I am 51 and have had symptoms of BMS for 5 years. The last 2 years it has become a quality of life issue. I was miserable, slept with a wet cold rag in my mouth, chewed gum non stop to alter the taste and dryness. I finally found a doctor at Johns Hopkins that was an expert and researcher of this disease. He changed my life!! He put me on a low dose of neurontin and clonazepam oral tabs and gradually increased the dose until my BMS symptoms were tolerable. I take a fairly high dose of both now, and gargle and swish a small amount a water and hot sauce in my mouth when the burning is bad. It hurts like hell and for about 5 minutes following, but it amazingly stops the burning. I know it sounds crazy, but it really works. The drugs have changed my life. I still have some evenings when the symptoms seem to come back a bit, but I cant tell you how happy I am not living with severe BMS every minute of every day!!!
I've posted here a few times so wanted to give an update. I've been dealing with this a little over a year now. Read several sites, tried several things including going to Dr. Sciubba who was recommended on this site.
I've cut out all sorts of things to see what might be causing it and the most recent thing I have found has made a huge difference in cutting out is caffeine.
Here's my protocol:
I take .125 mg clonazepam (klonopin) three times a day, which was prescribed by Dr. Sciubba. This made a HUGE difference. I take it at 11, 4 and 9. First week took some getting used to but now I notice no side effects. Aside from it really, really minimizing the existence of the BMS, I no longer have to take ambien to sleep. I'm nice and sleepy by 9:30 but am perfectly able to stay up if I have to. I have about zero anxiety too. But I don't feel dull or anything. It's great.
I take zinc, B12, alpha lipoic acid, iron, calcium. The first three were recommended by people on this and other forums I have read. Dr. Sciubba also recommended the alpha lipoic acid. Have found it at both GNC and Target.
I drink TONS of ice cold water. All day. I don't care how many times I have to get up and pee. I use a straw and suck the water in and just let it sit on my tongue and swish my tongue around. Since I quit drinking caffeine (I don't drink coffee, I drink tea), I have replaced it with the water. But I did some reading on the internet about people who developed allergies to caffeine late in life. If it isn't an allergy, since caffeine causes anxiety, eye twitching and so on, I feel it is highly likely it could trigger other problems.
I also have a dental guard but I don't wear it every night.
My life is markedly changed since going on the clonazepam.
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Good luck.
Thanks for your encouraging words and seeing the need to reply. I have an appointment this week with a doctor. I will give him your comment and i hope this debilitating problem of mine can be resolved. i will give you a feedback later on how it went. Am sorry for replying back not soon enough.
I am wondering if other folks are having trouble with taste. I have had burning mouth for some time now but only in the last few months have pretty much lost my sense of taste. My sense of smell is very good but I cannot distinguish the taste of the foods I smell. Sweets and salty foods burn instead of taste. Eating any food item is pretty much like eating prickly sawdust. Thanks for any replies.
Just an update, I've seeing a naturopath, I'm doing B12 shots 1ml twice a week for two weeks, then 1ml once a week.
it has helped considerably, I too am trying to cut off caffeine, I do think increasing nerves or stress is definitely a factor. I was at 95% better a week ago and have had an incredibly difficult, stressful week and sure enough my tongue is at about 50% so I definitely think this is neurological, stress related. It makes sense I had neuoropathy pretty bad from chemo and my tongue was affected. If you can get your Dr to prescribe the B12 shots try it, its worth it and I swear it has made a huge difference. The shots work better then the pills because it goes immediately in our system
Did you mean that the vitex and progesterone cream helped your mouth to stop burning? What is vitex? My eyes have intermittent pain, but it is not a burning pain, but feels that something is in under my eyelid, and it varies from mild to severe pain. Is usually in one eye or the other.
Well this happend to me tonight for the first time really,and it didn't last,but really for a moment it felt i have fireball in my mouth.Like i said it stopped right away too but my toung specially left side of it felt like i got it burned,and entire thing was very strange,just hope it doesn't repeat cos it was scarry*!
Hi I am year old 49 woman. I have just had 2 months of BMS it was a nightmare but now I am on the right treatment and right dose I am 100% better and have my life back! The treatment is 50mg amitriptyline at bed time. IFantastic!!!!
Do you have any side effects?
Hi. You may contact with dentist of OcciDental - Brooklyn Dentists.
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what helped with your burning mouth syndrome? PLEASE respond!
so far not much..Going to see another Dr. today. I want to know about the person who took amitryptilene and what side effects there were. I was told there were many. So I won't take it until I know. Thanks