NeuroTalk Support Groups - Burning Mouth Syndrome

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Burning Mouth Syndrome (https://www.neurotalk.org/peripheral-neuropathy/104072-burning-mouth-syndrome.html)

Burning Mouth Relief

I have had Burning Mouth Syndrome for about 2 years. I have been on Gabapentin and Alpha Lipoic Acid with some relief but breakthrough pain every day. I am a nurse practitioner so it has been hard to do my job with my mouth burning by 2 pm. I was at a conference on Neuropsychiatry recently and saw a poster about Using the medicine Pramipexol in Burning Mouth. It is a medicine used in Restless Leg Syndrome. There is some thought that Burning Mouth is caused by the same thing as Restless Leg. They were using this medicine which increases Dopamine in a certain area in the brain. I spoke with my neurologist about it and he was fine with giving it a try. I have now been on it for almost a month. I cannot believe the RELIEF I am getting!!! I am slowly cutting back on the Gabapentin. I am not having any breakthrough pain. If you check on this in PubMed, which is an online library for the National Institute of Health, you will find some other anecdotal reports about Pramipexol being successfully used in Burning Mouth Syndrome. I hope this helps some other folks out there who are suffering with this very difficult condition.

I wonder if this medication could be used for other types of neuropathic pain!!

Glad you ar feeling better!!!!!!

Such encouraging news! :o)

This is such good news! I have had burning mouth for 14 months & it is truly shocking! On a pain level of 1 - 10 I would rate mine at 10!
I have, in my life, suffered a bad back injury resulting in three slipped discs & a collapsed vertebra & yet BMS is the worst pain I have ever suffered - I would rather go through all the years of back pain, physio & hospital appointments than suffer this horrendous condition. It has taken over my life - it is all I can think about because it is always there. There is no relief for me, not even through the night - in fact, it is worse first thing in a morning!
It began immediately after I had a bottom molar extracted & yet my dentist & oral restorative dental consultant say it is not connected to the extraction but I KNOW THAT IT IS! I have been referred to an oral surgeon now but I just feel it will be fruitless again.
The only temporary relief I get is from chewing sugar free gum & rinsing my mouth with a very strong salt water solution --------and so it is so lovely to hear of someone actually finding relief & hopefully, a possible cure! I so hope that your improvement & relief will continue. Please keep us posted about your progress, won't you.

That is wonderful news...please keep us updated!

Burning mouth returned

I originally had bms back in 2015 thru time it got better and I hardly knew I had it. Then starting in 2021 I was diagnosed with glossopharyngeal neuralgia and had surgery on that nerve ( which they ended up cutting) and putting in a decompression pad to keep the artery away from that nerve. Then about 4 months later (and following my second Covid vaccination) my bms came back with a vengeance. Not only that I now have a taste I get in my mouth that is very sour and is really worse than the burning sensation. No matter what I eat it leaves a sour taste after I finish eating. Food tastes fine when I’m eating but shortly after the sour taste comes on. Brushing and flossing my teeth helps at times but not always. I’ve tried just about Everything I can think of but can’t get the sour taste to go away. Anyone else have this problem?

The thing that comes to mind that I heard early on with the covid issue is people experiencing so many different issues and smell and taste were a couple issues. I've not had covid or the shots. And no burning mouth experience.

Quote:

Originally Posted by dbrow (Post 571421)

I wonder if any of the members can report improvement or resolution in burning mouth syndrome, and, of so, how long did it take? I'm not talking about taking meds to address the symptoms. I'm really interested in knowing if the nerves ever healed.

My neuro says my burning tongue (also lips, hard palate) is due to small fiber neuorpathy -- damage to cranial nerves. I also have confirmed small fiber neuorpathy in my feet and hands. I've had the condition since April 2009.

My neuro sees about one case of burning mouth a year (she works in a large city clinic with lots of patients) and says that in a "couple of years" it usually goes away. I've also seen research stating that spontaneous, but partial, recovery happens six to seven years after onset in about two-thirds of the cases. :(

Yes, mine improved after we moved out of our moldy house. Mold can cross the blood brain barrier and damage cranial nerves. Mold damages everything.