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

Has anyone had success with medical marijuana

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I just joined the group today. I have had BMS for over a year. I have also been diagnosed as having Sjögren’s syndrome and celiac disease. I follow a gluten free diet and take a low dose of prednisone and hydroxychloroquine. I use Biotene toothpaste and mouthwash. I tried pilocarpine but hate the side effects. Any suggestions?

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@jjaklee

Has anyone had success with medical marijuana

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I’m 68 years of age and suffer from BMS. I have seen many medical specialists and tried many things. I use a small amount of eatable marijuana in the late afternoon
after any “driving chores” are done. It gives me back some mucous lining in my raw mouth, calms me down, and makes me feel less sorry for myself. Take a tiny bit to see how it effects you and don’t have any alcohol as that magnifies the effect. I find it stays in my system for quite a number of hours so be careful not to use more until it has worn off – don’t drive until next day. If I’ve had a very quiet day sometimes don’t take again ‘TIL second day. It also makes my lips feel less tight and hurtful. It doesn’t “cure” for sure but gives relief for a few hours when you can’t take it anymore. I don’t use any other meds regularly except vitamin B12 and vitamin D3. Hope this assists someone. – B

Liked by jjaklee, patriciao

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@babsguelph

I’m 68 years of age and suffer from BMS. I have seen many medical specialists and tried many things. I use a small amount of eatable marijuana in the late afternoon
after any “driving chores” are done. It gives me back some mucous lining in my raw mouth, calms me down, and makes me feel less sorry for myself. Take a tiny bit to see how it effects you and don’t have any alcohol as that magnifies the effect. I find it stays in my system for quite a number of hours so be careful not to use more until it has worn off – don’t drive until next day. If I’ve had a very quiet day sometimes don’t take again ‘TIL second day. It also makes my lips feel less tight and hurtful. It doesn’t “cure” for sure but gives relief for a few hours when you can’t take it anymore. I don’t use any other meds regularly except vitamin B12 and vitamin D3. Hope this assists someone. – B

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@babsguelph Imagine– pot could be the solution to BMS. It's worth a try, since BMS means endless torture with no medicinal solution otherwise. Thank you!

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@babsguelph

I’m 68 years of age and suffer from BMS. I have seen many medical specialists and tried many things. I use a small amount of eatable marijuana in the late afternoon
after any “driving chores” are done. It gives me back some mucous lining in my raw mouth, calms me down, and makes me feel less sorry for myself. Take a tiny bit to see how it effects you and don’t have any alcohol as that magnifies the effect. I find it stays in my system for quite a number of hours so be careful not to use more until it has worn off – don’t drive until next day. If I’ve had a very quiet day sometimes don’t take again ‘TIL second day. It also makes my lips feel less tight and hurtful. It doesn’t “cure” for sure but gives relief for a few hours when you can’t take it anymore. I don’t use any other meds regularly except vitamin B12 and vitamin D3. Hope this assists someone. – B

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Glad it does something !
I have BMS….3 miserable years of hell and counting. Nothing works,not even clonazepam.
Please check, and test for these causes of BMS.
1) -HSV- 1, HSV-2 blood test and 24 urine study.
2) HEAVY METALS blood test with 30 days on and 30 days off all types of seafood, and WHITE RICE.All can contain mercury.
3) Test for viral infection.
4)test for yeast infection
5)reflux testing.
6)Full range of test for allergies.
All my testing was negative.However, these can cause this condition.
Stu

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@ristu

Glad it does something !
I have BMS….3 miserable years of hell and counting. Nothing works,not even clonazepam.
Please check, and test for these causes of BMS.
1) -HSV- 1, HSV-2 blood test and 24 urine study.
2) HEAVY METALS blood test with 30 days on and 30 days off all types of seafood, and WHITE RICE.All can contain mercury.
3) Test for viral infection.
4)test for yeast infection
5)reflux testing.
6)Full range of test for allergies.
All my testing was negative.However, these can cause this condition.
Stu

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@ ristu I have BMS for 3-4 years, with none of those conditions, and like you, nothing works. The most significant fact here I think is that the medical profession has no idea what causes it. Thanks for info.

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@jshdma

@ ristu I have BMS for 3-4 years, with none of those conditions, and like you, nothing works. The most significant fact here I think is that the medical profession has no idea what causes it. Thanks for info.

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I have had BMS for the past 3 to 4 years and I’ve recently tried this GABA product- One spray sublingual when the burning is worse mid afternoon. But this is just a supplement to my amitriptyline which I take 10 mg first thing in the morning, another 10 mg around noon and 20 to 30 mg just before bedtime.

46DBBA00-781F-465C-874D-DD2940A70E8C

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@patriciao

I just joined the group today. I have had BMS for over a year. I have also been diagnosed as having Sjögren’s syndrome and celiac disease. I follow a gluten free diet and take a low dose of prednisone and hydroxychloroquine. I use Biotene toothpaste and mouthwash. I tried pilocarpine but hate the side effects. Any suggestions?

Jump to this post

I have had severe acid reflux for many years. It has progressed from esophagus to mouth to nose causing burning sensations. I also have Sjogrens that exasperates this condition. I take Protonix bid and Zantac at bedtime and use biotene in all its forms. This has been the most helpful for me and may help you.

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@uncbball

I have had severe acid reflux for many years. It has progressed from esophagus to mouth to nose causing burning sensations. I also have Sjogrens that exasperates this condition. I take Protonix bid and Zantac at bedtime and use biotene in all its forms. This has been the most helpful for me and may help you.

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Just curious as I also have burning mouth syndrome and I feel it’s in my throat as well. Hard to know if acid reflux or BMS. Does your throat burn as well?

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@mamajomclane

I have had BMS for the past 3 to 4 years and I’ve recently tried this GABA product- One spray sublingual when the burning is worse mid afternoon. But this is just a supplement to my amitriptyline which I take 10 mg first thing in the morning, another 10 mg around noon and 20 to 30 mg just before bedtime.

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Is GABA spray a prescription ?

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Destinnana-no I bought GABA on Amazon

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I have Sjogren's and two of the symptoms of this disorder are mouth sores and vulvodynia. My mother also had this and now one of my half-sisters, as well. I had severe mouth sores for several years and none of the dr.s or dentists that I consulted (at least 7) had any idea for this. I discovered 1st that it's common with menopause (why don't doctors know this???) and that taking Vit. B 12 daily has made it normal (unless I eat walnuts, raw pineapple, or strawberries which my allergist says are all extremely acidic and affect the mouth.) Perhaps that would help you; I take the ones that dissolve under your tongue and also Vit. D3 liquid drops as well. For vulvodynia, (also called Burning Vulva) my sister uses a hormone cream in the vagina; because taking Hormone Replacement Therapy triggered breast cancer for me 20 years ago, I keep my own vulvodynia at bay with one of the oldest SSRI's (Selective Seratonin Reuptake Inhibitor) called Amitriptyline) and it keeps this from causing the pain I had without it. I hope you have some relief from the pain soon!

Liked by patriciao

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l have had this for 10 years and can get no help

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@mollyquilter

I have Sjogren's and two of the symptoms of this disorder are mouth sores and vulvodynia. My mother also had this and now one of my half-sisters, as well. I had severe mouth sores for several years and none of the dr.s or dentists that I consulted (at least 7) had any idea for this. I discovered 1st that it's common with menopause (why don't doctors know this???) and that taking Vit. B 12 daily has made it normal (unless I eat walnuts, raw pineapple, or strawberries which my allergist says are all extremely acidic and affect the mouth.) Perhaps that would help you; I take the ones that dissolve under your tongue and also Vit. D3 liquid drops as well. For vulvodynia, (also called Burning Vulva) my sister uses a hormone cream in the vagina; because taking Hormone Replacement Therapy triggered breast cancer for me 20 years ago, I keep my own vulvodynia at bay with one of the oldest SSRI's (Selective Seratonin Reuptake Inhibitor) called Amitriptyline) and it keeps this from causing the pain I had without it. I hope you have some relief from the pain soon!

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Hi, thanks for responding to my message. How much vitamin B12 and Vitamin D do you take daily? Thanks Stu

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@destinnana

Just curious as I also have burning mouth syndrome and I feel it’s in my throat as well. Hard to know if acid reflux or BMS. Does your throat burn as well?

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Yes, back of mouth, throat, and uvula. Stu

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