Need help with Burning Mouth Syndrome.

[SookieBordeaux]

I use Evoxac to help with the dry mouth, and it seems to help my burning mouth syndrome stuff, too!

I will bring this up to my Rheumy but so far all he will prescribe to me is the Placquenil. I have only been on it for a few weeks but it's not helped with anything so far..

Next visit might be the charm though!

SookieB

[A66eyroad]

Our own Cheryl told me about Evoxac, and when I mentioned it to my rheumy he appologized for not having thought of it himself!  Hopefully, your doc will be the same way:  mine always does his very best to make me comfortable.

[Myshkin]

Biotene mouth gel, mouth spray og similar products for stimulating saliva production. Several times a day. It helps! It really does.

[gurs]

I find that the more my mouth/tongue burns, means my yeast issues are getting worse. Even though there it not much evidence of thrush or anything too...think it has to do with my stomach acid/yeast being aggravated.

It seems to make me drier, and then I keep my mouth open all night, which makes it worse.

My hormones too..since my hyster, seems I have this all the time??? common with menopause I guess.

Gursie

[Skylar]

I sometimes get this too, but I have another autoimmune disease in my mouth which really causes me grief when it's bad - Lichen planus.

I can't tolerate mints and strong flavors. I've stopped using all Biotene products - too minty. The only toothpaste I've found that I can tolerate is Tooth Builder by a company called  Squigle  It has a very mild flavor almost like whipping cream and it doesn't have irritating ingredients such as sodium lauryl sulfate that almost all the toothpastes have. It's the first toothpaste that I've loved using - no more pain.  I can't tell you how many toothpastes I've tried including prescriptions - even those that claim to be mild are irritating or minty.

As for gum, I can only tolerate Extra in a few flavors such as watermelon and Trident bubble gum. I do find chewing gum helps.

I hope you find relief -

[reesatay]

I've been using a Supersaturated Calcium Phosphate Oral Rinse that is suppose to help keep the mouth and teeth healthy when you have a dry mouth.  It has a slightly salty taste but not to bad in taste.  I sip a small amount and let it swish around for as long as I can then spit it out.   Not sure if this will help with burning mouth but if some of your pain is from chapped mouth this might help heal the sores.  I like it so far and think it is helping with my mouth soreness.

Initially I was using a sample of an over-the-counter producted called CalphoVess but can't find any info on the web to order it.   I did some research and found a RX brand called Neutrasal and asked my doctor for samples.  The company just sent it to my doctor and I'll pick it up tomorrow.   According to my doctor this is a small company that seems to be willing to work with insurance and help with cost if no insurance. 

Here is a link to a study about Neutrasal:  Efficacy Of A Supersaturated Calcium Phosphate Oral Rinse (Neutrasal®) In The Treatment Of Xerostomia Secondary To Sjögren 'S Syndrome
http://www.neutrasal.com/uploads/Sjogren_s_Survey_Abstract_Lv2.pdf

[SookieBordeaux]

Biotene mouth gel, mouth spray og similar products for stimulating saliva production. Several times a day. It helps! It really does.

I have all these products Myshkin but with Burning Mouth Syndrome MINT is a bad thing and they all contain it.  The more I was using them the worse it was getting.  !!

No MINT, TOMATOES, SPICES, CITRUS, OR CINNAMON.    Even Biotene toothpaste has mint in it so I need to use something different now. 

So far today I am feeling better as I did not put Cinnamon on my oatmeal in the morning like I always do.  I'm not using the Biotene spray or mouthwash. 

This IS what I am doing and it is helping a lot.

I am using Coconut Oil for my lips and tongue as well as biting on Vitamin E gel caps at night.  I do two of them at different times right before bed.  I am using baking soda and water as a mouth wash and trying to find something else as well.  My dentist recommended that to keep the ph balance under control as well.  I'm wondering if using peroxide to rinse is ok to do as well.  Has anyone tried that? 

I feel like my whole body is under construction all over again..

SookieB

[SookieBordeaux]

I find that the more my mouth/tongue burns, means my yeast issues are getting worse. Even though there it not much evidence of thrush or anything too...think it has to do with my stomach acid/yeast being aggravated.

It seems to make me drier, and then I keep my mouth open all night, which makes it worse.

My hormones too..since my hyster, seems I have this all the time??? common with menopause I guess.

Gursie

Gursie, I am using a small humidifier next to my bed that puts out a cool mist.  I was sleeping with my mouth open and so was my husband.  My sinuses were drying out so bad and then the mouth breathing.  This has helped a lot!  I can't live without it now.  My husband has stopped snoring too!  What a difference it has made!    Make sure to use distilled water.   

I went on Premarin because of severe hot flashes and night sweats.  Just could not take it anymore.  I'm 60 now and I know I need to get off the drug but don't want to face going through all those hot flashes again.  I had a hyster in my early 40's but kept my ovaries so I know the scenario well. 

Have you tried the sugar and gluten free diet at all?  I think that is supposed to help with the yeast issues too.  I'm working on that but sugar is the tough one.  They put that in about everything.

SookieB

[SookieBordeaux]

I sometimes get this too, but I have another autoimmune disease in my mouth which really causes me grief when it's bad - Lichen planus.

I can't tolerate mints and strong flavors. I've stopped using all Biotene products - too minty. The only toothpaste I've found that I can tolerate is Tooth Builder by a company called  Squigle  It has a very mild flavor almost like whipping cream and it doesn't have irritating ingredients such as sodium lauryl sulfate that almost all the toothpastes have. It's the first toothpaste that I've loved using - no more pain.  I can't tell you how many toothpastes I've tried including prescriptions - even those that claim to be mild are irritating or minty.

As for gum, I can only tolerate Extra in a few flavors such as watermelon and Trident bubble gum. I do find chewing gum helps.

I hope you find relief -

Skylar,  I will most certainly try to find that toothpaste!  I have some expensive toothpaste from the dentist but of course it is vanilla mint.  I will have to pick up some Trident bubble gum for sure and I do like the watermelon flavor as well.  Mint gum that I have is being shelved! 

SookieB

[SookieBordeaux]

I've been using a Supersaturated Calcium Phosphate Oral Rinse that is suppose to help keep the mouth and teeth healthy when you have a dry mouth.  It has a slightly salty taste but not to bad in taste.  I sip a small amount and let it swish around for as long as I can then spit it out.   Not sure if this will help with burning mouth but if some of your pain is from chapped mouth this might help heal the sores.  I like it so far and think it is helping with my mouth soreness.

Initially I was using a sample of an over-the-counter producted called CalphoVess but can't find any info on the web to order it.   I did some research and found a RX brand called Neutrasal and asked my doctor for samples.  The company just sent it to my doctor and I'll pick it up tomorrow.   According to my doctor this is a small company that seems to be willing to work with insurance and help with cost if no insurance. 

Here is a link to a study about Neutrasal:  Efficacy Of A Supersaturated Calcium Phosphate Oral Rinse (Neutrasal®) In The Treatment Of Xerostomia Secondary To Sjögren 'S Syndrome
http://www.neutrasal.com/uploads/Sjogren_s_Survey_Abstract_Lv2.pdf

Thanks!  I will check this out for sure! 

[Skylar]

BTW, the cheapest source I've found for Squigle Tooth Builder is at DermStore where it's $7.99 each with free (and fast shipping) but you have to buy 3 tubes. If you find it cheaper, let me know.

[finallyadx]

Lots of great info here for you...I had that too a few months back, come to find out I had oral thrush.  This is a yeast infection in your mouth that us Sjoggies can get and it is treated with a rinse by prescription that your dr gives you.

I have heard that having certain vitamin or mineral deficiencies can cause this as well - such as B12 or B6, anemia can also cause this...so you may want to get some bloodwork done to check your vitamin levels in your system.

A proton pump inhibitor is simply a prescription acid reducer that you take as you take any of your other medications.  I was on protonix for a long time, helped with the acid reflux and the throat issues associated with acid reflux. 

Good luck.

[SookieBordeaux]

BTW, the cheapest source I've found for Squigle Tooth Builder is at DermStore where it's $7.99 each with free (and fast shipping) but you have to buy 3 tubes. If you find it cheaper, let me know.

Thanks Skylar!  I don't work so I'm free to scour the internet and will see what I can find! 

Hugs, SookieB!

[SookieBordeaux]

Lots of great info here for you...I had that too a few months back, come to find out I had oral thrush.  This is a yeast infection in your mouth that us Sjoggies can get and it is treated with a rinse by prescription that your dr gives you.

I have heard that having certain vitamin or mineral deficiencies can cause this as well - such as B12 or B6, anemia can also cause this...so you may want to get some bloodwork done to check your vitamin levels in your system.

A proton pump inhibitor is simply a prescription acid reducer that you take as you take any of your other medications.  I was on protonix for a long time, helped with the acid reflux and the throat issues associated with acid reflux. 

Good luck.

The Rheumy did a lot of blood work recently but I don't know if he checked for anemia.  I do take the most expensive Acid Reflux medicine they make.  I have had to have my esophagus stretched twice due to scarring.  I take Dexilant and it is amazing!  I was in really bad shaped before I started using it. 

I have been to the dentist recently and and ear, nose and throat specialist and they did not detect anything unusual, other than the dry mouth.  I had the lip biopsy done and was not surprised when it came out normal.  My symptoms started about 8 or 9 months ago and have been rapidly increasing at the speed of light.  I have never experienced anything like this.  My Rheumy has already put me on Placquenil due to the many symptoms that I have and the diagnosed Neuropathy results.  That's another way I stumbled on the Burning Mouth Syndrome.  It's nerve related with the Neuropathy.  The last two days of adjusting my eating and not using anything with MINT including all the Biotene products has made a 180 degree difference in my mouth!!!!!!  I brushed my teeth with baking soda today and rinsed with baking soda and water.  The less over the counter things I use the better I feel and so does my mouth. 

I found a site that a dentist recommended this solution for rinsing for burning mouth.

Use 1and1/2 Tablespoons of baking soda to a half a cup of water.  Rinse your mouth at least three times a day.  I have been doing it 6 times a day. 

I hope this helps at least a few of you!  It certainly has me!

SookieB

[lighthouse33]

BTW, the cheapest source I've found for Squigle Tooth Builder is at DermStore where it's $7.99 each with free (and fast shipping) but you have to buy 3 tubes. If you find it cheaper, let me know.

I found the Squigle Tooth Builder at dentist.net for $7.52.  It was $7.99.  Of course you have to pay for shipping, so I don't know what the total would be.