Do you suffer from BMS

[Backed]

Does anyone suffer from Burning Mouth Syndrome as I do? It is the most debilitating, horrible, painful condition anyone can experience!

[park_bear]

I suffer from low saliva and dry mouth which can lead to burning tongue which indeed is a bad state. To avoid this I make sure my mouth stays moisturized through various means.

[Backed in reply to park_bear]

I have the exact opposite....way too much saliva, I drown in it even had to have a salivary gland ligation to try to control it which now is not working anymore. I take copious amounts of Lyrica to try to control the pain but I still suffer all the time. I have to see a neurologist at Duke as there is no one where I live who has ever heard of BMS.

[JerMan22]

What L-dopa medication do you take? When I first started taking Sinemet years ago, I had many bad reactions to it, including this. I looked at the side effects for Sinemet, and sure enough pain in the mouth is listed as an adverse effect of Sinemet. My neurologist didn't believe me so I had to show her myself. 4 years ago I changed neurologist and I no longer take Sinemet; I take Rytary instead, which is time released and I no longer have this problem. You might try it, or maybe try reducing your dose (carefully and under medical supervision).

[Backed in reply to JerMan22]

What is your primary diagnosis?

[MarionP in reply to JerMan22]

You had a neurologist who just flat out wouldn't believe his patient on spec? You should have punched him in the nose. Sounds like one narcissistic malpracticing fool.

[Backed in reply to MarionP]

When they cannot see anything it is all in YOUR head!

[Pats68]

Take oral probiotics.

[Backed in reply to Pats68]

What seems to help?

[Pats68 in reply to Backed]

I believe it is actually thrush caused by excessive Candida, and you won't find any traditional doc who will or knows how to test for it.

[Backed in reply to Pats68]

Thanks!

[Astra7 in reply to Backed]

For oral thrush I open a pro biotic capsule and let it sit on my tongue as long as possible before swallowing. Fixes in a few days if that’s the problem.

[MarionP in reply to Astra7]

That's very interesting, can you please specify more what it is that you take, and what you define as oral thrush, and what you mean by "fixes" so we are on the same page as to what we are talking about? Sounds like a nice simple fix.

[Astra7 in reply to MarionP]

Oral thrush when you have a white growth on the tongue. Uncomfortable and sore. I put the contents of Inner Health Plus probiotic capsule on it for a few days and it clears up. Other option is drops from the chemist - nilstat I think it’s called, but it tends to come back.

Not sure if this is the problem this posts author has though.

[weekapaw]

I had horrible burning tongue and burning mouth. I had been taking a Dopamine agonist which besides making me ocd and manic-depressive, with the Sinmet was giving me too much L-Dopa. When I called my Neurologist, he told me to call my dentist.

I did some research and found it is from too much dopamine, and they are studying it in rats.

Lower your dosage.

[Backed in reply to weekapaw]

It took me years to find someone who knew anything. I went to every dentist, neurologist, doctor and referral service in my state. Finally ended up at Duke with a German neurologist and research physician who could help me.

[MarionP in reply to Backed]

Right, so what was the help?

[Backed in reply to MarionP]

150 mg of Lyrica 6 times a day along with .25 mg of amitriptyline

[MarionP in reply to Backed]

Thanks. Your experience has already shown fruit, though you don't know it. Some good came of it.

[Larrydds]

I have had BMS for the past 20 years and it is totally unrelated to PD. It took me 2 years to find a doctor who treated it properly. I now take daily meds to control it and it is now tolerable.

[Backed in reply to Larrydds]

Which meds to you take?

[Larrydds in reply to Backed]

doxepen and carbidopa levodopa

[Backed in reply to Larrydds]

Thanks!

[ktbate]

Finally!!! I found someone with BMS. My neuro had never heard of it, the Ear, Nose Throat Dr. has never heard of it, my dentist doesn't know anything. My own research led me to using nonflouride toothpaste (didn't't help much). Then read the info on C/L which does mention tongue and mouth soreness.I definitely believe it is a side effect of C/L. I am going to try Rytary this month to help with dyskinesia and on/off problems BUT

JerMAN, RYTAY IS a form of C/L.

LARRYdds, what meds do you take for BMS?

I take my C/D without water half the time, I wonder if that is a factor? (I do this bec I have to take C/D every 2 hrs and am often away from home)

[Larrydds in reply to ktbate]

the BMS is not from PD or the meds of PD

[MarionP in reply to Larrydds]

What about that one who said it followed a dental procedure in which the trigeminal (5th cranial) nerve was severed?

[Rhyothemis]

Don't have it, but I'm always interested in learning about various pain syndromes since I have vulvodynia / vulvar vestibulitis syndrome and some other conditions. I was diagnosed around 25 years ago - after a lot of dr visits and tests, I finally got a clue and made an appointment with an MD-PhD clinician/researcher at UCSD - best doctor I ever had. Also, since I was around 7 yrs old, I've had bouts of urinary tract pain off and on - more on of late, unfortunately, as I approach menopause. The one thing that has helped me most with both problems is topical bioidentical estradiol (not premarin, not estriol).

It is interesting that BMS mostly affects post-menopausal women. Perhaps it is worth exploring a possible hormone connection.

Genetic testing can provide insights, though they may not be actionable. I'm a carrier for the Familial Mediterranean Fever gene, which is also associated with Behcet's Disease, which causes painful ulcers of the mouth and genitals. I've had bouts of aphthous stomatitis, but no genital ulcers, thank goodness.

Another thing that has helped me a lot recently with pain is magnesium in various forms. This morning I took a bath with magnesium chloride, epsom salts and borax - very soothing. Perhaps you could try an oral rinse with food grade magnesium chloride or epsom salt solution.

[Backed in reply to Rhyothemis]

I have tried many mouth washes, topicals, and any and everything imaginable for possible relief but nothing has hit the mark. My BMS started as the result of the 5th crainial nerve in my face being severed during a dental procedure. I have had this unbearable pain for over 11 years and it has increased since menopause so between that and hot flashes I am totally miserable day and night.

[Rhyothemis in reply to Backed]

I see you've been on gabapentin and pregabalin and that pregabalin was helpful maybe but not the gabapentin - coincidentally, I just met someone with fibromyalgia who had the opposite experience. She now takes gabapentin 4x / day and says it helps but it isn't perfect. It would be nice to figure out why people have different responses to these meds.

Have you tried CBD? They sell the hemp based stuff (e.g., HempLucid) in NC (where I now live), it's expensive. Some people say it is not as effective as the marijuanna-based stuff, but it worked for me. I save it for bad days.

I don't know if HRT is appropriate for you, but in general I think people should keep an open mind. Breast cancer is a major risk to consider, but overall mortality is reduced on HRT when initiated soon after menopause.* For me, it comes down to quality of life.

* nature.com/articles/nrendo....

Hope you find something that works.

[Backed in reply to Rhyothemis]

yes, I have tried CBD and medical marijuanna which do help some at that moment but not long term. I have had breast cancer so HRT is very limited. I have to take 150mg of Lyrica 6 times a day which is enough to kill a horse and still function.

[Stazina]

Neurontin (gabapentin) is used for this condition successfully.

[Backed in reply to Stazina]

I started out on gaba but it was not strong enough to control the pain and I had to go to Lyrica with amitriptyline

[Hidden]

journal-imab-bg.org/issue-2...

colgateprofessional.com/edu...

[Backed in reply to Hidden]

You nailed it! 100 per cent true! That covered everything I have experienced, tried, failed, discussed and am trying to live with now. Thank you for sharing such a great article!

[Hidden in reply to Backed]

You're most welcome. I hope that the article gave you some insight as to what can help you.

[MarionP in reply to Backed]

Please, what was the procedure and what teeth were involved when your 5th cranial nerve was severed?

[Backed in reply to MarionP]

My dentist recommended that I have the filling removed from my 12 yr molar on the upper right side and when he gave me the injection of novacain the needle severed the nerve. It was an accident and since my dentist went to my church my husband would not let me tell him what had happened. When I started having signs and symptoms of BMS I thought it was from the same tooth so I went to a denture clinic and had them extract a perfectly good tooth not knowing it was the nerve damage that was causing me the discomfort. The dentist there thought I was crazy as he could see no reason for pulling the tooth and he was right. Anyway many months later, many clinical visits, many dead ends, many clinicians thinking I am crazy until I get to Duke and find my salvation as Dr. Leidtke kept me from committing suicide. It was a very long journey......