Burning mouth syndrome treatment

RELIEF!!! I have suffered with Burning Mouth Syndrome for many, many years. I went to every doctor under the sun. Nobody knew squat about this problem and some thought I was a hypochondric and a few tried to load me with depressents. I finally found an oral mouth doctor, a former teacher at Johns Hopkins, Dr. James Sciubba, an oral pathology expert and researcher of this disease. He prescribed me Neurontin and Klonapin and it has decreased my symptoms by half. I can finally sleep. I am not symptom free. I still having some tingling and a bit of bad taste, but I am out of pain. He will continue to adjust my meds until I am symptom free. And there are a few other drugs that are usde to treat this if those dont work for you. As crazy as this sounds, if you rinse your mouth with water and a couple drops of Franks hot sauce a couple times a day, the burning goes away. I know it sounds counter intuitive, and it hurts like hell, but 15 minutes later, you will have relief. I promise.

what is your blog? Thanks.

Are you taking klonopin and neurontin together? I have suffered with this for one year now but it's just my tongue. And I took klonopine and neuron tin, separately. They did not help at all. I have been getting stellate ganglion nerve blocks and they have helped a little . I would love to speak to your dr. Would you give me his number ? Thanks,

Candy

I have has BMS since June.  It started after Periodontal surgury last December and then thr rxtraction of another tooth in June.  The periodontist and my dentist do not think they are related, I do.

I went to a specialist at Nova Southeastern University in Davie, Fl a Dr Bradley and he has prescribed the following:

Three times a day taking Gabapentin 100 mg 2 capsules

Three times a day (last time before bedtime) melting Clonazepam .5 MG on my tongue and rinsing around my mouth

After every meal I brush my teeth and tongue using Baking Soda instead of toothpaste.  The I tale a teaspoon of water and 3-5 drops of Franks Hot Sauce in it and rinse for a minute ( you get used to the hotness very quickly)

It has helped and I still have bad days but there is improvement.

 

I also wear a plastic brace on my lower teeth when sleeping to keep my tongue from exploring.

Hey Skinnemj,

Thanks so much for your post. I have an appointment with Dr. Sciubba in a couple weeks for this. I'm looking forward to him prescribing the klonapin and Neurontin to get some relief. Are you still doing well? Have you heard of the baking soda cure?

okay, what is your blog

where is your blog???? I need help PLEASE.

I've been suffering from this for a year.  It came after a really traumatic event in my life, went away after about three months, then came back maybe a few months later.  At first, I didn't think it was anything chronic - I thought I'd drank something too hot or scraped the roof of my mouth with some food like a toasted bagel or cereal or something.  As for the sides of my tongue, I thought it was a sharp edge on a molar bothering one side.  While I did have a sharp edge and had my dentist fix it, he said the sharp edge was a natural edge in my tooth that I've always had.  This is a guy who knows my teeth well.

At one point, I even thought my bite was off from sleeping on my right side and even started to investigate the possibility that somehow, my tongue has gotten too wide for my bite.  That's how it feels - like my tongue doesn't fit and that the sides are getting pinched or scraped by my teeth.

Up until the last few weeks, I've been managing this through going to hypnotherapy and learning techniques to manage stress, this has been really helpful.  Then, at night, I take Ambien so I can get knocked down and not have to think about my tongue and roof of mouth AND, I got fitted for a custom dental guard so I can't clench my jaw and it keeps my teeth separated enough that my tongue doesn't seem to get sucked up so tightly against the roof of my mouth.  Otherwise, all day long, I focus on where my tongue is, relaxing my jaw so my tongue isn't pressing up agains the roof of my mouth and so on.  It's annoying to have to think about this all day. 

Thank God that Dr. Sciubba is in my area because I'm going to call his office on Monday and make an appointment.  This is the third search effort I've done on this annoying condition and I'm hoping I can get some more permanent relief from this after meeting with him.  In the meantime....

After running several searches on this and finding no more than all of you have found, I've picked up bits and pieces from all the responses I've read and here is what I am doing to control this miserable annoyance!

I should add that I'm not a person who takes any kinds of meds.  I took Zyrtec daily and that's it.  After reading someone else thinks they might have developed an allergy to the stuff, I'm going to go off it for a bit and see what that does.

Anyway, I take the following now:

B12, Zinc, Iron, Acetyl-L-Carnitine Lipoic Acid (found at GNC), Triple Strength Fish Oil (they say this helps your uptake of all of the supplements) and... probably the two most effective things I started taking are:

Valerian Root (500 mg) I have been taking one in the morning and one at night.  Seriously.  Makes me a wee bit spacey and makes me have sort of an 'I could give two sh*ts' feel about me but I'd rather feel that than obsess about my freaking tongue and roof of mouth.  If I feel too spacey, then I just skip the AM dose of it.  But I've decided that on weekends, I don't need to be as sharp so I'm cool taking it in AM and PM. 

Bach Rescue Remedy (4 drops on tongue).  I feel instant relief (although it doesn't completely take the sensation away)  as soon as I do the Rescue Remedy.  That stuff is amazing and I've heard about it for years from people who use it for stress.  It is natural and is from a flower extract (38 Bach) and as far as my research shows, is safe to use as many times as you need.  I've taken it up to three times.  I got mine at GNC and got the last bottle of it.  You can get it on Amazon, though.

Lastly, today, I've started brushing my tongue with baking soda three times a day.  Can't say that I feel a huge relief from that but it does seem to help a little.

Other than that, I try to avoid stressful situations (can't escape it at work), I started working out (does absoutely nothing for the tongue/raw roof of mouth feeling but it does help my mood and makes me feel like I accomplished something.  I try to sleep on my back here and there and relax my jaw to the point where my mouth almost opens or how you might look if you were about to drool or were really fast asleep.  I literally try to visualize doing that.  This gets my tongue away from the roof of my mouth and helps relax the muscles in my jaw, even for a few seconds.  I actually even have to focus on this during the day!

I will try to check back in with everyone once I've seen Dr. Sciubba.  Sorry so long but am hoping it helps someone.

Made my appointment with Dr. Sciubba.  Unfortunately, it isn't until 11/28.  But, I figure I've been dealing with it for this long, I can go a little longer!

Will report back in once I've met him.

Ok.. Here is my story again.... I found a new Dr. at the Cedars Sinai Painn Center, here in Los Angeles. Her name is Dr. Omrani. She is a DDS but so far has given me the most information and most complete exam since all this started 1 year ago. She said to take 2 vitamin b1 (150mg) twice a day. Also to suck and spit .5mg of klonopine 3 x a day. I have also been getting stellate ganglion injections in my neck area every week, alternating each side. The improvement is slight. But they say I need to have 12 injections and I have had 4. My Dr. has diagnosed this as nueropathy in one of my cranial nerves. I will have an mri in 3 weeks when I turn 65 ( medicare kicks in). She doesn't believe its anything as serious as a tumor but wants everything to be ruled out. So far Dr. Omrani has given me more hope than any dr. I have seen this year. There is another injection that can be done but we are waiting to see how much the stellate ganglion injections work. I feel so sorry for anybody suffering with this as no one understands the discomfort as we do. The nueropathy can come from shingles, major stress, anesthesia, etc. They don't really know why people get this but now I understand it is definitely a problem with the nerve. Dr. Omrani is here in Los Angeles. 

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Relief for me has been significant doing the stuff I listed in my last post, so to hear that other chemical remedies isn't making a huge difference for people isn't very encouraging for me. As a person who used to only take Zyrtec on a daily basis, to take all of the vitamins and supplments I do now is huge. But, at least it is all natural. I'm not a big meds hater but I'm not wild about getting on neurontin, clonapin and all the other stuff mentioned in earlier posts. But, if something chemical will get me back on track so I can eventually be rid of this forever, then I'm game, but then I want to be off the stuff. So, I'm open to hearing what Dr. Sciubba says.

I'd say if you were to put my pain without what I'm doing now, on a scale of 1-5, it'd be a 5. Doing all the stuff I'm doing now, it's about a 1 (if not less). But, it is also 2:00 EST right now, and, as we all know, this stuff intensifies as the day goes on. So, we'll see. I'm on like day 4 of taking the zinc, iron, fish oil, B12, lipoic acid (day 2 for that), valerian root and Rescue Remedy (yeesh!). And, as I sit here typing this, I'm making a concerted effort to keep my jaw relaxed and my tongue away from the roof of my mouth.

Dr. Sciubba doesn't take any insurance but Medicare. I'm 48 so this will be out of pocket for me.

Dr. Sciubba is amazing. I saw him today. What a wonderful Dr. and and wonderful person!

what did he tell you?

Please, what did he tell you?

Basically that I have burning mouth syndrome. Prescribed clonazepam and I am already doing better