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Old 01-28-2011, 01:30 PM #51
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Quote:
Originally Posted by SallyC View Post
I may be having a duh moment, but what is bms??

Burning Mouth Syndrome.......I think.
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Old 01-30-2011, 07:45 AM #52
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I already answered this thread, but it's one of those questions that you might answer differently at different times, right?

My answer was "imbalance". On days when my anxiety is at a manageable level, and my brain is at least half speed, my balance issues seem the worst.

On days when my anxiety is at "pending doom" level, I'd trade that symptom (assuming it's a symptom) and keep everything else twice.

On days when I can't focus and can't remember and can't think and sound as though I've never taken fourth grade grammar, then cognitive gunk would be the symptom I'd get rid of in a heartbeat.

From another perspective: if I had one of the symptoms that some of you have (visual impairment, loss of the ability to walk at all, severe unrelenting pain, severe uncontrollable muscle spasms, and so on) I would revise my answer...again.

I wouldn't want to trade any of my "worst" symptoms for one of those I just mentioned.

I know I'm off the track from the question, but that's another one of my symptoms: whatever rolls through my mind rolls off my lips.
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Old 06-23-2011, 10:20 PM #53
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Red face neurontin for burning tongue

Quote:
Originally Posted by daisy.girl View Post
I have been having this burning tongue thing lately....it started as a tingling tongue, but now my tongue feels like I have burned it on hot cocoa or something. Is this what you are talking about? I thought maybe this was a side effect of the neurontin I recently started.
I have severe burning tongue. I take neurontin at night & low dose during the day, plus folate, b vitamins, lipoic acid which is is recommended. No luck yet. My neurologist had never heard of this. I'm post menopausal, & have a geographic tongue-all factors for this. I also started an antidepressant called duloxitene. They say SSRI's like this (prozac, celexa also) may help. My next move will be hormones or a Tens Unit implanted.
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Old 06-23-2011, 11:31 PM #54
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Could I remove the DH at times. Sometimes I would like for him to leave me alone and let me lead the life I have been given right now
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Old 06-24-2011, 05:06 AM #55
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Cognitive isssues for sure. My memory is toast and many times I'm at a loss for words. My job is very affected by my memory but I try not to let my coworkers know. I work registration at a hospital so I have to be very careful dealing with insurance cards, test orders from doctors and ordering lab work. I will register someone and then send them off to their test area and then five minutes later I can't remember much about that person...name or anything! I try to slow down and really concentrate...I am looking for something different. How about talking to someone and not knowing what you were going to say next? Makes you feel like an idiot!!
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Old 06-24-2011, 07:45 AM #56
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Quote:
Originally Posted by Pamela Hoffman View Post
I have severe burning tongue. I take neurontin at night & low dose during the day, plus folate, b vitamins, lipoic acid which is is recommended. No luck yet. My neurologist had never heard of this. I'm post menopausal, & have a geographic tongue-all factors for this. I also started an antidepressant called duloxitene. They say SSRI's like this (prozac, celexa also) may help. My next move will be hormones or a Tens Unit implanted.
Thankfully my neurologist HAS heard of this, and I did a lot of reading, as I too suffer from this.

It's thought (by 2 neurologists I consulted) that it's due to lesions/damage in the brain stem. - In my case.

If it's permanent or not, I'm not sure.. I've read reports that it can disappear after 7 years (approx), but I don't know, where combined with MS, if this may be a lasting, permanent thing.

BMS (If I used this term) is Burning Mouth Syndrome as was pointed out back when this thread was newer. It's horrible, and I've had it since 2007.

What works? Low dose Clonazepam (Klonopin) for me. I tried the Neurontin route, the side effects from Neurontin were dreadful and it did nothing to help the mouth. I tried low dose anti depressants (Amitriptyline mostly) and that didn't do a thing, again... terrible side effects.

What I find works:

1. Keeping stress levels/anxiety LOW (meditation, gardening, whatever you can do to calm yourself)
2. Getting 8 hours of sleep (at least) a night
3. Chewing gum (I love Stride sweet peppermint personally.. and the flavour lasts a long time)
4. Drinking lots of water
5. Eating a healthy, balanced diet
6. Being active (anything to keep your mind off the mouth!)
7. Medication (for me it's been Clonazepam, not a first 'choice' but if you've ruled out the other meds without success, I recommend asking your neuro or GP about it)

Hope this helps, and I hope you're able to find some relief. I've also read that swishing with tabasco sauce diluted in water CAN train your 'wiring' in the brain etc to recognize what a 'true hot' sensation is. I would imagine one could also do the same eating jalepenos. Never tried the hot sauces myself, after my neurologist was satisfied in seeing my scans that this is likely brain stem related (which would explain why Clonazepam works for me).

EDIT: IMPORTANT: I have geographic tongue/fissured tongue, and suffer from severe mouth ulcers (canker sores). I've had all 3 since childhood.
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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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