Burning Mouth Syndrome

[[gu...]]

I thought I was past this and have had a pretty good window for a few weeks but BAM, it came back again. Mouth, tongue and cheeks all numb and sore.

I was googling info about it and came upon this advice from Mayo.  Kind of funny but not really 

 

Treatments:

    Saliva replacement products

    Specific oral rinses or lidocaine

    Capsaicin, a pain reliever that comes from chili peppers

  An anticonvulsant medication called clonazepam (Klonopin)  isn't that what got me into this mess? 

    Certain antidepressants

    Medications that block nerve pain

    Cognitive behavioral therapy

 

Naturopath suggested I try Alpha Lipoic so hope it will give some relief.

 

JJ

 

[[Fl...]]

hi there, boy am I empathetic.  I, too, was prescribed Klonopin for BMS and have been wondering if it will come back as I taper.  one thing that has occurred to me is that maybe once the stress of the withdrawal is over with, you will find that your symptoms decrease.  I was also on Neurontin, another great med; but maybe, if necessary, not as harmful as a Benzo?  in my case, I was experiencing BMS on a higher dosage of klonopin (2 mg) when I was under a lot of stress and not on my current .75 which was my original dosage prescribed for the condition.  I know how painful BMS  is.  hang in there.  hope that things get better.  Flannery

[[ea...]]

Oh criminy, that IS kinda funny! Can you imagine? Klonapin for BMS? Prime example of whats wrong with medicine today!

 

How is therapy going to help BMS? Is it thought to be psych-related?!? Ive ONLY had it since being in withdrawal!

east

[Guest [...]]

I suffer from burning tongue and tender bottom front teeth and it drives me crazy. You can't seem to forget about it like you learn to ignore pain in other parts of your body.

 

Mine came on in the later stages of valium withdrawal. When I reinstated to 1mg Xanax I thought it would go away, but it hasn't. I've had it for about 18 months now and it's not getting any better at all.

 

My psych (who I haven't seen since last October - my choice - he didn't do anything wrong) didn't know what was causing it and he was puzzled at why the Xanax (my idea to reinstate that too - he thinks I can still quit) didn't cover it. I've even tried taking 5mg valium one time just to see if that would relieve it. It didn't.

 

My dentist has examined my teeth thoroughly and can't find a cause. The teeth concerned don't even have fillings. I explained the whole taper drama to him but he looked like he didn't have a clue what I was on about. At the end of it he said, 'Why are you taking Valium?'  I wasn't. He then said, 'You can just try stopping the Xanax.' Duh! I told him that was easier said than done. He's been seeing me since I was normal and knows (from my records) how many years I've been on the stuff! He actually acts like he either takes or needs to take Valium! I feel normal around him and I swear every time that I will find a new dentist!

 

My husband spoke to a friend who is a GP. This guy does not know my medical history but he said he wouldn't be surprised if I had been unwittingly treating this with Xanax and Valium all the while. When the dose got to lower than a therapeutic level the problem revealed itself as it is not uncommon. Apparently it seems to reveal itself in association with menopause.

 

This guy looked up some research papers and said that one of the alternative treatments was Capsaicin (chilli) in small doses regularly. This seems to give a good response in the short term. He said it dampens down the 'C nerve fibres' associated with pain signalling.

 

He also said that other standard drugs (aside from Clonazapam and the other benzos) include tricyclic antidepressants in small doses, and Gabapentin but admitted that these are probably a 'big hammer to use'. He is a doctor who has helped many patients get off benzos and was very encouraging to me but did warn that some people can't get off a very small dose of benzos after using them for a very long time. He thought I was doing very well when I got down to the very low doses of valium. (Sorry for all the 'verys'. )

He wondered how natural HRT might go (he doesn't know I've had endometrial cancer and can't go near that). And even a Magnesium Amino Acid Chelate supplement to stabilise the nerve cell membranes. I should probably try this first.

 

At least this guy had some ideas to try - and he doesn't even know me!

 

Anyway, I thought I'd share that with fellow sufferers. I sure would like to get rid of this symptom. I even try an extra Xanax dose or extra painkiller. Nothing seems to work.

 

[[be...]]

Hey there......realize this is an old topic but need some answers if possible.    12 days ago i had a oral medical treatment with a nebulizer device.....the meds immediate burned my mouth....no hives.  Mouth bright red no blisters.......redness gone within a couple of days....still burning, bitter taste and dry....24/7.

 

Question.....could a procedure not surgical cause burning mouth syndrome.....i doubt anyone knows but thought i would toss it out there.

 

No sleep, stressed and cant find anything to help me relax...breathing, yoga, tv and so on do not help me.

 

BB.

[[be...]]

Hey BB friends....anyone have the bitter taste 24/7.....my burning is improving knock on wood so i still dont know if it was from the nebulizer treatment or not....never had any mouth probs until that day....just curious.

 

If you do suffer with the bitterness 24/7.....do you have ny suggestions on how to stay calm and sooth it throughout the day?  I feel like my life has ended as I knew it and so many milestones are happening this year.  What should I do....I was forced to go back on klonopin at bedtime cuz i cudnt sleep due to the taste....not sure how long i will remain on it....depends on my sx.

 

BB.

[[wo...]]

I am at a year now and still have mouth issues.  Issues with my tissues.  How poetic!!  I crack myself up.  They are not as bad of course as it was after c/t.  Wow!!

[[Mo...]]

I am at a year now and still have mouth issues.  Issues with my tissues.  How poetic!!  I crack myself up.  They are not as bad of course as it was after c/t.  Wow!!

 

same with me , your poetry makes me laugh as well, but i hope the issues will go away soon.

its driving me potty.

[[be...]]

Morrwegg and wornout....do u have a bitter taste 24/7??  I am at my wots end and just need some support if u can provide any...no one else seems to be responding to my question about the bitterness....just wonder of there is nerve damage and where I shud go for help.

 

BB.

[[Mo...]]

Morrwegg and wornout....do u have a bitter taste 24/7??  I am at my wots end and just need some support if u can provide any...no one else seems to be responding to my question about the bitterness....just wonder of there is nerve damage and where I shud go for help.

 

BB.

 

i don't think its so unusual at all. i have had it on and off for months now.

its detox i think the gabaas in our mouth are coming back , don't worry

i know many members who had it , once the gabaas are back it will go away again.

i just had a pm from a member saying he has got metalic taste in his mouth.........

thats what you mean by bitter taste i suppose. i also know a Buddie who is

healed now after 22 months and its gone. i hope this helped a bit to put your

mind at peace. take care.

[[be...]]

Hey morreweg....thx so much i may have been the one who PM as i have PM a few others too....this all started after a nevulizer treatment with glutathione an amino acid....so no sure it is related to klonopin or not.....all i know is the prob in my mouth has now forced me to go back on klonopin just so i can get some sleep.....the bitter burn is 24/7 so i look forward to bedtime now that i have the klonopin not sure how long i will stay on it.

 

BB.