burning mouth syndrome very severe

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

Hi everyone. So, I see there's a number of studies that are available on the internet on what they call a low level laser. The results in some of the cases appear to be an 80% Improvement in the pain management for burning mouth syndrome. If anyone has had this treatment, and is free of pain more than three months, I'd like to hear from you. Regards Stu

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Hi @ristu, you may have noticed that I merged your post to this existing discussion on burning mouth syndrome so that other people with BMS experience can see your post. Simply click VIEW & REPLY in your email notification to find your post.

Back to you @ristu. Have you been able to find research on it's effectiveness?

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@ethanmcconkey

Hi @ristu, you may have noticed that I merged your post to this existing discussion on burning mouth syndrome so that other people with BMS experience can see your post. Simply click VIEW & REPLY in your email notification to find your post.

Back to you @ristu. Have you been able to find research on it's effectiveness?

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Please add me to any information regarding burning mouth syndrome.

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@ristu

Hi everyone. So, I see there's a number of studies that are available on the internet on what they call a low level laser. The results in some of the cases appear to be an 80% Improvement in the pain management for burning mouth syndrome. If anyone has had this treatment, and is free of pain more than three months, I'd like to hear from you. Regards Stu

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Hi Ethan.
OK thanks. I have found a few small studies that had 80 % success rate. So,,it has some promise. Regards,Stu

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Hello Burning Mouth Syndrome discussion members, you may have noticed I moved the Burning Mouth Syndrome from the Just Want to Talk group to the Skin Health group as Mayo Clinic is classifying BMS in dermatology.

I'd also like to take this time to check in on the members of this group to see how they are handling their symptoms. @mollyquilter @lauren123 @mamajomclane and @donnaclabaugh how are you all handling your symptoms?

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@ethanmcconkey

Hello Burning Mouth Syndrome discussion members, you may have noticed I moved the Burning Mouth Syndrome from the Just Want to Talk group to the Skin Health group as Mayo Clinic is classifying BMS in dermatology.

I'd also like to take this time to check in on the members of this group to see how they are handling their symptoms. @mollyquilter @lauren123 @mamajomclane and @donnaclabaugh how are you all handling your symptoms?

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@ethanmethanmcconkey, could you inform us as to why Burning Mouth syndrome has been moved to dermatology?

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Hi @lauren123 here is more information on the treatment options: https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/care-at-mayo-clinic/mac-20350921

As for the specifics as to why it is classified in dermatology is because the specialists who treat this condition are in the dermatology department. ENT specialists may also be a part of the care team as well.

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@sheetrock0131

I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri’s ct scans.I have been on seziure meds.and many more i can’t even remember.I have been to the best in the Boston area..No to much is known about this condition.I feel for you..I am 62yrs old,just retired and have this to look forward in my golden yrears..This is sad…

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Hi Shellb. Unfortunately, most of the medical practitioners have not heard of burning mouth syndrome, or they do not know how to diagnose it.
I'm in the same boat, as I have tried pretty much everything. I'm waiting to see how people respond to laser treatment. treatment.regards Stu

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I have had 2 Class 4 Laser treatments this week, Monday and today. My schedule has been filled with out of town company this week so hard to determine if any improvement yet….I will advise next week. Joyce

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@mamajomclane

I have had 2 Class 4 Laser treatments this week, Monday and today. My schedule has been filled with out of town company this week so hard to determine if any improvement yet….I will advise next week. Joyce

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Hi Joyce. I hope it works for you. I'm sure everyone's anxious to know. Please post in a few weeks if you see any noticeable results. Thanks Stu.

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Definitely will post

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@mamajomclane

I have had 2 Class 4 Laser treatments this week, Monday and today. My schedule has been filled with out of town company this week so hard to determine if any improvement yet….I will advise next week. Joyce

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Hi Joyce. That would be great. Thanks Stu.

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@ristu

Hi Joyce. That would be great. Thanks Stu.

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I suffered from the BMS non-sense for 2 months. Nothing was helping until I started on cannabis oil (CBD) a week back. Now I feel 90% better. I do get stings, sandy feeling on the tongue and light burning a few times a day but overall I am feeling much better.

Here is some sequence of events
8/Jan/19 – found thyroid t4 was high (1.8) and tsh was suppressed (0). Thyroiditis was detected. No medicine was required and thyroid was only a point higher. Doc asked to just wait it out.
Jan through Feb – Mild pain in the throat continues. Throat hurts, burns and requires constant clearing. Mild burning in the sinus area.
14/Mar/19 – Thyroiditis still not resolved. Further diagnosed with LPR (silent Gerd). Burning in the sinus, throat and lumpy feeling in the throat. Started omeprazole (Prilosec).
16/Mar/19 – Horrible burning in the tongue, mouth. Continued Prilosec for a month as BMS may come from silent GERD. DOC prescribed magic mouth wash with a formulation that contained anti-acid, anti-histamine, anesthetic, corticosteroids and anti-fungus.
Mid Mar – Early April – NO improvement for BMS. Magic mouth wash was helping for a little while.
12/APR/19 – Another ENT visit. Doc suspects jaw grinding is causing BMS. Stopped Prilosec
24/APR/19 – Tested for Hpylori, B-12, folate, Mouth dryness (Nuclear Antibody), fungus, CBC, CRP, ESR, hbg A1c, Fungus mouth culture – All normal. Doc still prescribed Diflucan (antifungal) as sometimes fungus does not culture.
25/APR/19 – Decided to try CBD OIL vs. trying Diflucan.
30/APR/19 – Measurable symptoms of relief from BMS. keeping fingers crossed. My thyroid is still a point higher.

I did not take amitryptiline yet but had the things not improved, that was next for me. I just decided to give CBD a try.

** i feel Omneprazole triggered my BMS but doc thinks that is purely coincidental.

I hope this helps others going through BMS. All the best!!

bhavesh

REPLY
@bhavesh

I suffered from the BMS non-sense for 2 months. Nothing was helping until I started on cannabis oil (CBD) a week back. Now I feel 90% better. I do get stings, sandy feeling on the tongue and light burning a few times a day but overall I am feeling much better.

Here is some sequence of events
8/Jan/19 – found thyroid t4 was high (1.8) and tsh was suppressed (0). Thyroiditis was detected. No medicine was required and thyroid was only a point higher. Doc asked to just wait it out.
Jan through Feb – Mild pain in the throat continues. Throat hurts, burns and requires constant clearing. Mild burning in the sinus area.
14/Mar/19 – Thyroiditis still not resolved. Further diagnosed with LPR (silent Gerd). Burning in the sinus, throat and lumpy feeling in the throat. Started omeprazole (Prilosec).
16/Mar/19 – Horrible burning in the tongue, mouth. Continued Prilosec for a month as BMS may come from silent GERD. DOC prescribed magic mouth wash with a formulation that contained anti-acid, anti-histamine, anesthetic, corticosteroids and anti-fungus.
Mid Mar – Early April – NO improvement for BMS. Magic mouth wash was helping for a little while.
12/APR/19 – Another ENT visit. Doc suspects jaw grinding is causing BMS. Stopped Prilosec
24/APR/19 – Tested for Hpylori, B-12, folate, Mouth dryness (Nuclear Antibody), fungus, CBC, CRP, ESR, hbg A1c, Fungus mouth culture – All normal. Doc still prescribed Diflucan (antifungal) as sometimes fungus does not culture.
25/APR/19 – Decided to try CBD OIL vs. trying Diflucan.
30/APR/19 – Measurable symptoms of relief from BMS. keeping fingers crossed. My thyroid is still a point higher.

I did not take amitryptiline yet but had the things not improved, that was next for me. I just decided to give CBD a try.

** i feel Omneprazole triggered my BMS but doc thinks that is purely coincidental.

I hope this helps others going through BMS. All the best!!

bhavesh

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All, My BMS is almost cured. I don't wake up to burn … i do get it a bit and tongue feels sandy at times but no burns. Please read my earlier post on what I did. thanks much. bhavesh

REPLY
@bhavesh

I suffered from the BMS non-sense for 2 months. Nothing was helping until I started on cannabis oil (CBD) a week back. Now I feel 90% better. I do get stings, sandy feeling on the tongue and light burning a few times a day but overall I am feeling much better.

Here is some sequence of events
8/Jan/19 – found thyroid t4 was high (1.8) and tsh was suppressed (0). Thyroiditis was detected. No medicine was required and thyroid was only a point higher. Doc asked to just wait it out.
Jan through Feb – Mild pain in the throat continues. Throat hurts, burns and requires constant clearing. Mild burning in the sinus area.
14/Mar/19 – Thyroiditis still not resolved. Further diagnosed with LPR (silent Gerd). Burning in the sinus, throat and lumpy feeling in the throat. Started omeprazole (Prilosec).
16/Mar/19 – Horrible burning in the tongue, mouth. Continued Prilosec for a month as BMS may come from silent GERD. DOC prescribed magic mouth wash with a formulation that contained anti-acid, anti-histamine, anesthetic, corticosteroids and anti-fungus.
Mid Mar – Early April – NO improvement for BMS. Magic mouth wash was helping for a little while.
12/APR/19 – Another ENT visit. Doc suspects jaw grinding is causing BMS. Stopped Prilosec
24/APR/19 – Tested for Hpylori, B-12, folate, Mouth dryness (Nuclear Antibody), fungus, CBC, CRP, ESR, hbg A1c, Fungus mouth culture – All normal. Doc still prescribed Diflucan (antifungal) as sometimes fungus does not culture.
25/APR/19 – Decided to try CBD OIL vs. trying Diflucan.
30/APR/19 – Measurable symptoms of relief from BMS. keeping fingers crossed. My thyroid is still a point higher.

I did not take amitryptiline yet but had the things not improved, that was next for me. I just decided to give CBD a try.

** i feel Omneprazole triggered my BMS but doc thinks that is purely coincidental.

I hope this helps others going through BMS. All the best!!

bhavesh

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This sounds so much like myself. My throat and the back of my tongue feels like someone ripped the skin out. I too use CBD oil and it does help with my sleep at night but I’m still burning and very confused and frustrated as to what to do. Within the past year or so I’ve had candida in my mouth, throat and ears. I continue to use magic mouthwash at night to deaden things enough so I can get to sleep. I’ve tried everything suggested. I am fearful that this constant irritation could turn into cancer. It plays tricks in my mind.

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