Burning Mouth Syndrome (BMS): Anyone found any relief?

Posted by ristu @ristu, Feb 22, 2019

I have BMS 3 years now. Has anyone had pain, and inflammation relief from GABA capsules, or liquid ? Vitiman B12 ?

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I have posted about BMS before, but in case you missed it, the head of oral pathology at our local dental school prescribed 0.5 mg. of Clonazepam 2-3 times daily. I only take it twice a day and it really does help. I have found nothing else that helps. Good luck! With all good wishes, @joybringer1

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I am not sure if this is the same thing or related in any way, but about 3 years ago I woke up to my mouth burning, white sores on tongue, gums and inside of lips, my tongue was swollen and it was difficult to swallow, talk or even close my mouth all the way. I was prescribed Chlorhexidine Gluconate 0.12%. This however did not do much for what was going on inside my mouth, so I went to the pharmacy and purchased an OTC Mouth Sored Rinse (Orajel or Colgate) and used that and within a couple of days the symptoms were almost gone. Yes, I still have return occurrences but not as frequent nor does it last more than a couple days. In fact I can kind of feel when it starts to return, so I rinse with it two or three times a day and that seems to keep it at bay! Good luck! @btsum68

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Therabreath lozenges give me some relief. I’ve had it for 17 years.

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In 2012, my mouth and tongue started burning, as if I was holding hot coals in my mouth. Most general practitioners and dentists have no experience treating patients, with this painful affliction. I have also found that ENTs and Neurologists, have little, to no experience either. I suck on ice all day. Diphenhydramine offers a little relief, but then, I am over-sedated. I chew gum containing xylitol, until my jaws ache. Gabapentin worked for 14 months, then stopped. Increasing the dose, has had little to no effect. I am going to see a new Neurologist to discuss the possibility of oral nerve blocks. I am desperate, as I have been suffering alone, for so long. Am I the only one in the Chronic Pain Support Group, who suffers from Burning Mouth/Tongue Syndrome? Am I alone in this kind of suffering? I also suffer from CRPS. In my pain experience, if given the choice, I would choose feeling the pain of CRPS, over the constant, unrelenting mouth and tongue burning. But, I have no choice, I feel the pain from both life-ruining diagnoses and I am so desperate!

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@grammargal

In 2012, my mouth and tongue started burning, as if I was holding hot coals in my mouth. Most general practitioners and dentists have no experience treating patients, with this painful affliction. I have also found that ENTs and Neurologists, have little, to no experience either. I suck on ice all day. Diphenhydramine offers a little relief, but then, I am over-sedated. I chew gum containing xylitol, until my jaws ache. Gabapentin worked for 14 months, then stopped. Increasing the dose, has had little to no effect. I am going to see a new Neurologist to discuss the possibility of oral nerve blocks. I am desperate, as I have been suffering alone, for so long. Am I the only one in the Chronic Pain Support Group, who suffers from Burning Mouth/Tongue Syndrome? Am I alone in this kind of suffering? I also suffer from CRPS. In my pain experience, if given the choice, I would choose feeling the pain of CRPS, over the constant, unrelenting mouth and tongue burning. But, I have no choice, I feel the pain from both life-ruining diagnoses and I am so desperate!

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I also suffer from BMS brought on when an endodontist gave me a shot that injured the trigeminal nerve. That was 6 very long years ago. Gabapentin helped in the beginning as did oral Clonopin and Lyrica. Then their efficacy
wore off. Cymbalta has made some improvements. The nerve damage also radiates on one side of my face and lip. I'm so sorry for your pain because I understand. It has been a life altering event that most people don't have a clue about much less compassion. These are things that have helped me: dental gum sticks, dental floss, toothpaste for sensitive teeth, ice packs, heat packs, lidocaine, Benzo-gel, ice cream and for some unknown reason (for me at least) peanut butter milkshakes. I also drink ice water constantly. I've been told that CBT is helpful as would be medical marijuana. I've been to countless doctors and dentists and pain clinics. It seems like the pain has a circadian rhythm to it worsening in the afternoon into the evening. The pain causes such exhaustion. A good acupuncturist may be able to help you.

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@grammargal

In 2012, my mouth and tongue started burning, as if I was holding hot coals in my mouth. Most general practitioners and dentists have no experience treating patients, with this painful affliction. I have also found that ENTs and Neurologists, have little, to no experience either. I suck on ice all day. Diphenhydramine offers a little relief, but then, I am over-sedated. I chew gum containing xylitol, until my jaws ache. Gabapentin worked for 14 months, then stopped. Increasing the dose, has had little to no effect. I am going to see a new Neurologist to discuss the possibility of oral nerve blocks. I am desperate, as I have been suffering alone, for so long. Am I the only one in the Chronic Pain Support Group, who suffers from Burning Mouth/Tongue Syndrome? Am I alone in this kind of suffering? I also suffer from CRPS. In my pain experience, if given the choice, I would choose feeling the pain of CRPS, over the constant, unrelenting mouth and tongue burning. But, I have no choice, I feel the pain from both life-ruining diagnoses and I am so desperate!

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Hello @grammargal. I am sorry you have been dealing with this for so long. I wanted to quickly connect you to others who have shared their experiences to let you know you are not alone, so you will notice I have moved your post here:
- Burning Mouth Syndrome (BMS): Anyone found any relief?: https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/

Members @dustycat52 @btsum68 and @joybringer1 have previously shared and I also see that member @gracie71 has already joined you with a response.

When is your appointment with your new neurologist?

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@amandajro

Hello @grammargal. I am sorry you have been dealing with this for so long. I wanted to quickly connect you to others who have shared their experiences to let you know you are not alone, so you will notice I have moved your post here:
- Burning Mouth Syndrome (BMS): Anyone found any relief?: https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/

Members @dustycat52 @btsum68 and @joybringer1 have previously shared and I also see that member @gracie71 has already joined you with a response.

When is your appointment with your new neurologist?

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I see the neurologist on 4/20/23. I am seeing her for CRPS, but my PCP told me to ask if she treats BMS or can refer me to another neurologist who treats BMS. Thank you for caring!

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@gracie71

I also suffer from BMS brought on when an endodontist gave me a shot that injured the trigeminal nerve. That was 6 very long years ago. Gabapentin helped in the beginning as did oral Clonopin and Lyrica. Then their efficacy
wore off. Cymbalta has made some improvements. The nerve damage also radiates on one side of my face and lip. I'm so sorry for your pain because I understand. It has been a life altering event that most people don't have a clue about much less compassion. These are things that have helped me: dental gum sticks, dental floss, toothpaste for sensitive teeth, ice packs, heat packs, lidocaine, Benzo-gel, ice cream and for some unknown reason (for me at least) peanut butter milkshakes. I also drink ice water constantly. I've been told that CBT is helpful as would be medical marijuana. I've been to countless doctors and dentists and pain clinics. It seems like the pain has a circadian rhythm to it worsening in the afternoon into the evening. The pain causes such exhaustion. A good acupuncturist may be able to help you.

Jump to this post

Are you in any of the groups on Facebook? Those groups are a huge help.

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@grammargal

In 2012, my mouth and tongue started burning, as if I was holding hot coals in my mouth. Most general practitioners and dentists have no experience treating patients, with this painful affliction. I have also found that ENTs and Neurologists, have little, to no experience either. I suck on ice all day. Diphenhydramine offers a little relief, but then, I am over-sedated. I chew gum containing xylitol, until my jaws ache. Gabapentin worked for 14 months, then stopped. Increasing the dose, has had little to no effect. I am going to see a new Neurologist to discuss the possibility of oral nerve blocks. I am desperate, as I have been suffering alone, for so long. Am I the only one in the Chronic Pain Support Group, who suffers from Burning Mouth/Tongue Syndrome? Am I alone in this kind of suffering? I also suffer from CRPS. In my pain experience, if given the choice, I would choose feeling the pain of CRPS, over the constant, unrelenting mouth and tongue burning. But, I have no choice, I feel the pain from both life-ruining diagnoses and I am so desperate!

Jump to this post

Mine started in 2010. Tried all the recommended drugs.saw a dermatologist who was an MD and a DDS. We tried Xanax at 1mg. It worked. I now take 1/4 mg per day. Tapered down over time and it’s no longer a problem unless I eat spicy foods. Never had any side effects. If I stop however it comes back. A real lifesaver for me. Good luck.

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@gracie71

I also suffer from BMS brought on when an endodontist gave me a shot that injured the trigeminal nerve. That was 6 very long years ago. Gabapentin helped in the beginning as did oral Clonopin and Lyrica. Then their efficacy
wore off. Cymbalta has made some improvements. The nerve damage also radiates on one side of my face and lip. I'm so sorry for your pain because I understand. It has been a life altering event that most people don't have a clue about much less compassion. These are things that have helped me: dental gum sticks, dental floss, toothpaste for sensitive teeth, ice packs, heat packs, lidocaine, Benzo-gel, ice cream and for some unknown reason (for me at least) peanut butter milkshakes. I also drink ice water constantly. I've been told that CBT is helpful as would be medical marijuana. I've been to countless doctors and dentists and pain clinics. It seems like the pain has a circadian rhythm to it worsening in the afternoon into the evening. The pain causes such exhaustion. A good acupuncturist may be able to help you.

Jump to this post

I forgot to add that I have gotten some increasing benefits from B12 shots
l take every two weeks. Initially when the nerve damage occurred l
received low light Lazer therapy. It needed to take place twice a week but
was logistally impossible b/c it would have involved two 500 mile trips a
week.

Ice cold milk was soothing for BMS. Interesting enough I found lattes
soothing in the mornings but painful in the afternoons. Extra sweet soft
drinks were comforting in the mornings and miserable in the afternoons.
Blueberries and natural foods were soothing but spicy foods, citrus fruits
and salt were killers no matter the time of day. In general processed foods
which used to be so easy when in a hurry became very painful. It's
basically a trial and error pathway since everyone's biological makeup
reacts differently.

I still stand by my peanut butter shakes b/c they lend a comforting
coolness far more than other flavors. I wish you well on this uncharted
journey.

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