Burning Mouth Syndrome: Anyone had success with compounded mouth rinse

Posted by nestletea @nestletea, Aug 16, 2021

I am a Mayo patient in Jacksonville, FL and have been suffering from BMS since January 2021. I have tried every natural remedy and food modification that the Mayo dermatologist recommended, with no success. The capsaicin rinse was not tolerable and caused mouth ulcers. My Mayo doctor just prescribed a compounded Clonazepam mouth rinse (.1mg/1ml) to "swish and spit" up to 3 times daily (5 ml at a times). Has anyone found success with this regimen? If so, how long did it take for symptom relief and at what dosage?

Interested in more discussions like this? Go to the Skin Health group.

@nestletea ,
I have experienced BMS with klonopin/withdrawal also. Please tell me more about your experience and other symptoms. And no, other than offering Neurontin, my doctors had nothing to offer to treat it. It subsided after two years or so, however.

REPLY

It has not subsided with any treatments so far and began right after surgical menopause. I cannot tolerate any SSRI's or gabapentin, so that is not an option. I am trialing the clonazepam swish and spit, however insurance does not cover since it is compounded. Mayo Dermatology is also looking at possibly doing patch testing to determine the cause. I am glad yours subsided, it is a frustrating condition, and there are not a lot of treatment options that seem to be effective.

REPLY
@nestletea

It has not subsided with any treatments so far and began right after surgical menopause. I cannot tolerate any SSRI's or gabapentin, so that is not an option. I am trialing the clonazepam swish and spit, however insurance does not cover since it is compounded. Mayo Dermatology is also looking at possibly doing patch testing to determine the cause. I am glad yours subsided, it is a frustrating condition, and there are not a lot of treatment options that seem to be effective.

Jump to this post

The head of oral pathology at our local dental school prescribed 0.5 mg of clonazepam 2-3 times a day. I find twice a day is enough for me and have been taking this for years. This is the only thing that has worked for me. Every once in a while I will take just one and I know it is time to go back to two when my mouth begins to burn. This can be a miserable condition without help so I hope you can try it. Before I found this answer, a rheumatologist prescribed a compounded swish and spit. It did not work. I am thankful for the clonazepam. @joybringer1

REPLY
@joybringer1

The head of oral pathology at our local dental school prescribed 0.5 mg of clonazepam 2-3 times a day. I find twice a day is enough for me and have been taking this for years. This is the only thing that has worked for me. Every once in a while I will take just one and I know it is time to go back to two when my mouth begins to burn. This can be a miserable condition without help so I hope you can try it. Before I found this answer, a rheumatologist prescribed a compounded swish and spit. It did not work. I am thankful for the clonazepam. @joybringer1

Jump to this post

Thank you! I am trying the compounded Clonazepam, as Mayo Dermatology will not prescribe the disintegrating tablet to swish and spit. I am truly hoping to finally get some relief from this condition!

REPLY

I also deal with BMS, the only relief I've found since far is rinsing with baking soda. I getting ready to make my appointments to see many Dr's at Mayo one of them is to see a dermatologist for Contact Dermatitis IV allergies & Burning Mouth, never heard about taking CLONAZEPAM before, I've taken it before but made me so tired. Can anyone suggest who they have seen for BMS, and patch testing?

REPLY

I came down with burning mouth syndrome several years ago. My GP and dentist both thought I was nuts. I only used ordinary oral hygiene and it went away in several months on its own. Strangest thing ….

REPLY

I have recently been hospitalized for treatments for severe hives allergy and was given heavy doses of prednizone and benadryl. They cleared up the hives and I'm home, but my mouth and gums are very sore and tender. Painful to brush my teeth. I feel the cause was the meds. but have no clue what will help.

REPLY
@dorisjeanne

I have recently been hospitalized for treatments for severe hives allergy and was given heavy doses of prednizone and benadryl. They cleared up the hives and I'm home, but my mouth and gums are very sore and tender. Painful to brush my teeth. I feel the cause was the meds. but have no clue what will help.

Jump to this post

Hi Doris, I’m so sorry to hear that you’d been hospitalized. My goodness, did you find out what caused the severe hives? I’ve only experienced that once when I was getting a platelet infusion. It was awful but quickly treated by my attentive nurse with 50ml of Benadryl! Thank heaven’s!! Of course I slept for hours afterwards. But wow, I never want to experience that again!

Prednisone can indeed cause burning mouth syndrome and especially in post menopausal women…lucky us, huh? It will take time but if the prednisone caused your condition, it will eventually diminish and disappear.
There are other conditions in the mouth that can cause burning. But you didn’t mention having any lesions in your mouth so I’m just going on the premise for now that it’s caused by the prednisone. If your symptoms persist for more than several weeks it’s a good idea to check in with your doctor or dentist to make sure you don’t have a thrush (fungal) infection or other condition.

Has your diet changed since the hives episode? The reason I ask, BMS is often caused by a vitamin B deficiency. Some foods with Vit B are fish, meat, Turkey, whole grains, avocados,bananas, oats, bran, yogurt, slang, milk, cheese, bread and eggs. If you can eat more of these vitamin rich foods that might help. They’re beneficial anyway.

Avoid salty foods such as potato chips or acidic foods like tomatoes, citrus fruits for a while. Papaya can be soothing in the mouth however.

Ok, let’s get you some help inside your mouth. These are home remedies I used during my Leukemia treatments after some fierce chemo. Hopefully these bring you some relief to get you through the worst of it.

First thing to get is a super soft tooth brush. The bristles are almost as soft as fur and are marketed as brushes for pregnant women because their gums often swell and are sore during pregnancy.

>Brush your teeth with plain baking soda or Arm and Hammer Baking Soda toothpaste. It has a soothing, calming effect.
>Make a mouth rinse of 1 tsp baking soda to 6 oz of warm water. Swish for 30 seconds, then spit it out and repeat several times. Don’t swallow
>Try Salt water rinses with 1/4 tsp salt in 6 oz warm water.
>Try rinsing your mouth with cool apple juice.
>A little honey on the tongue. Allow it to dissolve and spill over your tongue for about a minute. Then swallow.
>I’ve also done the same thing with yogurt. Just let it sit on my tongue before swallowing.
One more product I used was Spry healing mouth rinse from Xlear (you can order on Amazon. Some pharmacies have it but it’s hard to find.) It contains xylitol which can promote healing by preventing bacteria from adhering to the tissue.

Colgate Peroxyl mouth rinse is soothing and helps healing. However you shouldn’t use that for more than 7 days. The peroxide in it can change the normal flora of your oral tissue with some side effects.

Ok that’s a lot to digest! But hopefully in that list something will bring you relief.

A fellow member, @artist01 has also had experience with burning mouth and used a coconut pulling rinse. https://connect.mayoclinic.org/comment/633127/

I forgot to ask, is your mouth overly dry?

REPLY
@loribmt

Hi Doris, I’m so sorry to hear that you’d been hospitalized. My goodness, did you find out what caused the severe hives? I’ve only experienced that once when I was getting a platelet infusion. It was awful but quickly treated by my attentive nurse with 50ml of Benadryl! Thank heaven’s!! Of course I slept for hours afterwards. But wow, I never want to experience that again!

Prednisone can indeed cause burning mouth syndrome and especially in post menopausal women…lucky us, huh? It will take time but if the prednisone caused your condition, it will eventually diminish and disappear.
There are other conditions in the mouth that can cause burning. But you didn’t mention having any lesions in your mouth so I’m just going on the premise for now that it’s caused by the prednisone. If your symptoms persist for more than several weeks it’s a good idea to check in with your doctor or dentist to make sure you don’t have a thrush (fungal) infection or other condition.

Has your diet changed since the hives episode? The reason I ask, BMS is often caused by a vitamin B deficiency. Some foods with Vit B are fish, meat, Turkey, whole grains, avocados,bananas, oats, bran, yogurt, slang, milk, cheese, bread and eggs. If you can eat more of these vitamin rich foods that might help. They’re beneficial anyway.

Avoid salty foods such as potato chips or acidic foods like tomatoes, citrus fruits for a while. Papaya can be soothing in the mouth however.

Ok, let’s get you some help inside your mouth. These are home remedies I used during my Leukemia treatments after some fierce chemo. Hopefully these bring you some relief to get you through the worst of it.

First thing to get is a super soft tooth brush. The bristles are almost as soft as fur and are marketed as brushes for pregnant women because their gums often swell and are sore during pregnancy.

>Brush your teeth with plain baking soda or Arm and Hammer Baking Soda toothpaste. It has a soothing, calming effect.
>Make a mouth rinse of 1 tsp baking soda to 6 oz of warm water. Swish for 30 seconds, then spit it out and repeat several times. Don’t swallow
>Try Salt water rinses with 1/4 tsp salt in 6 oz warm water.
>Try rinsing your mouth with cool apple juice.
>A little honey on the tongue. Allow it to dissolve and spill over your tongue for about a minute. Then swallow.
>I’ve also done the same thing with yogurt. Just let it sit on my tongue before swallowing.
One more product I used was Spry healing mouth rinse from Xlear (you can order on Amazon. Some pharmacies have it but it’s hard to find.) It contains xylitol which can promote healing by preventing bacteria from adhering to the tissue.

Colgate Peroxyl mouth rinse is soothing and helps healing. However you shouldn’t use that for more than 7 days. The peroxide in it can change the normal flora of your oral tissue with some side effects.

Ok that’s a lot to digest! But hopefully in that list something will bring you relief.

A fellow member, @artist01 has also had experience with burning mouth and used a coconut pulling rinse. https://connect.mayoclinic.org/comment/633127/

I forgot to ask, is your mouth overly dry?

Jump to this post

No, it's not dry, usually. I had already tried a rinse with baking soda, but thank you for the others!!! I think it is a little better. I have a very soft bristle brush and also try to carefully floss. I must keep teeth clean if I can. I will also try the honey, as I have some onhand. Thanks again!!! BTW, I am already on two B vitamins daily; I guess due to my age.

REPLY
@dorisjeanne

No, it's not dry, usually. I had already tried a rinse with baking soda, but thank you for the others!!! I think it is a little better. I have a very soft bristle brush and also try to carefully floss. I must keep teeth clean if I can. I will also try the honey, as I have some onhand. Thanks again!!! BTW, I am already on two B vitamins daily; I guess due to my age.

Jump to this post

Ok, good news that your mouth isn’t dry, that can cause a host of other issues. Pretty sure you’re dealing with a prednisone side effect.

I loved feeling the honey on my tonge and honestly, it was either the honey or the yogurt ‘bath’ on my tongue that seemed to make the most difference. I agree, keeping your teeth/mouth clean is very important but definitely presents a challenge when it’s so painful. Besides brushing you could also try using a clean piece of gauze or tissue to wipe the teeth. Gently massaging the gums can help stimulate healing too, if you can bear it.

I think as the prednisone leaves your system you’ll see/feel improvement. Are you on a taper from the prednisone now?

REPLY
@loribmt

Ok, good news that your mouth isn’t dry, that can cause a host of other issues. Pretty sure you’re dealing with a prednisone side effect.

I loved feeling the honey on my tonge and honestly, it was either the honey or the yogurt ‘bath’ on my tongue that seemed to make the most difference. I agree, keeping your teeth/mouth clean is very important but definitely presents a challenge when it’s so painful. Besides brushing you could also try using a clean piece of gauze or tissue to wipe the teeth. Gently massaging the gums can help stimulate healing too, if you can bear it.

I think as the prednisone leaves your system you’ll see/feel improvement. Are you on a taper from the prednisone now?

Jump to this post

Yes,I took only 1/4 pill yesterday and none today, so far. As long as there are no hives, I'm happy!!! I am off benadryl also and on Alegra, but only take one a day. They threw so many meds. at me, my nerves were bad. Slowly getting back to normal now. Thank you for your help!!

REPLY
@nestletea

It has not subsided with any treatments so far and began right after surgical menopause. I cannot tolerate any SSRI's or gabapentin, so that is not an option. I am trialing the clonazepam swish and spit, however insurance does not cover since it is compounded. Mayo Dermatology is also looking at possibly doing patch testing to determine the cause. I am glad yours subsided, it is a frustrating condition, and there are not a lot of treatment options that seem to be effective.

Jump to this post

I was diagnosed withBMS in 1999 and have learned to “deal” with it as it comes and goes.
If I have an episode in the evening I take doxepin.
If I feel an episode coming on during the day I take 5 mg of klonopin.
For me it is usually brought on by stress, excessive talking, lack of sleep.

REPLY
Please sign in or register to post a reply.
  Request Appointment