined guard so easier to speak while wearing etc.
Mine looks like a kid’s plastic retainer – covers my top teeth – I followed what she did – bought an inexpensive drug store/ make it yourself at home to try and when it helped got my dentist to make a better one. I find when the mouth tissues are hurting you involuntarily move your tongue around or make “clenching” motions inside your mouth as if trying to suck on a non-existing candy or gum – the mouthguard stops the action – blocks it and allows you to “quiet” the movement which exacerbated the condition. For me – I wear it on and off during the day and take out when I’m ready to close my eyes to sleep. My mouth always feels almost normal upon waking – but as soon as I arise and begin morning ablutions it starts up and gets gradually worse as the day goes on. I have also discovered the mini sleep – eyes closed – quiets temporarially. For me – I’ll try anything to keep down the need for meds to control the pain. Babs@@
@babsguelph Welcome to this wonderful group I have dry eyes BMS dry mouth , dry nose I think a lot of my dryness comes from lack of humidity in the air its tough to get here in So. Calif. so I keep a humidifier going all the time. For my BMS I found that swishing around liquid B12 helps before I swallow it and using Biotene mouthwash a couple times a day and at bedtime especially I,ll even use it during the night . I did find out that medicine can cause this. . With keeping hardtack candy sugarfree with me at all times when out this helps. there is a saliva gel that you can use . I have never heard of a mouth guard but am interested in learning more about it. take care
Hi….like being in hell everyday !
I've had it 3 years.Nothing works, even clonazepm. Every day I have a burning, stinging throat, and uvula. Along with ringing ears, nausea, headaches, metalic, or strange taste upon waking. I'm tired of this life.
@ristu I also have BMS ,dry eyes ringing ears I found Biotene mouthwash helps I swish Liquid B12 around in mouth before swollowing see your EENT for ears I have an appointment for this month
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In