Burning Mouth Syndrome. I have it very severe.

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

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gab15752 | @gab15752 | Mar 27 6:41am

In reply to @cookiepic "I am looking into seeing if MLS Laser Therapy will help with my degenerative disc disease..." + (show)

Some people Laser will help,and other people not,it depends on severely of the issue you have. Try it everyone is different. Good luck!

grammargal | @grammargal | May 2 7:02pm

I too have suffered from debilitating BMS pain since 2012. I am sorry, but I do not understand how commiserating with faceless strangers helps. I guess my misery does not love company. No one has recommended anything that I have not tried, without finding relief. The medical community knows nothing about BMS and no one cares. Every doctor I have seen, offers no help. I wish I would die. I am so ready for death. Only after death, will ALL pain be gone. Knowing that I am not alone in my suffering, only makes me sad for everyone who suffers with me. My grief for all who suffer is over-whelming. I find no comfort in knowing that I am not alone in my suffering. One can only conclude, that we will all suffer until we die. I am sorry if anyone takes offense to how strongly I feel. I mean no offense. I am so not okay.

sophie13 | @sophie13 | Jun 3 11:06pm

Hello, my name is Debbie. I am new here in this support group. I have had BMS for 3 years. I’m feeling so much anxiety over this horrible condition. I hurt until I go to bed at night. My Dentist and ENT have done nothing.
My PCP has me on Alprazolam .5 mg a day if needed. I suffer from this but don’t share it to friends because nobody gets it. It’s really taking a toll on my life.
Anyone have suggestions?

townsend | @townsend | Jul 11 9:22am

In reply to @bswtwa "I don't know where you heard that or what tests were done. I have had BMS..." + (show)

My daughter has just started lyrica and cymbalta. She had 5 days of no pain but now it is back.
She’s up to 150mg of lyrica. We tried 200mg but her legs and arms went numb. Have you experienced that side affect? Is lyrica still working for you?

townsend | @townsend | Jul 11 9:31am

In reply to @lauren123 "Hello, I have had burning mouth for over 10 years. I also take klonipin and it..." + (show)

What dose of Klonipin do you take? Is this a medication you can take as needed or a daily prescription?

Lori, Volunteer Mentor | @loribmt | Jul 11 10:38am

In reply to @sophie13 "Hello, my name is Debbie. I am new here in this support group. I have had..." + (show)

Hi Debbie, BMS is awful to live through without any help. You may want to ask your dentist to prescribe an oral steroid rinse to see if it helps you. The one I use is Dexamethasone .05 mg per 5ml. It’s a standard Dexa solution. I’m posting a photo below so you know what it looks like

The directions are to take 1 teaspoon (5ml) in the mouth. Swish for 30 seconds and then spit it out!
Don’t eat or drink for 30 minutes.
It really helps to calm things down.
Has this been suggested to you?

lljbuy | @lljbuy | Aug 21 6:09am

In reply to @sheetrock0131 "I'm not sure who you mean.I have no problem with eating food ie ice cream or..." + (show)

Did you receive the Botox shots? Did they work? I'm desperate and have had this condition for 13 years. Where did you get the shots. I've only seen that they've done them in Italy. Thank you!! If you want to text me directly my number is 20six-3nine1-1four86

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