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Old 09-27-2008, 12:17 PM #11
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Quote:
Originally Posted by burnmyo View Post
Hi, I also suffer from BMS and other areas that burn. I also wore many splints over the last 14 years and took clonazepam.

I understand that burning mouth syndrome (from my research) can be due to sensory nerve damage.

I have been on another forum where a man had this whilst on benzodiazepines. It was the actual daily withdrawal from the drug itself that caused the burning. It is not easy to stop taking this drug. But he managed to do it and years later he is getting better, even though he still gets it, its not as bad.

It is my educated guess that some nerve damage happened (in my case) during an infection (wisdom tooth) and its extraction. I was informed it was infected right up to nerve root...and was not given antibiotics. The pain worsened after the tooth was extracted and spread.

From there, my dentist just didn't know what to do and said it would take time..I took myself to oral dentist who started with the splint etc meds.

Now I have palatal pharyngeal and laryngeal myoclonus, I believe due to original injury PLUS effects of all the medications & withdrawal from them causing nerves to misfire during all these years.

Clonazepam affects cognitive function, memory etc.
I find certain foods can make it worse, like bananas. Keep away from coffee, sugar.

Hope this helps some.
Hi friend! Yeah, it's weird. I don't know... I think this condition can be caused by SO many things, thus... different drugs work in different ways for various people. My mother knows a lady in her 70's with burning mouth syndrome who finds tremendous relief with Amitriptyline. Amitriptyline did NOTHING for mine, and caused me terrible side effects.

Acidic foods are completely out for me. Bananas I find SOMETIMES bother me, other times not. It's strange. I don't care much for sugar, but coffee's my 1 vice. If I only stick to home made coffee, I find it's ok. I don't over do it, and it's lower in acid than buying one out, so it doesn't affect the mouth as much.

I take a VERY small amount of Clonazepam, and only began about 3 weeks ago. .25mg in the evening when the burning kicks in, then .25mg at bedtime. Some nights I only take the .25mg in the evening, and I'm good for bed.
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 10-07-2008, 06:50 PM #12
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Ok, here's a BIG follow up. Significant one actually.

I quit smoking September 30, 2008. Almost immediately the burning mouth began to settle down.

As of today, still not smoking (I quit cold turkey) and overall, the mouth is feeling WORLDS better.

So much makes sense now. I should have tried to quit smoking LONG ago, but I didn't in my wildest dreams imagine that smoking could, alone, cause burning like what I experienced.

It's entirely possible that I had some condition appear initially back in 2007.... and that smoking kept whatever it was 'there', until I quit. I'm crossing my fingers on this one, but I do in the end believe it was smoking.

Still going to follow through with the dental specialist. Now, I barely chew gum as much as before, I don't deal with the dry mouth like before (Amitriptyline was responsible for that one). Clonazepam I find does irritate my mouth, versus before when I was still smoking and it HELPED my mouth (wild huh?).

So now I'm down to .5mg of Clonazepam at nighttime, however I am going to slowly taper off it now I believe, OR reduce to .25mg at nighttime (it can help other MS type burning I experience).

My tongue looks better, and I think once I get past the nutty transformation my body's going through from quitting smoking, I'll be able to much better judge this mouth situation.

It makes SO much sense though now.. and I wonder how many others with burning mouth syndrome smoke, but never realize how much smoking CAN contribute to the condition? It makes perfect and logical sense... I'd wake up and the burning would not be present. As the day went on, it got worse. Well duh, I wasn't smoking in my sleep LOL! So naturally when I first woke up, the mouth was not irritated like it would become later on.

Honestly, I feel like a complete fool (the smoking thing) but I can tell you, going from 1-2 packs a day to cold turkey no smoking was never easier than this time once I made the mouth connection to smoking and the pain.
__________________
2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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