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mygrigio (@mygrigio)

Burning Mouth Syndrome. I have it very severe.

Skin Health | Last Active: Mar 6 1:23pm | Replies (532)

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@duvie

Hello Everyone, About a week or little more Lilbit's mouth has been burning and sore. She uses upper dentures but is trying to eat soft foods to give her mouth a chance to heal hopefully. From what I'm reading on here, many have had a burning mouth for over 18 yrs.

Now her mouth seems to be constantly hurting and many times like it's on fire. Since about 1:30 AM she could not lay down long without screaming in pain. Her head has also starting to feel like it's on fire to where she grabs her forehead and yells in pain. It's 8:48 PM CDT and she is in route to the hospital by ambulance. I'll be spending the night at the hospital as I usually do when she is in the "Big House."
Any insight to what may be causing this would be greatly appreciated. Is there anything in particular I should ask the Drs to check on?
This gives me a another chance to educate the medical staff of support groups such as Inspire and Mayo Clinic partnership in regards to "Experts by Experience," Inspire's ability to post in multiple groups, and the great hospital site Mayo Clinic Connect.
Taking advantage of the opportunity with being around other patients and nurses to share knowledge as well as support groups encourages me more.

Errol

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Replies to "Hello Everyone, About a week or little more Lilbit's mouth has been burning and sore. She..."

Errol, I'm so sorry to hear about Lilbit and the necessary trip to the hospital. You ask good questions of the community. I hope that @lauren123 @sheetrock0131 @phyllisrnlauren123 and other members with burning mouth syndrome can help you prepare to talk about her symptoms with the doctors and what you should ask them to check on, etc.

Is there anything new or changed recently with Lilbit that may have led to her having a sore, burning mouth?

I’m so sorry for all your misery. I’ve had panic times from the burning and a few mellowed out times with it as well. Since the early 90’s I have had to deal with BMS. I’ve read research on pubmed, which I can link a little later. This researcher has biopsed BMS suffers’ front 2/3 of their tongue
And has found changes in the BMS epithelial cells among other findings. The longer you have it the more the changes damage you have. She has published a paper after many studies and has come up with the findings of it being a neuropathy of the small nerves near/on the trigeminal nerves. I have trigeminal neuralgia and Tmj and BMS all on the same side, my left. So the one thing in common is the trigeminal nerves. The researcher said this knowledge should be combined with pharmaceutical research to give BMS pt some relief. So according to this published researcher our diagnosis is trigeminal neuropathy or something akin to that.

Hello phyllisrn, this is very interesting. I also have trigeminal neuralgia and TMJ all on my right side. If you post the link, I will follow it. My pain is mostly in the lower gum, in a nerve damaged during a routine dental cleaning in 2004. I would really like to hear more of your experience. Thanks for sharing. Lauren

There's more on this site OVID about bms, but you have to be a medical specialist to get on the site. I'm hoping this link won't be broken because I have access to it but I don't know exactly what will happen if a nonmember tries to click on it. If you have a broken link then I will copy and paste for you. I do not post very often at all but I read every post from all who post here on Mayo. I've had bms since the early 90's and have studied so much and read about it compulsively. So far the nearest explanation for bms is this trigeminal nerve neuropathy. I wish dr's and drug companies knew about this study, it's better than most of the dr's opinion a pt. with bms will receive. I do not get excited about "cures" for bms because frankly I believe bms sufferers on this thread know more about it than dr's or dentist. We live it 24 hours a day minus sleeping time. Maybe one day someone famous will have it or someone with "money" will have it and it will nudge a researcher to research it thoroughly. I know I sound cynical but the answers for us (currently) do not rest with dr's. I would love for me to be proved wrong. I just do not believe pain meds or benzos should be used for bms. We should all try an antidepressive because bms can be and definitely is a source for depression! (AND DO WE HAVE A REASON TO BE DEPRESSED.) I will say If helps–try it, just keep your expectations low and your hope high. There will be a treatment for us someday.

I was diagnosed with BMS and central sensitization at Mayo almost 2 years ago. I chose to not take drugs and had rather try natural alternatives. Gabapentin was prescribed in the beginning but after reading all the info on it I chose to not use it. I don’t wanta be one that relies on strong drugs if I can possibly help. Does anyone have anything they can say that’s helped? Natural alternatives? I find that my mouth and throat seem to “fire up worse” when I get stressed. It never stops but it is worse during those times.

Hi, @destinnana — glad you got a definitive diagnosis two years ago at Mayo. Also, your observation about stress and its connection with flares is very interesting.

You mentioned you tried to avoid the gabapentin and go a more natural route of treatment. I'm thinking that @sheetrock0131 @lauren123 and @phyllisrn may have some thoughts on that and whether they may have found any that help.

In your search thus far, @destinanana, have you found any remedies like this that are effective for your BMS?

There are no tried and true remedies I’ve found other than using CBD oil at night which seems to help me sleep better. It calms me and allows me to rest sounder.